Zoe's 1p36 Blog

Here's to 2012!

2012-01-13T15:09:00.015-05:00

Here's to Hoping it's a Good Year!

2011 Ended With Another Hospital Stay

We visited my brother and his family in Philadelphia for Christmas. After the 12 hour car ride, we were relaxing at Joe and Kristen's house and hoping to have a nice visit. Within the first hour of being there, Zoe broke her arm! Of course it turned out to be complicated and needed surgery. Surgery led to Zoe developing an allergic rash which looked like a burn and was extremely itchy. 8 of the 11 days we were in Philadelphia were spent at the Children's Hospital- not exactly what we had in mind for our holiday.

Christmas Day in the hospital.

Some Fun Time Too

Unfortunately, Zoe did not get to spend much time getting to know her cousin Sydney and Sydney did not get to see much of Zoe. The days that Zoe was out of the hospital, she was in a lot of pain and very unhappy. Ailsa did get to spend some time with Sydney and learned some important new skills from her like growling! Sydney quickly picked up Ailsa's "milk" sign and by the end of the visit she signed "milk" while I was nursing Ailsa.

The last two days of our trip we were able to get to the park. The weather was beautiful and the girls had fun.

Ailsa and Amanda

Zoe loved the merry-go-round but Ailsa wasn't so sure.

Home Again, Home Again

It has been a rough couple of weeks. Zoe was itchy from the rash and complained that her arm was hurting her. We were surprised she was still having so much pain until she had the cast and pins removed last Monday. They discovered that one of the pins had been rubbing Zoe's arm and had created a deep opening. Everything else looked fine but Zoe still has two small holes from two of the pins and one larger hole. She is much more comfortable now that the pins are out.

Hospital Again, Hospital Again

Zoe was in the emergency room last week with what looks like a gastro bug. We then had to keep her hydrated with NG feeds. Hmmm, so far 2012 is not shaping up as we would like it to be...

School Again, School Again

Zoe finally returned to school yesterday and had a good day. Today she was all smiles when she came home from school. It has been a month since she has been in school so I expect it will take a little adjusting to get back into the routine. Unfortunately Zoe has appointments at the hospital on Thursday so she will miss that day and school is closed on Friday. Perhaps it is good to start with a shorter week anyway while Zoe adjusts.

Zoe Interprets for Ailsa

I am trying to keep this post brief but there has been so much going on. One last thing:

Ailsa still insists on signing "milk" to mean mommy. I don't mind, I actually think it is kind of cute. A friend was over the other day and Ailsa signed "milk." The friend said, "Do you want milk Ailsa?" Zoe signed "mommy" meaning "She wants mommy." Later, Ailsa was eating and kept signing milk. Zoe then signed "eat" meaning "She wants more to eat." It is amazing how Zoe picks up on what Ailsa means and is able to help others understand what Ailsa wants.

Sigh....I don't know why I should be surprised when I have the two most amazing girls in the world!

New Skills and Silliness

2011-11-28T13:07:00.009-05:00

New Skills

Zoe has learned some new important life skills recently that have been fun to see develop. The first she learned all on her own- she routinely goes into the bathroom and unrolls the toilet paper roll while laughing to herself. For a long time the bathroom has been a favourite hang out spot for Zoe. Perhaps one day I will get frustrated when I go to the bathroom and the toilet paper is all over the place but for now this new skill just makes me smile.

Zoe caught in the act.

Zoe fleeing the scene of the crime.

The second new skill is that Zoe is now able to open kitchen drawers!!! For years we have been showing Zoe hand over hand how to open the drawer. She never had the strength and coordination to do it on her own and would frequently ask us to help her. We have been encouraging this skill since this is an important skill to develop. The other day Zoe walked right over to the drawer and opened it all on her own! She was very proud of herself and did a great job leaning away from the drawer so it did not hit her head. Of course now that she has mastered this skill we have to finally install child locks. Poor kid, she finally figures out how to open the drawers and now we are going to lock them on her!

Play Time

Zoe and Ailsa have developed a really sweet relationship. It is great to see them rolling around together playing. Zoe will purposely roll herself to wherever Ailsa is. Zoe has done an amazing job keeping her legs still and not kicking Ailsa and being careful with her body. This shows tremendous control for Zoe who is naturally so wiggly and active. The girls have also begun playing with toys together. So far they are both good at sharing.

Taking turns with the drum.
Rolling around before bedtime.

Take My Picture Too!

While I was taking a picture of Ailsa at dinner the other night, Zoe asked that I take her picture too. Then she kept smiling for the camera and signing more. She is such a funny girl.

"Look at me, aren't I cute too?"

Namaste

I have been doing Pilates or Yoga every morning while Ailsa plays on the mats beside me. The other day I saw Ailsa watching the TV and when the guy said "Namaste" and put his hands together, Ailsa imitated him. It was very cute and funny. Overall, Ailsa has been much more interested in watching TV than Zoe ever was although recently Zoe has been more interested. We've decided to take the girls to the Muppet Movie since they both like watching the screen now. That should be fun.

Ailsa doing her yoga while watching the TV.

An Awesome Day

2011-11-15T11:32:00.002-05:00

Daddy's Surprise

Ailsa decided to get a surprise for daddy (yes, that's right she thought it up herself, it is amazing how savvy our girls are at using our credit cards...) She bought us all tickets to see old hockey players get inducted into the hockey hall of fame and then play a game. The show also included a live band performance and a light show. Both girls were mesmerized by watching the game. Ailsa especially loved the laser light show. Zoe loved the popcorn! We brought Zoe's highchair seat so she could sit on her own in the stands. Zoe is able to sit and enjoy looking at things for longer periods of time now. We all had a great time and it was so nice having a fun family outing.

It all ended on a hilarious note when Gavin went to change Zoe who had a huge blow out bowel movement all over herself. I stayed in the seats nursing Ailsa who had been too distracted to eat during the show. After about 15 minutes an usher asked me to leave. I pointed out that I had too much stuff to carry on my own and that I was nursing my baby while waiting for my husband and other daughter. He disappeared and 5 minutes later a woman with security showed up. She approached me slowly while saying, "Mam, you have to leave now, this area is closed." I pointed out to her that there was no way I could physically carry the highchair, infant car seat, three bags, and the baby by myself and that I was waiting for my husband to return. She immediately looked more relaxed and said, "Oh, that is why you aren't leaving. No problem, I can help you." Apparently they had stopped Gavin from coming back to get me and asked him, "Are you with the woman who is breastfeeding?" Perhaps they were afraid I was staging a sit in! Security was very nice once they realized we were just trying to meet both the children's needs while carrying a lot of stuff. They even walked us all the way to the exit doors, how nice of them :)

The Day Got Even Better

While I gave Ailsa a bath, Gavin popped Zoe up and down out of Ailsa's eyesight. Both girls thought this was a hilarious way to play peek-a-boo. After giving us kisses and singing the goodnight song, Zoe headed off to bed while I finished bathing Ailsa. Ailsa looked right at me, signed "milk" (which is how she says mom). I said, "Yes, Ailsa what do you want? Do you want milk?" To which Ailsa very deliberately signed, "Zoe" and smiled. I called Zoe to come back and when Ailsa saw her, she immediately started giggling and again signed, "Zoe." Zoe was giggling and signing, "Ailsa." This was the first time Ailsa signed Zoe and Zoe was quite excited to see her sign. Zoe thinks it is hilarious when Ailsa signs. So far, Ailsa consistently signs daddy, milk, and Zoe. She is a very smart little baby although we can't convince her that my name is not milk...

Happy Halloween!

2011-11-01T13:38:00.009-04:00

Happy Halloween Everyone!

Zoe Gives Ailsa a pumpkin de-gooping lesson:

Zoe: Step one- get a feel for your pumpkin.

Ailsa: Yep, I see what you mean, sister.

Zoe: Step two- think about how you want to go about this process while giving mom a stink eye for taking so many pictures....Hmm, Ailsa I think that is more of a sticking out your tongue look rather than a stink eye, but I think mom gets the point.

Zoe: Step three- dig right in there and get out all the goop and seeds.

Ailsa: Stick my arm in where??!?!

Zoe: Here, sister, take a break and have a snack while I do the work.

Ailsa: Yum! I just started eating solids this week!

Zoe: The most important step is to have fun!

Early Morning Hospital Thoughts

2011-10-30T21:39:00.002-04:00

Zoe has had a rough couple of months. She has ongoing diarrhea, fatigue, and chronic pain issues. She has been hospitalized a couple of times and has been back and forth many times for appointments. She has missed as much school as she has been able to attend. With all of this going on, Gavin and I are struggling to fit the fun and normal activities into Zoe's day. We are exhausted and overwhelmed at times. Every time it seems we are getting back into a normal routine, Zoe ends up in hospital and everything is in chaos again. Zoe got out of hospital yesterday morning and we decided to take a weekend off. We turned off the phone and only did fun things like decorating pumpkins and deciding on Halloween costumes. I have many cute pumpkin scooping pictures to post but for tonight I want to post something a little more on the serious side. We have another hospital appointment in the morning and we are feeling scared about what we might hear. I wrote this the other day:

Early Morning Hospital Thoughts

I've always been most comfortable in hospitals late at night or very early in the morning.
Same as airports.
There's a deserted, but active feeling about the place.
And everyone you pass gives a knowing half smile like they are saying, "Yeah, I'm stuck here too."
There is a peaceful calm in the hallways as I push Ailsa with one hand and balance a tray with coffee cups and food in the other.
I try to focus on the calm feeling.
It reminds me of sitting in the Buddhist Temple room at the Museum of Fine Arts in Boston.
Or a really, really old church somewhere in Scotland or England. I don't remember the name of it or where it was but I remember that feeling.
Calm.
Peace and quiet.
Everyone coming together for the same reason.
Wandering around. Smiling at strangers. Thinking, "Oh, you too?"
I try not to think about Zoe seizing. Turning pale. Lying there limp.
Zoe in and out of hospital, back and forth to appointments.
For every day in hospital or at an appointment there is a green square on the calendar. Non appointment days remain white.
The last few months there are far more green squares than white.
We see all these dots connecting.
A picture emerges that I try to push out of my mind.
In that picture my beautiful, brilliant and wonderful daughter has some serious health needs. We are faced with decisions to keep her safe. They can not get IV lines into her- she was poked six times in two days. What do we do about that?
She still has diarrhea. She is so tired all the time. She has missed as many days at school as she has attended.
What do we do about that?
They are sending us to the oncology clinic on Monday for test results.
What if all these dots suddenly connect and make sense to those doctors?
Is Zoe getting sicker or just having a really bad year?
She is so strong. So determined. So beautiful. Why doesn't life give her a break? She has to fight every day of her life just to be active, why make it harder?
Zoe tells me she is scared and sad and angry. I hold her as she cries. Tell her I feel the same.
And my heart breaks.
No child should have to go through all that she does.
No parent should have to see their child go through this.
I refocus my mind- think about the day. Stop thinking about the big picture.
Picked up some pumpkins on the way home from the hospital. We are going to have fun scooping them out with the girls.
For the moment, all is calm. Gavin and Zoe sleep. I take a hot bath. And Alison- wonderful, generous Alison cleans our house, does the laundry, and plays with Ailsa.
Thank you for this moment to myself.

Last Days of Summer and School!!!!

2011-09-19T15:32:00.021-04:00

Family Camp

After seven weeks of ongoing fevers, dealing with the PICC line, and monitoring Zoe constantly- Zoe finally started to feel better. Despite fevers, we decided to go to family camp at an Easter Seals camp. We had a great time and Zoe's fevers finally started to go away. The whole week was full of activities and there were tons of people willing to lend a hand. The girls had a great time and we plan to return another year.

Zoe rode in a canoe for the first time!

We were never sure how to get Zoe into a canoe but they had these bean bags at camp that worked great. Zoe and Gavin canoed over to the beach while Ailsa and I drove there. We played in the sand for a bit, visited with other families, and then we all had lunch there. After lunch, Zoe and Genevieve canoed back to camp while Gavin drove with Ailsa.

First Week of School!!!!

Zoe started at Sunny View school and is loving it! The teachers have a great way with communicating with us and we are all getting used to each other and the school routine. Zoe comes home excited and smiling every day.

Zoe signing Ailsa on the first day of school. The only complaint Zoe has had about school so far is that she misses Ailsa and wants her to be her school friend.

Zoe's first bus ride! Zoe gets picked up around 8am every morning and dropped off around 4pm. So far she has been coping well with the long bus ride. It helps that she is in love with her bus driver!

Why Can't Ailsa go to School?

It has been difficult for Zoe to understand (or perhaps she understands but wants a different answer) why Ailsa can not go to school with her. A few days before school started, I put Ailsa in the exersaucer for the first time. Zoe became very excited and was rapidly signing about Ailsa. It took me a while to figure it out but finally I figured out what Zoe was saying:

"Ailsa standing, Ailsa walking, Ailsa Zoe school friend."
Translation: "Ailsa is now standing which means Ailsa can use a walker which means Ailsa can go to school with me and be my school friend!" Zoe told me I was correct with the translation by smiling, laughing and repeating her signs over and over and over again over the next few days. When she gets home from school she still runs over to Ailsa to touch her hands and face and laugh with her. Hmmm, have you noticed I haven't posted anything about her missing Gavin or me?

Mom's a Canuck!

After living here for five years and having permanent residency, I finally had a chance to take my citizenship test in June. It was actually the day before Zoe got really sick and I kind of forgot about it with everything that happened after. In late August I got a notice to appear to take my citizenship oath on September 9th. We decided Zoe would have a better day at school (they are not big fans of small children vocalizing, playing loud toys, and throwing those loud toys off of their trays during the ceremony). Gavin and Ailsa went with me and Ailsa was very well behaved- she slept through most of the ceremony and then was invited to sing the national anthem at the front of the room. I noticed they were picking all the cute people/kids for the photo op. So who knows, perhaps Ailsa and Gavin will appear in some Canadian Citizenship pamphlet or webpage somewhere. Which is kind of funny since neither of them was there getting their citizenship!

Look at those good looking Canadians!

Getting Better

Zoe has been feeling better, getting stronger, eating better, sleeping better, etc in the last couple of weeks. We went away last week to a cottage that someone has donated the use of to Sick Kids families. It was beautiful and so fun to get away. Zoe did such an amazing job walking at the Petroglyphs park- she walked 400 meters! We had an appointment with her complex care team today and we are all hoping for a healthy and happy winter.

Just One More Picture

I can't resist posting this one because it just cracks me up....

Zoe: "Mom, if you take one more picture I'm going to . . .

Ailsa: "Don't do it sister! She only tortures us with so many pictures because we are so cute and she loves us so much!"

Small Victories

2011-08-14T14:43:00.005-04:00

Today is not a good day. Zoe is very sleepy and fussy. I just fed her a lunch of jarred baby good because she does not have the strength to chew right now. I held her head up with my left hand and shovelled food with my right. As I held her forehead, I realized she has a fever again.

Some days are better than others.

It has been six and a half weeks since Zoe almost died.

Six and a half weeks of constant monitoring and constant worry.

It's beginning to take it's toll.

Zoe's lost weight. She's lost muscle mass in her legs and they are contracted more than before. What does it all mean?

We went camping last week and had to return home after a day. Zoe usually loves camping but was having a really hard time. She also started having a reaction to the tape holding her PICC in place. So we had to come home to take care of that.

While we feel disappointed, frustrated, sad, and angry that we did not get the vacation we desperately need right now, we recognize that we had to try.
Because this is the way we want to live our life- finding the positive moments amidst all this negative.

Which brings me to writing this post.

Someone asked me what I want to do to take care of myself during all of this and I knew the answer right away- get a massage, exercise, take a long, hot bath. Unfortunately, I literally do not have 30 minutes in a row to myself right now. So the next question is- what can I do to take care of myself right now?

It took me a while but I finally came up with writing. I used to write all the time. It's my way of processing and I can do it for five minutes at a time if that is all the time I have.

This is what I wrote today:

Small Victories

Small victories. That's what I'm going to focus on.

An hour spent outside doing physio. Nursing Ailsa with one arm and rearranging toys for Zoe with the other.

Fresh air. Sunshine. Vitamin D.

Tomorrow we will spend all day at the hospital. But today is ours. Zoe running around in her walker while Ailsa sleeps and I eat lunch.

So much focus on Zoe's health. Assessing skin condition, breathing, temperature, daily dressing changes.

The balance has shifted. Always before we focused on having a life. Having fun. Seeing the positive. Now it seems we struggle to get past all this medical. Just to get through the day.

That is not healthy living.

Have to get back to life.

To joy.

To laughing.

Just 'cuz.

How do we get there? From now to then? From here to there? From A to Z?

Zoe is more than a collection of symptoms. Her life has to be more than just this.

We know that. But how do we get there?

We start with small victories:
Zoe playing the keyboard while I just sit and watch.
Eight loads of laundry in two days.
A real dinner made even though Zoe will not eat it right now.
The sound of Zoe's laughter at our surprise when she correctly identified the star and hexagon.

Refocus on the good. Let go of the difficult. Stop thinking about what life could be like because this is our life.

And life is good.

Last Day of Preschool

2011-08-01T21:39:00.009-04:00

Zoe's last day of Preschool was last Thursday. We decided to give her a break from school for August and she will start Kindergarten in the fall. We felt mixed emotions on Thursday. Zoe has outgrown what the school had to offer in the last few months but since she loves school so much, we had her continue going there. Even though we are very excited about Zoe's new school and know this is a good change for her, we were still sad to leave Ryerson behind. They had been so fantastic with Zoe and she loved going. It is hard to believe she is ready for a big girl school already!

Zoe signing friends Thursday morning before school. She signed the other day that she is all done with her friends at Ryerson and asked if she will have friends at her new school. We are confident Zoe will make lots of new friends. There was also a little girl at Zoe's new school on the day we took the tour who declared, "When Zoe goes to school here in September, we are going to be best friends." So at least we know she has one friend waiting for her.

A Mother's Right to Buy Matching Outfits

Yep, that's right, I am doing what my mother did and every mother before her- I am making my girls wear matching outfits. They looked so darn cute today when I dressed them up to go visit daddy at work. Gavin has worked 12 hours shifts for the last four days which means he leaves the house at 10am and does not get back until midnight. Zoe was really missing him today and just sobbed on my shoulder while signing "daddy." So we made dinner and went to eat with daddy at work. Luckily it was a slow day in the emergency room and Gavin was able to spend lots of time with us. Zoe was in a much better mood tonight after getting her daddy fix.

Speaking of daddy fix- I am absolutely amazed at how Ailsa really notices when Gavin is not around. She lit up when she saw him today and was chatting and smiling away. Gavin is much better at settling Ailsa to sleep at night since when I hold her all she wants to do is eat. We are all glad that Gavin does not have another shift until Thursday.

My two lovely girls looking cute in their matching outfits. The sock on Zoe's arm is to protect her PICC line. Thankfully, Ailsa does not have one of those to match her sister! Zoe was too interested in Ailsa to look up at the camera.

It's all fun and games until your sister bites your head. Zoe is trying to be gentle but gets overexcited at times. I don't think she actually hurt Ailsa but Ailsa obviously did not like Zoe's unique way of kissing her head.

Readjusting and Moving Forward

2011-07-28T09:46:00.002-04:00

Zoe Health Update

Zoe continues to improve every day. She is still not herself but is full of smiles and laughter. She is very motivated to gain back the strength and skills she lost. We see her working hard again to feed herself, walk for longer periods of time, and stand on her own with balance support. We saw the OT and PT yesterday and they are both happy with how she is doing but did point out some areas where she has lost some strength and flexibility. So we will endeavor to fit her stretching and standing routine back into our very busy days.

Zoe still spikes fevers off and on and continues to cough up mucus from her lungs. We are doing lots of chest physio and have seen improvement in her chest. We had lots of medical appointments the last couple of weeks to look at what happened, how to prevent it from happening and how to deal with it when it does happen again.

What Happened?

We now know that Zoe had a bladder infection which caused the fever which caused the prolonged seizures. During the seizure, she aspirated even though we did not see her choking and her vital signs remained normal throughout. We saw urology and they are doing some tests. While waiting for the tests, Zoe is on a daily antibiotic to prevent urinary tract infections. The urologist wants to make sure there is not something going on that is causing the infections. So we will have a busy month of August with more tests and appointments.

Life Moving Forward

Gavin and I are still feeling a bit overwhelmed and shocked from this latest experience. Zoe has never been so acutely sick and it scares us how quickly this happened. We would feel reassured if her doctors could promise us this won't happen again. However, they all seem to think it will happen again and all we can do is plan how to cope with a long seizure to decrease her chance of aspiration. We have changed some of her seizure meds and our emergency plan. She also still has the central line (PICC line) in her arm for emergencies. The PICC can not be left in long term so we are looking at removing that in the next few months. We are hoping Zoe will not need a central line of any sort since the next option involves surgery to put the line in. Zoe's complex care doctor knows her well and feels comfortable watching and waiting to see if Zoe does need this or if (hopefully) she does fine without it.

Life Moving Forward While Holding Our Breath

Gavin and I feel overwhelmed with the amount of monitoring Zoe is currently needing. We check her temperature regularly since she is still spiking temps, she is on so many meds and fighting us every day on taking them, we continue to monitor her respiratory and cardiac symptoms like we usually do, and the seizures continue every day. So far we only see quick, absence seizures but we have seen a longer focal seizure. It is difficult not to worry when we put her to bed with a slight fever and we have seen several seizures that evening. Ailsa has me up regularly in the night so I check on Zoe when I get up with her.

We have some fun trips planned for August. We are going to go ahead with our plans and just pack some emergency supplies. I am really hoping Zoe continues to do well and we have a great August. She does have periods of time where she acts like her old self- running around the house, bossing us all around, and laughing at something she is not supposed to be doing. So I know in time she will recover from this. I just hope it does not ever happen again.

Zoe is Home

2011-07-12T21:17:00.004-04:00

Grandad's welcome home sign for Zoe

Just wanted to let everyone know that Zoe is home now. We were discharged on Friday with NG feeding tube and PICC line. Zoe was drinking well enough to trial taking out the NG on Sunday and has been doing ok since then feeding wise. So hopefully we won't have to put that back in. As for the PICC line, as her pediatrician said today at our appointment "No doctor who knows Zoe is going to want to be the one who signs the order to take that line out." So for now, until she is fully recovered, we will keep the central line for emergencies.

Zoe is still running fevers and not feeling great but we see improvement every day.

For now we are all feeling very physically and emotionally exhausted from all of this. Zoe tells me she is scared and sad and it just breaks my heart.

But we are all strong and we will get through this. Gavin and I will feel better once Zoe has recovered and hope that she is never this sick again.

For now I feel like I am holding my breath...

Zoe doing better

2011-07-03T12:45:00.008-04:00

Hey all. Zoe is doing much better today. She was weaned off BiPAP last night and went on to CPAP (http://en.wikipedia.org/wiki/Positive_airway_pressure ) and is now just on blow by oxygen (moisturized oxygen blown close to her face). She got a PICC line (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter )
yesterday at 1:00- they started talking about it at noon so things went amazingly quickly, which was both stressful and comforting. So now she can get her bloodwork through that and we don't have to worry about IV's going bad. She is sleeping comfortably and has not got any sedation for some time now. She still has a nasal trumpet (http://en.wikipedia.org/wiki/Nasopharyngeal_airway )in to help keep her nose open and to facilitate suctioning out any gunk she can't clear from her airway. She looks much better and much more peaceful. We'll try and get a photo up soon. So far there has been no evidence of increased seizures (knock on wood). Genevieve, Ailsa and I are staying at the Delta Chelsea down the street so we all had a much better sleep last night (I got more sleep last night then I had had in the previous three nights combined, which was nice). Our friends Melissa, Riann and Dane have been very helpful, as has Zoe's excellent respite worker Alison. My dad Alan was also a big help on the first day Zoe was admitted as a baby watcher. My colleagues in the ED have been very supportive in me flexing my work hours, providing medical information and just being generally supportive. Thanks to all.

Anyway, just a quick update. I couldn't figure out how to get the links highlighted for you, so if you are interested you can just cut and paste for the time being- maybe Genevieve can fix it for me later : )

Zoe in ICU

2011-07-02T11:45:00.003-04:00

Zoe Has a Cold

On Tuesday, we noticed that Zoe was coming down with a cold. Just a simple, stupid cold started all this. She had a runny nose and slight fever. She had a pretty good night- just woke up once with a fever and needed to be cleared out from all the mucus. She had a good day Wednesday and we expected her to possibly go to school on Thursday.

Emergency Room Visit

At 4am on Thursday, Gavin and I both woke up because we heard Zoe breathing kind of funny. We figured she was clogged from mucus or had turned herself face down. Gavin went to check on her. I heard him calling her name repeatedly which meant she was having a seizure. Zoe was having a tonic clonic seizure (http://en.wikipedia.org/wiki/Tonic%E2%80%93clonic_seizure )which means her whole body was shaking and she was not conscious. Because we were not sure how long she had been seizing, we gave her the emergency seizure medication and started getting dressed to take her to the hospital. Zoe continued seizing all the way there and was still seizing when I dropped Zoe and Gavin at the emergency entrance. The seizure lasted a total of 30 minutes that we know for sure plus however long she was seizing before we found her.

Zoe was actually doing better after the seizure and we planned to take her home. However, while waiting for medication and discharge papers, Zoe began seizing again. This seizure lasted 45 minutes despite five doses of emergency seizure medications. The doctor said Zoe had started to go into status epilepticus which is serious (http://en.wikipedia.org/wiki/Status_epilepticus ).

After Zoe finally stopped seizing, she was doing ok but they wanted to keep a close eye on her and planned to admit her to the regular floor. While waiting for the transport person, Zoe began signing that her chest hurt and was working really hard to breathe. They took an xray and while waiting for results, started oxygen and Ventolin treatments.

The doctor called us over to show us the xray results (never a good sign) and showed us that at 5am Thursday morning, Zoe's lungs looked like they always look- just a little white shadow in the left lower lobe. By 7pm, her lungs were covered in white shadows which meant there was mucus/fluid in both of her lungs. They were concerned that her lungs changed so quickly and thought it might be that she aspirated mucus during her 45 minute seizure. The medications they gave her made it harder for her to protect her airway so she may have sucked in mucus as a result.

Intensive Care Unit

As it stands, Zoe needed to be put on a breathing machine since she was having such a hard time breathing and her oxygen levels were dropping. She is on a less invasive breathing machine called bi-pap and they are watching her closely to see if they will need to be more invasive and fully intubate her. My understanding is that with bi-pap, Zoe is still initiating breathing on her own and the machine is blowing air to make her lungs expand more as she breathes. With full intubation, the machine will be breathing for Zoe.

Current Issues

Right now Zoe has three big issues they are figuring out:

1- Keeping a close eye to see if her lungs are improving. If not, they will intubate her and start washing her lungs out with saline to clear the mucus out. They are giving her some time to see if she can clear her lungs herself. So far we have seen slight improvement on her xray and they have been able to decrease the pressure and oxygen levels on the breathing machine.

2- Zoe stopped peeing on her own and they aren't sure why. So they are giving her medications to make her pee. They don't want extra fluid sitting in her body since it is not good for her lungs. And obviously, not peeing is not a good thing.

3- Zoe is very difficult to get an IV into. They have already gone through several IVs and are constantly poking her for bloodwork. So they are talking about inserting a central line (http://www.medterms.com/script/main/art.asp?articlekey=14394 ) but they are some risks with that so they are waiting for some culture results to estimate how long she will need IV antibiotics for. If it is going to be several weeks, then they will have to insert a central line.

Zoe is Miserable

Right now, Zoe is pretty miserable. The machine is obviously uncomfortable, she is being poked every few hours and suctioned every couple of minutes. They are deep suctioning her through her mouth and Zoe hates anything in her mouth. Today they are giving her a medication to help her sleep which is a good thing. She needs to rest so her body can stay strong but she feels so miserable she just lies awake irritated.

We are going to get a hotel room a block from the hospital so that I can spend more time with Zoe. Right now it is difficult because Ailsa is not allowed in the ICU. They are worried about her being exposed to something and getting sick too. So we plan to have people at the hotel with Ailsa so I can run over to see Zoe and then run back to nurse Ailsa and get rest when I need to. Ailsa has been doing a great job with all of this but we could see how irritated she was after spending two days with various strangers holding her and not on any sort of routine. So we plan to have her spend time with a regular group of people we trust and have more of a routine during the day so she can sleep well at night. Which means we can get a little more sleep too.

We will try to post updates when we get a chance but just wanted to let people know how Zoe was doing.

We appreciate everyone keeping us in your thoughts.

That was Then, This is Now

2011-06-26T21:37:00.008-04:00

Who Does Ailsa Look Like?

We get asked this a lot. Zoe looked so much like Gavin, people never seemed to ask. It looks to us that Ailsa is looking more and more like Zoe as time goes on. When I look at them, I can see that they are sisters. We took some photos of Ailsa today in the same outfit and on the same chair that we took pictures of Zoe when she was around the same size...not the same age as you will see but the same size.

Ailsa at six weeks old.

Zoe at six months old.

Zoe at five months.

Ailsa at six weeks.

Unfortunately we weren't able to get any pictures of Zoe looking forward at the camera. Most of the pictures from this photo session look like this- with Zoe screaming her head off. Poor tortured child- why couldn't she just sit still so her crazy parents could take at least 50 pictures of the same thing? Got to love digital cameras...

Sign for Ailsa

We have been holding off assigning a sign for Ailsa. We are hoping Zoe will come up with one. She has come up with several signs for important people in her life including "girl" for her main teacher Alison and "boy" for her teacher Anthony. After much encouragement, she did a scratchy beard sign for her teacher Moe. Even Uncle Andy (who only visited for one night last November) got a sign- the letters "A N." Some of our friends don't care too much for the signs they were given like "boy smells good" for one friend and "hurt lip" for another. But hey- we can't control Zoe's signs!

So far Zoe signs "mommy baby" and sometimes "mommy baby all done" for Ailsa. Not sure if she is calling her mommy's baby or saying the baby that was inside mommy and is all done being there. The other night we talked about coming up with a different sign for Ailsa and Zoe kept signing her word for Ailsa being hungry (biting first two fingers) and baby. After discussing how Ailsa will not always be a baby, Zoe signed for a few minutes before we realized she was asking us a question. We finally figured out that Zoe was asking/saying when Ailsa is all done being a baby, she will still be Zoe's sister. To which we said, "Yes, of course. Ailsa will always be your sister." So then Zoe started calling Ailsa "hungry sister" instead of "hungry baby."

Hmmm, we might keep working on that sign since I am not sure how Ailsa will feel about being called the hungry sister when she is going through that awkward adolescent phase.

Missing Zoe

Writing on the blog tonight was my way of going through cute pictures of both my girls because I am really missing Zoe tonight. Gavin is working all weekend and I am studying for my Canadian Citizenship test so we decided to have Zoe go to Safehaven/ The Zoe Hotel for the weekend. I know that Zoe has a great time there but I still really miss her when she is not home. I miss seeing and hearing her around the house. I miss kissing and holding her. I miss our conversations that constantly blow my mind with how clever my little girl is. And I missed tucking her into bed tonight. But after waiting four years to take this test, I want to make sure I am prepared. And it is difficult enough finding any study time with taking care of Ailsa all weekend.

When I talk to Zoe on the phone, she just laughs and I can hear her playing with her toys in the background. So I know she is having a good time.

So, goodnight Zoe. I love you and look forward to seeing you soon.

Helpful Big Sister

2011-06-22T16:07:00.006-04:00

Sisters

Just as we predicted, Zoe has been an amazing big sister. She does a great job letting us know when Ailsa is crying and Zoe wants us to pick her up (as if we couldn't hear Ailsa screaming her head off- wow can she cry loudly!) Zoe does a great job sharing her toys and loves to touch Ailsa's head and hands. Before Ailsa was born, Zoe was convinced Ailsa would come out walking and has been disappointed that this was not true. So lately I have been holding Ailsa up and fake walking her which Zoe thinks is just hilarious. Zoe has also generously offered for Ailsa to use her walker when I have explained that Ailsa's legs are too weak to walk on her own. Good thinking, Zoe- great idea since your walker helps you but I think Ailsa might just be a little too small yet.

Ailsa Wants to Eat

The other night Ailsa was being fussy when I was trying to nurse her so I decided to put her down, eat my own dinner, and then try again. While I was at the table with Zoe, Zoe kept signing something I couldn't quite make out. Zoe was signing something about me, then biting her fingers, and something about Ailsa. I thought she was saying Ailsa was crying (she was) and I was mad at her. But after a few minutes we figured out Zoe was saying she could tell Ailsa was hungry because she was eating her hand so she needed mommy's milk. We had been talking the other day about what it could mean when Ailsa cries- how can you tell if she is hungry vs tired vs bored. I guess Zoe was really paying attention and has figured out that when she is rooting on her fingers, she wants to nurse. Zoe is so smart and caring, it is sweet to see how she is trying to help us take care of Ailsa.

Father's Day

Gavin had to work on Sunday, so the girls decided to celebrate Father's day with him on Saturday instead. We had a great day at the park that has a splash pad. Zoe is really loving being outside now (which is a huge change from the days where she would be overwhelmed if we even opened the curtains in the house). Zoe did a great job signing "water" when she wanted to run around in the water and a very clear "all done" and "cold" when she was finished.

We then headed home for a delicious phone ordered meal of pizza. When discussing if we would go out to eat, eat at home, or just get a pizza, Zoe immediately smiled and laughed at the idea of pizza. So how could Gavin say no to that even if he didn't necessarily want pizza?

Ailsa Rebecca

2011-05-21T18:49:00.007-04:00

Zoe's Little Sister

Zoe would like to introduce you to her new baby sister, Ailsa Rebecca! Ailsa was born May 15th at 3:22pm. She weighed a whopping 8 pounds 3 ounces- a full three pounds more than Zoe had! Length was 50cm/almost 20 inches. Both mom and baby were doing so well that we were able to go home that evening. The midwives have come to the house every other day to check on us.

So far Ailsa is nursing well and has even gained back a little bit of the weight she lost. It has been so amazing to have such a typical newborn baby experience this time. We find ourselves laughing at ourselves when we act like new parents who have never done this before. Initially Ailsa needed a lot of holding or else she would start crying. And boy, can she cry loudly! Zoe would then sign "baby sad" and start crying too. Luckily we remember all the sensory things that helped Zoe calm herself and Ailsa seems happy with the same techniques- lost of bundling, swinging, holding, and the weight bag on her chest.

So far Zoe seems unsure of what to make of Ailsa. She gets upset when she cries most of the time and then other times she just laughs at her. She finds it very funny when I am feeding her and will keep signing "baby eating." She loves touching her face and head. When we were giving Ailsa her first bath, Zoe helped by washing her back with a washcloth. She also had a sympathetic look when Ailsa was crying and reached out and gently stroked her hand. It was very cute.

Ailsa is settling down and learning to sleep in her own bed. She has taken lots of naps in the last two days which gives mommy lots of rest time.

Zoe playing with one of her big sister presents.

Daddy makes holding his two girls look easy.

School News

2011-05-13T17:00:00.005-04:00

Zoe's School for the Fall

We've now completed the process for enrolling Zoe in school for the fall. It is hard to believe she will be starting full time Kindergarten this year! After finding out that the Integrated Therapy Program (at Bloorview, the local pediatric rehab hospital) would not accept her, we were feeling very anxious about Zoe's placement. But we are quite excited about the school Zoe will go to.

The process here is that we have to officially enroll Zoe in the local school, they have to recognize that they can not meet Zoe's needs, and then we have to have an IRPC meeting (Identification, Placement, and Review Committee). At this meeting they identify Zoe as having "exceptionalities" and therefore qualifying for special needs assistance/programing. The hilarious thing is after the meeting Zoe came out having a "physical disability" on the paperwork and that was it. Since we know that speech delay and communication disorder are other diagnoses we found it very interesting that they only focused on the physical. I guess they have their reasons because certain schools accept certain disability labels. So we had to just sit back, sign the paper, and hope they had a good school in mind. After waiting a few months, we finally heard back from them and they recommended the school that we actually wanted as our first choice. We were worried they would try to send Zoe somewhere with less support and we would have to fight with them but in the end it all worked out nicely. Wow- imagine that for a change!

To Include or Not Include

Ideally, both Gavin and I feel strongly about Zoe attending an inclusive setting but still getting all the support she would need. Unfortunately, we know there is simply not enough money in the public system to give Zoe everything she needs without sending her to a special program. Our attitude is, as long as Zoe is getting what she needs- that is what is important. And Gavin pointed out that being with the children with different levels of needs is an inclusive setting since Zoe will learn from some of her peers and be a role model for others.

It is such a huge relief for us to know that Zoe will be getting what support she needs in order to thrive and learn. We know Zoe is capable of so much and it was great to have a meeting with staff who agreed!

Sunny View Public School

We went to check the school out earlier this week and are so excited about everything we saw. It literally had everything I could dream of wanting in a school for Zoe. They have such a great staff ratio-classes are usually 5-6 students with one teacher and two aides. Equipment lined the hallways, including "non-essential" equipment like adapted bikes and trikes! They have two swimming pools (the smaller one is a warm pool for students who can not be in the cooler pool), a regular gym, a physio gym, an art room, a "Snoozelen" sensory room, a fully accessible outdoor play area and a great atrium where the kids all meet up in the mornings and afternoons. The atrium has tables with adapted switch toys (Zoe loved this), a fully accessible tree house, and a fish pond! If you want to see pictures of the school, you can check out their website and go under the special places and programmes area:

http://www.tdsb.on.ca/SchoolWeb/_site/viewitem.asp?siteid=10217&pageid=11994&menuid=13576

Zoe Gets In Line

My favourite part of the whole day was watching Zoe explore the school in her walker. Everywhere was completely accessible. At one point a line of children walked/rolled by and Zoe saw a gap in the line, so she just got in line behind a couple of kids in walkers. The teachers all thought she was adorable and said, "Come on Zoe, you can come to my classroom." Well, that is all the encouragement Zoe needed, she walked right into the classroom with the rest of the kids! Looking around we could see that some of the kids are ahead of where Zoe is at, some where she is, and some behind which is perfect. We want Zoe to be at a place where she can learn from her peers as well as act as a role model. While her preschool has been amazing with her, it has become clear recently that Zoe is "the disabled" student and the school is not really sure the next steps for helping Zoe grow and develop. So it is perfect timing for her to start in her new school for the fall.

Zoe's New Best Friend

There was a little girl who was quite taken with Zoe and we saw her a few times throughout the day. At one point she asked me if I had a baby in my belly and when I said, "Yes" she asked if it was a boy or girl? I said we didn't know yet. She said she thought it was a girl baby because that is what she wanted when her mom recently had her baby brother. I said, "We will find out soon when the baby comes out" and she quickly replied, "When Zoe goes to school here in September and we are best friends, she can tell me if the baby is a boy or girl."

Well, good to know Zoe already has a friend lined up!

The Zoe Hotel Part Two

2011-05-05T13:08:00.005-04:00

Pictures From Zoe's First Sleepover

Zoe painting a flower pot. Funny thing is that Zoe's flower is growing really well. When we told the staff this, they said they haven't had any luck with any of the flowers they planted. Zoe must just have that special touch (perhaps it is all that extra spit on her hands).

I had already posted about a respite place, Safehaven, that we recently tried out with Zoe. The first sleepover went really well. Zoe seemed to have a great time and was well cared for. So we decided to try it again this week but this time we sent Zoe for two nights.

Zoe immediately smiled and laughed as we entered the building, which we took to be a good sign. She immediately walked off in her walker to check everything out and say hello to staff. Zoe was already tired from a busy day at school so we stuck around to feed her before handing her off to staff. We explained to Zoe that this time Zoe would be spending the entire next day and the next night at Safehaven and Zoe kept laughing and smiling at this idea. So we felt pretty good when we left.

I called periodically to check on Zoe and heard what she was up to. The staff love how mobile she is in her walker. Most of the kids there are not able to ambulate at all. We were told Zoe was eating and sleeping well.

When we picked Zoe up on Wednesday she was busy playing with a staff member. I jokingly said, "Hey Zoe, chopped liver is here." She walked over to us and signed that she wanted me to pick her up. She was all smiles and laughing and after a few minutes of mommy snuggles she indicated she wanted the staff (who happened to have strings on her sweatshirt- how can I compete with that!) to hold her again. Zoe was in a great mood all afternoon and seemed to be happy to be home. She kept walking around, looking at and touching her toys. We joked that she seemed to miss her singing dog more than she missed us!

We are feeling really positive about Zoe's stay and using the respite centre in the future. We were so tired (I have been up for six-eight hours every night with contractions but no real labour) that we didn't even do much while Zoe was gone. We went out to eat, which is always a nice treat but didn't make it to the movie. My contractions are worse in the evening so I didn't feel much like sitting in a movie theatre while cramping every 4 mins. We were hoping the baby would come when Zoe was away so that would make getting to the hospital easier for us. But I guess babies don't always follow our plans!

It is great to see how secure Zoe is and how much she is able to be independent. We know that Zoe needs lots of different people in her life to meet all of her many needs. I think dropping Zoe off for the sleepover was much harder on me than it was on her! I think she really enjoyed herself and did not seem to miss us much at all. When we have done overnights before, the respite worker would come to the house and we would leave. Zoe seemed to miss us more then perhaps because she was not distracted by being around other kids, lots of staff who are kissing her butt, and new toys to play with.

We don't have any other overnights planned in the immediate future but it is really good to know that this is there for us if we need it.

Seizures in the Night

2011-05-02T10:50:00.009-04:00

Zoe sleeping in our bed after a rough night.

Zoe has been sleeping much better for the past month or so. We think it is a combination of her seizures being under control, the melatonin we started giving her, and the strict behavioural approach we have continued with sleep habits. It has been great to put her to bed at 8pm and not have to get her again until the morning. There are many nights I can hear her rolling around but she is usually able to get herself back to sleep again. I can not even explain (unless you have lived through hearing your child scream for hours on end for months on end you may not fully understand) how wonderful this new sleeping pattern has been. We are all in a better mood from sleeping more. Zoe is back to laughing, playing, and loving school. She does not fall asleep at meals and she does not melt down in the evenings. Sleep is such a beautiful thing.

The last two nights Zoe has had a hard time due to seizures. She woke the other night and we heard her rolling around for a while and then she suddenly started screaming. As best we could figure out based on what Zoe was signing, she saw something that scared her and either her mouth was hurting (she grinds her teeth during seizures so this is possible) or she was afraid whatever she saw was hurting her mouth. Zoe is very sensitive about anyone or anything touching her mouth so we can see how this would scare her. Zoe was not able to calm down on her own so we took her into bed with us (as seen in the picture above). Last night Zoe again woke and while I was in changing her and getting her back to bed, she had a seizure and was very scared. After talking to her for a little while, Zoe was able to calm down and fell back to sleep in her own bed.

We are not sure why the seizures suddenly increased but she may have a touch of a cold or something brewing that is causing it. She seems to be sensitive to changes in her body like that. Zoe is able to sign that what she is seeing is in her head and she seems to understand this but is still scared by it. I can only imagine how scary hallucinations must be. Hopefully they will come under control again soon.

I Can Do it Myself!

Meal time has been messy with Zoe insisting on feeding herself. Her grasp has really improved so that we no longer have to hold her hand on the spoon. Instead we hold the end of the spoon to help guide it to Zoe's mouth. Zoe is doing a great job coordinating scooping and getting the spoon to her mouth while opening and then swallowing. She insists on feeding herself every meal now.
Sometimes we have to encourage Zoe to remember to slow down and swallow. Some meals she gets so silly she starts to laugh and everything just comes right back out. Certain foods are just too hilarious for her not to laugh at!

Zoe's Perfect Seat

Zoe has really enjoyed my growing belly. She finds it is perfect for sitting on and talking to me face to face. She also loves snuggling with me right now. I hope she is too distracted by the fun baby to play with to get upset when mommy's belly turns soft and is not such a fun seat.

Chewing Gloves

You can see in the picture above that Zoe is wearing soft splint gloves on her hands. These gloves are usually used to help encourage children to open their hands. Zoe does not need the gloves for this but her OT recommended them to keep her skin safe from her constant chewing. We have tried redirecting Zoe's chewing to specially designed chew toys or anything else she will put in her mouth. But at the end of the day, Zoe loves to chew on her hands. Instead of spending energy trying to break this habit and recognizing that Zoe would win that battle anyway, we have decided to look into keeping her skin intact. We tried bandages but Zoe quickly soaked these and then she had wet bandages sitting on her skin all day. Zoe does not typically break the skin when she is chewing but the constant moisture is breaking down the skin between her thumb and index finger. So these gloves are perfect since they are made of neoprene and dry quickly.

So far Zoe's left hand looks great and the right is improving slowly. We still tape socks on Zoe's hands at night to prevent her from chewing too much but she has become very clever at getting the socks off no matter how well we tape them. For those of you who have little ones who also love to chew- these are called benik splints and we have been happy with them so far. We are going to buy another pair so that when Zoe soaks the first pair (which happens by the afternoon) we can put a dry pair on. We really like the fact that they do not impair her using her fingers and hands. We do take them off for eating but that is because eating is such a messy time.

What's New?

2011-04-24T12:55:00.009-04:00

Conversations About Baby

Zoe has been getting more excited and less patient as we get closer to the baby's due date. The other day we washed and folded all of Zoe's old infant clothing and blankets. Zoe was so excited she kept signing "baby." When it became clear that the baby was not coming, she got very upset. Zoe can sometimes perseverate on a certain thought or action. She kept repeatedly signing "Mommy all done baby. Zoe wants baby. Zoe angry at mommy." She was so upset that I finally left her alone with Gavin so that she could focus on something else other than me and the baby. We didn't talk much about the baby for a few days to give Zoe a chance to focus on other things.

Yesterday our friend Riann came over to visit with Zoe. Riann is "on call" to rush over here to take care of Zoe while Gavin and I go to the hospital. Zoe has been told this so she got very excited when she saw Riann. She kept signing baby and walked to the back of the house to where we are setting up the baby's room to show Riann. She didn't get upset or angry, but did keep signing about the baby. She shouldn't have to wait much longer since I am 37 weeks this week. We'll see...

Zoe and mommy talking about the baby. It's so hard to wait when you are 4!

Zoe finally strong enough to face front in the car!

We've kept Zoe rear facing in a special car seat that allowed her to stay rear facing despite her growing height. Her paediatrician recommended keeping Zoe rear facing longer due to her low muscle tone and her light weight. Now that Zoe is taller, staying above 20 pounds on a consistent basis, and has increased her muscle tone we were finally able to face her forward! So far Zoe thinks it is very funny to be able to see us while riding in the car. She is not able to grasp toys long enough to keep them on her lap so this has been frustrating for her. Before, we cut rest the toy on her lap and the back of the seat prevented it from falling. Zoe loves pulling on strings so Gavin tied a few ribbons for her to play with. So far this seems to be working.

Obviously Zoe is quite comfy in the car these days! And she looks like such a big girl facing forward. Zoe insisted on wearing this Maple Leafs outfit to school. It was the day after the Leafs definitely lost any chance to get into the playoffs and Zoe kept signing that the outfit would make daddy happy.

Zoe's New Highchair

Zoe has been flinging herself around in her old highchair to the point of almost knocking the chair over. After much thinking and debate, we decided to go with another commercially available high chair that straps on to one of our dining chairs. The new high chair has a five point harness so Zoe is not able to fling herself as much. It is also higher in the back so if she does bang her head, it is on the soft cushion. We chose another high chair that is light and easy to travel with since we still need to bring a chair any time we eat out. We looked at some other special needs options but felt this was the best option at this time. Zoe seems to feel secure and happy in the chair. She flings herself less (which means we are happy since the flinging behaviour and chair thumping sounds were starting to drive us mad!) and focuses on her self feeding that we continue to work on.

Zoe modelling her new chair.

Standing, standing, and more standing

We try to fit free standing practice into Zoe's daily routine. This is actually harder than it sounds since we are always working on so many things at once. We were disappointed and frustrated when Zoe's weekly physio stopped due to her not making enough gains. So we are determined to keep up the hard work at home and give her a chance to once again show everyone that she can do more than the low expectations everyone seems to set for her. For the most part, Zoe enjoys free standing at the couch even though it is a lot of work for her. She is not able to maintain standing for long but we expect her strength to increase over time.

We are also working on training Zoe's brain to be able to side step while holding on to the couch. Cruising comes so easily to most kids but Zoe's brain just doesn't understand how to do it. We had to train her brain the same way with walking forward and now she is a great walker. So we know that eventually cruising will feel less scary for her and come more naturally. It will take all of us some time and a lot of patience but we will get there eventually.

Zoe standing free style at the couch while playing. She is even using her hand and arms to prop herself these days which is a great step forward.

Any time I asked Zoe to look at me for the picture she would get so excited that she would quickly lose her balance. But she did a great job trying to catch herself.

And What is Gavin up to These Days?

Gavin has become a real handy man around the house. We both want to get several projects done before the baby arrives. The big project (putting in a large sink/raised tub to bathe Zoe in) has taken a lot of our time, energy, and money but Gavin has been learning a lot about plumping. In the midst of working on several projects, the kitchen sink (which admittedly had been leaking for months now) suddenly started pouring out water. So Gavin quickly fixed that.

I just needed to put in a brag here about how amazed I am at all Gavin can handle. He continues to do most of Zoe's physical care since I am not able to easily lift her at this time. He also continues to work 12 hour shifts in the emergency room, cook most of our meals, do all of the grocery shopping, and has been fixing up the house to get us ready for the baby. And after all of this, he still has time to push Zoe on the swing for 45 minutes when she demands it! He is such an amazing dad and an amazing husband and I know how lucky I am that we are in this together.

Gavin underneath the kitchen sink taking out the old pipes. This (like most projects these days) ended up taking more time and being more complicated than expected. But now we have a wonderful new tap that doesn't leak!

The Zoe Hotel

2011-04-16T11:05:00.004-04:00

Safehaven

This week Zoe had her first sleepover at what we are calling "The Zoe Hotel." Safehaven (http://www.safehavenproj.org/) is a place that provides respite care for children with complex medical, physical, and developmental needs. We first checked out Safehaven two years ago but found it wasn't quite right for Zoe. Since then, Safehaven has hired on new staff and has students come in at various times to provide activities. While Zoe was there earlier this week, she made a flower pot and went on a walk outside to the local mall. They also did a great job of letting Zoe spend lots of time walking around and exploring. Zoe is better able to clearly communicate her wants now which makes it easier for them to understand what she needs. All of the workers commented on how much Zoe loves walking and being active and does not like spending a lot of time in her chair. They were also amazed with the amount that Zoe eats! We tried to warn them about her eating so they would not cut her off early and leave her hungry. Apparently Zoe clearly indicated she wanted more to eat and they were surprised how much she can pack away for such a little girl.

I felt very emotional about leaving Zoe at a respite place. While I know that we need respite and I do not feel guilty about taking it, it is hard to constantly look to strangers for this support. We have a great respite worker who comes to the house once a week. And Zoe just had a nurse start coming a couple hours twice a week. But even with that, it does not allow time for things other than getting things done around the house, grocery shopping, etc. Like today- the respite worker is here and I will be finishing our taxes. Not exactly a relaxing afternoon! We have gone away for an overnight a few times with past respite workers but it gets very expensive. We have to pay the respite worker plus hotel and eating out costs. Safehaven is partly funded by the province and there is a very small fee ($20 a day) for families to pay. Much more affordable than having someone here at the house.

I know as Zoe grows older we need to look for places like this more and more. Right now Zoe's physical care is very taxing on me. I am nine months pregnant this week and continue to have some minor issues which lead to me feeling dizzy and fainting. Which makes Zoe's care that much harder. Gavin has been doing most of her physical care and I can see the strain on him. Sure, Zoe is a small person. But try lifting her hundreds of times a day, feeding, bathing, changing her, etc. Zoe's care will only get more difficult the bigger and stronger she gets. She is strong enough to fling herself out of your arms, but not strong enough to sit on her own.

I am very happy that Zoe had such a good time at Safehaven. The last time we tried it (I think in a lot of ways we weren't ready and their programming was a little different) Zoe did not enjoy it at all. So we haven't tried it since. But it is good to know that she had a great time. She was all smiles when we picked her up. She was very tired but I think that is because she never naps as well at new places. There is too much going on and she doesn't want to miss anything. Apparently she slept great at night so that is good.

Accepting Help

I have completely accepted that we need a lot of help raising Zoe. We have learned to ask for financial, physical, or emotional help when we need it. But sometimes I do find it difficult to have so many people involved with Zoe's care. Sometimes I think how wonderful it would be to just stay at home with her and not feel overwhelmed by her needs. I imagine what it would be like bringing her to the park and watching her run around on her own. Or telling her to go play while I clean the house. I imagine the sounds of the occasional family guest or friend visiting rather than the constant workers coming in to help. It has been difficult for me to admit that I can't give Zoe everything she needs. As a mom, that is a hard thing to know about yourself.

Then I tell myself to suck it up. How lucky I am. Zoe does go off and play in her own way. And at least I live somewhere where help is given to us at a low cost. Everyone needs help in raising their kids. That comes in different forms and every way has different obstacles. So, I know we are lucky.

Plus Zoe is a really cute kid so she sucks in people who want to help. The Safehaven staff were very disappointed we were picking her up after one night. Most parents leave their kids for a week or two at a time. Next time I think we may try two nights, but Zoe is a bit young yet for a longer stay. She did make a friend there and had fun rolling around on the mat grabbing his toys and him grabbing hers. So hopefully she will continue to have a fun time there.

In the end that is what matters- Zoe is getting what she needs. And there is no human out there who could possibly meet all of Zoe's needs without completely burning themselves out. Yes, I am a super-mom, but even superheros have their limits.

A couple of Zoe recommended charities

2011-04-10T14:58:00.006-04:00

Hey all,

I know there are a gazillion worthy charities out there, but I thought I'd let you know of a couple of "Zoe approved" charities to add to the list-

Easter Seals- Zoe gets money ever year from Easter Seals for both diaper costs ($400 a year) and equipment costs ($3000 a year). They paid for her bath seat and will (once we apply for it) assist with costs for a ramp/stair lift (this summer) and van modifications (next year maybe?) They also provide for Zoe to go to camp once she is six and until she is eighteen. This summer we are all going to family camp, which we are looking forward to. I used to work at an Easter Seals camp in Alberta (Camp Horizon) so it will be both weird and fun to go to one with Zoe. Genevieve has already been to the mom's retreat last summer, which was a great break for her. I was a little bit jealous. Only a little bit though :)

Easter Seals is having their Ontario telethon today, so if you feel so inclined please donate at http://www.easterseals.org/

According to Easter Seals a family who has a child with a physical disability faces $40 000 in medical expenses and loss of income a year. That certainly holds true for us- in Zoe's short four years we have had over $65 000 in uncovered medical costs, not including loss of income. So every little bit we can get from Easter Seals helps- the same is true for countless other families with kids who have disabilities.

March of Dimes- provides $15 000 in a once off contribution for van modifications/ramp for house access, which will be very handy when we get around to looking at those things. These are crazily expensive modifications, so it is great the March of Dimes recognizes this and helps out.

There are several more charities aimed at assisting the families of special needs kids to cope with expenses, but a lot of them are income based and do not take into account the amount spent on medical expenses (which for us is considerable). So if you are looking at donating this year and want to keep Zoe in mind these two are good ones to consider. And at some point, Zoe may just be having her own completely non tax deductible "ramp" fundraiser coming up at some point too, so keep that in mind : )

We Regret to Inform You...

2011-04-05T15:21:00.004-04:00

We just got some disappointing news in the mail. We applied for Zoe to attend an Integrated Therapy Program for school this fall. Zoe will be in Kindergarten and this school has Junior, Senior Kindergarten and first grade. It was a very time consuming and frustrating all along and we had an idea that they may not accept Zoe since all along they were saying things like "Zoe has too many needs. Zoe is non-verbal. etc" They even started saying Zoe's vision impairment was too great. We felt like they kept finding excuses for not accepting her. But we still hoped this would work out because they have so many resources at their centre and we know Zoe would really benefit from the program.

So today's letter states, "We regret to inform you that Zoe does not have a place with our program."

And that got me thinking about all of the times we have heard these regretful statements since Zoe was born. And how frustrating that is as parents. I just can't see how anyone can look at Zoe and not see her potential. It's there- I know it is. It just takes a lot of work to bring it out. And I guess they are looking for easier kids that they can check off as making significant gains as the year goes on.

Significant gains...that is another regretful statement we have heard recently:

"We regret to inform you that Zoe is not making significant enough gross motor gains to qualify for physiotherapy at this time." So what- she is too disabled for therapy? What kinds of kids do you want then?

So many regretful statements...

"We regret to inform you that your beautiful baby we just whisked off to the NICU without you even getting a chance to hold her has some sort of serious problem."

"We regret to inform you that your perfect two week old is missing a part of her chromosome and will probably never walk, talk, sit on her own, smile, respond to you, eat on her own, etc."

"We regret to inform you that we must file AMA (against medical advice) in your child's chart because you are refusing to put in a gtube when she is only 2 1/2 weeks old and we haven't even given her a chance to show us she can eat."

"We regret to inform you that this restaurant does not have a supportive highchair so you must carry yours everywhere you go."

"We regret to inform you that this building is not accessible which means lugging your child and all her equipment up and down stairs. Oh and by the way, it also means that she may not have anywhere to walk around. But that is ok, just stick her in her chair where she belongs."

"We regret to inform you that our recreation facility no longer has disability pass rates which means your family can no longer afford to swim and play here. And yes, regretfully we are still the only fully accessible facility near you."

"We regret to inform you that yet again this restaurant, museum, airport, etc does not have adequate change tables which means you get to change your daughter on the floor."

"We regret to inform you that we want your child to start using augmentative communication but we have no intention of working with you or helping you with that process. Good luck on your own."

"We regret to inform you that your insurance does not cover this drug, this piece of equipment, etc."

"We regret to inform you that your child is too able bodied to qualify for respite at our facility."

"We regret to inform you that your child is not able bodied enough to qualify for our program."

On and on the negative statements come at us. And in my mind I constantly compose my response:

"I DO NOT regret to tell you that my daughter is an amazing and wonderful person who has already made gains and reached goals you told us she would never reach. AND she is only FOUR!"

Music and Baby

2011-03-28T11:10:00.007-04:00

Our Little Musician

After noticing Zoe's love of music, our respite worker, Alison, has brought her keyboard and guitar a few times for Zoe to play with. Zoe has shown a real interest in keyboards lately. Interestingly enough, she only likes keyboards that sound like real pianos, not toys. It is amazing to watch her play. She has never just banged away at the keys but instead purposefully pushes the keys one by one while listening to what she is playing. She is quite serious about it and then all of a sudden will throw her head back and laugh. I guess it is time for us to look for a real keyboard since the little toy one we have is frustrating Zoe now that she has played the real thing.

Feeling the Baby

Zoe loves to feel my belly and wait for the baby to kick her. Once it does, she will laugh and laugh. There have been times when Zoe is feeling my belly and will sign "Baby sleeping." And I think, "It is?" Sure enough, Zoe is right every time- the baby is not moving and therefore must be sleeping! Of course when the baby kicks Zoe, she will often sign "Baby walking." Well she is sort of right- the baby is using its legs and feet.

Zoe waiting for the baby to kick.

Zoe laughing after being kicked repeatedly.

Zoe also loves talking to the baby. The baby usually responds to Zoe's voice and will kick away when she is talking or singing to my belly.

Zoe laughing and signing that the baby kicked her face.

My Girl

2011-03-12T16:29:00.003-05:00

More and More Zoe

Zoe is feeling more like herself these days. She still has some tough behaviours going on like more arching, throwing herself around, and both of her hands are raw from chewing. She still has days where she is more tired and a bit cranky, but definitely smiling and laughing a lot more. She even told her first joke in three months the other day! Of course it, like most of her jokes, was making fun of daddy. I love this picture of her because she has this totally carefree look on her face like she is saying, "Isn't life grand?"

Happy 4th Birthday!!!!

I can hardly believe my little girl turned four in February. Zoe was still having many tough days and nights so we kept it low key. We went swimming with just the three of us in the morning, back to the house for a nap, and then we went to Chucky Cheese for dinner. We had gone once before and Zoe seemed to enjoy it but did not really pay much attention to the robot Chucky. This time Zoe was fascinated by Chucky. Any time the curtain opened and he started singing, she wanted to pause in her eating and go up to see him. She played a few of the games but it was pretty crowded and she was tired so we didn't stay very long. It was a nice way for us to spend time as a family and celebrate.

A few weeks later, we had her school party. Zoe had missed a lot of school and was struggling with wanting to be at school when she was there. So we waited for her to feel a little better before having the party. Zoe is pretty much back to her old self at school now which is great. When I picked her up the other day she signed that she was all done with mommy and wanted to stay at school. Yup- that is my Zoe!

This year for the school party we decided to do something different than have ice cream like we usually do. All of the other kids love ice cream but Zoe never eats it. So Gavin had the great idea to try a cake made out of cheese (one of Zoe's favourite foods). The other kids were a little confused at first but then they seemed to really enjoy the cheese and cracker snack. And it was really rewarding for us to see Zoe eating the same snack as her peers and having a good time.

Gavin's "cheese cake"

Back to Walking!

Zoe is back to wanting to walk constantly and has even projected her love of walking on to her thoughts about what the baby is doing. According to Zoe, the baby is currently eating and walking inside mommy's belly. I wonder if she imagines the baby is walking around with a pony walker in there or does it ambulate on its own like her friends at school? We also started discussing how the baby will come out of mommy's belly and Zoe has decided that is easy- the baby will walk out! Hmmm, that sounds like a much more fun plan than what I was thinking...

Zoe walking around the house and playing with her favourite switch toy. Oh how I have missed the sounds of "You know you make me wanna shout...." playing over and over again as she hits the switch!

Catching Up

2011-02-20T08:37:00.011-05:00

It has been a crazy couple of months. More crazy than usual. With a new diagnosis and lots of testing for new symptoms as well as two hospital stays and 3 or 4 clinic appointments every week. We have not had the energy to think let alone write. And I will be honest- this newest bout of worry and testing left me in a dark place mentally. Actually that is not true. It was more seeing Zoe suffer. Seeing her cry for hours on end and not smile. Seeing her so sedated she could not even lift her head or open her eyes for three days straight. It just broke my heart and anything I would have written during that time would have been dark thoughts. I was not able to see the good side.

But now, we are starting to get to our new normal. Zoe is doing much better. It still breaks my heart that she is not back to who she was before all of this happened, but more on that later.

The Good, The Bad, and The Beautiful

Along with many new appointments, Zoe had her regular check ups and we have received some really great news lately.

The Good

Cardiology- Zoe's cardiologist said that her echo was pretty much the same as last time and he is so happy with how stable she is that we don't have to see him for a WHOLE YEAR!!!! He also mentioned that if children are going to have serious problems from LVNC, it usually happens by now so he believes that Zoe will keep on going on this level for "a while." I am not sure how long "a while" will last but I'll take it!

Neurosurgery- Due to Zoe's change in symptoms, her MRI of her spine that was supposed to happen this summer got moved up to the end of January. The good news is that the syrinx (collection of fluid) in her spine is pretty much as big as it was last year. Because the neurosurgeon feels that her spine is stable, he said we can wait THREE YEARS!!!!! for the next MRI and check up with him!

Chest Team- Despite Zoe being hospitalized twice and having viral infections that normally cause pneumonias in a child like her, Zoe has been doing really well lung wise. She had her normal three month check up with the chest doctor who felt that Zoe's lungs are stable enough that she no longer needs to be followed by the chest team!!! We will continue the puffers and daily chest physio until May. We will stop the puffers in May but continue the chest physio and see how Zoe does. The complex care team who normally follows Zoe will follow up if Zoe suddenly starts getting infections again and will refer us back to chest if need be. We are very hopeful that now that Zoe is older and stronger the pneumonias will continue to stay away. We have been very happy with how her chest has done this winter.

4 Year Check Up- Zoe had her 4 year check up at her paediatrician's last week. As always, she did amazing with the shot. I think the resident was surprised at her lack of crying. The paediatrician feels that Zoe is doing really well except sleep issues (more on that later) and won't need to be seen for six months for a weight check. Since we will be bringing the new baby in at that time, we figure we can just throw Zoe on a scale at the same appointment.

The Bad

Epilepsy.

I hate that word.

Ever since Zoe was diagnosed with 1p36 I have been in fear of that word. When other parents talked at the conference about their child's seizures I tried not to listen.

Both Gavin and I have worked with children who seizures won't stop with medications or brain surgery. Sometimes those children seize themselves into comas and eventually death. That is what epilepsy means to me.

Gavin and I have both suspected that Zoe might be having seizures for a little while now. When did we first suspect? the doctors all ask. I can't really put my finger on it. It was more of a feeling. But I reassured myself that I was just afraid and Zoe was fine. She had an EEG when she was around 18 months that was normal.

So we were safe from seizures.

Most seizures start in infancy. Zoe is almost 4 years old.

So we were safe from seizures.

On January 5th Gavin called me at work and said what I knew was coming, "Zoe just had what I am pretty sure was a seizure. It was classic Genevieve, it was definitely a seizure."

I did what I do in any Zoe crisis, I started thinking like the medical professional I am trained to be. I called her doctors, asked when we could get seen, should we just go to the emergency room? It was decided that we would see a neurologist in the community, hopefully the next day.

That night was awful, Zoe kept having seizures and at times stopped breathing. We brought her into our bed just to keep an eye on her. The next morning we thought "No way are we waiting for an appointment, we have to take care of this now."

I called Zoe's paediatrician, it would be at least three weeks before seeing a neurologist. No way were we waiting that long. I called Zoe's complex care doctor and said, "We are bringing Zoe to the emergency room in the next hour." He agreed with the plan and said he would do everything he could to speed up our seeing a neurologist.

We were quite impressed with how quickly things happened that day. Within six hours, Zoe had an EEG, an neuro-exam, an official diagnosis of epilepsy, and a medication plan. An EEG measures brain waves. Even if Zoe did not seize during the EEG, the brain waves will be different if she is having seizures at all. Zoe's EEG showed spikes in her left frontal lobe. Which confirmed the type of seizures we were seeing. So given what we were seeing and what the EEG showed, the neurologist was certain that Zoe was having seizures.

Now the tricky part- around the same time we started suspecting seizures, I noticed that Zoe's eyes would "jiggle." Zoe's eyes never did this before. When Zoe was in the hospital in December, I noticed her eyes were really jiggling around. I thought perhaps it was fatigue induced. I pointed this out to the neurologist and they were very interested in Zoe's eyes. They asked repeatedly, "Are you sure that this is a new symptom? Has Zoe ever been diagnosed with nystagmus before?"

Gavin and I know enough about health care to know it is not a good sign when the doctor gets interested in a symptom. But the neurologist just said, "Call Zoe's opthomologist right away and tell him." So we figured, probably just her eye muscle getting weak. Zoe has dry eyes from not producing tears, perhaps the cornea has weakened? Who knows, what the heck do we know about eyes?

I should have known (and I did suspect but was busy dealing with Zoe's 7-9 seizures a day at home as she adjusted to the medication) that jiggling eyes was more serious than a weak eye muscle when I called the opthomologist's secretary on Friday and she got back to me right away and said, "Come in Monday." Still, we were not prepared for what he would say on Monday.

To summarize, because I realize my story is getting lengthy here- the opthomologist, who also called in a neuro-opthomologist who works with the onco-opthomologist said that Zoe's sudden onset of what they then called nystagmus but later was called opsoclonus because of a change in the frequency and direction of the jiggling (only significant if you are a cancer specialist) could be caused by one of three things:

-the syrinx in her spine grew and was now putting pressure on the bottom of her brain (we have now ruled that out with the MRI)

-pressure in the brain from something growing there, ie brain tumour (we have now ruled that out with the MRI)

-neuroblastoma which is a type of cancer of the neuron cells (we finally ruled that out after a very stressful few weeks of thinking the worst)

So where does that leave us now?

Zoe having sudden epilepsy is not a surprise given how many children with 1p36 have it. Now that we have ruled out any issues in the brain (Zoe has some brain malformations that make her more susceptible to seizures but these are the same ones that were there when she was an infant. She was born with her brain like this and it will always be like this) we won't be looking to any other causes. We will treat the seizures with medication and see how things go.

The jiggling eyes/nystagmus/ opsoclonus is still a mystery for now. We are waiting to hear back from the neuro-opthomologist but we are very glad that they have been wrong so far. Perhaps this is just one of those things that we won't figure out. And we are ok with that now that we know it is not something serious.

Hospitalizations

I mentioned Zoe being in hospital- she was hospitalized the week before Christmas due to Influenza A, a possible chest infection, and a possible urinary tract infection. That was a pretty typical hospital stay and Zoe did great eating and drinking when we got home so we didn't even have to put in the feeding tube to everyone's surprise.

Mid to late January Zoe's seizures become worse and were lasting longer. She had a 27 minute seizure that led us to taking her to the emergency room since we did not have any emergency seizure meds at home. A day later Zoe had an 8 minute seizure followed by a seizure that was lasting more than 5 minutes, we gave her the emergency med but the seizure continued for 11 more minutes. We ended up calling 911 like they told us to do but the seizure stopped as they were pulling up to the house. Zoe did have a short seizure while they were assessing her but she seemed ok so we declined the ride to the hospital. Within a few hours though we were worried because Zoe was working hard to breathe. She had full anaesthesia earlier that day for her MRI and we were wondering if this sedation drug on top of the drugs still in her system from earlier was causing her problems. So back to the emergency room we went. Zoe ended up in hospital for the week. They gave her a big IV dose of a seizure med that sedated her for two days straight. We gave her one dose of the med orally but saw that it was sedating Zoe way too much. So we changed to a different med that so far seems to be working. So Zoe is now on two different seizure meds and we have seen about one seizure a week, which is great. While hospitalized, Zoe was running high fevers so they tested her and found that she was positive for RSV and a bladder infection. Which could have caused the increase in her seizures. We were told any time Zoe gets sick (which is often in winter) she may end up in hospital with uncontrolled seizures. Now at least we know what to look for and have an emergency plan.

Sleep Issues

Ok, after writing all that, and after you reading all that (for those of you still reading this, perhaps some of you gave up long ago and just scrolled down to the pretty pictures) I don't want to get into details about sleep issues. I will do another post on that later. But to sum it up:

Zoe has been screaming for hours in the night, waking several times in the night, getting too little sleep so that she is having trouble eating and is very cranky in the day since mid November. We all thought she was seizing in the night (and this still may be true) and then getting confused after the seizure but now that her daytime seizures are more controlled, she is still having serious sleep issues. So we are figuring that piece out but for now it makes it very hard since we are all exhausted.

And more frustrating, sad, and upsetting than being sleep deprived is to see the effect on Zoe. She is getting better now but still having trouble eating, is very cranky, not smiling a whole lot, etc. And it breaks my heart because I know my easy going, smiley little girl is in there somewhere. Where did she go and why can't she come back? Is this her new baseline? Is it a result of the seizure meds? Will we ever get her more sleep so she can go back to who she is/was? And most heartbreaking of all is Zoe clinging and crying when I drop her off at school. This was the child that would run off in her walker with hardly a backward glance. I miss that Zoe.

The Beautiful

Despite hospitalizations, new medications, personality changes, etc my Zoe is still here with us. I can see her come out some days more than others. And I live for those moments when I see her smile. She is strong, beautiful, and wonderful, just like always. And despite all of the challenges from the last few months, we have seen Zoe moving forward with her milestones! She is doing some amazing standing. She also loves when we hold her under her arms and walk her across the room- something she didn't have the strength for before.

Zoe always has and always will continue to amaze me. I know I am the luckiest mom because she is my daughter. And I know my life is so full of joy because of her. So of course I must share some cute pics with you all:

Grandma visited for Christmas this year. Zoe loved spending time with her and of course, exploring her face while giving kisses.

Zoe jamming with our friend Patrick from Philadelphia. Our friends Patrick and Amanda drove up for a visit. Gavin had put together a surprise birthday party for me. I was actually surprised!

Zoe playing with puppy while in her stander. I had to put this one in there, it was just too cute to leave out.

Zoe's new standing strength has really taken us by surprise. She is doing amazing with her standing physio routine.

Zoe's great grandfather

2010-12-16T17:14:00.011-05:00

This is a kind of sad post. Zoe's great grandfather (Gavin's grandfather) died this last week at the age of 98. We were lucky enough to be able to visit him in Scotland when Zoe was about six months old, and we got a lot of footage of Zoe with her great grandfather. His funeral was today, and as a sort of memorial to him I put together this video.

My grandfather was quite a character. He had a fondness for poetry- the good, the traditional and the very bad. There are examples of all three in this video. The first is a poem, as my granddad says, about Scottish emigrants- I don't know the title and, in truth, only understand about half the words. The second poem about a three legged dog and is by William McGonagal, widely recognized as Scotland's worst poet. The third one is a rather bawdy poem about a lady named Teresa my Granddads girlfriend Win declares is "not for young ears". The final poem is "The Shooting of Dan Mcgrew" by Robert Service- it was one of my Granddad's favorites. The music at the end is Amazing Grace- I'm sure you will recognize it. It was my grandfathers request that it be sung at his funeral, so it seemed the obvious choice for this video. This version is by a mixed Canadian Military and a U.S. Marine Corps band.

The lady in some of the pictures is my granddad's girlfriend Win Moore, who for many years has been my grandfather's friend and companion and a second grandmother to me (and a second great grandmother to Zoe). She is a wonderful person, and I thank her for bringing so much joy to my granddad's life.

Zoe's middle name is Alexander, named in part after my grandfather, and I can only wish she has as long and full a life as he did.

He will be missed.

Little Walk-aholic

2010-12-05T20:01:00.004-05:00

Walk, Walk, Walk

"Walk" is one of Zoe's favourite signs right now. She signs it constantly and gets frustrated when it is not time for walking (like bedtime). We love how much she loves to walk. We learned at our last developmental paediatrician visit that Zoe has subluxation in one of her hips. This basically means that the top of her thigh bone is loose in the hip socket because the socket is too shallow. This is not surprising since Zoe had hip dysplasia which caused bilateral displaced hips at birth. To treat this, we double diapered Zoe for the first year or so until the condition improved. Even now, we continue to do leg and hip stretches. We noticed that one of Zoe's legs appears longer than the other so we were not surprised when the xray said one of the hips has subluxation. The doctor recommended making sure Zoe gets lots of calcium and Vitamin D for healthy bone growth and that she do weight bearing exercises every day. We make sure Zoe gets two half hour sessions in her stander every day (she is sometimes in her stander longer at school when doing art activities- it is actually amazing how well she tolerates her stander) and we give her lots of walking time. It is a relief that Zoe enjoys walking when we know how much work it is for her. The other night she was falling asleep in her walker before bed and got angry when I took her out. She kept signing "walk, walk, walk" even with her eyes half shut! Now if we could only get her to enjoy those sitting exercises....

Little Negotiator

This conversation with Zoe took place a few weeks ago but I haven't had a chance to post it. Zoe has caught on to the skill of negotiating with us. First it was the typical, mom said no so I am going to ask dad. Now she attempts to make other suggestions and negotiate what she would like. Sometimes this is ok and what she asks for is reasonable- she wants to push the button on her toy one last time before walking to the dinner table. Other times, she tries to negotiate something she can't get out of. For example, I was putting Zoe to bed a few weeks ago and she signed that she either wasn't tired (I knew she was) or it wasn't time for bed (which it was). Our conversation/negotiations went something like this:

Zoe: "no sleep (or tired)"
Me: "Zoe it is time for bed."
"Eat" smile
Oh I see, you want to negotiate. Well, you had a really big dinner so no, it is not time for eating now.
"Milk" smile
You just had milk with your meds.
"Walk" big smile
Zoe, it is not time for walking. It is time for bed.
Sad face "Walk"
Zoe, I just said, it is not time for walking.
Frustrated grunt, hand slap, "Walk"
Zoe, are you trying to say that you have to walk to show me what it is you have to do right now instead of sleeping?
Big smile meaning yes
Hmmm, let me guess- do you need to play with puppy? (Puppy is a singing dog that Gavin rigged a big button switch to so Zoe can activate the dog herself)
Big smile "walk puppy"
No Zoe, as I said it is time for sleeping, not time for walking, and definitely not time for playing with puppy.
"no sleep" pause "swim" big smile
Are you trying to tell me that you can't go to bed because you have to swim?
Big smile "swim"
Ok, negotiations are over, you are just being silly now.

Zoe in the News

2010-12-03T13:59:00.005-05:00

Zoe is in an article about adaptive equipment at her daycare. This is actually a really cool program because they use compressed cardboard to make the equipment. So far they made Zoe a floor sitting chair (shown in the picture in the article), an easel that she can use her stander at to paint and draw, and a computer keyboard station. As always she looks cute in the picture but they have better ones they could have used. We also wanted to edit the way they described her syndrome since it is not very accurate. I guess we should just hire an agent for Zoe so we can have more say in what they post :)

As for using compressed cardboard, we were a little nervous when they first told us about it because we didn't think it would be sturdy enough for Zoe who moves so much. However, we have been impressed with how sturdy and adaptable the equipment is. Plus, it is much lighter (and cheaper) than wooden or special needs equipment. They have made equipment that Zoe doesn't have already, is not covered by our insurance, and helps her participate more in school activities.

Here is the link for the article:

http://www.ryerson.ca/news/news/General_Public/20101203_adaptive.html

Tough Couple of Weeks

2010-11-27T15:07:00.005-05:00

It's been a rough couple of weeks but Zoe is starting to feel much better now. She had some ongoing diarrhea issues and then either got hit with a second wave of the same bug or a new bug and ended up with high fevers, vomiting, and lots more diarrhea. Which made it very hard to keep Zoe hydrated enough. By last Saturday, Zoe was starting to get pretty dry and we were worried because she had crying/screaming and signing that her lower stomach area hurt. We were worried it was more than a stomach bug so we took her to see the doctor just to be sure. Thankfully, it was just a stomach bug and after five days of rehydrating with NG feeds, Zoe was feeling much better (as you can see in the picture below). We are still feeling exhausted from days without sleep but Zoe seems to be fully recovered today. She even made it to school for Thursday and Friday this week, which of course made her very happy. She is napping longer than usual today (which is why I finally have time to update her blog) but other than that, she is back to her silly, smiling self.

Having the NG inserted really upset Zoe this time. We don't know if it was because she was feeling really lousy or just really pissed. She kept signing "daddy" and pointed at the tube while shaking her head no. (It was Gavin's turn to insert the tube and this time Zoe was going to make sure he knew she didn't like it!) We laughed because even days later Zoe was calling it the "daddy tube." Ah well, I have no sympathy since the sign for vomiting is still "mommy" while gagging or sticking out her tongue!

Zoe actually removed the NG herself by accident this time. We were planning on running one last feed and then pulling the tube, but Zoe pulled it while playing. She was then very upset and would not calm down until I figured out that she was upset that we would put the tube back in since for days I had been saying, "Zoe, don't pull on your tube. If you pull it out, we will have to put it back in." Once I reassured Zoe that she was done with the tube and we would not put another tube in, she happily played in her bath and forgot all about it. It still amazes me how much she does listen for a 3yo!

Zoe and daddy after a few days of feeds and Zoe began smiling again.

Zoe Self Feeding Skills

Before Zoe got sick, she was doing some really exciting things at meal time. For a long time now, Zoe has grabbed inedible items (sand, paint, pumpkin, etc) and put them in her mouth. Any time we would offer her food (other than a cracker or baby mum mum), she would immediately just throw it on the ground. In the last few months that has finally changed. Zoe is really interested in dipping her hands in her food and licking it off. She also shows great interest in using a spoon and holding her cup by herself. We are very excited to see her self feeding skills begin to advance.

As you can see, feeding herself is very serious (not to mention messy) business!

Zoe has even adapted a side swiping gesture when she gets the food to her mouth since her mouth is too little for her to insert her whole hand like most kids do when learning to finger feed. It is amazing how she has adapted to her very small hands and is able to manipulate objects and do what she wants.

Halloween fun

2010-11-01T19:16:00.005-04:00

Happy Halloween everyone!

Hope you enjoyed Halloween as much as Zoe did this year. Here's a video of some of our Halloween fun.

Zoe's announcement

2010-10-26T13:45:00.008-04:00

Hello everyone

Zoe wanted to make an announcement- it's the same one she has been making to anyone who will listen for the last couple of weeks. So, in Zoe's words, here it is-

For those of you who don't know ASL, what Zoe wants you to know is that "Mommy has a Baby in her Belly". Come May next year, Zoe is going to be a big sister! She is extremely excited about it, as are we. She has been going around signing this since we told her- she outed us to all her preschool teachers weeks ago. You'd think a non verbal kid could keep a secret!

Genevieve Adds:

Zoe has also come up with her own unique sign for throwing up. I don't actually know what the sign for throwing up is but chances are, it would not have been on my list to teach Zoe. In the beginning of the pregnancy, Zoe would get really upset when she would hear me being sick in the bathroom or if I suddenly left the room to be sick. I would return to wherever Zoe was and she would make a sad face and sign "mommy" while making a gagging sound. And I would say, "Yes, Zoe mommy was just sick." We told Zoe early on about the baby to reassure her that mommy was ok and that it was the baby making mommy sick but that is ok and normal.

Now, Zoe thinks it is quite amusing when I am sick. She will smile and sign "mommy" while gagging. I will say, "Yes, Zoe mommy was sick." She will laugh and sign "baby" and I will respond, "Yes, Zoe the baby is making mommy throw up." Which she just thinks is hilarious and will laugh and smile. Gee thanks Zoe, I am glad me being sick is so darn amusing! But I am really glad that me being sick is no longer worrying Zoe.

We have been showing Zoe pictures of fetal development and explaining "This isn't a picture of our baby, but what our baby might look like right now." When we got an ultrasound at nine weeks, we showed it to Zoe and explained that it was a picture of our baby. Zoe got very attached to the ultrasound and would ask to see the baby frequently for the first few days. She would laugh and smile when I pointed out the head, butt, and legs. Then we would tell her how the baby was waving its arms and legs around, having a party in mommy's belly and she would just laugh and laugh.

While Gavin and I were eating our lunch and Zoe was walking around in her walker she came over to us because we were looking at some pictures of her cousins. I showed her the pictures we were looking at and she got annoyed. Her grandad pointed out that maybe she wanted to see the ultrasound picture again. So I explained to Zoe, the picture of the baby is in the back of the house, I will get it later. Zoe immediately turned in her walker and started walking to the back of the house. Ok....I guess I will get that picture now!

Last cute story about Zoe and babies:

Zoe is struggling to understand that it will be a while before the baby gets here. She will frequently sign that mommy's turn with the baby is all done and it is Zoe's turn. Or she will ask to kiss the baby which I will offer my stomach but she pushes it away in frustration and signs baby.

We took Zoe to a doctor's appointment and in the waiting room there were newborn twins in car seats. Zoe immediately ran over to them and started rapidly signing, "Zoe baby, Zoe baby, Zoe baby." To which we had to explain, "No Zoe, those are not our babies. We aren't taking those babies home." Zoe was disappointed but handled the news well.

I have a feeling it is going to be a long wait until May!

Vote for 1p36!!!!!

2010-10-04T10:17:00.001-04:00

We are voting again this month on the Pepsi challenge fundraiser. Please check it out and take a few minutes every day to vote. We are in 2nd place today!!!! Let's keep it up!

1p36 DSA Pepsi Refresh Awareness Campaign Blog

One more cold

2010-10-01T11:52:00.003-04:00

Zoe has got her cold back again. So she is snuffly and has an abundance of mucusy discharge from the nasal cavity (i.e. boogers). Not stopping her though- she's off at school today. So in September, she had two colds, one viral throat/hand infection, one ear infection that also effected her eyes and one weird viral rash that (thankfully) turned out to not be chicken pox. She had 11 medical appointments, including her OT/PT. Fortunately (I guess) I didn't have many work shifts at the hospital, so I wasn't working weekends that often. And best of all, my Dad Alan is still here to help out. Thanks Dad.

Now bring on October : )

September

2010-09-29T11:45:00.002-04:00

September has been a difficult month. Zoe went through three different illnesses, one after another. First was the blisters in her throat and on her hand. Next was an ear infection (actually, this was Zoe's first ear infection so we feel pretty lucky there). Then last week she developed a rash that we thought was chickenpox but it never fully developed so we took her to the doctor on Monday. Turns out that she has a viral rash, not really sure from what but it is fading now so no worries.

Through all of this, Zoe has been great as always. Her biggest frustrations has been not swimming and missing school. We have tried to get her to school as much as possible but when she is running a fever or really not feeling well, we have to keep her home. When she has made it to school she has been super excited. A new batch of students (Zoe goes to a preschool inside a university so there are lots of early childhood education students) started and they are all falling for her cute ways. When I dropped her off last Friday she had three students immediately come over to play with her. Zoe has always had a really long attention span and the students love the fact that she will play with their activities for a good 30-40 mins when the other kids get bored in a few minutes and walk away. And of course, everyone is a sucker for that smile.

Gavin started teaching a child life class at a university this month. It continues until the end of October. He is really enjoying teaching but the commute is tough (takes him a couple hours each way since it is out of town). I envy him all that time on the commuter's bus....nothing to do...no one asking him for anything...no small child to feed... I really miss him on nights when he gets home late. Thankfully, Alan (Gavin's dad) is still here helping us out so at least I have plenty of help with Zoe. With Alan here, I have even had time in the evenings after work where I can go and take a hot bath while Alan and Gavin look after dinner and Zoe. It has been wonderful.

Seating Clinic

We finally saw the seating clinic to assess if the wheelchair stroller we got from another family is appropriate for Zoe. They were quite happy with it and felt that it supported Zoe in all the right places. We just had to do a few minor adjustments. So the stroller will work for now and then in the next few years we will start talking about a wheelchair. Zoe's physiotherapist mentioned that we may want to start thinking about a power wheelchair. So we talked that over with the seating people. We would definitely have to get ramps on the house and a wheelchair accessible van since the power wheelchairs typically weigh about 250 pounds!

For now, we will continue to encourage Zoe to use her walker as much as possible. For longer distances, we typically carry Zoe and drag the walker along for her to use when we get to our destination. A power wheelchair might make more sense when Zoe is older and having trouble keeping up with her friends or moving from classroom to classroom. For now, Zoe has no trouble running after her classmates in her walker.

We also want to hold off because we want Zoe to be motivated to walk. If she finds she can just zoom places by pushing a button, she may sign "chair" constantly and refuse to walk. For now, Zoe loves walking and we want it to stay that way. Also, Zoe continues to run our feet over constantly when she is exited and running somewhere so I can only imagine the damage she would do in such a heavy chair!

Ahhhh, Winter is Coming...

2010-09-07T09:24:00.003-04:00

Pain Meds

We had to take Zoe back to the doctor on Saturday because she was becoming very agitated and aggressive in the evenings while repetitively signing "hurts" and pointing at her mouth. It is actually amazing to us that she can point to exactly where her pain is- she digs her finger way in the back of her mouth to point at her throat where the blisters are. Just out of interest we did a pain scale from the hospital for children with special needs that are non-verbal. Zoe scored 37 and anything above 7 is considered the child is in pain. Yikes! So off to the doctor we went. He prescribed morphine and so far Zoe has done pretty well with just two doses of that a day and a couple doses of ibuprofen. The morphine does not seem to make her sleepy so that is good.

First Cold of the Season

Unfortunately, Zoe woke up yesterday with a very stuffy nose and miserable. She has gotten a cold on top of her viral infection in her throat. Needless to say, she was pretty miserable yesterday. She does really well though, even when in a lot of pain. She still spent some time in her walker and loved going outside for a wagon ride and swinging with grandad.

I woke up at 3:30am today and instinctively knew something was amiss. I listened closely to the monitor and I could hear Zoe gasping and choking. I held my breathe and listened (this is what we do before rushing in, we give her a chance to clear herself first). Zoe did clear herself and when I checked on her she was sound asleep again. My heart was racing and I could not get back to sleep until after 5.

So I took a deep breathe and reminded myself that I have to sleep, even when I am worried about her breathing. She is bigger and stronger now and most times she can clear herself.

Sigh....winter is coming so I better remember how to roll over and fall back to sleep afterwards.

Zoe Sick- Minor

2010-09-02T09:07:00.003-04:00

Fevers With a Cause

Zoe has been running a fever since last Thursday. We also noticed that she chewed her one finger so much that it had a nasty looking blister on it. Tuesday was day 6 of fevers so we went to the paediatrician to see what was going on. We actually found a simple cause this time! I think the doctor was just as excited as we were that there was an obvious cause and this is not one more case of rumblings in the chest but not being sure if she has pneumonia again. When the doctor looked at Zoe's throat, she could see blisters just like the one on Zoe's finger. Zoe has a viral infection (not hand, foot, and mouth which we are pretty sure Zoe had last year) that causes blisters in the mouth/throat but since she was chewing her fingers so much it caused a blister to form there too. Apparently this is very painful and most kids are on codeine for it. So far Zoe has been doing well on Motrin and Tylenol. She was in a pretty good mood today so I dropped her off at school this morning. Hopefully she will make it through the day. I am hoping being at school will distract her from the pain and she will eat better. I can tell she is in pain because she is chomping away on her hands and when I ask her why she is biting so much, she signs "hurts."

We're Back!

2010-08-12T10:49:00.003-04:00

A Great Trip

We had a fantastic time away. It was great to see all the other families at conference. Check out Whitney's blog (on the right) to see summaries of some of the presentations or Alayna's blog to see pictures of most of the kids. There is a cute one of Zoe.

After conference we rented a car and went to the Arches National Park. It was gorgeous. And Zoe did so well despite the warm and sunny weather. She was drinking water like a champ.

We ended the trip with a 3 day train ride from Salt Lake City to Buffalo. Zoe loved the train and kept signing "train." When the train made stops, Zoe walked around on the platform. Initially she had a hard time not trying to throw herself under the train but she quickly learned to listen. We were very impressed that just by saying (while signing) "no yellow line" Zoe would immediately stop and go the other direction. She really does listen well, especially for a 3 year old!

Photos To Come

We have tons of photos (over 300!) to sort through and then we will post some. It really was a great trip.

Little Cow-Girl

One thing I wanted to comment on was our discovery of Zoe's love of country music! While driving the to Arches we got stuck in traffic. Zoe was getting fussy in the back so we tried finding some music on the radio. When we stopped on the country station, Zoe immediately stopped crying and was quiet. As soon as the song ended, she would fuss until we found another country song. And not just any country- she didn't want any modern, not so country sounding music. She wanted good old fashioned "yee haw" twangy country. It was hilarious!

Just Too Excited!

Gavin's dad came for a visit the day after we got back and Zoe was beside herself with excitement to see him. He has grown his beard out and Zoe is just loving it. It was great to see her recognize him and get so excited.

To add to the excitement- today is the first day back at school! Zoe had a bit of a restless night and we think it was because she was so excited about school. She was laughing, smiling, and signing school as soon as I got her up this morning.

Zoe was very restless in the car and complaining (apparently I was taking too long to get to school!) As soon as I put Zoe in her walker, she raced into her school room. Some of her friends came over to get kisses and hugs and ask her how her break was. Zoe walked all over the room touching everything while smiling and laughing to herself. It was very cute. And great to see just how much she really does love school.

We're Off!

2010-07-28T13:16:00.002-04:00

We are leaving today for the 1p36 Conference in Salt Lake City. We are very excited to see everyone again and meet new families. They have some great things on the agenda this year like a moms' night out and a dads' breakfast. We have some family time planned for after conference and I am really looking forward to that. Gavin has been working so much that we haven't had much time lately except our camping trip a couple of weeks ago.

It has been neat to see the effect of packing on Zoe. Previously she didn't take much notice of that type of activity but on Sunday when I was packing, Zoe was getting really upset. I realized that she thought I was going somewhere without her so once I explained what I was packing and that our trip was in a few days she kept getting so excited but then upset at the same time. Upset because she won't be at school for a couple of weeks. But she kept signing, "mom, dad, Zoe" and getting so excited. It's going to be a great trip.

The Backpack

2010-07-17T21:09:00.007-04:00

Ok, I admit this is probably just an excuse to post some more cute pictures....but someone commented on the backpack and I just wanted to show how hilarious Zoe used to look in the carrier. The carrier was bigger than Zoe! It also weighed almost as much as her. We bought it when Zoe was six months old when we knew we would be doing a lot of walking on our trip to England and Scotland. Gavin's family is from there so we went over to show off "the bonny wee babbity" and visit the relies. We were hoping that Zoe would be able to nap and it would be more comfortable than carrying her in a sling. We bought this particular pack because it is pretty light weight and can carry a child up to 23kg/50 lbs. We figured that will last Zoe a while. Zoe actually screamed her head off the first few times she was in it. I think people were wondering why we were squashing this "newborn" (we got that a lot with Zoe in the first year) into a backpack.

I love this picture because it shows how little Zoe was. More backpack than baby.

And you can see in this picture that she really was comfortable in it. She would fall asleep in the pack for hours. Because she stops wiggling when sleeping we had to dress her in a sweatshirt because her hands would turn purple due to her poor circulation. We didn't realize this wasn't "normal." We thought it was normal for a baby's hands and feet to be bright purple at times. It wasn't until someone pointed it out as a cardiac symptom that we thought there was anything wrong with it.

And here is Zoe at almost 3 1/2 years old. She doesn't sleep in the carrier now. She is too busy yelling at daddy to go, go, go!

FYI I do actually carry Zoe at times (and yes, Rachel Coleman is definitely an inspiration for me to be in shape so I can carry my child as she grows bigger). I just like the pictures of Gavin better :)

Chapman State Park Camping Pictures

2010-07-16T21:17:00.006-04:00

We decided to go to Chapman State Park in Pennsylvania this year for a few reasons. Mainly because I have always wanted to camp in the Allegheny Forest and also we invited some friends and family from PA to join us. Unfortunately they were not able to come. But we still had a great time.

We were quite impressed with the handicap access of the park in general. Specifically, there was a totally accessible washroom including a change table that was set up between the men and women's rooms. Which meant we could both be in the shower with Zoe. We typically both take her into the bathroom when giving her a shower at camp (it is not safe to shower Zoe alone anymore because she arches and wiggles so much) but usually we have to sneak into each other's bathrooms. This time we could take our time and enjoy the facilities. There was also a wheelchair dock and steps down into the lake. Zoe had a great time walking up and down the wheelchair accessible sidewalk/dock area. We were camped near the fully accessible sights so Zoe could walk along the flat area of the road. She was even able to walk up hill a bit. Her walking has really come along in the last few months.

Zoe hanging out at camp. Yes- we brought that highchair! Been using it for three years now and it still works well. It is great because it is so small and portable. As you can see, it also doubles as a play chair.

Zoe's static hair after going down the playground slide.

Zoe doing what she loves- eating sand. It has actually become a bit of a problem because she has the fine motor control to get a lot in her mouth now. She is sitting in her flip 2 sit. We love her new chair- makes so many things (like playing in the sand) much more accessible.

Zoe LOVED bouncing along in the backpack. She got quite a bit of reflux (aka puke) from all the bouncing but really enjoyed it anyway. Puking has never stressed Zoe out so we just wiped it up and kept on walking.

The Year of F

2010-07-16T14:19:00.004-04:00

While reading Rachel Coleman's (from Signing Time) blog post about making 2010 the year of ...

http://www.rachelcoleman.com/2010/01/25/creating-the-year-2010/#more-2283

I decided to make this the year of F. All sorts of Fun things start with F.

Friends

First I want to say a big Thank you to our Friends Riann and Melissa. A week or so ago they offered to take Zoe for the night and we quickly said "yes!" As I have posted before, Zoe's sleep issues have escalated in recent months and we are exhausted.

Melissa lives in a condo and therefore booked us a guest suite. Her and Riann cooked dinner and then kicked us out. Riann knows Zoe very well since she used to be Zoe's respite worker. So we were totally comfortable leaving Zoe with them for the night.

Thank you- we really appreciate the support!!!!!

Fun

We have definitely had lots of Fun this year so far. One Fun development has been Zoe's advance in communication. Although she still only uses about 20 signs, she gets her point across and even tells jokes!

Zoe's Complex Thought:

While getting Zoe ready for bed, I was talking about how I would bring Zoe to school in the morning. Zoe responded by signing "daddy." I then explained, "Daddy will be at home tomorrow and I will bring you to school."

Zoe then did a series of signs that amazed us:

daddy sleeping zoe school friends

Zoe, did you just say, "Daddy will be sleeping and you will go to school to play with your friends?"

Big smile and repeat "daddy sleeping zoe school friends"

Friends is a new sign and as Zoe signed it she actually held her hands up to look to see if she interlocked her fingers the right way.

I encouraged Zoe to tell us more but she just smiled and signed,

Zoe all done sleep

I think it is hilarious that Zoe will always sign "daddy sleeping" if Gavin is at home. As if that is what he does all day- he wishes!

Zoe's Joke:

Zoe has told some jokes in the past by saying something is the opposite. Examples: a co-worker of mine has a very small dog and Zoe laughs while signing "cat." And of course after Gavin shaved she loved signing "daddy girl."

The other day Zoe told this joke:

Gavin and I were talking and Gavin signed something and included the word crazy. Zoe was in her highchair playing with a toy and I didn't even think she was listening to us. I said, "I don't think that is the sign for crazy. What is the sign for crazy?" Zoe immediately signed, "daddy." Initially I thought she was just talking to daddy but by the sinister little chuckle I asked her, "Zoe what is the sign for crazy?" and she gave a big smile, signed "daddy" and then laughed so hard she was snorting and could barely breathe. I repeated, "What is the sign for crazy?" And again "daddy" and breathless laughing followed. The third time I asked, Zoe switched the joke up and signed "mommy." I responded by saying, "What! Mommy is not the sign for crazy!" to which Zoe just lost it and kept laughing and laughing.

She is definitely a funny little girl!

Family

A big part of the year of F is definitely Family. We just took a family camping trip for five days and it was great. Zoe is quite the camper. She did great most of the days and was not too stimulated from being outdoors. I will go through the pictures later and post some. Of course it is always hard to pick one or two since she looks so darn cute in all of them!

Lung and Sleep Update

2010-06-29T08:52:00.012-04:00

Zoe's new lung routine includes inhalers. Initially she pushed the mask away and fought us but now she does a great job taking deep breaths while we count.

Lung Update:

Zoe saw the chest team at the hospital for the first time two weeks ago. Basically this is what was discussed and decided:

- Zoe has chronic left lower lobe findings on her chest xrays. This is nothing new but the doctor wonders what exactly is down there. Is it an anatomical thing that Zoe was born with, a result of infection, or a stubborn infection that just won't go away? Initially the doctor recommended Zoe going to the OR for a scope of her lungs and a biopsy of that area. We got a call the following week to say that the doctor had reviewed all the xrays with the technician and with another doctor and since there has not been any changes, they want to hold off on the scope and biopsy. This was a relief to us since Zoe getting anaesthesia is stressful due to her very poor veins (it took two hours for them to get the bloodwork after the appointment, so who knows if they ever would have been able to get an IV in to make anaesthesia safer).

- Zoe was prescribed two inhalers to move the mucus around and open up her airways. We were initially told to start the inhalers in August (the one takes a few months to have effect) and that would hopefully help with the winter pneumonias she always gets. Then, we got a call the next day to say that the bloodwork Zoe did after the appointment shows high white blood cells which indicates an infection so start the one inhaler right away and if she has more symptoms then go to the doctor and get antibiotics. Hmmmm, this is always a tricky one- what is more symptoms when your child already turns purple and refuses to eat some days? Not to mention the pesky irregular fevers she gets from time to time. But we know Zoe well enough to know when she needs to be seen by a doctor so we were ok with that plan.

- They did some other immunology tests and those seem to be normal. They also did a nasal and throat swabs and we got called the end of last week to say that Zoe tested positive for a staph aureus infection. This is the most common cause of bacterial pneumonia. So although it seemed that these pneumonias were viral and therefore antibiotics didn't do anything for them, it seems that this time or maybe last time and it is still lingering, Zoe is growing some bacteria which could have caused the latest pneumonia. The one big bummer about Zoe being positive for staph is that once you are positive it usually stays in your system. It is the type of thing that many people have without knowing it and is usually no big deal. However, if could cause repeated infections including pneumonias and possibly endocarditis which Zoe would be at risk for because of her heart. But hopefully it never comes to any of that. We were told if Zoe is showing symptoms again than she should be given antibiotics that would treat this type of infection. So far though, Zoe is doing fine.

- New chest physio routine- a therapist came in and showed us a new/better way to beat our child :) We are supposed to do chest percussions twice a day now. Zoe has been doing really well with it so far and even falls asleep if she is tired. The new routine is similar to what we have been doing but we have to pat her a bit longer than we were.

- There were some other annoying little findings like swollen lymph nodes so now she has to be tested for TB although everyone knows she doesn't have it but I guess that is protocol. And the doctor ordered another test (a sweat test to look for something we are pretty sure Zoe does not have) and follow up in three months.

I think that is everything. I like to post the info from the doctor's visits because I find it is a good way to get the accurate info to everyone at once. Plus it is a good record for us when looking for info about when Zoe was sick, what was said, etc.

Sleep Issues:

Zoe, like many typical children her age and most, if not all, of the children with 1p36 has had sleep issues for a long time now. They seemed to have escalated in the last few months and it has been very hard for all of us. Zoe screams all night (correction, not all night but until about 4am) which means she is exhausted in the day and we are exhausted because it is very hard to sleep when she is crying like that. We worry that she is stuck in a corner of her bed or she is in pain but that is hard to assess when she cries all night.

We have been waking Zoe in the morning by a certain time and limiting her day naps and this does seem to be helping. The first week of the new routine Zoe was exhausted in the day but still screaming at night. Now Zoe seems to be back in her old routine of waking frequently in the night but playing quietly until she falls asleep again. Some nights it does take her about two hours of crying to fall asleep. But that is much better than the 8 hours of crying she was doing recently. The paediatrician put in a consult to the sleep team so we will see what they have to say.

Zoe sleeping in her new bed (rail is in the down position). She is getting to be such a big girl!

Happy Father's Day Part Two :)

2010-06-20T17:46:00.004-04:00

Zoe Scouted for Swimming

Lyn, our respite worker, was here for the day and took Zoe swimming this afternoon so I could put the finishing touches on Zoe's bed, go to the grocery store, Canadian Tire, etc. Oh yeah, and have some respite time!

They just got back from swimming at Variety Village where we have a membership. Variety Village is great because you can go any time to use the pool and they have a heated pool so Zoe can stay in the water a long time. Zoe loves to swim. They also stock many infant size life vests for when I forget Zoe's at home.

Just had to post because it is so funny- Lyn was approached by the head coach of the Special Olympics swim team and asked if Zoe had plans to join the team eventually. She insisted on giving Lyn her business card so we could give her a call to talk about "Zoe's future."

Zoe has officially been scouted by a head coach- how funny is that?

This team- "The Flames" (http://varietyflames.org/) starts at 7 years old. She also seems to be in charge of the Sunshine Swim Team (www.varietyontario.ca/Teams/sunshine/index.htm) which is the one that competes in Special Olympics. Not sure what age that team starts. There is no way this lady thought Zoe was that old. How young does scouting start these days? Seriously, should we be planning Zoe's future career as a Special Olympian before she even finishes Preschool!

Just had to share that- it definitely brought a smile to my face and a proud sound to Gavin's voice when we called him at work. I have to say- Zoe really does move herself in the pool these days. And that big smile is hard to resist.

Happy Father's Day!

2010-06-20T15:10:00.008-04:00

Dear Daddy,
It is very hard for me to tell you how much you mean to me and how lucky I am that you are my daddy. As you know, I am not one for talking very much....but I did learn to sign "I love you" just a few weeks ago!

You are an amazing and wonderful daddy. Mommy says you are the best daddy she could have picked to be my daddy. You love me exactly as I am and I know that. You can see the pure joy on my face when you talk to me and let me eat your face. And I love signing your name, "Daddy, daddy, daddy" a million times when you are at work. Like today. Today is daddy's day and you should have the day off. But because you love me so much you go to work to make money so you can buy me things like my special bed you just put together. Mommy says she is amazed at how caring, compassionate, and patient you are with me at 4 in the morning when I have been screaming my head off all night. You always do what is best for me, even when you are really tired.

One thing that mommy says is so amazing is the way that you let me just be a little girl. You hang up pie dishes so I can crash into them with my walker. And you don't even mind when you are trying to have privacy in the bathroom and you hear me chuckling around the corner about to crash open the door. You take me to the water park or beach and let me play by myself. It would be easy to baby a child like me, but you know I am not a baby anymore. I am a big girl, ready for my own adventures!

To demonstrate some of what you have been busy with. And some of what it means to be my daddy, I have included some pictures/the story of my bed below. This is just one piece of taking care of me lately but it shows how much thought and time you put in to making sure I have what I need.

I love you daddy.

Love,

Your Zoe

The Problem:
Zoe was getting too big for her infant crib but a traditional older child's bed on the floor would not work. Even if we put rails on a typical bed, we would still have to bend over to pick Zoe up and chances are, Zoe is going to need assistance in and out of bed for a long time.

The Research:
Do you have any idea how much special needs beds cost!!!! And they are huge! So Genevieve found an IKEA loft bed (bunk beds were too high for us to reach Zoe easily without standing on a stool) that wasn't too high and can later be flipped to make a bed closer to the floor when Zoe is able to get herself in and out of bed. Gavin needed a little convincing that it might work but he soon was on board. Grandma came for a visit in the later planning phase and lent her woodworking expertise.

The Plan:
Buy an IKEA child's loft bed and add a wooden rail that can be secured when Zoe is in the bed and easily out of the way when we want to get Zoe out. Gavin designed a rail on hinges so it can be swung down and out of the way.

The Construction Crew:

Gavin putting the finishing touches on the latch that keeps the railing up and secure. You can see how the bed (the blue part) is just under Gavin's armpit height which makes it better for our backs when lifting Zoe in and out. No more bending over.

The Boss:

Zoe inspecting the wood and giving her opinion as the project progressed.

The Decorating Department:

We have been searching for a sheet sleep sack for Zoe. We use a heavy one in winter and find that Zoe settles down more when contained in the sack. The cheapest we could find were ridiculous so we have held off getting anything. Grandad gave Zoe some money for a sheet set for her big girl bed and we didn't realize it came with a perfect sleep sack! Forget the big sheet it came with, the pillow case works just fine for Zoe.

The Finished Product:

The bed with the railing swung downward. Notice the great amount of space under the bed for storage or a fort. Zoe was walking underneath in her walker and wasn't quite sure what to make of it yet.

The bed with railing up and secured. It is high enough to keep Zoe safe for now. In the future we can make it higher or if Zoe is able to get around more on her own, we can flip the bed so it would be on the floor.

Final Comments:

That is our solution to having a child with very low muscle tone who needs complete physical support but who we are trying to make life as typical as possible for. The whole bed, extra wood, mattress, etc was more in our price range than a special bed. Plus, what kid wouldn't love a loft bed with a fort underneath? Her mattress is so comfortable I am tempted to sleep up there myself!

Water Fun Outside!

2010-05-31T13:12:00.004-04:00

We have been using the pacer walker as Zoe's outside walker. We notice that the pacer is a bit more work for Zoe. It requires her to bear more weight on her legs than the pony walker does. The pony is great for indoor play because it is so small that Zoe can get right up to things. And Zoe can now be in her walker for hours every day without tiring too much. The problem with using the pony outside is that the wheels are very small and get stuck easily. The pony maker has an outdoor walker called a bronco which is just like the pony but has bigger wheels. Great except we don't have an extra $2,000 to spend on a walker just to use outside! Luckily, our friend Shelby just outgrew her pacer and passed it on to us. Zoe is gaining strength and is able to walk further and further each time we bring it out. Another great thing about the pacer is you can set all four wheels in the forward position so if Zoe is walking along a sidewalk that slopes, she will continue walking straight instead of going into the street. This way, every push she gives propels her forward and therefore she does not get as frustrated as she does if the wheels are unlocked and she ends up spinning in circles.

Yesterday we brought the pacer to a local park. This park recently redid it's fountain area to be wheelchair/walker accessible. Which we didn't give much thought to until yesterday. It was so great to see Zoe walking through and enjoying the water. We didn't have to hold her. She could play just as she wanted to- independently.

Zoe laughing her head off. At this point we decided to take her hearing aids out since she was starting to get pretty wet!

Good thing we took those hearing aids out! Zoe would launch herself into the waterfall and then pull her feet up with a look of ecstasy on her face. The little girl in the background is someone we just met yesterday. She was very sweet and kept following Zoe around. Gavin encouraged Zoe to give her a high five and she looked so happy when Zoe did so. It was a really cute interaction.

Seeing how Zoe can use the pacer to access her outdoor environment (like at this park and at school on the playground) has really reminded me how important equipment is for kids like Zoe. If we were not lucky enough to have a friend pass this on, Zoe would continue missing out on these type of life experiences. It is amazing how much difference equipment can make.

Ahhhhh Summer Time

2010-05-23T18:02:00.003-04:00

Zoe enjoying the grass in the backyard. She signed mom because I snuck up on her with the camera.

It is hard to believe that Zoe used to struggle so much with being outside. The sun, wind, sounds, etc were too over stimulating for her and she would just arch her back and scream. Most of the time now she loves being outside. We are looking forward to do more outdoors this summer. And maybe when we camp this year she can actually go for a hike instead of staying in the tent!

Morning Commute/Conversations with My Zoe

2010-05-21T08:51:00.004-04:00

It is amazing how much Zoe is able to communicate with only a few signs. At this point, she only uses about 20 signs consistently. She will mimic other signs if we show them to her, but she only usually uses her familiar 20 spontaneously without us signing first.

Some commutes can be challenging. Physically- carrying Zoe, plus backpack, plus pushing/carrying walker on and off of subway trains can be wearing on my back. Emotionally- listening to people's ignorant comments used to really upset me but now I just ignore them. They think I am being rude when I don't respond but honestly how do I respond politely to comments like "You should wrap his head in a towel so his neck doesn't get damaged" (yesterday's gem of wisdom from random woman on the train- what?! how do I respond to that one!). I try to stick to "if I don't have anything nice to say, better keep my mouth shut!" I want to teach Zoe how to deal with unwanted/ignorant advice since as a person with disabilities she will be getting plenty of that in her lifetime. So I try to remain composed and ignore people. Most of the time I succeed. And some commutes are made much easier by my driving Zoe to school. School is downtown, a five minute walk from the hospital both Gavin and I work at. We tried to find care closer to home so we wouldn't have to commute with Zoe but finding care like she is currently getting was impossible. They are amazing at her school- but I won't go on about that now.

This morning's commute (on subway because Gavin needs the car for grocery shopping and it was physically "easy" since I only had Zoe and one heavy backpack) was really nice. Some commutes, like today, I really enjoy sitting with Zoe and getting a chance to talk with her. After gulping down an entire cup of milk (a big accomplishment if you know Zoe and the fact that she will drink 1-6 ounces on an average day) Zoe was chatting away.

First, she needed me to know that she was all done snuggling with me.

"Mommy" "All Done"

Yes, Zoe I can see you want to be all done sitting on mommy but we are on the train so we have to stay here until we get to our station.

"Mommy" "Zoe wants" "All Done"

Yup kiddo, got your message the first time. But we are on the train and can't get off yet.

"Mommy" "Zoe wants" "All Done" pause "Walk"

Zoe, we don't have your walker on the train so you can't walk right now. Would you like to sit on your own?

"Mommy" "All Done"

This is a good example of how Zoe only signs a few words but can mean different things depending on the situation, her gestures, and her facial expression. As she signs "mommy" and "all done" this time she has a big smile on her face and his arching her back so she can slide off my lap meaning "Yes, I want to see on my own. I am all done sitting on mommy."

We then proceeded to have our usual conversation since Zoe was now sitting next to a sleeping boy:

"Mommy" "Boy" "Sleeping"

Yes Zoe, that boy is sleeping.

"Boy" "Kiss"

No Zoe, we don't kiss strangers on the train.

"Mommy" "Boy" "Sleeping" pause....big smile "Kiss"

Should I be worried- is she implying that it would be ok to kiss this random guy since he is sleeping and may not notice! Instead she reaches out and gently strokes his arm. She looks back at me with a look of triumph and with no signs I can tell she is thinking "Haha, I touched him and you didn't stop me!"

On the second train we stand since we only go a few stops. Zoe begins flinging herself backward while signing "walk."

Yes, I get it, you want to walk and not be stuck on mommy. Your walker is at school, you can walk when we get there.

And as soon as we enter the classroom Zoe has a big grin and is signing walk. I pause to say good morning to Alison (her teacher) and Zoe frantically signs "walk" while swinging her legs back and forth. Ok, kid I get it already!

And of course there was the usual heart felt goodbye flung in my direction as an afterthought as she races through the classroom door:

"Mommy" "All done"

Love you too sweetie. Now wipe those tears from your eyes. I know how hard it is for you to be at school and away from mommy.

She was too busy running after her classmates to appreciate my sarcastic comments but at least I usually get a chuckle from the teachers.

A new bath chair, a new playseat, new hearing aids, a new walker and a new haircut

2010-05-18T11:35:00.010-04:00

Zoe's new Flip2sit playchair arrived this morning. We tried one out recently (see April 25) but now her very own is here. We are very excited- it is light, highly portable and relatively cheap (only $388, which we got funding for from the patient amenities fund at Sick Kids- Zoe's hospital). Here's a picture

When we put her at the tray table we have it makes her look like a little CEO at her oak desk, which is fair enough as she certainly is the boss of me. And pretty much everybody else she knows too. Check out her new big girl haircut too. We just cut it a day or two ago- it makes her look so grown up!

Hearing aids

Genevieve had mentioned how tiny Zoe's hearing aid are. Here's a picture to show you just how little they are. Check out the cool zebra stripes too!

An outdoor walker

We inherited a Pacer walker from Shelby and Erin- thank you ladies and our love to Jaxson (Shelby's brother). We haven't got any good pictures of it yet but it is bright green and shiny! It is a lot larger the Zoe's pony and while not as good for indoor use (Zoe can't reach her toys very easily) it is has larger wheels that are able to move outdoors, something the Pony doesn't do so well. It also is much more adjustable- the seat and the chest harness can eventually be removed, just leaving the wheeled walking frame for the day when that will be all Zoe needs. So now Zoe has her indoor walker and her outdoor walker. Huge thanks again to Erin for passing this along to us- Zoe is only eligible for a walker every three years so we wouldn't have looked at getting this for a while yet.

Bath seat

The bath seat finally arrived and is getting frequent use. It saves our backs a bit- the next thing we have to do bath wise is some bathroom renovations to replace the current sink with a super big utility sink (almost the size of a small bath tub) to eliminate the need for us to bend over to bathe Zoe. I tell you, that girl loves her baths! We'll also need new tiling and an optional new floor (the current one is really ugly old laminate) that should take us the next little while. Step one- locate a local supplier for the sink.

That's it for news. So now Zoe has two walkers, one playchair, one special needs stroller with two bases (one stroller base and one "spider" base that goes up and down we use in the house for playing in), two regular strollers (one umbrella, one lay down type- she doesn't use either very much any more), her high chair for eating, and her bath chair. Plus her play mats in the living room and her ball pit in our spare room (see May 17, 2009). And her stander (one at home, one at school). And her two corner chairs and adapted easel at school. Plus glasses and now hearing aids. Anything I've forgotten? Now you see why I say she is the boss of us! Such a little girl; so much stuff!

Seriously though, the equipment is all great- it allows Zoe the freedom to both initiate activities and (as independently as possible) engage in them. Genevieve and I were talking last night about the huge difference her walker has made in her life and her development (physically, cognitively and socially). Her glasses made an enormous change to her world, as did her various chairs we have used to allow Zoe, a girl who cannot yet independently sit, the opportunity to play and engage with her toys and other people. We are extremely lucky to live in a society that allows us access to these items (thank you Ontario government and other organizations that support children with disabilities) as well as friends and supports like Zoe's daycare who all help provide the equipment Zoe needs to excel. We are very proud of our little bossy girl, and grateful for all the stuff she needs to help her be that way and develop to the utmost of her abilities. We love you Zoe- keep up the hard work.

"Daddy's a girl"

2010-05-18T11:11:00.002-04:00

I recently shaved my beard for the first time in five years (I think I'll grow it back) and Zoe's reaction was quite funny. Zoe really touching loves faces and particularily men with short beards (like mine). She loves them so much that all her male preschool teachers have stopped shaving on days when she is going to be in, making for a very scruffy daycare staff. Anyway, the first time Zoe saw me after I shaved my beard she felt my face and then signed "Daddy" and "girl" over and over again while laughing her head off. So I guess it's very funny that Daddy is a girl!

More sign language news- Zoe has come up with a sign for Alison, one of her main teachers at preschool. She signs "girl" and then smiles- she will frequently talk about her at night after school or when we tell her she is going to school the next day. Alison is thrilled- though Anthony (her other main teacher) is a bit jealous and is working very hard with Zoe to say "boy" for Anthony. We tell him to be patient- the male signs on the top half of the face are harder for Zoe to say then the female signs on the bottom half of the face. Even though this is true I'm not sure it makes him feel better. Oh well, he's at least got the scruffy beard going for him!

Hearing Aids

2010-05-16T17:42:00.005-04:00

We picked up Zoe's trial hearing aids on Thursday. They are so tiny! So far we haven't noticed a huge difference. They are set pretty low and then we will move them up as needed. Zoe did smile when we first turned them on. Then she started frowning at her toy as if she did not like the new way it sounded. We also noticed that she orients toward sound more. For example- we put on music and she looked right at the computer where the sound was coming from. We have these aids on loan for three months so we can really get a sense of whether she needs them or not. They are fairly confident that she will need hearing aids. We just want to be sure we find ones that work well for her. We will go have her tested in a few weeks to see if they need adjusting. So far she is not pulling on them and they stay in place well. Luckily she does not have the fine motor ability to pull them off and put them in her mouth like her friend Whitney loves to!

They are so tiny it is difficult to see them when she is facing forward.

New profile picture

2010-05-10T14:48:00.003-04:00

I finally got around to replacing the profile picture- the previous one was from Halloween October 2008. This latest one was taken in March at the Philadelphia Flyers-Toronto Maple Leafs game Genevieve and Zoe took me to when we were visiting friends and family in Philly. Unfortunately (to Gavin at least) Philadelphia won the game- at least Genevieve was happy. Honestly though, with the season Toronto had, it's no wonder they won. Zoe had a good time, though it did get a bit loud at times- rowdy Philly fans, you know.

Happy Mother's Day!

2010-05-09T17:32:00.002-04:00

Spent the morning looking into making the bathroom more accessible. Looking at funding. Options. Etc.

Forced myself to go out to the local pub for some time away and a meal I didn't have to cook. Even better- I got to eat it while it was still hot!

Gavin is working today. Lyn, the respite worker, is here to watch Zoe while I surf the net, fill out insurance forms, bank online, and finally go for some respite time.

Spending the afternoon/evening assessing Zoe:

Checking her heels and palms for dehydration. Listening to her chest with the brand new stethoscope I bought Gavin for his birthday- he couldn't hear with the old one. Counting her heart rate- when it goes above 200 beats per minute it gets very hard to count.

We are day 6 of fevers. Can't remember when this cold started (maybe two weeks ago?). When the cough went to her chest (probably a week ago). She hasn't peed since early this morning. Protocol says 12 hours no urine output- drop an NG tube for feeds.

But she looks really good. Rolling around, playing with her toys. Her nail beds are purple but that isn't so unusual. Her heels are papery, cold, and stay in the triangle shape for over 10 seconds when I test them.

Ok, not a good sign.

But still. I will watch her. And think. And think. And think some more.

This is my mother's day.

But I wouldn't have it any other way. Because I get to be Zoe's mom. And I am really good at it.

And I love her.

A Night Away and Lots of Equipment in the Works

2010-04-25T17:56:00.009-04:00

Gavin and I went to a hotel last night while Zoe's respite worker, Lyn, slept over to care for her. We haven't done an overnight since last....September, I think. It was great to get some time alone, but how quickly the day/night went. We are again looking into other options for respite. Lyn is wonderful and takes great care of Zoe, but expensive compared to a group setting. Luckily, we get a set amount of respite money from the province to spend however we want. So we are able to have Lyn come once a week. With Gavin working so much, I have used the time to run errands, clean the house, laundry, etc which is not very restful. We are checking out a group situation where Zoe would go to sleep over for the weekend. We are impressed with how well they feed, bathe, and care for Zoe but the one piece that is a little lacking is the developmental play. We want to be sure that Zoe gets appropriate stimulation otherwise she will end up very frustrated and bored. We tease her preschool teachers that should open up a home on weekends and perhaps one of these days we just won't show up to pick Zoe up Friday afternoon!

Equipment

Hearing Aids:

Zoe continues to react in non-typical ways to her hearing tests and it is difficult for them to assess whether she has moderate hearing loss or is just not responding the way they want her to. We know from early tests that looked at her nerve function that she does have mild to moderate hearing loss on the one side and they were never sure about the other side. At this point, they recommend that we do a trial with hearing aids to see if it makes any difference. Gavin is looking at setting up an appointment for Zoe to get ear molds made. These molds would fit a variety of hearing aids so it is something we have to purchase outright. The aids themselves, once we figure what will work best, is thankfully covered by ADP (Ontario's Assistive Devices Program). ADP covers 75% of the aids and we think our insurance will cover the other 25%.

Wheelchair:

The other big purchase we are looking at is a wheelchair for Zoe. Shelby's mom gave us Shelby's old wheelchair stroller which has worked great for the last year and a half. However, Zoe's PT and OT do not think the chair works for Zoe any longer. She does not sit properly in it which misaligns her spine and puts pressure on her lower back. We are waiting to be seen by a seating clinic at Bloorview (the rehab centre Zoe gets therapy at). We will see what they recommend. Again, ADP and insurance should cover that which is great since those chairs typically cost anywhere from 3 to 6 thousand!

Play Chair:

We are also looking for a new play chair for Zoe. For a long time we borrowed a corner chair which was great. It was amazing to see how Zoe developed and was able to play because of the support the chair gave her. When she outgrew that, she used the seat of the wheelchair stroller in a special base called a spider base. The spider base moved up and down so we could adjust Zoe's height. And it had a tray so Zoe could easily play. It has worked great, but now that the seat is not right for Zoe, we have to look at another option. We borrowed a Flip2Sit, which we liked. You can check it out at:

http://www.bloorview.ca/bloom/flip2sit.html

The Flip2Sit was actually developed by people at Bloorview and it worked really well for Zoe. The straps go across her upper thigh so that she needs to support her trunk and upper body. It means more work for Zoe, but we could see how quickly it was building her core muscles. Initially, she was only able to sit in the seat for 5 or 10 mins. After two weeks, she was up to 45 mins as long as we put a table in front of her with toys so she kept busy. The chair is very easy to transport which is nice (the spider base chair is very large and not so easy to transport). I even imagine bringing the chair to the beach so Zoe can play in the sand (she LOVES sand) without us needing to hold her. Sounds perfect right? Only problem is that this type of equipment is "not necessary" and therefore not covered by ADP or our insurance. Which means paying the $400 out of pocket. We want to be sure this is the best seating system for Zoe. We don't want to spend the money and find out that she will quickly outgrow it. We don't anticipate that she will outgrow it quickly since she grows so slowly. Another really nice thing about the chair that other chairs we have looked at do not offer is that the way it supports her is the same way we support her when working on sitting on the floor. We sit behind her, support her upper legs, and try to stop her from flinging herself backwards. Obviously, we can not sit behind her all day long so it would be great to have a chair that does this for us. I think it would really help her to build up her core strength.

Zoe playing in the Flip2Sit. The "table" is a sick tray that we had already and it fits perfect as a table for Zoe.

Bath Chair:

And lastly, we were approved for funding for Zoe's bath chair (Thank You Easter Seals!). At $700 and not covered by ADP or insurance (again, not a necessary item....don't get me started on how bathing your child in a safe way is not necessary!) we are very happy the funding came through. So now we just have to wait for the chair to be delivered. We are also looking at getting a very large sink which will basically be a raised tub in our master bathroom. Bending over the side of the tub while lifting a wet and wiggling Zoe is proving to be hard on our backs. Even with the chair, we will have to bend to put Zoe in and take her out of the tub. The chair does raise her a little bit but the main reason we got it is to make bath time safer. Zoe has a habit of throwing her head back in an effort to drink the water. Which is what a lot of kids her age like to do- nothing more fun that drinking dirty bath water! However, since Zoe is not able to sit up, she then chokes on the water. After having Zoe turn blue and unresponsive as a result of this bathwater game she likes to play, we decided we better get the chair. At this point, we know that Zoe will continue to need full support while bathing for a very long time. So it is time to adapt the bathroom.

Fun Equipment- Adapted Toys!

We have also adapted one of Zoe's toys with a switch. Zoe had gotten a penguin slide (those old fashioned ones where the penguins climb the stairs and then go down the slide) as a gift and loves it. She has gotten the hang of holding down the switch button so the penguins do their thing. We had an extra switch cable so we adapted a dog that she absolutely loves. The dog sings and flaps its ears when Zoe hits the switch. It is great that Zoe understands how to operate these toys. It opens the door to lots of fun possibilities in the future.

You can see the yellow switch to Zoe's left. It is very easy to operate and turns on with the slightest touch.

We Miss You, Grandad!

2010-04-17T14:22:00.003-04:00

Gavin's dad (Alan) left Tuesday after staying with us for the past two months. It has only been a few days, but we miss him already! Alan had taken a sign language class before visiting and I think that really helped him connect with Zoe. Zoe's signs are still difficult to read at times, but knowing the language certainly helps. Zoe had a great time with him- going for walks in the wagon, swinging in the backyard, or just playing around the house.

I certainly miss grandad today since Gavin is working this weekend (again! Gavin has worked every weekend except two since last August). Alan was a big help on weekends. After working all week, it is exhausting caring for Zoe on the weekend. She isn't the type of kid I can pour a bowl of cereal for and set her in front of the TV or tell her to go run around in the backyard by herself. Alan is always willing to unload the dishwasher, throw on a load of diapers, watch Zoe while I nap or run errands, etc. (Not to mention the huge accomplishment of insulating our basement headers! A project we have been working on since Alan last visited in November). We don't have any family in town, so it was really nice to have him here. It is amazing what a difference it makes to have that type of support.

I think Zoe was really missing Alan today because she kept signing "daddy" and then "grandad" repeatedly while making a sad face. I gave her some snuggles while she cried and signed their names. She even produced a tear while crying! That is only the second tear we have ever seen in Zoe's lifetime. After a few minutes of snuggling and crying she went back to playing. I think she just needed to express how she is feeling.

We hope this post doesn't make you sad, grandad. We just wanted you to know that miss you!!!!!

Colours and Behaviours

2010-04-06T14:54:00.003-04:00

Zoe Knows Her Colours!

For the past few months, we began to notice that Zoe knows some of her colours. It started with just red and orange and she sometimes recognized yellow. I figured they were teaching colours at pre-school and didn't think much about it.

Then, a couple of weeks ago I tested Zoe. I noticed right away that it is best to test Zoe with two of the same objects. Otherwise, she just picks the object she likes instead of pointing out the colour I am asking her about. Our friend Patrick had given her an ice cream game for her birthday that has ice cream scoops of different colours.

And so I tested her. First red, then orange, yellow, green, blue....wow Zoe you know a lot of colours! Then brown, black, white, purple and I ran out of similar coloured objects to test her with. At one point we tried to get tricky with her and put two objects down that were not the colour we were asking for and Zoe got mad and slammed her hand down as if she was saying, "Don't try to trick me!" We also tried three objects at one time but noticed that Zoe got very disorganized and was not able to concentrate on three choices at once.

Zoe enjoys playing this colour game now and will even sometimes point out the colour that I am asking about and then take the other toy for herself to play with. As if she is saying, "Here you go mom, you said you wanted the red one. I am going to take this other one to play with."

I was curious so I asked school about it. I thought they were sitting the kids down and saying, "This is red. We are going to paint with red. Can you find the red truck? etc" but it turns out that they are just talking about colours as they are doing other things. So Zoe (like the other kids) is just picking up the colours from conversations and play. Which is great because that tells us something about Zoe's learning style. After we learned this, the teachers have been testing Zoe too and they agree- Zoe can correctly identify all of her basic colours.

What Else is Going on in That Head of Hers?

Then it got me thinking- what else is Zoe thinking about that we have no clue. And so we started finger spelling. So far the only two words Zoe consistently correctly identifies is "dog" and "Allison" (her teacher from school). I think it is hilarious that she recognizes dog but can't spell her own name!

Zoe has also been trying to identify adults when talking about her teachers at school. For example, she used to sign "mom" for her female teacher but now signs "girl." The other day when she was walking around the hospital, I noticed that when she passed a man she immediately signed "daddy" as if she was saying "He's like daddy." So we are working on "boy" but that takes more fine motor coordination than "girl."

If you ever see me on the subway with Zoe then you may think I am just crazy. The conversation goes something like this:

Zoe signs "daddy" while looking at a man.

I respond, "Yes, that is a boy like daddy."

Zoe signs "kiss."

I respond, "No, we don't kiss strangers" at which point the man begins to look uncomfortable and is thinking "what a nutter, that kid isn't saying anything."

If the person is eating Zoe will sign "Zoe eat."

To which I have to respond, "No Zoe, that is not your food." Again, the stranger looks at me like I am nuts.

What people don't understand is that I can't just ignore Zoe's questions and requests. First of all, she would get really frustrated. And secondly, she is persistent. She will just sit there repeatedly signing "kiss, kiss, kiss, kiss" until I tell her "No you may not kiss that stranger who happens to be a boy like daddy!"

Zoe Able to Control Herself

The other thing we have been working on is helping Zoe identify how she is feeling and to help her appropriately express those feelings. And Zoe has done amazing with controlling herself. For example: Zoe will sometimes pull our hair or pinch our faces when she is very excited to see us. So we will say, "Be gentle Zoe" while taking her hand and gently touching our faces with her hand. Now, we can say "Zoe, what are your hands doing?" And Zoe (usually) will immediately stop being rough.

Another example is the other night Zoe was angry at me for making her go to bed. She kept signing "angry/grumpy" and "mom." (Yup, she likes to let me know that I am the one she is mad at- gee thanks kid!) When I started to put her in her bed, she leaned forward with her mouth open to bite my shoulder. I said, "Zoe, what are you doing with your mouth? Can you make a good choice here?" She immediately leaned her face away from me and again signed "angry" while making a sad face. I thanked her for telling me how she was feeling by using her words instead of biting me.

As her mom, it gives me great hope that Zoe is aware of her behaviour and that she can control it. Zoe will even follow directions (like go into your room to get ready for bed) when she obviously does not want to. I think that is pretty impressive for a three year old!

Our Trip to Philadelphia

2010-03-14T11:15:00.011-04:00

For Christmas, Zoe and I bought Gavin tickets to the Maple Leafs vs Flyers game in Philadelphia. Why Philadelphia? Two reasons- the first is that it is nearly impossible (and very expensive) to get hockey tickets in Toronto. The second reason is that my "little" brother and his wife live there along with several of our friends. Gavin and I met in Philly and lived there several years before moving to Canada. So off to Philly we went. We drove since we are not supposed to fly if Zoe is congested and when isn't Zoe congested in the winter? Zoe did great on the long car ride down (it took us 11 1/2 hours with stops) on Friday. Saturday, we met with Ruth and Ulla- two friends that I used to work with.

Zoe hanging out in the bathroom at the store where Ulla works. She thought this seat was hilarious.

Zoe playing with "grandma" Ulla at Ulla's new apartment. Ulla is a wonderful volunteer I had the pleasure of working with in Philly. She is one of those people who you can never guess her age because she seems to have boundless energy and she is always so giving. She has been an avid follower of Zoe's blog and it was great seeing her again. It is amazing how much support we feel from someone we don't get to see as often as we would like.

Saturday night we had another get together to celebrate Zoe's birthday. Kristen made a delicious cake- can you see Zoe is even bringing some of the cake to her mouth herself! Zoe was then thoroughly spoiled with more gifts after dinner. Her favourite is the Flyers jacket from Uncle Joe and Aunt Kristen!

Zoe at the hockey game on Sunday! She spent half the time bundled and patted firmly to help her stay calm with all the noise. But some of the time she was full of energy and ready to play.

This is the only picture I have of Joe and Kristen from the whole weekend. How can that be? I guess we were too busy visiting and not always getting the camera out. I can only imagine Kristen is saying something about yellow helmet or free skate in this picture :)

Patrick and Zoe discuss the game after. They look like they are having a serious discussion.

Unfortunately Zoe did not feel well for the rest of the trip. She has had a cold for the past several weeks and she started running high fevers on Sunday. So we cancelled our plans for meeting up with friends and doing shopping on Monday and just hung out at the house. We left early on Tuesday to split the drive into two days. We stayed at a motel Tuesday night and Zoe was miserable. Up every two hours with a high fever that required Motrin and Tylenol and cold baths to keep them at bay. We hurried back on Wednesday after Zoe had what we think was another short febrile seizure. Once we were home, she seemed better so we held off talking to the doctor until Thursday. The doctor wanted us to go there Friday for a chest xray. The xray, as always, was inconclusive. There is definitely some "findings" but it is hard to tell if it was just pneumonia or some chronic lung changes. Since this is the fourth or fifth (we've lost count) pneumonia this winter, Zoe's doctor is sending us to see the "chest team" at the hospital. We don't expect to get any answers but we are willing to go and see what they have to say. Perhaps we can come up with a plan for when Zoe runs these fevers. We are unsure if we should bring her to the doctor right away since we are usually told, lets hold off on antibiotics for a few days and see how she does. Which we are fine with- we don't want to give her meds if she doesn't need them. The tricky thing is that her pneumonia is not a typical pneumonia where it is bacterial and you treat it with drugs. It is often a viral cold that causes Zoe to produce more mucus which shows up as pneumonia in her lungs. So even when we give her antibiotics, they don't do anything since the underlying illness is viral.

The exciting part about the chest xray is that Zoe was able to do this one lying down instead of in that bicycle seat/plastic tube contraption she is usually in. We did this xray in the community office in the basement under the paediatrician's office. That way we didn't have to go to the hospital. We weren't sure if Zoe would stay still enough but she did a great job. She thought the xrays were hilarious- she was laughing the whole time. Which is much better than her crying and screaming which is what she usually did in the plastic tube. Who can blame her? It doesn't look comfortable.

Grandad Visits and It Snows! (finally)

2010-03-14T10:41:00.006-04:00

Getting caught up on posting. Here are some cute pics from late February. We haven't had much snow this year but we did finally get enough to try out our new sleigh.

Grandad and Zoe reading a bedtime story. Grandad came for Zoe's birthday and is still visiting. He has been busy trying to finish insulating our basement headers while balancing getting enough play time with Zoe.

Zoe laughing her head off in the wagon/sleigh.

"Pull faster daddy!"

And of course, no trip to the park is complete without some sliding time.

Happy Third Birthday Zoe!!!!

2010-02-26T19:29:00.007-05:00

Zoe turned 3 on Sunday!

It's hard to believe our little girl is three already. Time goes so slowly when we are in a health crisis but then just flies by. We turn around and suddenly, Zoe is three! Zoe's grandad came out for her birthday and we decided not to have a big party this year. With everything going on, we wanted to take it easy. So we just had cake and a couple of friends came over. (That doesn't count as a party right?) Zoe also had ice cream at school with her friends and we are having a party in Philly when we visit there next week. I guess that is 3 celebrations for a 3 year old. None of them a lot of work for us (which is a very good thing!)

Zoe showed a lot more interest in her birthday cake this year. She really wanted to play with the candles while they were lit!

Take that cake!

Zoe and Riann at Zoe's non-party.

Zoe showing off the medal she made in school today. She is getting into the Olympic spirit. (Ok, this isn't a birthday picture but was too cute to leave out of the post).

A Lovely Afternoon

2010-02-19T19:34:00.003-05:00

Zoe Back at School and Eating Well

Zoe returned to preschool for full days yesterday and today. I picked her up early because I knew she would be tired. Because she wasn't over tired, she did great with the car ride home. No screaming! We then had a lovely dinner. At first I thought, "I will just give Zoe jar food and cheese, she is probably too tired to eat anyway and Gavin is working." Then I decided to make us a nice meal and Zoe did great. We sat together, shared food, and Zoe did such a great job at using her signs to ask for more or indicate she was all done with something. It was one of those moments when I remembered why we all work so hard to have Zoe eat orally. She just loves food (when she is feeling well). She ate 1/4 of a cheeseburger, a few tablespoons of sweet potatoes, a few bites of cheese, AND an entire 7.5 oz jar of baby food. Followed by some prunes for dessert! The whole time Zoe was laughing, smiling, and signing. She also makes the funniest "mmmmm na mmmmna" noises when she is enjoying her food. It was so nice to have a relaxing afternoon where I could just play with my daughter, share a meal, and then put her to bed.

Now, maybe she will stay asleep and I can have a few hours to myself. This will be the first time in weeks...months maybe? that I have had a chance to relax by myself. So why am I typing here....I've got TV to watch and wine to drink :) Wow, that is an exciting Friday night!

Spoke/ Blogged Too Soon

2010-02-11T08:34:00.006-05:00

NG tube goes back in and Zoe is back in our bed.

After a whopping three days of feeling well, Zoe came down with a gastro infection. She couldn't keep anything down and was vomiting bile so back to the doctor's we went on Tuesday. The doctor gave us an anti-nausea medication that they give kids in the emergency room. It worked and Zoe only vomited once after starting the med. That night she drank the electrolyte solution pretty well (she was probably so thirsty after throwing up all day). Unfortunately, by yesterday afternoon she had not drunk or eaten much so she was getting seriously dehydrated again. She just didn't have the energy. Since Zoe never had a chance to gain back the weight or get well rehydrated after the last illness, she does not have any reserves. So we put the NG back in last night to give her the electrolyte solution. She is tolerating the feeds so far. We are trying to do everything we can to avoid going in to hospital where they would hydrate her via IV. Zoe is a really hard stick at the best of times but impossible when dehydrated. We have gone several times in the past for IV hydration only to find they can not get access to a vein. Or, after multiple sticks, they get the IV in but it lasts less than 24 hours. So, hopefully she will continue to tolerate NG feeds and will slowly increase her oral feeds again. Lyn (Zoe's respite worker) is coming over for a few hours today so I can get some sleep. Gavin is working a 12 hour shift at the hospital, so no rest for him! We hope (and maybe we will laugh at the naivety of this later) that Zoe perks up a bit today so we can bring her for a few hours of preschool tomorrow. I think it would be good for her to get out of the house a bit.

We are starting to feel a bit isolated and lonely here. Gavin pointed out that it has been weeks since we could do anything "normal" or fun with Zoe. We haven't even had time or energy (and she hasn't been up to it) to take a walk around the block or go on the swing in the back yard. We see other parents out our window bundling kids in their snowsuits and playing in their yards (we just got a little snow). It is difficult to explain the emotional impact of that on us at a time like this. It would probably be dramatic (although somewhat accurate) to say it breaks our hearts.

I had a small breakdown on Monday and Gavin had one on Tuesday.

But then we took a deep breath,

dried our tears,

told ourselves to suck it up,

rolled up our sleeves,

and said,

"All right, let's go again."

Just for Fun

2010-02-06T12:20:00.004-05:00

We try to make working on Zoe's goals fun for her. Zoe got a toy in this box at Christmas and she loves sitting in the box and picking up one packing peanut at a time to drop on the floor. She actually does some great sitting in this box. Plus she is working on her fine motor control as she picks up and drops repeatedly.

Look at that dropping skill!

And I love how she looks up to say, "Who me? I wasn't dropping things on the floor!"

MRI and Ophthalmology Results

2010-02-05T11:41:00.005-05:00

Zoe on the Upswing

First, I wanted to post that Zoe seems to finally be on an upswing from this latest illness. After three weeks of fever and cough (she is still coughing some but definitely getting better) and a few days of NG tube feedings, Zoe does seem to be feeling a lot better. She did a half day at school yesterday as was so excited to be there. Gavin tells me that Zoe was like a celebrity when he brought her in. All the kids crowded around and wanted to talk and play with Zoe. She of course just ate it up and was smiling and laughing up a storm. I dropped her off this morning for a full day so hopefully she makes it through the day. If not, they will page me and I can pick her up early. The daycare is a five minute walk from my work, so it is very easy to get to her fast.

This past illness Zoe showed a lot more signs of being uncomfortable and in pain than she has in the past. It was really hard seeing her so unhappy for so long. She is usually so easy going. I think the high fever is what made her so miserable. I don't blame her- I would be way more grumpy than she was!

Gavin says that Zoe only weighed 18 pounds (she was almost up to 20 pounds before this latest illness) at her appointment the other day. We are hoping most of that will come back quickly. She has her three year check up soon and we are hoping to see her at that 20 pound mark! We don't stress about Zoe's weight like we used to. We know that she is growing and healthy and will be as big as she is. We know she gets enough to eat (when she isn't sick and we have to resort to tube feedings to keep her hydrated). So the weight thing has become a joke between us. Last appointment Zoe was 19.9 pounds and we were like "Come on Zoe- only .1 to go!"

Sleeping Issues

Unfortunately, Zoe is having some major sleeping issues these past few months. Initially we thought it was because we had a guest staying in the house (Gavin's dad was here for several weeks). But Zoe has continued waking up, screaming in the night. Of course she woke up a lot when she was sick due to her fever going high and her feeling miserable. We are still hoping that since she is feeling better, she will start sleeping better. I wonder if she is having night terrors or sleep disturbances. This is quite common in children with neurological differences and most of the other 1p parents say their children have sleep issues. It can become a real issue when the child is older and able to climb out of bed. For now, even when Zoe wakes screaming at least we know she is safe in her bed and hasn't fallen out.

MRI and Ophthalmology Results

My excuse for posting is to give an update on our most recent appointments.

MRI- met with Neurosurgery on Wednesday. Zoe's syrinx from her T8 to L2 is still there, it has not changed. She does now have another collection of fluid in her cervical vertebrae. We were hoping to be told the syrinx has shrunk or stayed the same. So, not so happy to hear there is more fluid. But we were reassured that as long as Zoe is not showing any symptoms, surgery should not be necessary. He checked Zoe's reflexes (which she usually does not have a typical response to but never has) and her muscle tone in her arms and legs. His concern is the the new collection of fluid could affect her arm/hand control. Due to Zoe's weak muscle tone it would be hard to tell which is muscle and which is due to a syrinx. Despite this, the doctor was very impressed with Zoe's strength. And he kept commenting on how amazed he was at Zoe in her walker. He did not even recognize her initially. We, of course, are quite proud of how mobile Zoe has gotten so we purposely brought the walker in for him to see. We also know it is important for him to see if her leg function is being impaired at all.

Ophthalmology- saw the doctor 1 1/2 weeks post tear duct plug insertion. He says that Zoe's eyes look less dry already and is happy with how it looks. He is not sure of his long term plan for Zoe if these plugs fall out (which they frequently do). But I guess we just have to go with what is working for now. He even reduced the eye gel from four times a day to just once! Zoe does well with getting the gel in her eyes, but once less thing to remember three other times in a day is a nice break for all of us.

Rough Night/ Rough Winter

2010-01-28T08:41:00.007-05:00

Zoe Sick Again

Zoe has another cold. Like aways, it seems to take her weeks to get over it. We were very lucky that her MRI happened when she was actually well. We were at the doctor's yesterday and the good news is that her lungs sound good. So hopefully she will fight this one off without too much medical intervention. The high fevers (spiking over 39 C/ 102.2 F) makes me a little nervous since that is with Motrin and Tylenol around the clock. We were told to return Friday morning if the fevers did not go away. Since they are getting worse (she was just 39.6 C/ 103.3 F with Motrin on board), we will be heading back to the doctor's in the morning.

Not Blogging Much

We haven't blogged much lately since we have been having a rough winter. Although this winter does seem a little better than last (knock on wood!). Zoe has been making some amazing communication/cognitive gains- she knows some of her colours, is making choices, understands consequences, is following two step commands, etc. At the same time, Zoe's physical development is progressing very very very slowly. She is still not able to sit on her own and can not scoot or crawl at all. She does amazing in the walker and we try to have her in it as much as possible. It is like she is a different child- she strides around the house in complete control and in charge of where she wants to go. She does get frustrated that the toy she worked so hard to get to falls on the ground and she is not able to pick it up.

Conference Plans for Salt Lake City

The conference will be held in late July in Salt Lake City this year. Plans are under way and we are looking into costs. We really want to go again this year. We get so much out of being around other 1p36 parents. It's hard to think ahead right now since we are struggling to get through the day. But it does give us something positive to look forward to.

There are lots of positive things to focus on.

Lots of negative things too.

Which I guess is why I haven't posted much lately. It is too easy to focus on Zoe being sick all the time right now. Or to ignore that and focus on the more positive gains she is making. I feel like it does not really give a picture of what life is like right now. But I guess that is how it is for everyone.

And so I post to keep people up to date.

MRI and Tear Duct Plugs

2010-01-16T13:51:00.003-05:00

MRI

Zoe has been due to get another MRI since October 2008 to check on the status of the syrinx in her spine. In the fall of 2008 we met with anesthesia to discuss the difficulty people have with getting an IV into Zoe. During her MRI at six months of age, they were unsuccessful (after more than 20 tries) to get an IV into Zoe and therefore proceeded without IV access. This has a lot of risks to it. So in October 2008, they decided to hold off until fall 2009. We were set to bring her in for her MRI last November, but since she had H1N1 in early November, they did not feel comfortable giving her full anaesthesia. So again, it was put on hold.

On Wednesday this week we got a call that they booked Zoe for Friday morning. Zoe was healthy (as healthy as Zoe gets which means occasional fevers but her lungs sound clear) so we were able to go ahead with the test yesterday.

They were able to get an IV in on the third try. They seemed unhappy about this (Zoe was given anaesthetic air first so she was asleep and I guess they are used to having more success with IVs when the child is sleeping) but we were very happy they got it at all.

Minor Eye Surgery

When we found out the test was booked for Friday, we started a flurry of emails and phone calls to coordinate with Zoe's opthalmologist. Zoe does not produce tears and despite us putting in tear gel four times a day, her cornea are becoming dangerously dry. When the cornea become too dry, there can be permanent damage and blindness. Obviously, not a good thing. The original plan was to put tear duct plugs in the bottom two tear ducts. That was six months ago. Yesterday, the ophthalmologist mentioned that he would prefer to do all four tear ducts since Zoe's eyes have gotten more dry.

We were very happy that they were able to coordinate both procedures. This meant that Zoe would not have to return to the hospital to get another full anaesthetic. We had to really push for this, but we were very happy that they listened in the end and were willing to do what is best for Zoe.

Recovery

If I haven't said this before, Zoe is amazing. She was groggy and a little grumpy yesterday but did great with recovery. I think she was having some bad dreams because she was whimpering in her sleep and wouldn't settle down until one of us held her. But she ate and drank great. And last night she slept most of the night.

Zoe is so tolerant of not feeling well. At one point when we were making dinner, Zoe made a noise so I went to help her with her toy. She squawked at me, pointed at a small puddle of puke on her toy, and looked up at me as if to say, "Mom, get that puke off my toy." I wiped up the puke and Zoe went back to smiling and playing with her toy.

I tell you, she really is amazing.

Another Saturday Night

2009-11-21T22:29:00.002-05:00

Just another day in caring for Zoe.

She only had one small pee today. Which means force feeding her. Which I hate. And Zoe has always hated but can now sign "angry" to make sure I know she hates it.

And just another bath.

Where Zoe tips her face back into the water in an attempt to drown herself. She sucks the water into her lungs. I sit her up while she chokes. But after a few seconds she takes a breath.

And I wonder.

How many more baths like this?

How many more times do I have to bend over and give her body total support just to get her clean?

How many more times is she going to choke herself?

And I already know the answer to that- too many to count.....as many as it takes....and it doesn't really matter how many since I will always be here with her.

As I scrub her scalp medicated shampoo into her head Zoe accidentally knocks her turtle toy so the neck makes the cracking sound she loves. I see a tiny smile start and a small chuckle, "Heh heh heh."

And I think two thoughts simultaneously:

"This kid is going to kill me."

And

"My god she is gorgeous."

I ask Zoe, "Are you breaking necks?" (This is a game we play with her cracking turtle). Zoe throws her head back in a full grin and looks at me expectantly.

And I think, "How did I get so lucky?"

Fun with the swine flu

2009-11-11T16:29:00.009-05:00

So Zoe was hospitalized for the H1N1 virus this last week. She was in for 8 days and is now at home on NG feeds. She had been slightly sick a couple of weeks earlier but as Genevieve was a bit sick then and Gavin had a really bad headache/fever for a couple of days we thought she had managed to avoid it too badly. We were hopeful this was our brush with the swine flu. Then Genevieve got sick again for five days or so (and Genevieve doesn't usually get sick). Zoe was still well however. As she is in the "high risk" catagory she got the H1N1 vaccine on Friday the 30th of October, about 2 days after it became available up here. She had a bit of a temp over the weekend but was in good spirits and eating well - we just thought it was a reaction to the vaccine (and actually, it could have been just that). On Monday we sent her off to school and she had a good day. Monday evening though she started fussing and spiking fevers up to 39.5 degrees centrigrade (103 farinheit). We went to the Emergency department at Sick Kids (where Gavin works) and her temp was taken at 37.5 centrigrade (37 is "normal- Zoe usually runs half a degree below that)- we think this temp was incorrect as they did it in her armpit instead of her butt (which Zoe actually likes- strange girl) and she was squiggling a lot. Never- the-less we jumped the cue due to Zoe's complicated medical situation. and got into a room in the ED. Good thing we did because a half hour later she had a febrile seizure and temp was up to 40.5 (105 farniheit). The seizure lasted a couple of minutes. They gave her rectal Ativan which she promptly pooped out. Her airway stayed open but they couldn't get IV access after six tries so that was a bit tricky. They eventually got a line in on the seventh try later on. We were not happy about the seizure- Zoe (unlike a lot of the 1p36 kids) has never had seizures before and we weren't anxious to start. But hopefully this was just a febrile seizure and not part of an underlying epileptic condition. She only had the one, so that is good news.

She did well in hospital, just made slow progress. Typically the fever with H1N1 lasts about four days- she is now on day 10. She isn't eating or drinking much, hence the NG (which she has already pulled out once). But she is eating more each day. Not drinking a thing, but that is how Zoe is when she is sick. We are comfortable managing the NG at home; we ended up doing it frequently last winter to keep Zoe out of hospital. Hopefully we will be able to remove it in the next few days. She was on a small amount of oxygen while in the hospital for a few days but only by mask, nasal prongs (useless- they always end up in her mouth or her eyes) or blow by.

It was tough being in hospital again. Zoe's grandfather Alan is here right now- he came in from Calgary to help us around the house but ended up doing our laundry and bringing in fresh laundry, food and clean cloth diapers in for us. It was a big help, as both of us stayed at the hosptial with Zoe to do her care, run her feeds, take her temps etc. When Zoe is in we like to do most of her care anyway. Genevieve took Tuesday and Wednesday off but went back to work Thursday and Friday. As she works on the 5th floor of Sick Kids and we were on the 7th it made her commute a lot shorter (unless she got stuck on the stairs behind some big fatty around the sixth floor). Gavin ended up working two twleve hour shifts in the Emergency room on Saturday and Sunday, mainly because two of our other staff were out with H1N1 themselves and the sole remaining person had worked 5 days straight. So we are all pretty much exausted- Zoe from being sick, Gavin and Genevieve from looking after Zoe, sleeping at the hospital and working too much (on Sunday evening I remarked to a colleague that I hadn't been outside the hospital for 48 hours- shortly after Genevieve found me and made me take a walk with her!) and my dad from running around and doing all our scut work. But we are home. Zoe was one excited little girl when she saw she was going to get to sleep in her own bed yesterday after coming home!

Zoe sleeping in her big girl hospital bed. This was the first time she has ever slept for any length of time in a large bed. It was useful though, because for the first couple of nights she was so restless mom or dad would have to climb up there and sleep with her. Not very restful for us (Zoe is not a peaceful sleeper) but what she needed!

Zoe and her wonderful respite worker Riann, who came in on her own time to give mom and dad a quick break one day.

------------------------------------------------------------------------------
An update- it's now the 13th and we pulled Zoe's NG tube last night. Sounds like she had a good day at preschool today and is eating better. So hopefully she is on the rebound.

Equipment

2009-10-31T20:59:00.016-04:00

Bath Chair

We tried out a surfer bather hydraulic bath lift but we have found it is not a good fit for us. It was great at lifting and lowering Zoe into and out of the bath but since the lift weighs as much as Zoe and we do not have a second bathtub, setting it up is as much work as lifting Zoe. From trying it out we did figure out that we do want to look into a bath chair as an option at this point. Zoe is still not able to support herself at all in the bath and has started a behaviour where she flings herself back in order to drink the water. Kids at this age typically try to drink the water but since Zoe is on her back she ends up choking and aspirating on the water. Which is not a good thing! So we are waiting to try out some different bath chair options.

New Therapy Plan

Zoe just started at a rehab centre. She will now go there for therapy rather than the therapist coming to our house as they have done until now. We are excited to start this next phase of Zoe's therapy because we know it will be more intense and push her more. We are a little worried that this will be very hard on her. But we know that it is good for her in the long run.

The Never Ending Parental Guilt

During Zoe's assessment for the rehab centre it has become quite obvious that her therapists have not been pushing her as much as they should have. And we knew this for the past little while but since Zoe had such a rough winter we didn't want to push her too much. Since Zoe has been sick, we focused on other goals like communication, social, and walker skills. We know that we are amazing parents and that Zoe has grown so much but still we do feel guilt that we did not push her more with physical therapy. Does any parent not feel this guilt all the time? No matter how much you give your kids, it never seems like enough. As a parent, you want them to have it all. So we try to sit back and see how far Zoe has come. And the reality is Zoe would still be very delayed physically no matter what. She was far too sick most of this past year to have much energy for focusing on gross motor skills. It is actually amazing that Zoe is doing as well as she is considering all of the challenges she faces every day.

Zoe is finally big enough to sit at the table like a big girl to play or eat. She is quite proud of herself. She even signs "Zoe proud" when she is especially proud of herself these days. It is amazing how she is starting to pick up on social expectations/ pressure. She had to go to the back of the line at school for pushing and she was very upset about it. She kept signing "Zoe" with a sad face when the teacher was telling me about it. I guess she learned though since she hasn't pushed in line since then. We are encouraging her to feel proud of herself when she does the right thing by telling each other about it, "Daddy, Zoe wants you to know that she turned the light off in her room all by herself" or "Zoe wants you to know that she helped pick which vegetables I should chop up first for the stir fry" etc which results in Zoe smiling and signing "proud."

Oh no- what would our Scottish relies think! Great Grandma Ross already warned us, "She's a bonny wee babity but don't tell her she is so bonny or she will get to be too proud."

Erin (Shelby's mom) gave us a bunch of Shelby's old clothes and this blow up donut thing. At first we thought this would never work for Zoe (she keeps flinging herself backward). But we are trying it out to work on sitting skills. It seems like we have been working on sitting forever but we try to remind ourselves it has only been 2 1/2 yrs. Zoe still can not sit on her own at all so we are hoping this will give her practice time to build strength and muscles she needs for sitting.

And Zoe thinks it is quite fun to lay in the donut as well! Daddy thinks her new hat is fun too. We also go one with jiggly bells on it and Zoe thought it was hilarious when she moved her head and heard the bells jingle.

Daddy and mommy got some new equipment too! Zoe was checking out our new treadmill. It has become obvious that we will never have time to leave the house in order to exercise and so we invested in some exercise equipment. We have been enjoying the time together to catch up on our day while exercising after Zoe is in bed. And we keep each other motivated. Lifting and caring for Zoe is really starting to put a strain on both of us physically so we know it is important to make sure we stay in good shape. Plus it is a great stress buster at the end of a hard day.

Our Thanksgiving Holiday

2009-10-31T20:20:00.013-04:00

The Ontario Cottage Experience

"Going to cottage" is a very popular holiday plan for many people from Ontario. We planned to camp this September but never made it there so instead we decided to do the traditional cottage experience since camping in October can be a bit chilly. We were quite pleased with how relaxing a trip it ended up being. We went to Gananoque in the 1000 islands area.

I took a long time researching cottages to find one that Zoe could easily use her walker in. This cottage was great because the scenery out the front window was gorgeous. We were right on the river with our own private beach.

Zoe sits with daddy while enjoying her first cruise.

Zoe tuckered out from storming the castle.

Zoe laughing with mommy on the cruise ride back to the cottage.

Zoe was getting a bit tired by this time but luckily daddy brought a toy that was both entertaining and yummy!

This is the pier that was right outside our cottage. Zoe did a great job walking up and down it every night. It gave us a chance to get outside to enjoy the scenery. And we were amazed that Zoe did so well walking on uneven ground. She did get a little frustrated at times because she couldn't understand why she couldn't go swimming.

Family shot while sight seeing at the top of the 1000 islands Skydeck on Hill Island. Zoe's favourite part of this day trip was walking in the bathroom and the elevator. Doesn't Zoe look too cool for her parents with her new transition shades?

Last stop on the way home- Chucky Cheese! It wasn't quite as fun as mommy remembered it being from when she was a kid. But it is a great place to bring a kid like Zoe. She got to ride her first merry-go-round, she loved this car that bumped up and down, and she really liked licking the skee balls! It was a great place for her to be able to run around in her walker and get to pick what she wanted to do.

Zoe's favourite part of Chucky Cheese was the slides. It is actually quite a work out for us to put her at the top and catch her at the bottom but that smile is well worth the effort.

Zoe's Prescription for Happiness

2009-10-16T19:25:00.002-04:00

I was having a conversation with Zoe about how I have not been feeling well lately. Working in the field that I do I know how much kids pick up on when we think they are clueless about what is going on. As if that was not enough to prompt me to make sure that Zoe knows what is happening, her teacher asked me how I was feeling when I dropped Zoe off yesterday at preschool. I had stayed home from work last Friday and Gavin took Zoe to school so I figured that is why she was asking. But she elaborated and said that Zoe had seemed worried about me and was signing "mommy" and "hurt" at times. And so I had this conversation with Zoe today:

Genevieve: "Mommy hasn't been feeling very well but she is seeing doctors so they can help mommy feel better. Hopefully mommy will feel better soon. But you don't need to worry about mommy."

Zoe signs "kisses"

"Oh, are you going to give mommy kisses to help her feel better?"

Zoe smiles.

"That's a good idea. Kisses would help mommy feel better. What else do you think will make mommy feel better?"

Zoe signs "milk"

"Milk? You think milk and kisses will make mommy feel better?"

Zoe smiles and signs "play"

"Oh and playing will make mommy feel better too. Kisses, milk, and playing. Anything else?"

Zoe signs "sleep"

Laughing I say, "Yeah you are right, sleep would help too. So is that what mommy should do, get lots of kisses, milk, playing, and sleep?"

Zoe smiles and signs "mommy" "happy"

"Yes, you are right Zoe. I think those things would make mommy happy."

So there you have it- Zoe's prescription for happiness:
kisses, milk, playing, and sleep

Sounds good to me!

What's New?

2009-09-20T11:35:00.017-04:00

New Glasses

Zoe's glasses were lost two weeks ago at school. Her teachers are always very responsible with her glasses and other equipment and felt terrible about them falling out of a side pocket of a bag when they were on their walk. I think they were more upset then we were! So we ordered new glasses and they came in on Friday. We were so happy to see Zoe in glasses again. What a difference it makes in her looking and focusing now. As soon as the new glasses were on, Zoe just kept looking and looking at everything. When we got home, we put her in the walker and Zoe just took off and kept laughing and smiling like she was saying, "Hey, I can see everything again!" We were looking at replacing the old glasses soon anyway since they were starting to press on her temples. And this time we got transition lenses so Zoe can see better outside. So far we are very happy and so is Zoe. She keeps signing "Zoe happy."

Zoe posing for the camera in her new glasses.

Zoe's New Big Girl Role

Now that Zoe is a big girl and goes to preschool, she is starting to have jobs around the house. Currently, it is Zoe's job to feed the fish, oversea daddy cleaning the fish tank, turn off the light in her room, and sometimes Zoe will help us with preparing dinner.

Zoe helping Daddy clean the fish tank.

Zoe helping make pizza.....

....sometimes throwing the cheese on the floor is more fun than putting it on the pizza!

Zoe's New Fish

Zoe adopted Brittany, the fish from school. After rearranging the classrooms this summer, Brittany no longer had a safe place to live. We were very excited to take her home. Zoe knows that Brittany is her fish and therefore, she has to take very good care of her. Gavin was just a little bit excited about having a second fish tank!

Zoe showing Brittany her rolling toy.

New Look for the Pony and New Walking Style

We used to use a basket on Zoe's pony with a toy in it as a way to motivate Zoe to walk. Lately, she became so interested in the toy that she would just stand there and play with it. So we have taken off the handle bars and basket so the pony is open in the front. Now, Zoe is able to get right up to tables, chairs, etc to reach things better. And she can see where she is going so she is not distracted from walking. We have noticed big changes in Zoe's walking style. She used to walk just for walking sake and just run around when in an open area. Which is typical of kids when they are first walking. Now, like an older child, Zoe will take off and run over to a toy or something she wants to play with but does not do a whole lot of walking for walking sake. She now expects to walk to get where she can play. We have set up different areas of the house for her to explore and play in. School has done a really great job with this as well.

The other way her walking style has changed is that her coordination has really come along. Zoe now gets a full gait going with opposite arm swinging at the same time her leg is moving forward. It is very exciting to see this development. Zoe can now back up and move away from things when she is stuck. Every now and then she gets really stuck and will squawk for help, but mostly she is very independent (and has to be watched or she will really take off!).

Zoe playing with her pom pom outside of her "bat girl" cave.

Zoe stopping to play with one of her favourite toys while walking around the living room.

And despite us putting up all sorts of fun sensory play stations and toys throughout the house, Zoe's favourite place to go is still the bathroom! Crazy girl! She now has the coordination to turn herself and go into the bathroom very easily and loves to just hang out in there signing "more." More what? More toilets? Who knows! You can see her signing more in this picture.

New Signs

School has been great about working on lots of new signs with Zoe. We are continuing to work on signs at home too. Zoe is working on her animals right now and names for objects in her classroom. I have been working on feeling words and Zoe is doing an amazing job communicating. Something I did not teach her but she has started doing herself is to add "mommy" or "daddy" to her feeling sign to let us know which one of us is making her angry or sad. And she will label our mood too by signing "daddy tired." She is also doing a great job of vocalizing to get our attention and then signing. We joke now because she has become so vocal that we feel like she just yells at us all day long! She is not always patient but it is so great to see how much she is able to communicate despite her being "non-verbal."

New School Schedule

Now that Zoe is in Preschool, we decided to increase her days at school to three days a week. Zoe now goes to school Monday, Thursday, and Friday. Three days in a row were too much for her, she would just be exhausted by Friday and not get much out of it. This way she has some time to rest in between but is never away from school more than two days. Zoe continues to LOVE school. This past Monday I woke Zoe up to get her ready for school. She kept repeatedly signing she was tired. The conversation went something like this:

Zoe signs: mommy

Mommy says: Yes, Zoe?

Tired

Yes, Zoe. I know you are tired but it is time to get up.

Mommy

Yes, Zoe?

Tired

Yes, Zoe. I know you are tired but it is time to get up.

Mommy......

and it repeats itself until Zoe hears Gavin in the kitchen. She then applies to daddy for help.

Daddy

Yes, Zoe. Daddy is in the kitchen.

Tired

Yes, I know you are tired.

Daddy

Yes, Zoe. Daddy is right there.

Tired

Ok Zoe, I will tell Daddy you are tired.

Daddy- Zoe wants you to know that she is tired.

Daddy says: Ok Zoe, I know you are tired but it is time to get up.

Mommy......

and on it continues until I answer with

Zoe I know you are tired but it is time to get up for school.

suddenly Zoe's hand stops in midair from signing "tired" and grasps the other hand in a "school" sign while a big smile spreads on her face.

School

Yes, Zoe you are going to school. That is why I woke you up.

School (signed while laughing and smiling)

Gee Zoe, I thought you were tired.

Shakes her head no and then signs "Zoe school"

Well I am glad that you suddenly got so much energy for school.

School

Yes, Zoe you are going to school

Zoe School

(Sigh) Yes Zoe, you are going to school

Zoe School.....

and you can imagine this continues for some time!

New Physio Schedule

At this point, we are able to back off from doing so many physio exercises and able to let Zoe run around the house and play to get her exercise. For a long time, we had to teach Zoe to put her feet on the ground. Now, she loves to walk and stand. So we are working on building her endurance and this is best done by letting her walk as much as possible. We take her over to Variety Village (a great wheelchair accessible facility with big smooth hallways and a heated pool) and just let her wander the halls. It is also great to see how many people know her. Many have commented on her not having her glasses the last few weeks. It is nice to have this sense of building a community that is getting to know Zoe. Some people I don't even know but they will say, "Hi Zoe" so I guess they know her!

Zoe also loves being in her stander and will stay there for up to an hour as long as she has something to play with. She LOVES playing in the sandbox or water table at school.

We do still have to do some arm strengthening/ compressions to get Zoe to put her hands out. She continues to put her arms down at her sides rather than use her arms to push up or brace herself when falling from a seated position. Just like with her legs, we have to program Zoe's brain to do what other kids do instinctively. We also continue to stretch her hips and hamstrings which continue to be very tight.

As always, Zoe continues to be very motivated to grow and build muscle tone. She does a great job rolling her toy back and forth to build shoulder strength, pushing buttons to build fine motor, etc. She is even building the muscle tone on her right side without us needing to prompt her to use that arm and hand. This is different than showing a preference for one hand or the other since it is a weakness in one side rather than a preference in the other. We used to have to prompt her a lot to use that right side, but she is now doing it herself. It is so nice to be at a place where therapy is becoming more play based and less funky exercises that make her scream!

New Health Routine for Genevieve

I am continuing to have some health issues this year. In 2005 I had an endometrinoma removed from my left ovary. At the time of surgery, the doctor also removed several more endometrial growths from my pelvic cavity. Since surgery, I have done well maintaining my health by eating well, getting lots of sleep, and acupuncture. As you can imagine, finding time for these things has been challenging since Zoe was born.

My doctor gave me a stern warning lately and I have missed quite a bit of work so it has been a real wake up call. My symptoms are much worse lately and interfering with my life. So I have recommitted myself to taking better care of myself, building my own muscle tone (how else am I going to be able to lift Zoe in the next few years as she gains weight?!), and getting back to acupuncture. My symptoms are such to suggest I may need more surgery but I have decided to hold off on that option for the moment. Surgery is not a cure for endometriosis and can actually cause more growths on the scar tissue left behind. Unless I am in danger (like last time- the cyst got so big that if it erupted on its own I could have lost an ovary and gotten very septic) I am opting out of surgery for now. Acupuncture has proven to be very effective in treating symptoms. I just haven't been good about going on a regular basis. I also started a hormone last April to help with pain and I am happy to report that the pain is getting much much much better. In April, the pain had gotten so bad I could not lift Zoe but would drag her from room to room on a towel (she actually enjoyed this!).

I think it is a combination of not being in chronic pain and Zoe doing so well that I am feeling much better mood wise. I feel like a new mom in some ways. There are days when I know I should sleep in (like yesterday- Gavin was home and got up with Zoe but I heard then giggling so I HAD to get up and see what they were up to) but I just want to gaze at Zoe all day long. She is so beautiful and I just love watching her eyes light up as she cruises the house and discovers something she can play with. I love hearing her "yell" at us. I even love when she is mad at me because I say it is time for bed and she signs "mommy" and "angry" with a very angry looking face so I know that she is mad at me! She has such a great sense of humour and I miss her so much during the week when I am at work that is is hard to take any time for myself to sleep on weekends.

So for now I am committed to taking better care of myself (something women in general are not encouraged to do in our society or my family). And I am really enjoying watching my beautiful and wonderful daughter play with my gorgeous and wonderful husband. They both make me feel like I am the luckiest mom/wife in the world.

After posing for the first picture on this page, Zoe giggled and signed "all done" like she was saying, "Please, please no more photos right now..."

Then she got serious- "all done" aka "look, I mean it, no more photos right now!"

The world we live in (sucks sometimes)

2009-09-17T13:47:00.005-04:00

First off, Zoe is absolutely fine. Great actually. She just started three day a week preschool which she loves and is one busy little girl. I am going down early to pick her up and bring home Brittany, one of the school's goldfish (and her tank) that they no longer have room for. Zoe loves fish and wanted to adopt her (or at least she seems excited) so welcome to the family Brittany. We are all recovering relatively quickly from the cold we all had last week and Genevieve seems to be feeling a bit better after having a rough couple of weeks (knock on wood for those last two). So all is well.

This post is a copy of a letter I sent the CBC last Thursday. The CBC is Canada's national publically funded broadcaster and the show I refer to is a satirical news program (long past it's prime). It's not really a happy letter- not really a sad letter either. More resigned, I guess, and a reflection of the world we live in, and the perception society has of those that we all know deserve far better. It contains some terms I would never even think of using- not meant to offend but to illustrate my point. Here's the letter, anyway.
----------------------------------------------------------------

Hey "This Hour has 22 minutes" people,

I am not a fan of your show, though once I was. It has probably jumped the shark tank some time ago, despite the introduction of some peppy new comedic talents. Still, you are not as terrible as "The Air Farce"; you are certainly no Rick Mercer Report, however. Sorry, but there it is. I do thank you for bringing a nice little piece of irreverence and satire to the Canadian/world scene, no matter how frequently miss your mark.

This letter is not intended as a critique of your comedy, however. Today I sat down to dine on some nice leftovers and switched on your show at 3:53 PM. As I enjoyed my re heated meatballs a segment came on- the show was a rerun and I have no idea what the segment was on or when it was from. Something about IQ scores at the CBC. Whatever. However, in the course of the 92 seconds I watched you used the term "borderline retarded" at which point I clicked away. We don't have cable, so five channels later I found myself back again to hear "it's like getting a gold medal high jump at the Special Olympics" at which point I turned off the TV, sighed (I had finished my microwaved meatballs by this point) and came through to write this letter. And here is why.

The term "borderline retarded" is, except in very specific medical senses (and even then it is insensitive and non specific) an unacceptable phrase. As are Special Olympic jokes, when the aim is to denigrate the accomplishments of somebody. People with developmental disabilities (like my daughter Zoe) have to put up with these insults, and this discrimination, and this denigration of their worth as human beings every single day. Casual references and jokes, like yours, really do stigmatize and hurt. My daughter, only two and half, does not yet feel this hurt , but I do, and her older friends with developmental or intellectual disabilities do, and my cousin who has Downs syndrome does, and thousands and thousands of other Canadians and people around the world every single day do. Imagine for a moment you are an adult with a developmental disability, and you come home from your job or your day program or whatever and you’re sitting on the couch with your mom or your roommates and you flip on "This Hour has 22 Minutes". You think, "oh good, they are funny" and then BAM! Mark is calling you and your friends retarded. And then BAM! you look up to see your Special Olympics medal you are so proud of just as Gavin is taking a big fat dump on it on national TV and calling it worthless. Nice guys. Really classy. And people laugh. And laugh. And laugh.

And you shut off the TV and then what do you think?

And by the way, have you ever seen some of those Special Olympics athletes? They can kick my ass at High Jump or Shot Put, or just about anything athletic. Yours too, I'd be willing to bet.

So will I boycott your show? No, I don't really watch it anyway. Will I organize a letter writing campaign? No, though I will encourage my friends and family who I included on this e-mail to write to say "Yo, guys. Way to go. Thanks for picking on the weakest and most discriminated against group in our society, and contributing to their continued degradation by doing it so during prime TV watching hours, and showing it continually on re-runs, so people can see it again and again and again". I am far too busy for letter writing campaigns- organizing my daughters medical appointments, looking for ways to maximize her quality of life, doing her physiotherapy, taking her and her walker and her stander and her special needs stroller everywhere, fighting discrimination and fostering inclusion so maybe, maybe one day she won't have to put up with this shit . . . you get the idea.

If there is an air of weariness to this letter, it is because I have to fight this fight, for my daughter, every single day- I hear it on the subway, on TV, at work (and I work at Sick Kids, the largest Children's hospital in the nation). And do I ever expect to see "retard" go the same way as "nigger" or "pakky" or "kike" or “faggot” as it should? (I use those terms to demonstrate that retard is a word of the same ilk- filled with denigration, judgement, prejudice, discrimination and hate) No, not really, because shows like yours use it so casually so often it becomes a part of our language, so disconnected from any meaning but still spreading hate and pain to those that, really, deserve far better. What do I expect the outcome to be from this letter? Realistically, maybe a polite letter from a junior assistant on CBC comedy staff saying "we appreciate your comments, and keep watching the CBC". What would I like? Maybe for the writers of your show and the stars to see it, and think about it, and what consequences their words had, and maybe they shouldn't have been, well, the insensitive assholes that they were.

Shame on you guys, really. Put yourself in the shoes of my daughter - well, maybe not literally her shoe's, she has tiny feet- but metaphorically. Her shoes and the shoes of the women you see at the mall or the guy on the subway or the cute Downs Syndrome kids you see in the Special Olympics poster or somebody's cousin or sister or granddaughter. And you'll realize it's not funny. It just hurts.

Thanks for your time. Zoe sends her love. No, this is a lie- she has no idea who you are. And yet you took the time to insult her? In truth the only TV show Zoe watches is "Hockey Night in Canada" and that's because sometimes Daddy watches it with her for a couple of minutes before she goes to bed. Like my mom and dad did with me. Go Leafs.

Best to you and yours

Gavin Ross
------------------------------------------------------------

It's been a week now, and so far- no response.

Abbie W. tries out Zoe's pony

2009-08-25T16:42:00.006-04:00

Hi all,

at the conference our friend Abbie (well, maybe more Abbie's mom Kim) wanted to try out Zoe's walker. So here she is, giving it her best (it was the end of a long day and it was her first time in it- you can see how much it wore her out!) Kim asked us to post the video so she could show it to her physiotherpaist with the hope of getting Abbie a similar walker- maybe next year at conference Zoe and Abbie can chase each other around!

(FYI, the song is "These Boots are made for Walking' by Nancy Sinatra :)

We're Home!

2009-08-18T09:33:00.007-04:00

We're Home!

We have a busy week with lots of appointments for Zoe, so we won't get around to posting pics and info about our trip for a few days. One of our first things we want to post is the video of Abbie in Zoe's walker so Kim can show it to her PT. We are working on it Kim and will have that up and running soon!

Until then, check out Alayna's blog for great pictures of most of the kids. Angie did a great job getting individual pictures of a lot of the kids (I have to say, that Zoe kid is a real cutie). Unfortunately, our camera was out of batteries, so we did not get very many pictures at the conference. For info about the speakers, go to Whitney's blog. Nate did an awesome job of summarizing all the speakers so the people who could not be at conference still get all the info. Thank you both for being so on top of documenting another great conference!

Zoe's Tea Party Total

Zoe raised $508 Canadian/ $459 US!!!!!!!

We were excited to raise so much so quickly. We realize we did not give people very much time this year to contribute due to dealing with Zoe's lung issues right before the trip. But thank you, thank you, thank you to those that did. And for those that didn't- don't worry there is always next year!

Zoe's Appointments

Zoe saw opthomolgy yesterday. All is the same as three months ago. Her eye dryness is not getting any worse but not getting better. So the plan is still to put in tear duct plugs in November when she is already asleep for her MRI. Her regular eye doctor is not available at that time but will have another doctor do the surgery for him. Gavin met the other doctor yesterday and said he was nice enough so we feel comfortable with this plan. This is not a complex surgery so it should go smoothly in November.

Zoe also saw her pediatrician yesterday for some ongoing issues (I am not going to go into detail until we get some test results- it is no use speculating about what could be with Zoe, we are far too busy with what actually is to focus on what ifs). Great news is that Zoe has gained a little more in height again so that means she has gained a whole inch in the last 6 months! She also gained a few ounces while we were away so she is up to 19 pounds, 3 ounces! What a fatty! Other great news is that Zoe stayed well the entire trip!!!! This made the trip so much easier and we had such a great time. We could tell her pediatrician was so happy to see Zoe well yesterday and to hear she stayed well for the past three weeks. Even more great news- Zoe's lungs sounded great and clear!

Zoe sees dentistry for the first time this morning and then has to get some blood tests and a chest xray to check on a few things that have been going on. Unfortunately, I can't be there with her since I am having some health issues of my own and had to see my own doctor this morning. All is fine with me. I just get to look forward to yet another pelvic ultrasound. Yippee!

I wish I could be there with Zoe and Gavin this morning since I know that it will be upsetting for Zoe to have her teeth looked at and cleaned. And she hates going into the plastic tube that they use to stabilize her for the chest xray. I just hope that they are able to get her blood since she continues to be a very challenging stick. We promised her we will take her swimming if she gets home in enough time before she has OT this afternoon. For now, I am supposed to be resting. So that is what I am going to do. Well that and pull out Zoe's next size in clothes. She has gone up a whole size in the last few weeks! We want to make sure she has a cute outfit to wear for her first day of "big girl" school on Thursday. Can you believe she starts Preschool on Thursday...where did my baby go?

We're Out of Here!

2009-07-29T13:10:00.002-04:00

We decided to leave this afternoon (as opposed to driving all 960km/600mi tomorrow). We hope to drive a few hours today before stopping for the night. Hopefully we won't hit too much traffic heading out of town.

We'll be sure to take lots of pictures and post when we return. Have a good couple of weeks everyone!

Zoe's Tea Party

2009-07-27T11:04:00.004-04:00

So far Zoe has raised $215 Canadian/ $198 U.S. !!!!!!!!!!

(I love that the Canadian dollar is doing so well since we are about to spend 2 1/2 weeks there- better exchange rate here we come!)

Thanks to everyone who has contributed so far!!!!!!!

If you still want to donate- don't worry, there is still plenty of time! Conference starts this Friday.

Don't have money this year? No worries- we will probably be running the fund raiser again next year.

Don't have money this year or next? Still no worries- if you are reading this blog, then you are already supporting a child with 1p36!

Mom, Don't Embarrass Me in Front of My Friends!

2009-07-23T15:24:00.001-04:00

Too Busy for Kisses!

I dropped Zoe off at daycare this morning (Zoe goes to "school" Thursdays and Fridays and absolutely LOVES it as this story will demonstrate). I put her in her walker (she has been practicing walking into the school room on her own like a big girl) and she took off into the room. I put her diapers, food, etc away. Zoe had walked over to three other kids who were looking at the fish tank. I said, "Mommy is going to work now, can I have a kiss?" The kids had started to walk to the toy shelf. Zoe shook her head "no," signed "all done" and quickly walked toward the kids. I walked after her, got down on her level and said, "Well, mommy wants a kiss. I am going to kiss you now because I am leaving for work." Zoe grunted, signed "all done" and again walked away.

Little bugger! I have to beg my own daughter for a kiss! I know all parents say they grow up so fast but seriously- what attitude!

I love it though.

I love Zoe's sense of independence she has gained with this walker.

I love her confidence that she can wave me off with an "all done" and know that I will return later where she will whine at me like "Mommmmm, you left me alllllll day!"

Maybe then I will remind her- "Hey, you were the one who was too cool to kiss me in the morning!"

Zoe is a menace- photographic proof!

2009-07-20T15:11:00.007-04:00

Hey all,

I got a picture of Zoe's most recent mess today- it's the one Genevieve described in her previous post. One bowl of yogurt- why wouldn't I want it on the floor? Good thing we have hardwood floors and not carpet! : ) Look at her eying that other bowl (egg salad) thinking "hmm, how can I reach that one?" Glad she didn't grab the blue water glass- it was full!

We are amazed (and still getting used to, obviously) just how quick (and accurate) Zoe can be. It is an amazing development, and she (and us) have worked really hard to get here. We are so proud of our little menace!

Gotta go- someone needs a nap. Oh, and so does Zoe. Love to all.

GGZ

Zoe's New Skill!!!!!

2009-07-20T12:25:00.005-04:00

Zoe Sucking Her Fingers

After two and a half years of attempting to teach Zoe how to suck, Zoe suddenly started sucking her fingers last week! This is a very exciting milestone for 1P36 kids. First, it shows that her mouth muscles are getting stronger. And second, it means that she will start sucking her fingers instead of biting them. Zoe has been pretty good about the biting but does occasionally bite so hard that her fingers bleed and she has a sore. She does seem to be aware of how hard she can bite before hurting herself. She was very happy to discover this new sucking skill- she gave her finger a few big sucks and then smiled and signed, "More, mommy." I kept laughing and saying, "You are doing that, not mommy!" Funny enough, she seems to prefer sucking the same finger I used to suck as a kid.

Other New Skills

Zoe continues to amaze us with her development. She is now able to better control where she is going in her walker. She can aim through doorways and 90% of the time is dead on. If she hits a wall, she is now able to get herself unstuck. Zoe can also move herself on thin carpets. She surprised us by taking off in our room this past weekend.

Gavin just called me at work to report that while he was setting up lunch, Zoe thought it was a good idea to zoom over to the table and pull the bowl of yogurt down onto herself, her walker, and the floor. Apparently she thought this was hilarious! I can't believe Gavin didn't take pictures- we are so proud of the messes she can make now. It seems like not too long ago when Zoe couldn't even bat at things with her hands. Now she is such a menace and gets into everything!

Zoe also began splashing in the bath in the last few weeks. She purposely splashes with her hands and kicks her feet to "swim." She loves floating in the life vest we bought for her. We even let her take it in the bath so she can get used to it.

Upper GI Results

We did not get the formal results of Zoe's upper GI yet, but the doctor who did the test mentioned that Zoe definitely has reflux (no surprise to us), but the test did not show any aspiration. We were very glad to hear this news. It still does not give us an answer as to why she gets these lung infections and why she is still running a fever (I think we are on week six now). But we recognize that there are not always answers. Zoe's pediatrician is going to see how severe the reflux is and then decide if she will start on a medication. The reflux does not seem to bother Zoe, but I guess we have to be sure it is not damaging her esophagus or lungs.

Only Ten More Days Until Our Big Trip!

We are busy packing and getting the house ready for our big trip. I added up how many miles/km we will be driving total and it looks like we will travel at least 2000mi/3200km.

Our itinerary: We head to Indianapolis next Thursday. Then to St Louis to visit family the following Monday. We will be there for a week before heading to Kentucky to explore Mammoth Caves National Park. Then to Pittsburgh for a work conference where I am presenting. In all, we will be gone 18 days. We really look forward to the time we get to spend together as a family. It will be busy but as long as Zoe stays healthy, I think it will be a really fun trip.

Zoe's Tea- PayPal access

2009-07-17T15:01:00.005-04:00

Thanks to our friends with the 1p36 Deletion Support and Awarenss group (in the process of being established) people who would like to donate to Zoe's Phantom Tea Party can do so using PayPal. Here are the steps

1) go to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=6114971

2) fill out the donation amount, billing info (credit card or Pay Pal account) etc. Apparently there should be a box somewhere that allows for comments, in which you can type in "Zoe's Phantom Tea Party".

3) Send us an e-mail with your address (and, if you don't mind, the donation amount so we can keep track) so we will know where to send your tea for you to enjoy and something special from Zoe.

4) sit back and wait for the tea to arrive. When it does, add hot water, add your favorite tea additive like honey or lemon or milk or sugar or Scotch or whatever, relax and enjoy!

Thanks to all who have participated so far. You are all our favorite people, and thank you for supporting something so important to us.

Love, GGZ

Zoe's Fundraising Tea

2009-07-14T10:17:00.012-04:00

In order to raise funds for the 1P36 Conference this year, we have decided to hold a "Phantom Tea." How it works is you donate any amount of money, we send you a tea bag and Thank You card from Zoe, and you drink the tea on the designated day. We decided to make August 1st the designated day since that is one of the conference days. That way you can feel connected to Zoe who will be playing with her 1P36 friends while you enjoy your yummy tea. The money will be used to pay for the speakers, room fees, etc at conference so the amount that the families have to pay will be less. This will be our third conference and so far we have found going to conference to be such a valuable experience. We get so much out of being around other people who know exactly what it is like to raise a child like Zoe.

Zoe is happy to recieve donations via our address. We are also working on a Paypal possibility, so we will let you know if that works out. At this point in time our groups paperwork for charitable organization status is still pending, so we don't think we are able to give tax receits yet (though we might be able to by years end, so we will try to do so by then if we can) Should you wish to donate to her tea please contact Zoe's mom or dad via our e-mail at rossgf2@yahoo.ca.

Thank you for any amount you are able to donate. No amount is ever too small. So here goes the cheesy poems meant to bring tears to the eyes and make you open your wallets :)

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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And if that didn't get you- here is another one:

What does it mean to be the parent of a child with a heart defect?By Anna Marie Jaworski (1996)

It means going into your baby's room a dozen times a night just to check and see if he is breathing. It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe. It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet?It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating. It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he wont be warm enough. It means worrying that even a sniffle could cause an infection that would harm the heart. It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.

I means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason. It means praying for a miracle to save your baby's life.It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief. It means your own heart knows a pain no parent should know. It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands,

It means feeling strong and determined and brave because you know you have to be. It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined. It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life. It means that even though we are strangers … we are more to each other than friends could ever be

Zoe's New Haircut

2009-07-01T11:45:00.008-04:00

New Haircut
When I was pregnant with Zoe, I had no idea I would gain so many titles with her birth. I have come to be known as Zoe's: Occupational Therapist, Physical Therapist, Speech Therapist, Respiratory Therapist, Doctor, Nurse, Equipment Specialist, Advocate, Personal Secretary, and of course- mom. Now I can add Hairdresser Extraordinaire to the list!

For some reason Zoe refused to look forward for the pictures. I guess she was too busy playing with her toy. I don't think I would have done such a good job (and her hair would not be as even) without my lovely hairdressing assistant- Gavin :)

Still Sick but Going Camping

Zoe continues to run a low grade fever and sleeps a little more than usual but other than that is doing great. So we have decided to go ahead with our planned camping trip this week. We leave tomorrow after daycare and will return on Sunday. We all look forward to getting a little rest and relaxation.

Happy Canada Day!!!!!

This is our first Canada Day in four years that we will not spend with our American friend Amanda, which makes us a bit sad. But we still plan to take it easy today. We have to pack and do laundry (not very exciting) but plan to fit a wagon ride around the block in there somewhere. Pretty exciting, huh?

Opps, I should say "Pretty exciting, eh?" (For those Americans reading this- "eh" is pronounced "aye" and Canadians say it after every sentence they speak). What's that aboot, eh?

More Blah-ness.....

2009-06-25T20:17:00.004-04:00

Zoe Still Sick

Zoe is still not quite herself. She continues to run a low-grade fever and sleeps a lot. Her eyes have a hollow-ness to them that I couldn't really describe to the doctor. It's just a look she gets when she is sick. We took her to the doctor on Tuesday because we thought maybe she had a urinary tract infection. But her urine was fine. Which is great. But we still don't have an answer as to what is wrong. The doctor said her lungs sound good- so that was great news. So we are going to give her another couple of weeks and if she is still having fevers, we will take some blood cultures and do a chest x-ray.

For now, we just wait.

And wait.

And watch every little sign that something isn't quite right.

And worry.

We are not the type to worry. But when our gut tells us something is wrong and we aren't sure what, it worries me. This is not typical for Zoe. Typically it is very obvious that she either has a GI bug or a lung infection.

Zoe's Feeding Study

Good news on the feeding study though (and here I try to focus on the positive because I know how lucky we are that Zoe is doing as well as she is). Zoe did not aspirate on any of the food or liquid during the test. They did mention that she "double swallows" liquids and liquidity food. This means she brings the food under her epiglottis before pushing it forward and swallowing it correctly the second time. She also tends to store food in her mouth when she eats (this we already knew since she will sign "more" even when her cheeks are bulging with food!) Neither of these findings is concerning since it is not causing her to choke or aspirate on her food. We were very glad to hear this. Actually "very glad" does not really capture our relief. We were pretty sure she was not aspirating on feeds but worried what it would mean if she was. And so we are pretty freaking thrilled that we don't have to deal with that right now.

The Next Step

So the next step will be an upper GI test where Zoe will have to drink barium while they take xrays to tract where the liquid goes as she swallows and digests it. This may or may not show us the reflux she is having. Sometimes she refluxes well after a meal, not always during or right after. So it may not show up. We have made the decision to hold off on starting reflux meds since her lungs sound good right now. If she continues to get lung infections, we will again consider putting her on meds if we think she is aspirating on her reflux.

Thanks for the Support

Anyway, thanks to all of those who read this blog and keep us in your thoughts. I appreciate that I may type things that not all people want to read at times. But it is important for me to have somewhere where I can express what I am feeling. Gavin and I don't have many friends and our families live far away. And I have a feeling my colleagues want to scream sometimes when I am talking about Zoe, yet again. And so it is nice to be able to type whatever I want and people can read it or leave it as they want.

For now, I am going to pour myself a bowel of cereal (my comfort food). Gavin is working tonight. Zoe was so exhausted from her day at school that she fell asleep at 5:30 without eating any dinner.

Only she knows what her body needs.

And so I will creep into her room and watch her sleep.

Count her breaths.

And try not to focus on the blue hollows circling her beautiful eyes.

Bit of a Blah Day...

2009-06-15T20:23:00.003-04:00

Zoe has been running a fever again since Saturday. Just a low grade one. So we are just waiting to see how she does. She did great eating and drinking Saturday but not so great the last two days. And so we are waiting to see how that goes too.

The feeding study is tomorrow and we are feeling a bit anxious about it. Since birth we have gotten pressured to put Zoe on a permanent feeding tube (G-tube). Some of the kids need this. But we have never felt that Zoe did/does. So it feels like this constant argument. We have agreed to the feeding study since she has had so many lung issues and we need to be sure she is not aspirating on her feeds. If anything, we think she is aspirating on reflux and this test won't tell us that anyway. And a g-tube won't stop her from aspirating on reflux. We know at least two 1P36 kids who have g-tubes and still have major lung issues.

Zoe is currently laughing like a maniac (she is supposed to be sleeping). So I am going to go eat my dessert and listen to my daughter laugh. She was determined to tell me something during dinner and it took us 15 minutes to figure out the exciting news was "Grandad gave me some milk today." She also wanted to swing on the swing outside after dinner with grandad. How could we say no when it took us so long to figure out her request? And so she got her swing in before bed.

Bragging About My Brilliant Daughter

2009-06-13T09:52:00.004-04:00

Ready for Preschool

We have not had the official meeting at Zoe's daycare yet to decide if she will move up to the preschool class with her peers but from the conversations I have had with her teachers, I get the impression they think she is ready. They have mentioned that although Zoe is still at a 3-6 month level physically, they have seen such huge gains in her cognitive and social skills since she has started using the walker and stander. This does not surprise me. Initially we thought perhaps preschool in the fall was too ambitious. But since then we have been conducting our own little "tests" to figure out how much really is going on in that head of hers.

Whose Shoes?

Every time we pick up two pair of shoes (one of Zoe's and one of mommy's) we will ask Zoe, "Where is Zoe's shoes?" Zoe will always pick the right pair. So this morning I tried, "Where is mommy's shoes?" And Zoe correctly identified mommy's shoes. I thought perhaps she was just picking which shoes she wanted to wear since we often hold two choices in front of her to pick but it is now obvious that she understands the question and knows the answer.

Body Parts

We tried asking Zoe about different body parts this morning so she could point them out on her doll. Zoe immediately pointed to baby's eye, nose, ear, head, mouth. When I asked about baby's hand, Zoe looked at her hand but did not point at it. A minute later, she did point at the hand. So I think that one question took her a minute to process. Even though she knew the answer and showed it by looking right away, it took her a minute to point.

Pointing Out Pictures in a Book

For a few weeks now we have noticed Zoe will point to pictures in the book that are typically funny (like Yertle the Turtle with mud on his head and don't get her started on how funny the picture of the little boy crying is!) and laugh. It is like she is showing us, "Hey look mom and dad, isn't that hilarious?"

In short- Zoe as always has amazed us even beyond what we would hope for!

On again, Off again...

2009-06-12T21:31:00.006-04:00

Zoe in a great mood despite the tube.

Zoe back on tube feedings

It's been a busy week here. After three wonderful weeks of Zoe being well, she came down with another chest infection. She was choking a lot on her mucus and had a fever for six days straight. So after having to do the first step of CPR on her several times in one night, we decided it was time to take her back to the doctor's. The pediatrician prescribed an antibiotic to dry up the mucus. It began working right away but unfortunately zapped Zoe's appetite (which has happened before). We now have an emergency protocol to insert the NG tube at home after 12 hours of Zoe not peeing. And so, Sunday morning, while Gavin was in the middle of his third 12 hour shift in three days at the emergency room, I inserted an NG tube.

Zoe did great with the tube insertion. We have come up with a way of bundling her body and Riann (the respite worker) held her head. It was a rough week with Gavin working lots of hours (we are grateful for the hours/money but this week has been hard since it has been 18 days since the two of us has had a day off at the same time).

Thankfully, Gavin's dad Alan is here right now to help out. Zoe, as always has done amazing and maintained a great energy level throughout this latest illness. She even went to daycare for half of Thursday and all day today. In the past, we kept her out of school when she was on tube feedings. But given how great she was feeling, we didn't think it was fair to keep her home. Tonight we let Zoe take the tube out and hopefully she will eat and drink well this weekend.

Feeding Study Scheduled Tuesday

Zoe has a feeding study scheduled for this Tuesday. Due to her multiple lung infections and extra mucus in her lungs, the doctors want to make sure she is not aspirating on her food.

Zoe helping her grandad pull weeds outside.

Cousins 2009

2009-05-30T13:53:00.009-04:00

Edmonton, April 2009

Gavin's brother Colin's family and his cousins Katie and Fiona's families.

Katie was determined to fix Zoe's pigtails. She didn't realize how wiggly and unhelpful Zoe is until she already started.

Zoe is 26 months old.

Sarah Jane did such a nice job of supporting Zoe while she played.

Luke also did a great job supporting Zoe. It is amazing how quickly kids pick up on what Zoe needs in order to play with them.

Zoe still loves strings. Just look at that beautiful job Katie did with the pigtails!

Charlie is in the background.

Fiona and ? cousin (Fiona is pregnant).

Lucy shows Zoe how to use her turtle.

Zoe and Charlie in the wagon. It was very sunny that day.

Missing from the photos: Robert, John and Calvin.

Holyoke, MA May 2009

Clover and Zoe checking each other out. Zoe loved playing with Clover's hair. And her dogs.

Cousins 2008

2009-05-30T13:23:00.011-04:00

Philadelphia, PA July 2008

Genevieve's brother Tom's family at Uncle Joe's wedding.

Kate and Ellen- I love how much Zoe's colouring matches theirs.

Zoe is 17 months old.

Missing from the photo- over 50 cousins from Genevieve's side. Genevieve was in the bridal party and Gavin was too busy taking care of Zoe to take pictures.

Toronto, July 2008

Genevieve's brother Tom's family comes for a visit.

Henry, Gavin, Kate, Grandma Sheena, and Ellen.

A day at the beach in Toronto.
Genevieve, Ellen, and Grandma Sheena.
Ellen was so helpful with her cousin Zoe. At this time, Zoe was unable to get the sand to her mouth but she kept trying to eat it. So Ellen was nice enough to grab Zoe's hand (full of sand)and shove it into her mouth for her!

Tom's family getting ready for their long drive home to Oregon.
From the top- George, Ellen, and Kate.

Cousins 2007

2009-05-30T12:34:00.017-04:00

The Cousin Project

I was going to post some cute pictures of Zoe playing with her cousin Clover from our recent trip to Boston but then I had an idea. Why not posts pictures of the various cousins Zoe has met so far? There are many cousins on Genevieve's side and a few on Gavin's. We don't have pictures of all of them. But I will try to post what I can. My plan is to post years 2007, 2008, and 2009 today but I will see how long Zoe naps for. As always, she determines what I get to do with my day!

For simplicity sake, I am just going to say everyone in the photos is a cousin. Some people are first cousins, some seconds, others once removed, etc but it gets too confusing. Also, I will always list people from left to right. So here is Zoe with some of her cousins:

New Mexico, July 2007

Genevieve's brother Paul's family

Brian, Rachel, Tara, Jessica, and Sarah

Zoe is 5 months old.

Zoe and Tara

Zoe and Rachel. As many of you know, Zoe is a very wiggly child. Rachel had such a calming presence that Zoe often fell asleep in her lap.

Zoe and Brian. They kind of have the same expression in this picture.

Colorado, August 2007
Genevieve's brother Andy's family
Zoe and Jocelyn

Maggie, Aunt Sheri, and Andrew.
Missing from the photo: Faith.

Genevieve's brother Mike's family.
Aunt Bonnie, Francis, and Connie.
Missing from the photo: Michael, John, Sam, and Alex.

England, August 2007
Zoe is 6 months old.
These are Gavin's cousins from his dad's side.
Elaine and wee Zoe.

Zoe and wee Zoe.

Edmonton, Alberta, December 2007

Gavin's cousins Fiona and Katie's families

Zoe is 10 months old.

Lucy and Calvin.

Missing from the photo: Katie, John, Fiona, Luke and Charlie.