Monday, November 28, 2011

New Skills and Silliness

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.

Tuesday, November 15, 2011

An Awesome Day

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...

Tuesday, November 1, 2011

Happy Halloween!

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!


Sunday, October 30, 2011

Early Morning Hospital Thoughts

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.

Monday, September 19, 2011

Last Days of Summer and School!!!!

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!"

Sunday, August 14, 2011

Small Victories

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.

Monday, August 1, 2011

Last Day of Preschool

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.

Thursday, July 28, 2011

Readjusting and Moving Forward

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.

Tuesday, July 12, 2011

Zoe is Home

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...

Sunday, July 3, 2011

Zoe doing better

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 : )

Saturday, July 2, 2011

Zoe in ICU

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.

Sunday, June 26, 2011

That was Then, This is Now

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.

Wednesday, June 22, 2011

Helpful Big Sister


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?

Saturday, May 21, 2011

Ailsa Rebecca

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.

Friday, May 13, 2011

School News

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!

Thursday, May 5, 2011

The Zoe Hotel Part Two

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.

Monday, May 2, 2011

Seizures in the Night

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.

Sunday, April 24, 2011

What's New?

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!

Saturday, April 16, 2011

The Zoe Hotel

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.

Sunday, April 10, 2011

A couple of Zoe recommended charities

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 : )

Tuesday, April 5, 2011

We Regret to Inform You...

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!"

Monday, March 28, 2011

Music and Baby

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.