Yikes- we got a preteen!!!!

Dealing with Boys Already???

We finally got all the paperwork completed and funding in place for Zoe's new (and ridiculously expensive) walker.  All we needed was for Zoe to pick the colour.  Zoe went back and forth and would not commit to any one colour.  We thought, this is odd- Zoe usually knows exactly what she wants and says so right away.  Zoe rarely changes her mind once she has picked something.  So after many conversations it finally came out that Zoe seems to have a bit of a crush on a boy at school who has the same type of walker she is getting.  And she was thinking about getting the same colour as him instead of the colour she wanted.  I teasingly said, "What is he your boyfriend or something and you have to do everything the same" which Zoe quickly hit "Yes" on her talk program and was giggling and giggling.  What?????  I was just kidding.  My daughter is way too young to pick things based on what a boy might think!!!!

After all the giggles and blushes, we were able to talk to Zoe seriously about picking what she wants because if this boy likes her too, it is probably because she is herself.  So he would want her to pick what colour she wanted, not a colour just to make him happy.  OK, I don't know if this is true but if this boy stops liking Zoe because she picked a different colour than his walker, well then he is not worth her time!  And another thing- he is younger than Zoe!  She is looking a younger men already.  Man- we are so not ready for the teen years!

Communicating with a Non-verbal Person

I heard a story on the radio this morning about a young man (Hector) with autism in Texas.  To summarize- Hector loved going to his local blockbuster since a young age.  Employees at the store knew him well.  When the store got notice it was closing, an employee gave Hector's mom notice because they recognized what an impact this would have on Hector.  Employees and Hector's family worked together to create a mini-blockbuster in Hector's home to help him cope with the store closing.  What I find so touching about this story is that the employees recognized what this meant to Hector.  Hector is non-verbal and yet, he was able to clearly communicate with these employees for years.  They understood the significance this store had for Hector.  I love stories about non-verbal people who still reach out and touch other people in a different way.  If you want to read the full story, here is a link:

http://www.huffingtonpost.com/entry/blockbuster-home-son-autism_us_58ff9cf0e4b0073d3e79fb23

You will have to copy and paste since the blog does not want to make it a direct link.

Zoe, although non-verbal, communicates so much.  We are always grateful for the people who take that extra time to talk to Zoe.  Or even people who just see her big smile and smile back.  You don't need to speak sign language, or know how to use her talk program in order to communicate with Zoe.  Sometimes people get it and it makes Zoe so excited when someone talks to her rather than just around her.  Zoe is a very social person.  Sometimes people don't quite get it or question why we are advocating for certain things.  Zoe had surgery to replace the PORT in her chest (more on this in a moment).  We asked that Gavin be able to go in with Zoe until she fell asleep.  The doctor didn't really understand we were advocating for Zoe's sake, not our own.  He said things like, "Well it will be so quick and she seems pretty happy."  Yes, this may be true.  But despite her new maturity in picking out boyfriends for herself, Zoe is also just a kid.  A little girl who is scared to have surgery and wants her mom or dad there to help her relax as she falls asleep.  Although the doctor did not quite get it, he did allow Gavin to go in with Zoe.  So we were grateful.  Even though he did not seem to understand Zoe, he was still able to respect her wishes as told to him by us, her parents.

Zoe's PORT Surgery

Five years ago Zoe had a PORT inserted in to her chest.  The PORT is a device implanted just under the skin.  It is attached to a venous catheter which is a tube that goes into a vein in your chest and ends at your heart.  Zoe has very small veins and getting an IV in to her arms, hands, legs etc is extremely difficult.  The PORT has literally saved Zoe's life at times.  Usually PORTs only last a few years.  We have been very lucky with Zoe and hers lasted much longer.  We learned how to flush the PORT monthly with heparin at home so that Zoe does not need to get this done in the hospital.  This means she does not need to miss a day of school every month and also exposes her to less germs.  So perhaps this has also helped keep her PORT healthy.

Zoe was worried about the procedure.  She was nervous and said she felt scared.  We told her everything that would happen and made sure she understood what was going on.  Having Gavin go in with her when she fell asleep helped Zoe feel better.  Unfortunately, Zoe did have some complications which made her immediate recovery scary and uncomfortable for Zoe.  But as always, we stayed by Zoe's side and explained to her what was happening.

Zoe never had a problem getting anaesthesia before- she sedated well and woke up quickly.  This time, however, Zoe woke up choking and coughing up/vomiting bloody mucus.  She required a lot of oxygen and suctioning.  They were not sure at first why Zoe was having such a hard time.  Her recovery was complicated later by Zoe having a serious rash.  The rash started on her chest and quickly spread to her whole body.  The rash also caused facial swelling and so they were not sure if the trouble Zoe had breathing was due to an allergic reaction that was swelling her airway or from the anaesthesia issues.  It was very stressful because it took a while to figure out.  In the end, they determined that the airway issue was separate from the rash.  Zoe had a harder time with anaesthesia due to it being a long procedure (took 3 hrs) and her lungs which are worse now then the last time she got anaesthesia.  As for the rash- they are not sure what caused it.  They think Zoe's reaction was more of an immune system reaction then an allergic reaction.  She had been given so many medications during the procedure and then afterwards to help with her airway issue.  So they think Zoe's system just had enough and freaked out a little.

So what does this all mean?  Well, Zoe has an MRI next Friday so if this happens again, we need to do some serious investigating.  But if Zoe does fine, wakes up easily and has no rash, then we know the immune system response was responsible.  They are going to use a different contrast in case that irritated Zoe's system, the procedure will be much shorter, and Zoe has an overnight bed booked, just in case.

Getting Ready for Baby

Both girls are very excited about the baby coming soon- I am due in five weeks but who knows when this little one will decide to pop out.  Zoe loves lying against my stomach and feeling the baby kick her stomach.  She laughs and laughs.  Ailsa loves running up to me and slamming in to my belly to say hello to baby- little less comfortable than Zoe's snuggles but Ailsa always has been more firm in her affections.

 Selfies are always hilarious!

Ailsa set up a complicated game with many parts which primarily involved Zoe shoving Ailsa's doll down the slide for Ailsa to catch.  Zoe thought it was especially hilarious when the doll fell off the slide!  I love these games that Ailsa comes up with to play with Zoe.  Zoe is always a willing participant and just laughs even when it does not seem to make a lot of sense to the rest of us!

Happy New Year!

First some cute pictures...

 We went to the Science Centre on December 31st to celebrate the New Year.  Both girls love the water table.

I love the water flying around in this picture.  For some reason, both my children (and Gavin's legs- he is holding Zoe in the upsee) got totally soaked!

... and then an update.

Zoe's Discharge, IV antibiotics and Port Problems

Turned out Zoe had RSV (a respiratory virus) as well as a bladder infection.  And of course, the bladder infection was a funky bacteria that is not as common in urine.  AND Zoe is allergic to the only oral antibiotic that could treat it.  Despite past reactions to this medication, we went ahead with pre-medicating Zoe with anti-histamines and tried a dose of the medication in hospital.  Zoe had a reaction- very itchy, irritable and her chest sounded tighter to the doctor.  Now we know she is definitely allergic to that one.  Which knocks out another class of antibiotics and makes Zoe all the more tricky to treat.  In regards to this bladder infection, it means it had to be treated with IV medication.

We went home on Wednesday with plans to continue the IV medication at home through Zoe's port.  All went well on Thursday and Friday.  On Saturday, the nurse was not able to get blood out of the port which meant she could not run the antibiotic.  We tried moving the needle a bit and I even reinserted a brand new needle.  None of these usual tricks worked so we packed Zoe up to head to the hospital.  Besides needing her antibiotic, having an issue like this with the port meant Zoe needed to be seen.

7 1/2 hours later, we finally left the emergency room.  We still could not get the port to work and an X-ray shows that the port might actually be broken or out of place.  They were able to get an IV in Zoe's hand so we were able to get her medication in to her.  We were given the option of waiting around in hospital until the specialist can do something about the port which probably would not be until Monday at the earliest or going home.  We opted to go home.

So What Does It Mean?

The problem with the port not working means one of two things is going on:

1- the port is truly broken and needs to be replaced.  This means Zoe would have to have surgery to remove the old port and insert a new port.  It also means that in the mean time, we do not have good access for Zoe if she gets sick.  Which means we would not be able to give her the drugs that she would need in order to stay alive.  So obviously, getting the port working is a priority.

2- there is a blood clot (or clots) either in the port or in the line somewhere.  This is not a good thing. The blood clot could break off at any time and go to her heart, brain or lungs.  None of that is good.  Last time we had issues with the port, they gave Zoe a clot busting medication and that worked.  So we would have to return to the hospital for this medication.  The medication has some possible side effects (some of them serious) but the risk of the medication would be less than the risk of a blood clot travelling around Zoe's blood stream.

We will hear from the team (hopefully Monday) about what they think is happening and the plan.

We Are All Tired, Tired, Tired

Several people in the emergency room asked us how we are doing.  They have seen us a lot lately and are always very supportive.  Gavin worked in the emergency room before he got the second meningitis.  So he knows a lot of people there.  Some of these people have been there to literally save our daughter's life.  So they have a glimmer of knowing what we go through.

Our response is "We are tired."

We are tired of being in hospital.
We are tired of seeing our child go through this.
We are tired of seeing our child in pain.
We are tired of making decisions.
We are tired of not sleeping.
We are tired of all of this.

But other than that, we are good.

We are good because:

Zoe is doing ok.
Zoe is safe.
Zoe is home.

For the moment.

Genevieve's Health

I have been struggling with my own health issues.  I have been taking hormones to treat my endometriosis and despite doing everything I can (I have been dieting and exercising for the last eight months. I lost 29 pounds, 29 inches- oestrogen is stored in fat cells so this should help lower my hormone levels) I was bleeding again this month (sorry, brothers- not what you want to hear about).

I used to treat my disease naturally- with exercise, good diet, acupuncture and rest.

4 years ago that all changed.

4 years ago Zoe almost died for the first time.

4 years ago we realised what the team had been saying all along about Zoe's medical fragility just might be true.

3 years ago life turned upside down and then upside down again-

Gavin had his reoccurring tumour in his spinal cord followed by two bouts of bacterial meningitis.

2 years ago I realised i could not do all of this and keep going.

And so, I started on medications to treat my endometriosis and to help bolster my mood and improve my sleep.

Because living like this makes it nearly impossible to take care of myself and do what I need to do in order to get better.

I started back at work.  Lasted two months.  Then Zoe got sick and almost died...again.

And so, here I am again in middle of a hormonal, physical, emotional crisis.

Just making it through the day.

One day at a time.

What Ever Happened to Sleeping In???

Ok, all parents face this- children who wake up way too early.  We were spoiled for a while.  We were "lucky" that Zoe was a "cardiac" baby.  I will be the first to admit that there are some advantages to a child who spends all their energy on keeping their body going and therefore needs extra sleep.  Zoe slept a lot as a baby.  She couldn't even cry very much- would let out a squawk and then pass out from the effort.  By the time Zoe was 8 months she could cry for 7 minutes before passing out.  Yup, I am serious, just seven minutes.  I know because we timed it so we could discuss it with her cardiac team. The longer she could cry, the more excited they would get.

Fast forward to 7 years later.  Sometimes Zoe would still sleep in in the morning- get up at 9 or even 10!!!  She outgrew naps a year ago but we still implement quiet time in the afternoons where Zoe and  Ailsa pretty much play in their beds for 30 mins and mom and dad get a mental break.  If Zoe is sick, she will sleep during this time but thankfully that has not been happening as much lately.

In April of this year Gavin and I made a difficult decision to get a g-tube for Zoe.  What made us take this step even though Zoe continued to eat well was the signs of starvation we began to see in our child.  Zoe was having headaches, low blood sugar problems, she was very cranky and inconsolable at times.  On top of that, we had noticed a decline in Zoe's energy levels.  For those of you that know Zoe, she is a constant ball of motion.  So to see a slow down meant something was wrong.  We (and the doctors) worried it might be a decrease in cardiac function or even a slowing down of her body's metabolic system).  We are happy to say that since Zoe got her g-tube in August she has been a fireball of energy again!  Which means, no more sleeping in!  Not that her sleeping in let us sleep in very much since Ailsa gets up bright and early but I do miss those morning moments with just Ailsa and I.  Being the amazing wife that I am, I would let Gavin sleep while Zoe slept and Ailsa and I would have some special alone time.  Being the amazing husband that Gavin is, he would sometimes return the favour.  So now we have two energetic children early in the morning and two very tired parents!

For the Record

Ok, for the record when I mentioned an advantage to having a child with major cardiac issues, that is probably the only advantage.  The rest of it- the chance of sudden cardiac death, risk of blood clots and pulmonary embolisms, the fact that your child uses so many calories just to make her heart pump and seeing your child routinely turn blue probably outweighs any advantage gained.  So while I can joke about enjoying our sleepy baby, I would give anything to fix Zoe's heart.  Because Zoe would still be Zoe without her cardiac issues.  I wouldn't fix her chromosomes but I would not hesitate to take away her heart and lung problems.

Zoe's New Chair

We are so excited to finally get Zoe a proper wheelchair!!!  The wheelchair stroller that was passed on to us from another family has worked well until recently.  Since the wheelchair can not fold, we had to wait to get a van before getting the chair.  Because we have such amazing people in our lives, we were able to raise enough money to make the van a reality at the end of August.  I have to say, now that we have the van I have no idea how we did without it for so long!

So now Zoe has her new chair that looks awesome- she sits up so big and tall like the big girl she is.  The chair gives her the support she needs to stay sitting on her bum instead of slumping down.  The chair also works great at school- allowing Zoe to get closer to the tables.  Our awesome vender whom we have worked with since Zoe started with equipment at the age of 2 even threw in an extra backpack that fits the chair perfectly and a sun shade which is a must for Zoe.  The government does not cover these items and anything made for special needs is ridiculously expensive so we appreciate this gift.

To Blog or Not to Blog

We have noticed a decline in people writing on and reading blogs.  The world seems to have gone the way of face booking, tweeting, instant messaging, etc.  So why bother with a blog?  I myself like reading blogs, things appear in order, you can scroll down and look at old posts without face book jumping around and rearranging past messages randomly.  The blog also serves as a time reminder for me- I can scroll through and look at the past years and see just how far we have come.  Admittedly, the blog takes more energy to maintain, more time to post on.  But I kind of like this rather than posting every random thought that passes through my brain.  So for all of you out there, if you do follow this blog- have no worries.  We Will Blog On!  And for those of you who have blogs that we follow- we will keep reading.  And for those of you on Facebook who keep telling me I need to get an account- I am sorry but I am just not ready for that commitment.  I enjoy my life of less technology.  Who knows, perhaps someday...just not today.

Zoe is Home- She is Doing Great!

Zoe came home on Tuesday.  She ended up staying a few extra days because she had a fever and they wanted to make sure it was not an infection from the g-tube.  The day after Zoe came home she was ready to go!  This is us walking at the park.  This park has a great fountain Zoe loves but we made her just touch the water with her hands, not get soaked under it like she loves.  We didn't think getting the bandages soaked in a public fountain would be the best thing for a new surgical site!  Zoe has been doing great- she is tolerating all the tube feedings and still eating lots of food with her mouth.  The tube feedings do not seem to curb her appetite at all which is great- that is what we hoped for.  Zoe will still eat as much as she always has (which is quite a lot for a child her size!) and the tube feedings will just be extra calories to boost her growth.  When Zoe is sick, we can use the g-tube for hydration the same way we used the nasal feeding tube in the past.  And if Zoe is really sick and does not have the strength to eat, we will have the tube ready to go and she does not have to go through the  procedure of us shoving a tube down her nose.

Sister Bonding

As always, Ailsa has done amazing with all these changes going on.  She visited Zoe in hospital and they loved playing together.  The picture below is from the rooftop patio at the hospital.  Zoe loved sitting outside in the shade.  The fresh air was great for her lungs which became a bit junky after the anaesthesia and laying around in bed.  Normally we would give Zoe chest physio which involves hitting her back firmly.  We did not want to do this and cause Zoe pain at the incision site so her sitting up and getting fresh air was very important to clear her lungs.  At first, sitting up was painful for Zoe but luckily she had a little sister to help distract her!

I Want to Be Zoe!

Ailsa always says, "I don't want to be like Zoe, I want to BE Zoe!"  Here is a picture of the girls both playing in walkers.  Zoe is in her new walker and Ailsa is in Zoe's old walker.  As you can see, the new walker is quite a bit bigger than the old one which is why the new one does not fit in our car if we are carrying anything else.  We love how fast Zoe can go in the new walker.  It also supports her in a more upright position which is great for her spinal development.  Ailsa often says, "Zoe's new walker is too fast."  It is not often you hear that complaint about disability equipment!

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.

Zoe in the News

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

Halloween fun

Happy Halloween everyone!

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

September

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!

The Backpack

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 :)

Happy Father's Day!

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!

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.

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

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.

Hearing Aids

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.

A Night Away and Lots of Equipment in the Works

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.

Equipment

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.

What's New?

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!"