Lung and Sleep Update

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

Lung Update:

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

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

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

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

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

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

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

Sleep Issues:

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

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

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

Happy Father's Day Part Two :)

Zoe Scouted for Swimming

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

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

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

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

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

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

Happy Father's Day!

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.

Ahhhhh Summer Time

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

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

Morning Commute/Conversations with My Zoe

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

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

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

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

"Mommy" "All Done"

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

"Mommy" "Zoe wants" "All Done"

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

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

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

"Mommy" "All Done"

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

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

"Mommy" "Boy" "Sleeping"

Yes Zoe, that boy is sleeping.

"Boy" "Kiss"

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

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

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

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

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

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

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

"Mommy" "All done"

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

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

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

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.