Thursday, December 16, 2010

Zoe's great grandfather

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

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

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

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


He will be missed.


video

Sunday, December 5, 2010

Little Walk-aholic

Walk, Walk, Walk

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

Little Negotiator

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

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

Friday, December 3, 2010

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

Saturday, November 27, 2010

Tough Couple of Weeks

It's been a rough couple of weeks but Zoe is starting to feel much better now. She had some ongoing diarrhea issues and then either got hit with a second wave of the same bug or a new bug and ended up with high fevers, vomiting, and lots more diarrhea. Which made it very hard to keep Zoe hydrated enough. By last Saturday, Zoe was starting to get pretty dry and we were worried because she had crying/screaming and signing that her lower stomach area hurt. We were worried it was more than a stomach bug so we took her to see the doctor just to be sure. Thankfully, it was just a stomach bug and after five days of rehydrating with NG feeds, Zoe was feeling much better (as you can see in the picture below). We are still feeling exhausted from days without sleep but Zoe seems to be fully recovered today. She even made it to school for Thursday and Friday this week, which of course made her very happy. She is napping longer than usual today (which is why I finally have time to update her blog) but other than that, she is back to her silly, smiling self.
Having the NG inserted really upset Zoe this time. We don't know if it was because she was feeling really lousy or just really pissed. She kept signing "daddy" and pointed at the tube while shaking her head no. (It was Gavin's turn to insert the tube and this time Zoe was going to make sure he knew she didn't like it!) We laughed because even days later Zoe was calling it the "daddy tube." Ah well, I have no sympathy since the sign for vomiting is still "mommy" while gagging or sticking out her tongue!
Zoe actually removed the NG herself by accident this time. We were planning on running one last feed and then pulling the tube, but Zoe pulled it while playing. She was then very upset and would not calm down until I figured out that she was upset that we would put the tube back in since for days I had been saying, "Zoe, don't pull on your tube. If you pull it out, we will have to put it back in." Once I reassured Zoe that she was done with the tube and we would not put another tube in, she happily played in her bath and forgot all about it. It still amazes me how much she does listen for a 3yo!

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

Zoe Self Feeding Skills

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

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

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

Monday, November 1, 2010

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.


video

Tuesday, October 26, 2010

Zoe's announcement

Hello everyone

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







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

Genevieve Adds:

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

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

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

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

Last cute story about Zoe and babies:

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

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

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

Monday, October 4, 2010

Vote for 1p36!!!!!

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

1p36 DSA Pepsi Refresh Awareness Campaign Blog

Friday, October 1, 2010

One more cold

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

Now bring on October : )

Wednesday, September 29, 2010

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!

Tuesday, September 7, 2010

Ahhhh, Winter is Coming...

Pain Meds

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

First Cold of the Season

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

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

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

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

Thursday, September 2, 2010

Zoe Sick- Minor

Fevers With a Cause

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

Thursday, August 12, 2010

We're Back!

A Great Trip

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

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

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

Photos To Come

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

Little Cow-Girl

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

Just Too Excited!

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

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

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

Wednesday, July 28, 2010

We're Off!

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

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

Saturday, July 17, 2010

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 :)

Friday, July 16, 2010

Chapman State Park Camping Pictures

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

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

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

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

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

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

The Year of F

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

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

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

Friends

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

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

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

Fun

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

Zoe's Complex Thought:

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

Zoe then did a series of signs that amazed us:

daddy sleeping zoe school friends

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

Big smile and repeat "daddy sleeping zoe school friends"

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

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

Zoe all done sleep

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

Zoe's Joke:

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

The other day Zoe told this joke:

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

She is definitely a funny little girl!

Family

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

Tuesday, June 29, 2010

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!

Sunday, June 20, 2010

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!

Monday, May 31, 2010

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.

Sunday, May 23, 2010

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!

Friday, May 21, 2010

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.

Tuesday, May 18, 2010

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.

"Daddy's a girl"

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

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

Sunday, May 16, 2010

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.

Monday, May 10, 2010

New profile picture

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

Sunday, May 9, 2010

Happy Mother's Day!

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

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

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

Spending the afternoon/evening assessing Zoe:

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

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

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

Ok, not a good sign.

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

This is my mother's day.

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

And I love her.

Sunday, April 25, 2010

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.

Saturday, April 17, 2010

We Miss You, Grandad!

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

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

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

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

Tuesday, April 6, 2010

Colours and Behaviours

Zoe Knows Her Colours!

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

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

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

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

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

What Else is Going on in That Head of Hers?

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

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

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

Zoe signs "daddy" while looking at a man.

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

Zoe signs "kiss."

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

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

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

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

Zoe Able to Control Herself

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

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

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

Sunday, March 14, 2010

Our Trip to Philadelphia

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

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

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

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

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

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

Patrick and Zoe discuss the game after. They look like they are having a serious discussion.
Unfortunately Zoe did not feel well for the rest of the trip. She has had a cold for the past several weeks and she started running high fevers on Sunday. So we cancelled our plans for meeting up with friends and doing shopping on Monday and just hung out at the house. We left early on Tuesday to split the drive into two days. We stayed at a motel Tuesday night and Zoe was miserable. Up every two hours with a high fever that required Motrin and Tylenol and cold baths to keep them at bay. We hurried back on Wednesday after Zoe had what we think was another short febrile seizure. Once we were home, she seemed better so we held off talking to the doctor until Thursday. The doctor wanted us to go there Friday for a chest xray. The xray, as always, was inconclusive. There is definitely some "findings" but it is hard to tell if it was just pneumonia or some chronic lung changes. Since this is the fourth or fifth (we've lost count) pneumonia this winter, Zoe's doctor is sending us to see the "chest team" at the hospital. We don't expect to get any answers but we are willing to go and see what they have to say. Perhaps we can come up with a plan for when Zoe runs these fevers. We are unsure if we should bring her to the doctor right away since we are usually told, lets hold off on antibiotics for a few days and see how she does. Which we are fine with- we don't want to give her meds if she doesn't need them. The tricky thing is that her pneumonia is not a typical pneumonia where it is bacterial and you treat it with drugs. It is often a viral cold that causes Zoe to produce more mucus which shows up as pneumonia in her lungs. So even when we give her antibiotics, they don't do anything since the underlying illness is viral.
The exciting part about the chest xray is that Zoe was able to do this one lying down instead of in that bicycle seat/plastic tube contraption she is usually in. We did this xray in the community office in the basement under the paediatrician's office. That way we didn't have to go to the hospital. We weren't sure if Zoe would stay still enough but she did a great job. She thought the xrays were hilarious- she was laughing the whole time. Which is much better than her crying and screaming which is what she usually did in the plastic tube. Who can blame her? It doesn't look comfortable.