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.

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 :)

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!

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!