Rough Night/ Rough Winter

Zoe Sick Again

Zoe has another cold. Like aways, it seems to take her weeks to get over it. We were very lucky that her MRI happened when she was actually well. We were at the doctor's yesterday and the good news is that her lungs sound good. So hopefully she will fight this one off without too much medical intervention. The high fevers (spiking over 39 C/ 102.2 F) makes me a little nervous since that is with Motrin and Tylenol around the clock. We were told to return Friday morning if the fevers did not go away. Since they are getting worse (she was just 39.6 C/ 103.3 F with Motrin on board), we will be heading back to the doctor's in the morning.

Not Blogging Much

We haven't blogged much lately since we have been having a rough winter. Although this winter does seem a little better than last (knock on wood!). Zoe has been making some amazing communication/cognitive gains- she knows some of her colours, is making choices, understands consequences, is following two step commands, etc. At the same time, Zoe's physical development is progressing very very very slowly. She is still not able to sit on her own and can not scoot or crawl at all. She does amazing in the walker and we try to have her in it as much as possible. It is like she is a different child- she strides around the house in complete control and in charge of where she wants to go. She does get frustrated that the toy she worked so hard to get to falls on the ground and she is not able to pick it up.

Conference Plans for Salt Lake City

The conference will be held in late July in Salt Lake City this year. Plans are under way and we are looking into costs. We really want to go again this year. We get so much out of being around other 1p36 parents. It's hard to think ahead right now since we are struggling to get through the day. But it does give us something positive to look forward to.

There are lots of positive things to focus on.

Lots of negative things too.

Which I guess is why I haven't posted much lately. It is too easy to focus on Zoe being sick all the time right now. Or to ignore that and focus on the more positive gains she is making. I feel like it does not really give a picture of what life is like right now. But I guess that is how it is for everyone.

And so I post to keep people up to date.

MRI and Tear Duct Plugs

MRI

Zoe has been due to get another MRI since October 2008 to check on the status of the syrinx in her spine. In the fall of 2008 we met with anesthesia to discuss the difficulty people have with getting an IV into Zoe. During her MRI at six months of age, they were unsuccessful (after more than 20 tries) to get an IV into Zoe and therefore proceeded without IV access. This has a lot of risks to it. So in October 2008, they decided to hold off until fall 2009. We were set to bring her in for her MRI last November, but since she had H1N1 in early November, they did not feel comfortable giving her full anaesthesia. So again, it was put on hold.

On Wednesday this week we got a call that they booked Zoe for Friday morning. Zoe was healthy (as healthy as Zoe gets which means occasional fevers but her lungs sound clear) so we were able to go ahead with the test yesterday.

They were able to get an IV in on the third try. They seemed unhappy about this (Zoe was given anaesthetic air first so she was asleep and I guess they are used to having more success with IVs when the child is sleeping) but we were very happy they got it at all.

Minor Eye Surgery

When we found out the test was booked for Friday, we started a flurry of emails and phone calls to coordinate with Zoe's opthalmologist. Zoe does not produce tears and despite us putting in tear gel four times a day, her cornea are becoming dangerously dry. When the cornea become too dry, there can be permanent damage and blindness. Obviously, not a good thing. The original plan was to put tear duct plugs in the bottom two tear ducts. That was six months ago. Yesterday, the ophthalmologist mentioned that he would prefer to do all four tear ducts since Zoe's eyes have gotten more dry.

We were very happy that they were able to coordinate both procedures. This meant that Zoe would not have to return to the hospital to get another full anaesthetic. We had to really push for this, but we were very happy that they listened in the end and were willing to do what is best for Zoe.

Recovery

If I haven't said this before, Zoe is amazing. She was groggy and a little grumpy yesterday but did great with recovery. I think she was having some bad dreams because she was whimpering in her sleep and wouldn't settle down until one of us held her. But she ate and drank great. And last night she slept most of the night.

Zoe is so tolerant of not feeling well. At one point when we were making dinner, Zoe made a noise so I went to help her with her toy. She squawked at me, pointed at a small puddle of puke on her toy, and looked up at me as if to say, "Mom, get that puke off my toy." I wiped up the puke and Zoe went back to smiling and playing with her toy.

I tell you, she really is amazing.

Another Saturday Night

Just another day in caring for Zoe.

She only had one small pee today. Which means force feeding her. Which I hate. And Zoe has always hated but can now sign "angry" to make sure I know she hates it.

And just another bath.

Where Zoe tips her face back into the water in an attempt to drown herself. She sucks the water into her lungs. I sit her up while she chokes. But after a few seconds she takes a breath.

And I wonder.

How many more baths like this?

How many more times do I have to bend over and give her body total support just to get her clean?

How many more times is she going to choke herself?

And I already know the answer to that- too many to count.....as many as it takes....and it doesn't really matter how many since I will always be here with her.

As I scrub her scalp medicated shampoo into her head Zoe accidentally knocks her turtle toy so the neck makes the cracking sound she loves. I see a tiny smile start and a small chuckle, "Heh heh heh."

And I think two thoughts simultaneously:

"This kid is going to kill me."

And

"My god she is gorgeous."

I ask Zoe, "Are you breaking necks?" (This is a game we play with her cracking turtle). Zoe throws her head back in a full grin and looks at me expectantly.

And I think, "How did I get so lucky?"

Fun with the swine flu

So Zoe was hospitalized for the H1N1 virus this last week. She was in for 8 days and is now at home on NG feeds. She had been slightly sick a couple of weeks earlier but as Genevieve was a bit sick then and Gavin had a really bad headache/fever for a couple of days we thought she had managed to avoid it too badly. We were hopeful this was our brush with the swine flu. Then Genevieve got sick again for five days or so (and Genevieve doesn't usually get sick). Zoe was still well however. As she is in the "high risk" catagory she got the H1N1 vaccine on Friday the 30th of October, about 2 days after it became available up here. She had a bit of a temp over the weekend but was in good spirits and eating well - we just thought it was a reaction to the vaccine (and actually, it could have been just that). On Monday we sent her off to school and she had a good day. Monday evening though she started fussing and spiking fevers up to 39.5 degrees centrigrade (103 farinheit). We went to the Emergency department at Sick Kids (where Gavin works) and her temp was taken at 37.5 centrigrade (37 is "normal- Zoe usually runs half a degree below that)- we think this temp was incorrect as they did it in her armpit instead of her butt (which Zoe actually likes- strange girl) and she was squiggling a lot. Never- the-less we jumped the cue due to Zoe's complicated medical situation. and got into a room in the ED. Good thing we did because a half hour later she had a febrile seizure and temp was up to 40.5 (105 farniheit). The seizure lasted a couple of minutes. They gave her rectal Ativan which she promptly pooped out. Her airway stayed open but they couldn't get IV access after six tries so that was a bit tricky. They eventually got a line in on the seventh try later on. We were not happy about the seizure- Zoe (unlike a lot of the 1p36 kids) has never had seizures before and we weren't anxious to start. But hopefully this was just a febrile seizure and not part of an underlying epileptic condition. She only had the one, so that is good news.

She did well in hospital, just made slow progress. Typically the fever with H1N1 lasts about four days- she is now on day 10. She isn't eating or drinking much, hence the NG (which she has already pulled out once). But she is eating more each day. Not drinking a thing, but that is how Zoe is when she is sick. We are comfortable managing the NG at home; we ended up doing it frequently last winter to keep Zoe out of hospital. Hopefully we will be able to remove it in the next few days. She was on a small amount of oxygen while in the hospital for a few days but only by mask, nasal prongs (useless- they always end up in her mouth or her eyes) or blow by.

It was tough being in hospital again. Zoe's grandfather Alan is here right now- he came in from Calgary to help us around the house but ended up doing our laundry and bringing in fresh laundry, food and clean cloth diapers in for us. It was a big help, as both of us stayed at the hosptial with Zoe to do her care, run her feeds, take her temps etc. When Zoe is in we like to do most of her care anyway. Genevieve took Tuesday and Wednesday off but went back to work Thursday and Friday. As she works on the 5th floor of Sick Kids and we were on the 7th it made her commute a lot shorter (unless she got stuck on the stairs behind some big fatty around the sixth floor). Gavin ended up working two twleve hour shifts in the Emergency room on Saturday and Sunday, mainly because two of our other staff were out with H1N1 themselves and the sole remaining person had worked 5 days straight. So we are all pretty much exausted- Zoe from being sick, Gavin and Genevieve from looking after Zoe, sleeping at the hospital and working too much (on Sunday evening I remarked to a colleague that I hadn't been outside the hospital for 48 hours- shortly after Genevieve found me and made me take a walk with her!) and my dad from running around and doing all our scut work. But we are home. Zoe was one excited little girl when she saw she was going to get to sleep in her own bed yesterday after coming home!

Zoe sleeping in her big girl hospital bed. This was the first time she has ever slept for any length of time in a large bed. It was useful though, because for the first couple of nights she was so restless mom or dad would have to climb up there and sleep with her. Not very restful for us (Zoe is not a peaceful sleeper) but what she needed!

Zoe and her wonderful respite worker Riann, who came in on her own time to give mom and dad a quick break one day.

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An update- it's now the 13th and we pulled Zoe's NG tube last night. Sounds like she had a good day at preschool today and is eating better. So hopefully she is on the rebound.

Equipment

Bath Chair

We tried out a surfer bather hydraulic bath lift but we have found it is not a good fit for us. It was great at lifting and lowering Zoe into and out of the bath but since the lift weighs as much as Zoe and we do not have a second bathtub, setting it up is as much work as lifting Zoe. From trying it out we did figure out that we do want to look into a bath chair as an option at this point. Zoe is still not able to support herself at all in the bath and has started a behaviour where she flings herself back in order to drink the water. Kids at this age typically try to drink the water but since Zoe is on her back she ends up choking and aspirating on the water. Which is not a good thing! So we are waiting to try out some different bath chair options.

New Therapy Plan

Zoe just started at a rehab centre. She will now go there for therapy rather than the therapist coming to our house as they have done until now. We are excited to start this next phase of Zoe's therapy because we know it will be more intense and push her more. We are a little worried that this will be very hard on her. But we know that it is good for her in the long run.

The Never Ending Parental Guilt

During Zoe's assessment for the rehab centre it has become quite obvious that her therapists have not been pushing her as much as they should have. And we knew this for the past little while but since Zoe had such a rough winter we didn't want to push her too much. Since Zoe has been sick, we focused on other goals like communication, social, and walker skills. We know that we are amazing parents and that Zoe has grown so much but still we do feel guilt that we did not push her more with physical therapy. Does any parent not feel this guilt all the time? No matter how much you give your kids, it never seems like enough. As a parent, you want them to have it all. So we try to sit back and see how far Zoe has come. And the reality is Zoe would still be very delayed physically no matter what. She was far too sick most of this past year to have much energy for focusing on gross motor skills. It is actually amazing that Zoe is doing as well as she is considering all of the challenges she faces every day.

Zoe is finally big enough to sit at the table like a big girl to play or eat. She is quite proud of herself. She even signs "Zoe proud" when she is especially proud of herself these days. It is amazing how she is starting to pick up on social expectations/ pressure. She had to go to the back of the line at school for pushing and she was very upset about it. She kept signing "Zoe" with a sad face when the teacher was telling me about it. I guess she learned though since she hasn't pushed in line since then. We are encouraging her to feel proud of herself when she does the right thing by telling each other about it, "Daddy, Zoe wants you to know that she turned the light off in her room all by herself" or "Zoe wants you to know that she helped pick which vegetables I should chop up first for the stir fry" etc which results in Zoe smiling and signing "proud."

Oh no- what would our Scottish relies think! Great Grandma Ross already warned us, "She's a bonny wee babity but don't tell her she is so bonny or she will get to be too proud."

Erin (Shelby's mom) gave us a bunch of Shelby's old clothes and this blow up donut thing. At first we thought this would never work for Zoe (she keeps flinging herself backward). But we are trying it out to work on sitting skills. It seems like we have been working on sitting forever but we try to remind ourselves it has only been 2 1/2 yrs. Zoe still can not sit on her own at all so we are hoping this will give her practice time to build strength and muscles she needs for sitting.

And Zoe thinks it is quite fun to lay in the donut as well! Daddy thinks her new hat is fun too. We also go one with jiggly bells on it and Zoe thought it was hilarious when she moved her head and heard the bells jingle.

Daddy and mommy got some new equipment too! Zoe was checking out our new treadmill. It has become obvious that we will never have time to leave the house in order to exercise and so we invested in some exercise equipment. We have been enjoying the time together to catch up on our day while exercising after Zoe is in bed. And we keep each other motivated. Lifting and caring for Zoe is really starting to put a strain on both of us physically so we know it is important to make sure we stay in good shape. Plus it is a great stress buster at the end of a hard day.

Our Thanksgiving Holiday

The Ontario Cottage Experience

"Going to cottage" is a very popular holiday plan for many people from Ontario. We planned to camp this September but never made it there so instead we decided to do the traditional cottage experience since camping in October can be a bit chilly. We were quite pleased with how relaxing a trip it ended up being. We went to Gananoque in the 1000 islands area.

I took a long time researching cottages to find one that Zoe could easily use her walker in. This cottage was great because the scenery out the front window was gorgeous. We were right on the river with our own private beach.

Zoe sits with daddy while enjoying her first cruise.

Zoe tuckered out from storming the castle.

Zoe laughing with mommy on the cruise ride back to the cottage.

Zoe was getting a bit tired by this time but luckily daddy brought a toy that was both entertaining and yummy!

This is the pier that was right outside our cottage. Zoe did a great job walking up and down it every night. It gave us a chance to get outside to enjoy the scenery. And we were amazed that Zoe did so well walking on uneven ground. She did get a little frustrated at times because she couldn't understand why she couldn't go swimming.

Family shot while sight seeing at the top of the 1000 islands Skydeck on Hill Island. Zoe's favourite part of this day trip was walking in the bathroom and the elevator. Doesn't Zoe look too cool for her parents with her new transition shades?

Last stop on the way home- Chucky Cheese! It wasn't quite as fun as mommy remembered it being from when she was a kid. But it is a great place to bring a kid like Zoe. She got to ride her first merry-go-round, she loved this car that bumped up and down, and she really liked licking the skee balls! It was a great place for her to be able to run around in her walker and get to pick what she wanted to do.

Zoe's favourite part of Chucky Cheese was the slides. It is actually quite a work out for us to put her at the top and catch her at the bottom but that smile is well worth the effort.

Zoe's Prescription for Happiness

I was having a conversation with Zoe about how I have not been feeling well lately. Working in the field that I do I know how much kids pick up on when we think they are clueless about what is going on. As if that was not enough to prompt me to make sure that Zoe knows what is happening, her teacher asked me how I was feeling when I dropped Zoe off yesterday at preschool. I had stayed home from work last Friday and Gavin took Zoe to school so I figured that is why she was asking. But she elaborated and said that Zoe had seemed worried about me and was signing "mommy" and "hurt" at times. And so I had this conversation with Zoe today:

Genevieve: "Mommy hasn't been feeling very well but she is seeing doctors so they can help mommy feel better. Hopefully mommy will feel better soon. But you don't need to worry about mommy."

Zoe signs "kisses"

"Oh, are you going to give mommy kisses to help her feel better?"

Zoe smiles.

"That's a good idea. Kisses would help mommy feel better. What else do you think will make mommy feel better?"

Zoe signs "milk"

"Milk? You think milk and kisses will make mommy feel better?"

Zoe smiles and signs "play"

"Oh and playing will make mommy feel better too. Kisses, milk, and playing. Anything else?"

Zoe signs "sleep"

Laughing I say, "Yeah you are right, sleep would help too. So is that what mommy should do, get lots of kisses, milk, playing, and sleep?"

Zoe smiles and signs "mommy" "happy"

"Yes, you are right Zoe. I think those things would make mommy happy."

So there you have it- Zoe's prescription for happiness:
kisses, milk, playing, and sleep

Sounds good to me!