What we've been up to

*Finding Nemo...Do you see Nemo?*

First of all, Caleb had to go without the helmet for more than a week because he had developed a skin breadown...Who knew there were complications in wearing a helmet? Crap!
So we were back to squre one, starting the helmet wearing again 2 days ago. It's a buiding process, the first day 1 hour on and 1 hour off, next day 2 hours on, and 1 hour off...and so on. Today is a 4 hour-on day...

I was watching like a hawk to find any redness on his head and voila! there was a deep red spot again, so we called the head shape clinic right away, and fixed the problem . We don't want any more delay on this process...he is approaching 10 months mark already. You see, baby's head growth slows down after a certain time period, and it means if you start the process later, you should wear the helmet longer. The ideal time frame is around 6 months, so Caleb is already behind. But it is possible up until around 12 months(or sometimes even later) to fix the head shape...

Caleb's been hooked on the oxygen generator at night. Those round things on Caleb's cheeks above photos are for the oxygen tubes.

Andy ordered an oxigen monitor through ebay to watch Caleb's oxygen level. It is from China, and it connects to your computer and uses the computer monitor as it's monitor. It's not the best one but we only paid a fraction of the money we could have paid if we were going for a hospital quality monitor.

2 nights ago, we brought the recording-over-night monitor from the hospital for their review. We ran the machine through the night and broungt it back to the hospital. They called today and said Caleb would still need oxygen at night, and they want us to run the test again in 2 weeks time.. I've been wondering if Caleb had this problem all along, and it was only revealed through this infection. And I can tell the doctor is also wondering about it, because he wants to see us with the next results to determine whether we will need further investigation on this matter. Can it be sleep apnea? We will find out.. Anyway, it's great that we are aware of this problem. Caleb seems to be brighter ever since he started the oxygen therapy... It might be a pure coincidence, though, because many things were also changed around that same time period, like an increased Lamictal dose, adding MCT oil into his diet and so on..

As we follow the instructions of the physiotherapist, here are a couple of things we do at home.

Inner tube to prevent arching, and to promote forward flexion. Actually this tube is a snow tube for tobagoning - You didn't think we could find a regular inner tube at wintertime in Calgary, did you?

Another thing- tummy time on the exercise ball...this one is new, and Caleb seems to have a love-hate relationship with this on-the-ball-tummy time. One time, he will be laughing and happy to be on the ball, and another time he will do absolutely anything to get off it.

That's what we've been up to!

Hitchvatars

Haven't seen the movie yet, but would love to see it!
Andvatar looks gorgeous!

No way, seriously!

New draft for the Calgary Flames

Here he is! Caleb Hitchcock, Rookie of the year, the cutest player ever!

We are all home from the Children's hospital. Caleb was discharged yesterday evening with the condition that he should be attached to the oxygen generator during the night for 2 weeks. They will reassess him in 2 weeks to see if he will still need the oxygen therapy or not.

The helmet? No, he didn't have brain surgery. It is to fix his flat-headedness(plagiocephaly). He needs to wear this helmet 23 hours a day for 4 months. Actually, this is a big relief for me, since his flat-headedness has been a big source of stress. Not being able to sit up, most of the time Caleb is on the chair, or lyng down , so we constantly had to reposition his head and it's been a struggle. Ever since he was born, he prefers to turning his head to the right, and that's the direction he will turn his head naturally no matter how many times you fix it otherwise.

And I am glad that his head will be (almost) perfectly round at the end. When we first went to the head shape clinic at the Children's, the doctor said it is not a definite necessity that Caleb should wear the helmet, but when we said we really wanted it, he added "Actually, with his potential disability, he will probably be scrutinized by people more than other kids". He went on to say that he had witnessed the case where there were 2 kids with disabilities, one with perfectly beautiful features, with severe disability, and the other with obviously disfigured features, but with less severity in his disability. People perceived the disfigured child as a more challenged child and treated him likewise. The doctor said "That's the unfairness of reality." Bottom line, he thought it was a good idea to fix what we can, not to make his already challenging life harder.

I've seen that the parents with "normal" kids express their feelings about the social stigma that is associated with the fact that their children had to wear the helmets. I might have felt the same way if Caleb were perfectly healthy otherwise...but, when I am faced with the more cruel realities, like Caleb may never walk, their "sad feelings",albeit legitmate, sounded rather silly. If the helmet wearing for a few months can be a stigma, what about a wheelchair? What about leg braces or a walker? I'd better start practicing brazen-facedness, saying "What? What is wrong with wearing the leg braces?"

Because, Of all the children with polymicrogyria who I've encountered on the internet, I only know 2 children who can actually walk. Granted, I didn't see too many children with PMG(less than 15 or maybe 10), and many are still pretty young(less than 5 years old)- some of them might end up walking in later ages. But EVERY ONE OF THEM(at least the children who are old enough to be determined) have some kind of disabilities, some more severe than others. So, I am getting ready to face the fact that Caleb will be categorized as a child with disability. Does this hurt? Enough to make me weep... but I am in the process of accepting the reality that is getting more obvious as Caleb is getting older. I think I have been in the denial stage long enough.

But for now, I am comforted looking into Caleb's eyes...the most beautiful eyes in the world.

2010

Happy new year!

Our family had to greet the new year seperately, me at home, and Andy and Caleb at the children's hospital. Caleb has been at the hospital for 3 days now with Rhinovirus infection. His oxygen level is low, and that means he is not breathing well on his own. Andy said Caleb was doing better yesterday, so hopefully they can come home today. Unfortunately, I've been sick too... Caleb and I got sick basically at the same time, so it's been solely Andy's job to take care of Caleb at the hospital. The timing cannot be more cruel- Andy spent his whole summer vacation basically at the hospital, and now he is spending his christmas break there....Poor Andy!

The day before Caleb was admitted to the hospital, we took Caleb to the swimming pool for the first time. Caleb loves his bath time, and we were excited to see him in the pool...but, he didn't seem to even notice that he was in the water, and later on fell asleep in the pool! Who ever falls asleep in the swimming pool?! Looking back, he was already showing signs of sickness then. Poor little guy. But he was so cute in his life jacket..

I miss my boys!