Million dollar baby

We went to see Caleb's neurologist yesterday. First we talked with the nurse and she said Caleb looked really, really good. Also, she mentioned he is so much bigger. (which was not surprising. By the way, he turned 18 months yesterday. 1 year and a half old!)

Then she went outside and shortly after the neurologist came in, and said "She(the nurse) said Caleb looked like a million bucks!" and he started examining Caleb himself. He also said Caleb looked really good. "He looks like ten million bucks!"

I think they are impressed more partly because when they saw Caleb last time in May, he still had oxygen tube in his nose and was wearing the helmet. Anyway, the doctor was pleased with Caleb's progress-better neck, and torso muscle control, his alertness and most of all, the reduction of the seizures- he said "Whichever saint you've been praying to....it's great" He told us that there were many cases where children like Caleb developed quite suddenly after the initial developmental plateau. When he mentioned the higher power that's been intervening in Caleb's life, perhaps he was half joking, but in reality, so many people are still praying for Caleb's health. When Caleb was having hundreds of seizures a day for weeks, one doctor mentioned that it was amazing to him how Caleb still had eye contact with people(he was only 4 months old then), and he said there is something special about Caleb.

While there have been victories, there also has been a set back, though, a phone call form the respiratory clinic after another overnight oxygen saturation level monitoring, that Caleb still needs oxygen at night.

But, when you have a million dollar baby in your hands, you shouldn't complain too much about minute set backs, right?

Transformation

Caleb is not a baby anymore, as you can see. He is a boy now!

He is doing really good. We see much less seizures around here nowadays, like average one cluster a week. I think the Ketogenic Diet is the biggest factor of the seizure control. Steroid was not the reason why, as we initially believed, because when we actually tried the 2nd run of the regimen of steroid, Caleb had even more seizures. So we decided not to continue, with the consent of Caleb's neurologist. Not only the steroid did not stop the seizures, but it made Caleb so miserable for the 5 days he was on it.

We now have a developmental aid come to our house for 2 hours a day, 5 days a week. I think it is already making a difference, especially with his hand motor skills. But we heard that the service will be cut to 1 hour and a half due to the budget cut from the government. I am not happy with it, obviously, but it is better than not getting any service at all.

Physically, I think Caleb is at between 3-6 months stage, where he cannot sit up by himself yet, but can hold up his head on his tummy and roll... You might think I would feel sad about it. But, you know what? Actually I am happy with the progress he's been making, because I still remember vividly the days when I was wondering if Caleb would be stuck forever and would not develop any more. Because Caleb didn't cry a real cry for months(we thought he was just being mellow, but looking back, he was not well enough even to cry) when I see him cry on top of his lungs, that actually makes me happy! And who knows? Caleb might indeed catch up someday! We are hopeful today and we will remain hopeful tomorrow whatever life throws at us!

Good news and bad news

The title of this post could have been "Seizure free for 2 and a half weeks and counting!" except we saw 5 seizure jerks last night. Darn it!

It was the longest period without seizures since it all started last summer. It is awesome, but to get to this point, there were some hardships to go through. Caleb was rushed to the Children's hospital about 3 weeks ago in an ambulance. He was having a hard time breathing and looked extremely distressed, and it was 4:00am when we called 911.

Andy rode in the ambulance with Caleb, and I followed them shortly after in our car. So it was Caleb's 5th admission to the hospital. They diagnosed him with asthma; history proving the case with 2 previous admissions due to breathing difficulties. And it was good and bad. Bad, because of the obvious reasons, and good, because now we can help him with puffers before he gets to the point of respiratory distress.

They gave him oral steroids for 5 days at the hospital to treat his lung inflammation, and we think that might be why Caleb's seizure activities stopped. But then again, other factors have changed during the same time period, like our neuro Doc upped the dose of Clobazam the day before Caleb got sick, and also about a month ago the Ketogenic Diet ratio went up to 3:25 to 1 from 3 to 1. So we don't know what contributed where, but whatever the reason was, it was great to see him seizure-free.


Caleb's been very happy since the discharge, and his oxygen level is much better with daily asthma puffers. And he does not fuss when he is on his tummy! Who is this baby? Caleb used to HATE to be on his tummy and would roll right away to get away. But now, he will be on the floor for more than 30 minutes at a time without any complaints. I am delighted to see him on his tummy because he gets to work on those muscles.

Above picture shows what my cats went through when my nieces stayed with us. No one's life is easy, I guess.

What's up?

One of the reasons why I made this blog in the first place was to let people know how Caleb was doing, so that I didn't have to tell people individually, but as I've failed to provide any updates on how he's been doing for a couple of months, I feel that I am getting more and more "How is Caleb?" questions.

"He is OK" has been my unsatisfactory answer to everyone, but now that we got our place back to ourselves(and Caleb is napping at the moment) I thought I would write some more specifics about how Caleb is doing.
Caleb still has seizures most of the days, and the pattern has been changed too. For the past few months, he had seizures only when abruptly waken up(by noise,or being moved while sleep etc.) and Caleb's neuro Doc said it was definitely better than having seizures like, whenever. But since last week, he's been having seizures without any triggers, even though they still happened around sleep. He will wake up suddenly from a nap and have seizures, and some of the seizures were more intense, with Caleb not coming out of it between jerks, looking like he wasn't breathing. We are keeping an eye on this.
Also, Caleb is still on the Ketogenic Diet, and we recently upped the ratio to 3.25:1. He also joined the omnivore world by adding meat in his diet. His Ketone levels are pretty good, but he seems to sleep more since the ratio change.



Development wise, he hasn't progressed a lot, but we noticed that he has better neck control, and he can kind of roll over from back to tummy, but he still doesn't know how to pull his arms out. Because he cannot sit up by himself, we had to get special equipment called the Kid Kart- it's like a baby wheel chair with armpit supporter for proper sitting and a butterfly for trunk support. Even though it does not look like a traditional wheel chair, it still stands out and people tend to look. Also his helmet and oxygen tube on his nose put Caleb into 'Boy-you-look-really-sick' category even among the children visiting the hospital.
We are hoping to get rid of the helmet and the oxygen in about a month time. It will be nice when people see Caleb first before being distracted by all the equipments.

No news is good news

Caleb's been doing pretty good, even though he is still on oxygen. When we read from a pamphlet that it can take up to 6 months for babies to get off oxygen after respiratory infections, I didn't think that would be the case for Caleb. But, Caleb's been on oxygen for 4 months already. They will reassess him next week if his lungs are well enough to breath by themselves. (Fingers crossed!)

I didn't have time and/or energy to update the blog lately...Also, My brother's family has been living with us for more than a month now. They moved from Korea last month. It is a full house with my 2 rambunctious nieces running around! They bought a house a few houses down from us and they are moving this weekend. It will be a bitter-sweet day when they move out! But, it is so nice to have family close by, that's for sure.

Also I have been taking an interpreter training course (reluctantly) to keep my Korean interpreter position, although I haven't been working very much as an interpreter. On top of that, the library where I work also put out this mandatory course to make staff techno-savvy(?). So every week there is an assignment to try and learn what savvy people out there know. This week I was playing with Picasa, Google's photo tool, and the photo collage above is produced by it. I like the fact that you can put your photos right from Picasa to Blogger, but it only aligns the paragraphs on the center, which is a bummer.

Now that you read my excuses, you've forgiven me from not posting for 2 months, haven't you?

Our 2nd home

We are back at the Children's hospital. It's been almost a week since we were admitted.

This time it's a 'human pneumovirus' infection.(I am wondering if there is something like a 'cat pneumovirus', or a 'dog pneumovirus', because they specifically call it a "human" pneumovirus:-)

Again, the biggest issue is his breathing. He cannot maintain a good oxygen level by himself, so he's got a nose tube for oxygen, and he's got coughs, but his fever is down, thankfully.

When can we go home? We don't know yet...the doctors say that it takes a long time for babies to recover from this kind of illnesses with breathing issues.

It's almost scary how comfortable we feel at this hospital now. This is Caleb's 4 th admission during his 10 months of life.

I have to admit, I used to complain about Canadian Healthcare system. But when I think about all the care that Caleb is getting now, I am thankful. It would have been so much harder if we had been financially burdened by all this. It is almost unreal that his hospitalization, therapies and visits with specialists are all free of charge. When we were healthy, all we could see was how much tax we were paying every year. But since our son needs so much medical/health care support, it is comforting to know that they will provide the service that we need.

Instead of depressing photos of our hospital stay, here are some pictures when Caleb was happy and healthy(or should I say, relatively healthy, because he was on oxygen at night then, too, from rhinovirus)

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!