The Dam Breaks

All the stuffed emotions came out with sobs and tears this morning while I was praying. I didn't even realize till now that I was overwhelmed with all these emotions.

I thought I was dealing with things pretty good nowadays, considering the circumstances. I didn't even feel the need to share about Caleb so much, not knowing what to share, thinking nothing new was happening. Whenever people asked about Caleb, my answers were always the same. "Oh, he is doing better" I got out of touch with my emotions so much for the past few weeks, but I grew more and more irritable, negative, and impatient. Looking back, my heart was so burdened with things that it was sending warning signals.

These are the things that I realized today; I still feel very helpless whenever I see Caleb having seizures. It's like a very dark cloud suddenly hovering over my head, like a sucker punch in the stomach. I worry about not being the mom that Caleb needs. When I see the babies, or even pictures of babies who are sitting up by themselves holding something with their hands, it reminds me (many times with pangs) that those are the things that Caleb would be doing if he developed normally. I mentally decided not to be bothered by them, but I found out that my emotions didn't comply to that decision at all.

On top of that, I worry if Caleb will struggle with the fact that he is adopted, feeling insecure or sad... This is a whole new subject that I can talk more about later...

But in reality, Caleb is really doing better overall. Compared to a month ago, we can see the difference in him. He is way more curious, alert, and responsive. He smiles more, he wiggles a lot more, too. So those things are what I am supposed to think about, and be thankful for, and I am. But there are things that are undeniably there, too, that come out unexpectedly to stab my heart.

In spite of it all, I still know that God has a special plan for Caleb, and I hope I can do my part well to be the good supporter needed to fulfill that special plan. To do that, I need to let out my emotions freely sometimes, like today, so that I can be refreshed and again 'take it one day at a time'..

Fine tuning

Recently we raised up the ratio of Caleb's ketogenic diet to 3:1. We are still in the fine tuning stage to find the right ratio, calorie intake and so on.

Since the 'miracle day' right after the diet started, it was only lately that we saw him doing as well. Sometimes it can be a pain-stakingly slow process, it takes lots of patience to go through this fine tuning stage.

Caleb's Ketone levels have been constantly below the target level, and we are hoping the changes that have been made would solve the problem.

But, most important thing is Caleb has been steadily developing since the diet started. I don't keep track of what monthly milestones supposed to be any more. What matters is Caleb is developing at his own pace, and I believe he will develop to his full potential eventually.

With all these going on, we also visited Andy's dad and grandma in Louisiana....With 7 months old Keto baby tagged along. Crazy, eh? You know what was even crazier? We had to change to 3 different planes each way. I know... But it was altogether a fun, new experience to be down south for the first time. Especially, I loved the food down there. Umm, Umm, Umm...Cajun food, yummy! Except for one occasion when I spotted "frog legs" on a restaurant menu. I can't even look at frogs, so seeing it as an ingredient of a dish? I doublechecked the unidentified food item in my plate, just in case. (it was hush puppies, by the way)

Caleb's first plane ride- he slept most of the time...you missed out, son!

Grandma's old house porch....so, this is where Andy's porch obsession was born. He always comments on a porch whenever he sees one. "hey, look at that porch!", "Big porch!", "Oh, nice porch!".....FYI, we don't have a porch. There aren't too many houses with real porches to begin with, in Calgary. If they do, they are not like ones in down south. They are usually tiny. And we don't have any plan to move anytime soon, so for the time being, his comments on porches will still be covetous-nature kind.

Ketogenic Diet update

It's been a week since Caleb started the Ketogenic Diet.

We came home on Thursday with a ratio of 2.5:1 because Caleb's keton level was pretty good already on that ratio. But when we came home, we went through a major trial and error period, learning how to properly mix his special formula. The main thing was the water temperature. The KetoCal formula dissolves in around 45-50 degree Celsius, and even though I made sure the water temperature was correct, what happened , I think, was when it was poured into the big jug, the jug cooled down the temperature of the water and thus the formula didn't dissolve properly. As soon as we realized it, we fixed the problem by making the water a little bit hotter.

But the main thing I wanted to share is that the Ketogenic Diet seems to be working! On Friday, Caleb was a TOTALLY different baby. He was smiling all day, cooed and even laughed!

After that Caleb had a few rough days while we were figuring out how to make the formula right, but again today, he was a very happy, smiley baby. Even though he had a few jerks today, they were way milder and shorter than before.

It is probably too early to tell, but we may have found the miracle we were asking for.

By the way, his diet ratio went up to 2.75:1 since this morning.

When I see these pictures, Caleb reminds me of ......

This boy from Where the Wild Things Are.

The new Keto kid on the block

Here we are, at the hospital again!

This time, it is to initiate the Ketogenic Diet for Caleb.

We will be here for a few days, and they will monitor Caleb.

I learned that on the Keto diet, we should be careful with those hidden carbs in things like toothpaste, children's Tylenol(liquid form) and so on.

Yesterday we watched a movie called "First do no harm" -This is made by Jim Abrahams, whose son had epilepsy and was cured by the Ketogenic diet. Jim was the one who sparked the interest in the treatment and caused a big movement to revive the "old-day" method.

I realized how lucky we are to even be able to try it this early. Back when Jim Abrahams son, Charlie was failing all the medications about 2 decades ago, no doctor really suggested the Ketogenic Diet, but Jim found the diet himself through books studying relentlessly to find the "cure" for his son. Now, the Ketogenic Diet is not treated as anecdotal, but one of the first line treatment options for children with refractory seizures.

Here is the link to the Charlie foundation in case you want to know more about this diet.

http://www.charliefoundation.org/

Do we look too happy in the hospital room??

Keto Diet coming up

It requires diligence to be an owner of a blog, I realize....
Diligence is scarce around here, thus infrequent updates.


We are waiting to hear from the dietitian to meet with her and plan Caleb's Ketogenic diet. We are going to start it slowly with a modified ratio, and gradually increase to 4:1(fat: protein/little bit of carb).

When Andy had seen the menu for older kids on Ketogenic diet, he said it doesn't look like a "diet" because those items(like cheese burgers-probably without buns-, tuna salads, chocolate milkshakes...) sound even appealing. But how long do you think you can go without bread or pasta, Andy??


The cutest plumber butt around....

Considering Ketogenic Diet

Last week was an OK week as far as seizures go.
He had average 2-4 clusters a day(worst day was with 6 clusters). I am not really happy with these numbers.


On top of that, his lack of smile concerns me. Does this mean that he regressed to 2 months old stage developmentally? Yesterday, when I put him on his tummy, he really struggled to hold his head up, and failed miserably. I refused to rescue him right away from his misery, hoping he would conjure up his strength and defiantly hold his head up.....but he didn't. I finally picked him up, and he was so upset he cried for a long time.


Maybe I am putting too much expectation on him....maybe I should follow his lead on his development. But at the same time, I am worried that he is not progressing enough due to a lack of some kind of physical therapy. I am going to ask the doctor about it next week.


I have been quite emotional lately. Also, I feel guilty about not being a good enough mom to help Caleb...I think it's a mostly false guilt, and I am trying not to give in to the dark force...

I realize again that I need to really rely on God for EVERYTHING. I need to ask, plead, and request to God, and surrender to his will.


Also, I decided to be thankful for anything worth appreciating, like the fact that Caleb still feeds well, and he is such an amazingly good looking baby :-)

We are considering Ketogenic Diet for Caleb. I was initially scared of it, considering the fact that the diet consists mostly of fat(and some protein), but when I looked at it more closely, it sounds like a good way to achieve seizure control(Many seizure professionals are in favor of the approach especially for children with refractory seizures). I was really hoping Vigabatrin would stop Caleb's seizures but it doesn't look like the case. So, if the doctor says yes, we will probably go for it as soon as he thinks is good. Now is actually a good time to do that because he won't complain about not getting any cookies....he will just have to eat what we give him.(or will he??)

Road ahead

Yesterday, Caleb had 6 clusters of seizures, some of which were longer and more intense. Especially after one clusters, he was crying so hard for a few minutes. He usually grunts, whimpers or yells(mostly when he is hungry), and he doesn't really cry.

So if he cries, it's a big deal. He cried as if he was in pain. Seeing him like that, we were totally stressed and worried.

He is weaning off of Phenobarbatol, and taking a new med, Lamictal, with a very slow increase of the dose to prevent serious side effects. So was it a temporary fluctuation with the new change, or is he just deteriorating?

On top of that, when we had gone to Rona, I noticed a baby, definitely smaller than Caleb, with total head and body control and pointing to things with his little fingers. I couldn't help but compare Caleb with him. It bothered me to see the difference between their developmental advancement.

Apparently, Andy noticed the same thing. He joked, "Well, we have a rag doll baby!" - Caleb is bigger for his age, but doesn't have good muscle tone ever since the seizures started and is floppy when held.

Maybe that baby in the store was older than Caleb(just small), and maybe we should give Caleb some time to catch up from the lost time when he was hospitalized and seizing a lot.

The thing is, in my heart, I was rejecting the possibility that Caleb might be different from other children, and have some challenges and disabilities. Some PMG children can't sit up without support, or walk. Will Caleb be able to walk? Will he be able to sit on his own? We don't know yet. He may, or he may not.

I realized that I need to acknowledge Caleb's unique pace in his development, and should not give into discouragement every time I notice the differences between him and the "neurotypical" kids.

At least, he was better today. He slept a lot, and probably that helped him not to have many seizures. (Apparently, sleep and seizures are closely related) So, I decided not to panic, and wait and see how he is doing for the next few days, before I call the doctor and cry out SOS.

Back to school

School days resumed! Well, after spending his supposed summer "break" mostly in hospital, Andy is not exactly excited to go back to work. Also, I feel the pain of sole night shift duty to feed Caleb. Caleb is not sleeping through the night yet, but every now and then, we get lucky.

We are not intensely vigilant in counting seizures anymore, as Dr. Bello advised. We count only the ones that we see, day or night. No video taping overnight either...It makes our lives little bit easier. And today, I didn't see any seizures, really.

Caleb is doing really good. I was wondering if he was way behind the developmental milestones, but when I checked 4 month milestones, he is not far from them at all. Actually I think he is almost on target..

Here is the picture of him today with his head up!

And ready to roll over with Tica the cat's supervision

(he can do tummy to back, but not back to tummy yet)

A somewhat normal life

Caleb is still doing pretty good. He is having a few clusters of short seizures and jerks a day, but compared to 80~90 a day, it is still really good.

His mood is good, and it's such a delight to see him smile, it just lightens my heart.

We went to Value Village(our favorite store...out motto is "to be frugal"!) and Walmart today.

It felt good to go out together again after a month of being in a tumultuous dark tunnel. It feels like we are finally having a 'normal' life again. We cannot predict anything about Caleb's future, but we are happy today as we take it one day at a time.

Caleb is growing so fast that he wears clothes 12 months +(he is only 4 1/2 months old!). When a doctor came to see Caleb at the hospital, she joked to the resident who came together, "As you can see, he is just wasting away!"

Through all the seizures and everything, he didn't stop eating well which is a real blessing considering that many PMG kids have swallowing issues(thus eating difficulties). He is a real trooper, and my love for him is stronger than ever.

A good day

It's been 24 hours since Caleb had a real seizure, except for a few 1 second ones! He still had many jerks/twitches, but this is the best day ever since he started having seizures a month ago.

I also noticed that his neck control got better, and most of all, he is smiling again!

For the last 30+ days, he had regressed, lost his neck control, and hardly smiled or cooed, but things have changed since yesterday.

So is this new medicine, vigabatrin, the magic pill? It's too early to tell, and the doctor said it's unlikely that Caleb will be seizure free. I am also aware of the fact that he can develope different kinds of seizures growing up. But then again, I believe God can do miracles. So why not hope for the best?

Whatever may come tomorrow, we will be celebrating the victories of today, and watching Caleb smile again is a big reason to celebrate!

Another EEG done

Caleb had another EEG done today.
The doctor said his EEG looks about 20% better than the last one, also it does not show hypsarrhythmia(I know, it's a mouthful) which is an EEG pattern that typically shows up in children that have Infantile Spasms.
Caleb's seizures went down from around 90 a day to about 35.
We will be going home tomorrow after 3 weeks in the hospital!