Mommy said I was so good! I was the only baby in the line who didn't cry with Santa!
Saturday, 24 December 2011
Santa
Grandma and Mommy took me to meet this man named "Santa". Apparently he brings me presents for 1 day a year! I am going to be nice to him!
Mommy said I was so good! I was the only baby in the line who didn't cry with Santa!
Mommy said I was so good! I was the only baby in the line who didn't cry with Santa!
Thursday, 22 December 2011
Ethan Update
I have been doing well off my meds since the middle of November.
However I am still on Creatine, Carnitine, Vitamin C, Omeprazole and Domperidone.
I contracted a cold last week, had a runny nose, cough and hands full of boogers. I spread my sickness to daddy and grandma, but somehow mommy was left unscathed. We left my blood test to this week as mommy thought that colds could alter the levels. However, we since found out that colds don't alter carnitine levels.
Mommy and I headed to Mac on Monday for the blood test. She reassured me that there would be no head pokes, and they could draw the blood from my arm. I was happy with this fact and agreed to go.
The blood line was ginormous! The number was at 33 and we pulled a 55. Mommy read the sign that said "If you have cold/flu like symptoms please ask for a mask" She knew there was absolutely no way that I would keep a mask on my face, so we waited in the hallway instead.
Mariya ran into us, and was excited to see me! She said I was looking good and couldn't believe I was doing so well. She said that the genetics department has been super busy and that we would be in for genetic counseling in the new year and that mommy and daddy would have blood taken. Mommy told her happily that she had already given her blood!
A few hours later I was laying down in a crib with tourniquets on my arms. I was not bothered by this as I was still chatting to mommy. Then I heard the blood lady say she was going to find someone to help with the holding.... I knew this meant business and as soon as the tourniquet went back on my arm I was screaming! Mommy was instructed to hold my legs and chest down. She told me that I was super strong and that she had to use pretty much her whole weight to keep me from moving.
Another thing to note is that Dr. T had ordered Full Carnitine, which apparently isn't orderable any more since Sept since it costs so much to run, so they took blood to run my acetylcarnitine. Hopefully this is okay with the Dr. as I don't want to have to have blood taken again.
Dave (Infant Development) did my 8 month assessment last week and I scored consistent to my 6 month assessment, however my communication mark went down a little as I was not saying any consonant sounds. He also noticed that my pincher on my right hand isn't as developed as my left. It must be due to my middle finger issue.
A few days after Dave assessed me, I started to say "ba"! Mommy has
also started some signs with me, however it is hard for me as my
shoulders are weak and I don't like the effort that goes in. She's
teaching me up, which I normally flail around to, so we consider that a
win. She is also teaching me book, ball and of course hi and bye. I
don't quite understand these but hopefully I will soon.
I have been enjoying my oat cereal, but had a set back when I got sick and would hardly take any cereal. I was still given a few spoons a day, but I had lost my love for it. I still enjoyed my sippy cup with formula and mommy had started to give me sips of water from her glass. Which I love! After I started to feel better last weekend I started to eat my oat cereal again, which was good timing because my swallow assessment was today!
Mommy told Cheryl and Laurie about my sippy and glass adventures. They especially liked how eager I was and I presented good clinically. So they just told mommy to proceed with extreme caution... which she has been doing anyway. Onto my cereal assessment, I still looked good so I have graduated to orange vegetable purees! Of course we will have to add water to thin them down for me. But! I am excited! There was talk of getting me another Barium swallow study to assess my ability to swallow thin liquids safely. We'll keep you posted if they actually do set me up with one. Laurie indicated that it would probably take 2 months to set up a time.
That is it from me!
Merry Christmas and Happy Holidays!
However I am still on Creatine, Carnitine, Vitamin C, Omeprazole and Domperidone.
I contracted a cold last week, had a runny nose, cough and hands full of boogers. I spread my sickness to daddy and grandma, but somehow mommy was left unscathed. We left my blood test to this week as mommy thought that colds could alter the levels. However, we since found out that colds don't alter carnitine levels.
Mommy and I headed to Mac on Monday for the blood test. She reassured me that there would be no head pokes, and they could draw the blood from my arm. I was happy with this fact and agreed to go.
The blood line was ginormous! The number was at 33 and we pulled a 55. Mommy read the sign that said "If you have cold/flu like symptoms please ask for a mask" She knew there was absolutely no way that I would keep a mask on my face, so we waited in the hallway instead.
Mariya ran into us, and was excited to see me! She said I was looking good and couldn't believe I was doing so well. She said that the genetics department has been super busy and that we would be in for genetic counseling in the new year and that mommy and daddy would have blood taken. Mommy told her happily that she had already given her blood!
A few hours later I was laying down in a crib with tourniquets on my arms. I was not bothered by this as I was still chatting to mommy. Then I heard the blood lady say she was going to find someone to help with the holding.... I knew this meant business and as soon as the tourniquet went back on my arm I was screaming! Mommy was instructed to hold my legs and chest down. She told me that I was super strong and that she had to use pretty much her whole weight to keep me from moving.
Another thing to note is that Dr. T had ordered Full Carnitine, which apparently isn't orderable any more since Sept since it costs so much to run, so they took blood to run my acetylcarnitine. Hopefully this is okay with the Dr. as I don't want to have to have blood taken again.
Dave (Infant Development) did my 8 month assessment last week and I scored consistent to my 6 month assessment, however my communication mark went down a little as I was not saying any consonant sounds. He also noticed that my pincher on my right hand isn't as developed as my left. It must be due to my middle finger issue.
 |
| 8 Month Assessment |
I have been enjoying my oat cereal, but had a set back when I got sick and would hardly take any cereal. I was still given a few spoons a day, but I had lost my love for it. I still enjoyed my sippy cup with formula and mommy had started to give me sips of water from her glass. Which I love! After I started to feel better last weekend I started to eat my oat cereal again, which was good timing because my swallow assessment was today!
Mommy told Cheryl and Laurie about my sippy and glass adventures. They especially liked how eager I was and I presented good clinically. So they just told mommy to proceed with extreme caution... which she has been doing anyway. Onto my cereal assessment, I still looked good so I have graduated to orange vegetable purees! Of course we will have to add water to thin them down for me. But! I am excited! There was talk of getting me another Barium swallow study to assess my ability to swallow thin liquids safely. We'll keep you posted if they actually do set me up with one. Laurie indicated that it would probably take 2 months to set up a time.
That is it from me!
Merry Christmas and Happy Holidays!
Saturday, 3 December 2011
What's been going on with Ethan?
I thought I would take a few moments to update my fellow readers on my progress before there are too many things to report!
As of today:
20 days: no Alpha Lipoic Acid
13 days: Carnitine went down to twice a day from 4 times daily
6 days: No Vitamin E
My CoQ10 gets D/C'd on Monday
I will be left on Creatine, Vitamin C, Omeprazole, Domperidone and Carnitine
My Carnitine levels will be checked mid December to see if I can be rid of the med, however a lot of metabolic/mitochondrial disorders have low carnitine levels, and Dr. T just wants to be sure that my levels are normal before I am taken off.
Since the last post I have learned
to stand with support for a few minutes. This makes me so happy as I am
frequently heard chatting up a storm from this position. I still don't
make any consonant sounds, but the sounds now resemble language, not
ear piercing squeals and grunts anymore. I can sit for hours playing
with my toys... and am happy as long as someone is playing with me. To
my mommy's dismay I have started to chew on my feet. I have been known
to roll from my back to tummy, but I don't do this very often and it's
still very difficult for me to lift my head up from the tummy position.
Often only for seconds at a time. Mommy was told to exercise tough love,
but I make it very difficult for her. We have been working on my
transitions, which I did not like, but am slowly getting used to the new
positions.
Mommy relentlessly argued to have my total calories decreased before my diagnosis came in (so I have been eating less for about a month). Since she did this, I am more eager to take rice cereal orally. I had only a few days mixed in where it wasn't interesting enough. I am up to about 20mls of rice cereal taken orally before I start to get grumpy. My swallow therapist was impressed with me clinically, so the next step is to try a different grain cereal (like oat, barley or wheat).
My pediatrician said that she would be challenging me more on my oral skills. So my daddy took this to the extreme and introduced me to "The Sippy Cup". Do not tell my therapist! I'm just lucky that daddy told mommy! Mommy has allowed this for the time being....
Grandma and Mommy have been taking me to the Kidsability pool Wednesday nights (this also gives daddy a night off to himself!).
I have been four times. I started off really cautiously, splashing the top of the water only a few times, my legs were so stiff and I didn't want anyone to see that I was having fun, so I would quickly cover up my smile. However last time I was having the time of my life! Squealing and laughing up a storm! Kicking and splashing with my arms and legs! Grandma is trying to get me to relax on my back, which makes mommy tense with fear! I still do not know what to think about floating on my back....
The last thing to report is what came out of my visit with my pediatrician. Daddy gets to PURPOSELY sleep through my overnight feeding! My pediatrician says that now we know that I don't have some obscure glucose disorder and that I am now big enough to NOT eat overnight! Tonight will be my third night not eating! My mommy finishes feeding me at 11:30pm and my daddy starts feeding me at 6am!
Of course I go to bed around 8-8:30pm.
In the following weeks, I will have a second Kidsability assessment, carnitine levels, progression to a new cereal, and a photoshoot with Emerson!
As of today:
20 days: no Alpha Lipoic Acid
13 days: Carnitine went down to twice a day from 4 times daily
6 days: No Vitamin E
My CoQ10 gets D/C'd on Monday
I will be left on Creatine, Vitamin C, Omeprazole, Domperidone and Carnitine
My Carnitine levels will be checked mid December to see if I can be rid of the med, however a lot of metabolic/mitochondrial disorders have low carnitine levels, and Dr. T just wants to be sure that my levels are normal before I am taken off.
Mommy relentlessly argued to have my total calories decreased before my diagnosis came in (so I have been eating less for about a month). Since she did this, I am more eager to take rice cereal orally. I had only a few days mixed in where it wasn't interesting enough. I am up to about 20mls of rice cereal taken orally before I start to get grumpy. My swallow therapist was impressed with me clinically, so the next step is to try a different grain cereal (like oat, barley or wheat).
My pediatrician said that she would be challenging me more on my oral skills. So my daddy took this to the extreme and introduced me to "The Sippy Cup". Do not tell my therapist! I'm just lucky that daddy told mommy! Mommy has allowed this for the time being....
Grandma and Mommy have been taking me to the Kidsability pool Wednesday nights (this also gives daddy a night off to himself!).
I have been four times. I started off really cautiously, splashing the top of the water only a few times, my legs were so stiff and I didn't want anyone to see that I was having fun, so I would quickly cover up my smile. However last time I was having the time of my life! Squealing and laughing up a storm! Kicking and splashing with my arms and legs! Grandma is trying to get me to relax on my back, which makes mommy tense with fear! I still do not know what to think about floating on my back....
The last thing to report is what came out of my visit with my pediatrician. Daddy gets to PURPOSELY sleep through my overnight feeding! My pediatrician says that now we know that I don't have some obscure glucose disorder and that I am now big enough to NOT eat overnight! Tonight will be my third night not eating! My mommy finishes feeding me at 11:30pm and my daddy starts feeding me at 6am!
Of course I go to bed around 8-8:30pm.
In the following weeks, I will have a second Kidsability assessment, carnitine levels, progression to a new cereal, and a photoshoot with Emerson!
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