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!
Saturday, 26 November 2011
Article
If you want to read the article that was referenced in my previous post
about my disorder and the study that was done please visit the following
link:
http://brain.oxfordjournals.org/content/early/2009/08/31/brain.awp221.full.pdf+html
Also please send your prayers and thoughts on to my buddy Emerson who just went through various metabolic tests at Sick Kids in Toronto.
http://brain.oxfordjournals.org/content/early/2009/08/31/brain.awp221.full.pdf+html
Also please send your prayers and thoughts on to my buddy Emerson who just went through various metabolic tests at Sick Kids in Toronto.
Monday, 14 November 2011
Ethan's Been Diagnosed
Hi All,
Shawn and Leeanne here, after a long 6 and a half months
without answers, we received a long awaited call on Friday from Dr. Mark
Tarnopolsky. Mark told us that Ethan's mtDNA results were in and there
was a diagnosis. He suggested we meet at his clinic Monday morning to
discuss the results.
The weekend was filled with anticipation and wonder. As the calendar pages turned and Monday arrived, we piled into the car and made the all too familiar drive to Hamilton. As we entered the hospital, the corridors were quiet, as it happens today is a hospital holiday. Despite much of the hospital being shut down, Mark had agreed to open his office up for a select group of patients to come in. We were among them.
-- Hey Dad, you know that people would rather here from me, what are you trying to pull here?
Okay Ethan, the keyboard is yours.
Hi All, Ethan here! Where were we. Mark was happy to see me and welcomed us into one of his exam rooms. We were joined by the same medical assistant that had first seen me in the ER and made that daring run across the hospital so many months ago. She was smiling from ear to ear and couldn't believe that I was the same little child.
Mark started by reminding us that I was in a very severe state upon arrival at MacMaster and that at a critical point in the early weeks, a muscle biopsy was taken in order to run a number of genetic tests. The original findings showed I had a severe mitochondrial complex IV deficiency. After a series of follow up muscle studies, one of which has never been performed in Ontario before me, a new diagnosis was made.
The results confirmed that I have a mitochondrial mutation known as "Benign Cytochrome C Oxidase Deficiency Myopathy" or "Reversible Cox Deficiency". The DNA marker that contains the mutation is m.14674 in which a letter T should reside however my DNA has the letter C in it's place. Yes folks I have a 'C' where a 'T' is supposed to be located, and that's what has sent us all on this whirlwind journey.
Wait... did I hear "reversible"? Mark continued by explaining that a study was performed that looked at 17 individuals who were diagnosed around the world with the same disorder. In all cases, the symptoms associated with the disorder included hypotonia (weak muscles), difficulty feeding and breathing in early infancy, and severe lactic acidosis. Of the 17 cases, only one was fatal due to the onset of Pneumonia at 39 days old, the other 16, showed a spontaneous and miraculous change in symptoms beginning between 4 and 20 months of age. In each of the 16 cases, by age 2 the children had made a complete recovery with only mild weakness in the shoulder muscles.
Whoa! That's quite the report! Mark assured my mom and dad that the results in my case were the same. As such, the outcome would also be the same. As many of you know, I have already shown great improvements in the areas of development, blood-work and muscle tone. With this new diagnosis, we know now that we are on a road toward a full recovery.
The plan is now to wean me off my mito-cocktail over the next two months. The first to go is my Alpha-Lapoic Acid! And the rest in the weeks to follow. Mom and Dad are thrilled to see this one go as it only comes in pill form and needs to be finely ground into a powder which usually causes fits of uncontrollable sneezing and sinus congestion.
As the medications are removed, we will monitor my behaviour to make sure there are no adverse reactions. For the time being, we will continue to work at my oral feeding as the expectation is, I will be able to pull out this blasted feeding tube once and for all at some point down the road. As for my development, I will still be behind for awhile but I am expected to catch up with my fellow youngsters between age 2 and 3.
To determine the origin of the genetic mutation, my Mom had to have blood drawn today. Mitochondrial disorders are normally passed on maternally. As many of you are aware, my mom doesn't do well with blood being taken. This time, to her horror, Mark was going to be taking the blood himself as the hospital was closed. Mark commented on her scarce and difficult veins but in the end was able to find one and draw up two samples without incident. Who knew he was better at taking blood than so many of the nurses we've seen before. The results will take time and will let us know if Mom has the same disorder and whether it is active or recessive. Otherwise, rumours of my being a true Xmen may be confirmed.
The news is incredible. It hasn't really even sunk in that this journey will have a happy ending. Thank you all so much more being supportive and uplifting through my troubled start. We'll keep you posted as I continue to progress!
 |
| Getting ready to be diagnosed! |
The weekend was filled with anticipation and wonder. As the calendar pages turned and Monday arrived, we piled into the car and made the all too familiar drive to Hamilton. As we entered the hospital, the corridors were quiet, as it happens today is a hospital holiday. Despite much of the hospital being shut down, Mark had agreed to open his office up for a select group of patients to come in. We were among them.
-- Hey Dad, you know that people would rather here from me, what are you trying to pull here?
Okay Ethan, the keyboard is yours.
Hi All, Ethan here! Where were we. Mark was happy to see me and welcomed us into one of his exam rooms. We were joined by the same medical assistant that had first seen me in the ER and made that daring run across the hospital so many months ago. She was smiling from ear to ear and couldn't believe that I was the same little child.
Mark started by reminding us that I was in a very severe state upon arrival at MacMaster and that at a critical point in the early weeks, a muscle biopsy was taken in order to run a number of genetic tests. The original findings showed I had a severe mitochondrial complex IV deficiency. After a series of follow up muscle studies, one of which has never been performed in Ontario before me, a new diagnosis was made.
The results confirmed that I have a mitochondrial mutation known as "Benign Cytochrome C Oxidase Deficiency Myopathy" or "Reversible Cox Deficiency". The DNA marker that contains the mutation is m.14674 in which a letter T should reside however my DNA has the letter C in it's place. Yes folks I have a 'C' where a 'T' is supposed to be located, and that's what has sent us all on this whirlwind journey.
Wait... did I hear "reversible"? Mark continued by explaining that a study was performed that looked at 17 individuals who were diagnosed around the world with the same disorder. In all cases, the symptoms associated with the disorder included hypotonia (weak muscles), difficulty feeding and breathing in early infancy, and severe lactic acidosis. Of the 17 cases, only one was fatal due to the onset of Pneumonia at 39 days old, the other 16, showed a spontaneous and miraculous change in symptoms beginning between 4 and 20 months of age. In each of the 16 cases, by age 2 the children had made a complete recovery with only mild weakness in the shoulder muscles.
Whoa! That's quite the report! Mark assured my mom and dad that the results in my case were the same. As such, the outcome would also be the same. As many of you know, I have already shown great improvements in the areas of development, blood-work and muscle tone. With this new diagnosis, we know now that we are on a road toward a full recovery.
The plan is now to wean me off my mito-cocktail over the next two months. The first to go is my Alpha-Lapoic Acid! And the rest in the weeks to follow. Mom and Dad are thrilled to see this one go as it only comes in pill form and needs to be finely ground into a powder which usually causes fits of uncontrollable sneezing and sinus congestion.
As the medications are removed, we will monitor my behaviour to make sure there are no adverse reactions. For the time being, we will continue to work at my oral feeding as the expectation is, I will be able to pull out this blasted feeding tube once and for all at some point down the road. As for my development, I will still be behind for awhile but I am expected to catch up with my fellow youngsters between age 2 and 3.
To determine the origin of the genetic mutation, my Mom had to have blood drawn today. Mitochondrial disorders are normally passed on maternally. As many of you are aware, my mom doesn't do well with blood being taken. This time, to her horror, Mark was going to be taking the blood himself as the hospital was closed. Mark commented on her scarce and difficult veins but in the end was able to find one and draw up two samples without incident. Who knew he was better at taking blood than so many of the nurses we've seen before. The results will take time and will let us know if Mom has the same disorder and whether it is active or recessive. Otherwise, rumours of my being a true Xmen may be confirmed.
The news is incredible. It hasn't really even sunk in that this journey will have a happy ending. Thank you all so much more being supportive and uplifting through my troubled start. We'll keep you posted as I continue to progress!
Saturday, 5 November 2011
Mish-Mash Ethan Style
I would like to take the opportunity to thank everyone that is still
following my progress on this site. For every one that has been with me
ever since my first post, and for all the new people I have met along
the way. It has been an emotional journey, full of medical jargon, weird
tests and unclear results. To know that people would take time out of a
busy day to read up to find out how I am doing fills my heart. Thank
you so much for your continued strength and prayers to get me through
everyday.
My swallow study results came back. The study showed that I am still pooling liquid in my valleculae which then spilled into my periform sinuses. It showed that even with a small amount of liquid I do a complicated set of mathematical equations and push a certain amount back and swallow multiple times to clear the liquid. However during this study there were no laryngeal penetration or tracheal aspiration.
The plan is to give me "thin puree" (rice cereal) on a spoon to get me used to texture, utensils, and practice so my mouth is more organized. It is still deemed "unsafe" for any oral feeding as I am still at risk for aspiration, however I haven't got sick or developed pneumonia from my trials before, so this is my reward. My mommy, grandma and daddy have been very patient with me as I have gotten very good at protecting my mouth and tongue. I don't mind the taste or texture once it's in my mouth however I haven't come to understand the object/food relationship. I just don't want anything near my mouth that I can't control.
My mommy and grandma took me to get my 6 month eye check up at my daddy's optometrist office. Since it may turn out that I have a mitochondrial disorder it is very important for the doctors to keep an 'eye' on me as eye disorders are a common symptom of mitochondrial myopathy. I was checked out by 2 doctors to make sure nothing was abnormal. I have medically and cosmetically perfect eyes... so far.. I will need to be rechecked in 6 months rather than the standard 1 year.
Mommy took me to see the Grand River Hospital outpatient dietician to get me weighed as I have been still increasing quickly in size. I was weighed in at 8.57kg which translates to 18g / day over the past 2 weeks. Before we change anything about my feeding I will be weighed again next Friday as I am starting to slow down a bit. We think that it is due to my pukes every morning as my parents haven't been replacing what I lost every day. If I'm still gaining over the norm we will need to adjust my feeds. This dietician believes that my morning puking episodes are attributed to my reflux, as it's not uncommon for reflux victims to puke up mucus every morning. Ewww yay reflux!
This past Wednesday night my mommy and grandma took me swimming for the very first time! Kidsability has a therapuetic pool at their Waterloo location. It is kept at 92 degrees and can hold a maximum of 20 people. I was very busy observing EVERYTHING, in, around and above the pool to notice that I was actually in a pool. I wiggled my legs and splashed a few times, all in all I would say I did very well for my first time! We stayed in for 35 minutes until my mommy said it was time to get out because her hands were getting wrinkly! I have added a few pictures to my photos!
Lastly, I was assessed by infant development on Friday. They do not do percentiles or percentages for 6 months. There are 6 basic yes or no questions in each category. Scored 10 points for a yes and 0 points for a no, 5 points for sometimes.
Here's how I stacked up at my assessment:
Communication: 50/60
Gross Motor Skills: (control of the large muscles of the body) 25/60
Fine Motor Skills: (control the smaller muscles of the body) 60/60
Problem Solving: 60/60
Personal-Social skills: 50/60
My next assessment will be done when I am 8 months old.
I would also like to thank my grandma who has given my parents the opportunity to go out for dinner sans me twice in 2 weeks! It's only been a few hours but they greatly appreciate the time to themselves.
My mommy wants me to add that she is very proud of my sitting progress. I am considered ahead! Me Ethan! Ahead on something! I have been sitting propped on my arms for a while now and have just started to make the adjustment to sitting by myself with my arms free shaking a toy! A few more days and I'll be there!
My daddy wants to mention that as of right this minute I seem to understand "High Five" and I smack his hand. Or maybe it's just because I have this hand in front of my face!
My swallow study results came back. The study showed that I am still pooling liquid in my valleculae which then spilled into my periform sinuses. It showed that even with a small amount of liquid I do a complicated set of mathematical equations and push a certain amount back and swallow multiple times to clear the liquid. However during this study there were no laryngeal penetration or tracheal aspiration.
The plan is to give me "thin puree" (rice cereal) on a spoon to get me used to texture, utensils, and practice so my mouth is more organized. It is still deemed "unsafe" for any oral feeding as I am still at risk for aspiration, however I haven't got sick or developed pneumonia from my trials before, so this is my reward. My mommy, grandma and daddy have been very patient with me as I have gotten very good at protecting my mouth and tongue. I don't mind the taste or texture once it's in my mouth however I haven't come to understand the object/food relationship. I just don't want anything near my mouth that I can't control.
My mommy and grandma took me to get my 6 month eye check up at my daddy's optometrist office. Since it may turn out that I have a mitochondrial disorder it is very important for the doctors to keep an 'eye' on me as eye disorders are a common symptom of mitochondrial myopathy. I was checked out by 2 doctors to make sure nothing was abnormal. I have medically and cosmetically perfect eyes... so far.. I will need to be rechecked in 6 months rather than the standard 1 year.
Mommy took me to see the Grand River Hospital outpatient dietician to get me weighed as I have been still increasing quickly in size. I was weighed in at 8.57kg which translates to 18g / day over the past 2 weeks. Before we change anything about my feeding I will be weighed again next Friday as I am starting to slow down a bit. We think that it is due to my pukes every morning as my parents haven't been replacing what I lost every day. If I'm still gaining over the norm we will need to adjust my feeds. This dietician believes that my morning puking episodes are attributed to my reflux, as it's not uncommon for reflux victims to puke up mucus every morning. Ewww yay reflux!
This past Wednesday night my mommy and grandma took me swimming for the very first time! Kidsability has a therapuetic pool at their Waterloo location. It is kept at 92 degrees and can hold a maximum of 20 people. I was very busy observing EVERYTHING, in, around and above the pool to notice that I was actually in a pool. I wiggled my legs and splashed a few times, all in all I would say I did very well for my first time! We stayed in for 35 minutes until my mommy said it was time to get out because her hands were getting wrinkly! I have added a few pictures to my photos!
Lastly, I was assessed by infant development on Friday. They do not do percentiles or percentages for 6 months. There are 6 basic yes or no questions in each category. Scored 10 points for a yes and 0 points for a no, 5 points for sometimes.
Here's how I stacked up at my assessment:
Communication: 50/60
Gross Motor Skills: (control of the large muscles of the body) 25/60
Fine Motor Skills: (control the smaller muscles of the body) 60/60
Problem Solving: 60/60
Personal-Social skills: 50/60
My next assessment will be done when I am 8 months old.
I would also like to thank my grandma who has given my parents the opportunity to go out for dinner sans me twice in 2 weeks! It's only been a few hours but they greatly appreciate the time to themselves.
My mommy wants me to add that she is very proud of my sitting progress. I am considered ahead! Me Ethan! Ahead on something! I have been sitting propped on my arms for a while now and have just started to make the adjustment to sitting by myself with my arms free shaking a toy! A few more days and I'll be there!
My daddy wants to mention that as of right this minute I seem to understand "High Five" and I smack his hand. Or maybe it's just because I have this hand in front of my face!
Tuesday, 1 November 2011
Halloween Update
I am still puking every morning at my 6am feeding. Mommy was worried about me as I am being fed less than my required amount of calories AND I am puking up. As you remember my doctor believes that it is due to my increased calorie count that I am stabilizing. So less calories means yucky blood chemistry numbers.
Mommy took me to the GRH outpatient clinic to get my blood work last Monday. The nurses informed us that they can not do scalp veins any more as I am older and they start to disappear. So here comes Mr. Tourniquet! The first lady couldn't find any veins, so they called up a second lady. She has done me before without too much horror, albeit when I was much littler than I am now. She found ONE vein in my arms. ONE, well here goes all or nothing.
Results:
pH: 7.37
Bicarb: 23
Lac: 1.8
Weight: 8.39 kg
Hmmm... what? I don't get it either folks! Mommy thinks that maybe I am getting way too much food in the first place because I've been gaining like a beast! I am supposed to be gaining 10-13 g / day and the last 2 weeks I've gained 27g / day. Phone call to my dietician.
Hmmmm what? She says that I'm actually taking less now than an infant my age is supposed to and I'm still gaining twice the amount. Mommy's taking me in to be weighed again on Wednesday. It's all mathematics and science....
Daddy called Mac and found out that my ECHO results were normal.
We're also still waiting for my Barium Swallow Test results to be sent to us. Hopefully they will arrive in the mail this week. In the meantime as a reward for not getting pneumonia , I have started on a few spoons a day of rice cereal. Apparently the results of the swallow test were still not great, however the consistency of rice cereal has been deemed the lesser of the evils for me.
Infant Development will be assessing me on Friday to see where my development percentile is for 6 months. Cathy my physio did a preliminary assessment of just my gross motor skills last week and scored me at just under the 25th percentile. We'll see how my other skills stack up!
Check out my Halloween costumes!
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| I did not like this one! |
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| So I wore my pajamas instead! |
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