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! |
Friday 14 October 2011
ECHO #2
Yesterday morning was my follow up ECHO. As you are aware the intention
was to sedate me. I would need to go to the OR to receive an IV line as
it is hard to find veins on me now, and also I was to be admitted in the
hospital for at least an overnight stay to monitor my blood chemistry,
as I do not do well on IV fluids. However the cardiologist thought that
all this was unnecessary since I wasn't even going in for surgery, and
informed my mommy that she will try to conduct the ECHO without sedating
me. This will be particularly tricky as there are 2 main reasons why
they use sedation for this procedure. The patient needs to be very
still during an ECHO to get accurate results, and last time I checked, I
don't understand the "stay still" command yet.
Mommy's plan was to try to keep me up for the car ride to Mac, and therefore I would sleep during the hour long procedure. Grandma was supposed to visit my GreatGrandma that day, but she loves me so much she offered to come along to make sure I was fed and to keep me awake as mommy had to drive.
As soon as the wheels started to roll on the car I was out like a light and didn't wake up until I could see the McMaster sign on the hospital building. Was there a plan B? Unfortunately not.
The lady that was conducting the ECHO on me, was named Rose, she weighed me in at 8.12kg and kept calling me "big boy" to my mommy's dismay. She commented on my last ECHO that the report indicated "baby cried through the entire procedure". Great.....
I was laid down on the hospital
bed, she put a few "purple heart" stickers on me to monitor my vitals
and squirted some cold sticky gel on me. She calmed me by telling me it
was just like having a massage and that people usually pay big bucks.
She let me listen to my heart beat a few times and I got to look at the
screen and view my heart, which was pretty awesome.
I was a very
good boy and laid as still as I could for almost the whole procedure, I
only got fussy for the last 5 minutes. Rose said I was done and that
she will give the information and pictures to the main cardiologist who
looks at the results that day and submits a report to my doctors in 7-10
days.
Mommy's plan was to try to keep me up for the car ride to Mac, and therefore I would sleep during the hour long procedure. Grandma was supposed to visit my GreatGrandma that day, but she loves me so much she offered to come along to make sure I was fed and to keep me awake as mommy had to drive.
As soon as the wheels started to roll on the car I was out like a light and didn't wake up until I could see the McMaster sign on the hospital building. Was there a plan B? Unfortunately not.
The lady that was conducting the ECHO on me, was named Rose, she weighed me in at 8.12kg and kept calling me "big boy" to my mommy's dismay. She commented on my last ECHO that the report indicated "baby cried through the entire procedure". Great.....
I was laid down on the hospital
bed, she put a few "purple heart" stickers on me to monitor my vitals
and squirted some cold sticky gel on me. She calmed me by telling me it
was just like having a massage and that people usually pay big bucks.
She let me listen to my heart beat a few times and I got to look at the
screen and view my heart, which was pretty awesome.
Tuesday 4 October 2011
Mac
 |
| I fit a bit better this time |
Enter Friday..... I was strapped into the "drop zone" chair for the second time in my life. Mommy was instructed to put one of the bottles in my mouth. It felt foreign and the barium inside was chaulky and horrible. I didn't drink any thing. So they moved on to the syringe. Still horrible, I spit everything out and I started to scream. They moved to pureed formula and it was equally gross with the barium in it. Kate came out and told mommy and I that the test was done. They were not sure what they saw, as there was minimal data, however Kate was not hopeful in what she thought she saw. She told us that she would review the video again and come up with a plan that would be safe for me and let my therapists know how to proceed.
My parents and I received an invitation for my buddy Emerson's dedication which was being held on Sunday. We joined them in Grimsby at their family church for the ceremony. His parents gave a heart filled speech about Emer and also included me and my parents in their prayers. My parents teared up as they knew this day was supposed to be special for Emerson, yet they graciously included our family. We finally got to meet all the people at the church that have been endlessly praying for me and my parents. It was so nice to meet you all and we continue to thank you for your thoughts and prayers.
We were invited back to Heather and Paul Robertsons to view their "Medical Oasis" or othewise known as "The Roberson's Medical Facility". The Robertsons are a family we met through the Rutledges at Mac. They have 2 children with mitochondrial disorder and Heather also deals with this disorder as well. They have been a support and endless knowledge for us, we would be even more lost without their guidance. They bestowed upon us an early thanksgiving gift. Boxes of syringes and medical supplies! Who would have thought medical supplies could elicit such excitement!
We headed to the Rutledge palace for company and pizza. We have only known the Rutledges for a short 5 months, yet we feel like we have become part of their family. We have been down winding yet parallel roads. We have been shoulders for each other through pain and sadness. We have been each others light when all that remained in the dark of the 2 am hospital room was a glimmer of hope. We have shared meals and games of cards in the midst of all the medical mayhem we were put through during our time at Mac. We share the same worries and uncertainties. We know they just get it without having to speak a word.
Monday we headed yet again to Mac, this time for a pre-op assessment with an anesthetist. Mariya has ordered a follow up ECHO. I received my first echo at 6 days old and everything was normal. However, if I do have a mitochondrial disorder my heart may have become enlarged since last time. My parents are worried that I will have to be sedated as cardiology has ordered a sedated ECHO since I am an infant. My parents are extremely worried as I do not do well with IV fluids, so the anesthetist will recommend that I am admitted for at least one day for observation after my ECHO. This information did nothing to ease my parents concerns....
We met Mariya and Amy for my metabolic clinic.
She explained my case to her student resident and disclosed my admission blood work numbers that had caused her to run me through the hospital full speed to the ER.
pH:7.00
Lac: 12.6
Now many of you should remember me mentioning in a previous post that Mariya explained that with a pH of 7.0 cells shut down and do not come back from being that acidic. This is why she told my parents that if I hadn't been at the hospital on that Friday I would have passed away in my crib Saturday morning. She went on to explain that for weeks I did not respond to any treatments and my prognosis looked grim, however one day I just turned around for what seemed like no apparent reason. For this I am her love.
Mariya was upset to find out that cardiology planned to sedate me. She said that she didn't want the mask to go over me, that it wasn't necessary. She said that hopefully she can call in a favour and see if the cardiologist will either conduct it without sedation, as she is just looking for the enlargement and doesn't need to be complex, or if there is something they can give me so I can just sleep for a little bit and not knock me out. So we'll see what she can strum up. She also said that she doesn't want to keep poking me unnecessarily, so my blood work has been changed to "whenever my parents or doctor think it's necessary". I love her more and more every time I see her! She lectured my parents to make sure they make time for just the two of them, she said she doesn't care how they do it, but they must. They explained that it's hard to get care for me as they can't just call up the neighbourhood baby sitter.
Mariya was watching me play with my daddy, and said she was happy with my progress and I will come back to see her before she goes on christmas vacation. She was still saddened that I did not smile at her, however mommy explained that I am starting to be fearful of strangers. Amy said that it was good and it was what I am supposed to do at my age.
The skin tests are not back, as they had to thaw more of my skin to confirm the "unusual results" the lab thinks they found in the initial testing. Mariya is hoping they tell her something soon, and will let us know as soon as they come back.
We are really glad to have her as my doctor, she has been such an advocate for me and her ability to act quickly and think outside of the medical box has saved my life numerous times.
Saturday 24 September 2011
Blood Work
I had been puking since last Sunday, but hadn't been showing any other
symptoms. So mommy called my pediatrician on Wednesday. The Dr. told her
to take me to the hospital outpatient clinic where an on-call
pediatrician would see me. So along with grandma we packed up and headed
out.
Surprise, surprise! Blood work had been ordered! 3 nurses and 40 minutes later I was screaming my head off, turning red and sweaty, and I was trying to get mommy to save me, but nothing I did could make her. The nurses got nothing. I was finally picked up and given to mommy so I could calm down, I was trying but they kept checking my head for veins. They then tried looking for veins in my arms and foot, I had 3 tourniquets on me and 3 heating pads, all the while I just kept screaming I was so scared! They called an IV nurse who apparently is "really good", however she's the one who stabbed me multiple times before and didn't get anything but me screaming bloody murder.
She used the touniquet on my arms and legs, at this point I was beside myself with fear, my arms and legs were bruised and purple, and my head hurt. Suddenly I heard "Can I just take him home!" My mommy. The IV nurse looked at her and said "So you're refusing then!?" and mommy looked at her and said "I guess I am." The IV nurse got in such a huff and yelled at the other nurse "So I can leave then!" and then had some choice words outside with the nurse about my mommy. I don't care what they said, I just get to get away from this massacre.
The on-call pediatrician came in and said "I hear that you want to leave". Mommy explained that since I've been screaming for 50 minutes and not calming down the results will be elevated anyway, and won't determine if they are high because I am sick or because I am worked up, and that we will try again tomorrow. He said "I guess you're not too concerned about him then." I looked at mommy and could see the rage in her eyes, this man is lucky he was scrunched as far away from us as possible in the room, or he would have been put through the wall. He then tried to crack my undiagnosed case, by asking if my parents were healthy? were they related? Oh yes doctor... I think you got it! Sorry I get my sarcasm from mommy... Of course they are not related and the answer hasn't changed from the first million times they have been asked.
Enter Friday..... (my 5 month birthday)
2
pokes later, although they both fell out causing my blood to spurt
everywhere, they had enough for my lactate, but not enough for the blood
gases, but ran them anyway
pH: 7.52
bicarb: 19
(These results don't make sense)
Lac: 1.8 (my best since I've been home!)
Mommy used some of her fantastic powers of deduction and came to the conclusion that I am puking due to my omeprozole suspension. Turns out the pharmacy used generic tablets instead of my regular capsules.. Since she got them to make it again on Thursday I haven't puked! Here's hoping that that was the cause!
Mariya informed mommy that the lab is redoing my skin test. Who knows how long this will take. Mariya said that it's been difficult to get the results from them... meaning they will tell her nothing.
I think the results are:
1) something they haven't found before
or
2) Serious
or
3) both
However I seem to be doing well considering my history. We're hoping they have some sort of explanation soon.
Surprise, surprise! Blood work had been ordered! 3 nurses and 40 minutes later I was screaming my head off, turning red and sweaty, and I was trying to get mommy to save me, but nothing I did could make her. The nurses got nothing. I was finally picked up and given to mommy so I could calm down, I was trying but they kept checking my head for veins. They then tried looking for veins in my arms and foot, I had 3 tourniquets on me and 3 heating pads, all the while I just kept screaming I was so scared! They called an IV nurse who apparently is "really good", however she's the one who stabbed me multiple times before and didn't get anything but me screaming bloody murder.
She used the touniquet on my arms and legs, at this point I was beside myself with fear, my arms and legs were bruised and purple, and my head hurt. Suddenly I heard "Can I just take him home!" My mommy. The IV nurse looked at her and said "So you're refusing then!?" and mommy looked at her and said "I guess I am." The IV nurse got in such a huff and yelled at the other nurse "So I can leave then!" and then had some choice words outside with the nurse about my mommy. I don't care what they said, I just get to get away from this massacre.
The on-call pediatrician came in and said "I hear that you want to leave". Mommy explained that since I've been screaming for 50 minutes and not calming down the results will be elevated anyway, and won't determine if they are high because I am sick or because I am worked up, and that we will try again tomorrow. He said "I guess you're not too concerned about him then." I looked at mommy and could see the rage in her eyes, this man is lucky he was scrunched as far away from us as possible in the room, or he would have been put through the wall. He then tried to crack my undiagnosed case, by asking if my parents were healthy? were they related? Oh yes doctor... I think you got it! Sorry I get my sarcasm from mommy... Of course they are not related and the answer hasn't changed from the first million times they have been asked.
Enter Friday..... (my 5 month birthday)
 |
| My head pokes! |
pH: 7.52
bicarb: 19
(These results don't make sense)
Lac: 1.8 (my best since I've been home!)
Mommy used some of her fantastic powers of deduction and came to the conclusion that I am puking due to my omeprozole suspension. Turns out the pharmacy used generic tablets instead of my regular capsules.. Since she got them to make it again on Thursday I haven't puked! Here's hoping that that was the cause!
Mariya informed mommy that the lab is redoing my skin test. Who knows how long this will take. Mariya said that it's been difficult to get the results from them... meaning they will tell her nothing.
I think the results are:
1) something they haven't found before
or
2) Serious
or
3) both
However I seem to be doing well considering my history. We're hoping they have some sort of explanation soon.
Thursday 22 September 2011
Dr. T and the Baby Ethan Project
Daddy took the day off and joined mommy and me for my appointment with
Dr. Tarnopolsky at Mac. We got underway with plenty of time to spare,
unfortunately enroute I decided to have my morning poopies. I was thus
changed in the trunk of our volkswagen just off of highway 6.
Soon we arrived at Dr. Taropolsky's office where we sat down to talk about my progress. Dr. T took a few moments to assess me, played with my arms, checked my reflexes and my head control. He said my reflexes were good and my head control was better. He'd planned to set up testing for my nuclear DNA however the funding takes 7 months for approval so he had cancelled this and went with the mtDNA test instead. The results are not back as of yet, but should be within the next couple of weeks.
Dr. T. believes that I show symptoms of reversible COX deficiency. As my preliminary mitochondria test showed that I am only 8% efficient in the 4th stage. He informed us that any one that is that severe should die and not stabilize like I have. However, this particular phenomenon has only ever been recorded twice in the history of medicine. Dr. T informed us that I will likely undergo another muscle biopsy in a years time to see if the percentage has increased.
Mommy asked about the glycogen that was found in my muscle, he said that it isn't unheard of that when the body starts to shut down it starts to store glycogen so it would make sense that there was an increased amount in me. He also mentioned that my symptoms are not consistent with glycogen storage disease. He increased my medicine volumes to coincide with my weight gain. He has taken me off Vitamin C (however my parents think they will keep me on it as it will be good for my immune system). He has also eliminated riboflavin as it is really only good for complex 1. Many of you that have been following me from the beginning know of my turbulent relationship with this vitamin and I am overjoyed to be rid of it! However, he has added vitamin E to my mix, and mommy tells me that it tastes worse than the riboflavin, which she didn't think could ever be possible.
Dr. T cautioned my parents about my weight gain, he is concerned that because I am considered low tone it will be harder for me to move my muscles. This is in direct conflict with my metabolics team who want me to pack on the pounds.
We then decided to visit some old friends at the general peds ward. We ran into my old OT Kate, who told us that she will get in touch with my current speech therapist about trying me on 5mls of formula from a bottle. She thinks its absolutely crazy to keep putting 0.01mls in my mouth... it won't get me too far. We saw our resident from the ICU, Serengy, and my nurses Deb and Janine who were all surprised to see me.
We could not leave until we visited the genetics department so I could see Mariya! She was happy to see me and couldn't wait for a cuddle! She informed us that my skin biopsy results were not back yet. However, the lab had found something interesting in the skin cells, they could not release the results to her yet as apparently they do not understand the results as they don't make sense.... They are not sure if it is due to how the skin cells were cultured or if it is in fact my cells. They are going to hold another meeting and decide what the results mean and possibly ask for another skin biopsy. We should know either way by the time we go to her clinic. Mariya does not believe that I have a mitochondrial disorder and mommy just thinks that I could be an X-Man.
We decided to proceed on to the Welland Staples store to see my friends Dayna and Nicola. They were very excited to meet me in the flesh and had a big present full of soft blankets and stuffies for me. They along with Tish have been working on "The Baby Ethan Project". The project will invite Staples stores to run dress down days for each weekend in October. The purpose of the days will be to spread my story throughout the Staples family and to collect some money to help support my medications, syringes, and other hospital costs. I can't say thank you enough for their efforts, it truly is overwhelming to have their support.
We stayed in the store and played in the copy centre for an hour or so until it was time to eat. We enjoyed the comforts of the store lunchroom and met some more new friends before hopping back in the car and high-tailing it home.
Soon we arrived at Dr. Taropolsky's office where we sat down to talk about my progress. Dr. T took a few moments to assess me, played with my arms, checked my reflexes and my head control. He said my reflexes were good and my head control was better. He'd planned to set up testing for my nuclear DNA however the funding takes 7 months for approval so he had cancelled this and went with the mtDNA test instead. The results are not back as of yet, but should be within the next couple of weeks.
Dr. T. believes that I show symptoms of reversible COX deficiency. As my preliminary mitochondria test showed that I am only 8% efficient in the 4th stage. He informed us that any one that is that severe should die and not stabilize like I have. However, this particular phenomenon has only ever been recorded twice in the history of medicine. Dr. T informed us that I will likely undergo another muscle biopsy in a years time to see if the percentage has increased.
Mommy asked about the glycogen that was found in my muscle, he said that it isn't unheard of that when the body starts to shut down it starts to store glycogen so it would make sense that there was an increased amount in me. He also mentioned that my symptoms are not consistent with glycogen storage disease. He increased my medicine volumes to coincide with my weight gain. He has taken me off Vitamin C (however my parents think they will keep me on it as it will be good for my immune system). He has also eliminated riboflavin as it is really only good for complex 1. Many of you that have been following me from the beginning know of my turbulent relationship with this vitamin and I am overjoyed to be rid of it! However, he has added vitamin E to my mix, and mommy tells me that it tastes worse than the riboflavin, which she didn't think could ever be possible.
Dr. T cautioned my parents about my weight gain, he is concerned that because I am considered low tone it will be harder for me to move my muscles. This is in direct conflict with my metabolics team who want me to pack on the pounds.
We then decided to visit some old friends at the general peds ward. We ran into my old OT Kate, who told us that she will get in touch with my current speech therapist about trying me on 5mls of formula from a bottle. She thinks its absolutely crazy to keep putting 0.01mls in my mouth... it won't get me too far. We saw our resident from the ICU, Serengy, and my nurses Deb and Janine who were all surprised to see me.
We could not leave until we visited the genetics department so I could see Mariya! She was happy to see me and couldn't wait for a cuddle! She informed us that my skin biopsy results were not back yet. However, the lab had found something interesting in the skin cells, they could not release the results to her yet as apparently they do not understand the results as they don't make sense.... They are not sure if it is due to how the skin cells were cultured or if it is in fact my cells. They are going to hold another meeting and decide what the results mean and possibly ask for another skin biopsy. We should know either way by the time we go to her clinic. Mariya does not believe that I have a mitochondrial disorder and mommy just thinks that I could be an X-Man.
We decided to proceed on to the Welland Staples store to see my friends Dayna and Nicola. They were very excited to meet me in the flesh and had a big present full of soft blankets and stuffies for me. They along with Tish have been working on "The Baby Ethan Project". The project will invite Staples stores to run dress down days for each weekend in October. The purpose of the days will be to spread my story throughout the Staples family and to collect some money to help support my medications, syringes, and other hospital costs. I can't say thank you enough for their efforts, it truly is overwhelming to have their support.
We stayed in the store and played in the copy centre for an hour or so until it was time to eat. We enjoyed the comforts of the store lunchroom and met some more new friends before hopping back in the car and high-tailing it home.
Sunday 11 September 2011
this Morning I Cried...
A poem for Ethan.
This morning as I look upon you,
I do not look with sadness but with overwhelming joy.
Despite this I cry.
This morning as I look, you glance back at me,
I see into you, and know that you see back into me.
I see the strength we give each other.
Despite this I cry.
This morning as I look upon you, I marvel,
what a curious boy you are, what an innocent face you have,
what a love our family will share.
Despite this I cry.
This morning as I look upon you, I laugh,
the smiles and giggles we have shared,
I remember them all, and I know this is only the beginning,
Despite this I cry.
This morning as I look, I lay a hand upon you,
you look at me, we don't speak, we simply smile.
Because of this I cry.
I don't cry out of worry, fear, sadness, despair, uncertainty.
I don't cry for the future, or for the hardships in our past.
As I look upon you again, you reach out for a toy,
I do not look with sadness but with overwhelming joy.
Because of this, Ethan, my son, I will not cry.
With all the love a parent can give,
Your Father
This morning as I look upon you,
I do not look with sadness but with overwhelming joy.
Despite this I cry.
This morning as I look, you glance back at me,
I see into you, and know that you see back into me.
I see the strength we give each other.
Despite this I cry.
This morning as I look upon you, I marvel,
what a curious boy you are, what an innocent face you have,
what a love our family will share.
Despite this I cry.
This morning as I look upon you, I laugh,
the smiles and giggles we have shared,
I remember them all, and I know this is only the beginning,
Despite this I cry.
This morning as I look, I lay a hand upon you,
you look at me, we don't speak, we simply smile.
Because of this I cry.
I don't cry out of worry, fear, sadness, despair, uncertainty.
I don't cry for the future, or for the hardships in our past.
As I look upon you again, you reach out for a toy,
I do not look with sadness but with overwhelming joy.
Because of this, Ethan, my son, I will not cry.
With all the love a parent can give,
Your Father
Wednesday 7 September 2011
Kidsability
 |
| My new hat and boots from Grandma,Uncle Brian and Paige |
We were greeted by Kayla the social worker that has been appointed to my case. She took us to a small room which had one big gym mat! I was a little overwhelmed as mommy put me down to "play". I had new surroundings and toys to look at and there were 3 new people. The PT, Pam, the OT Lori and Kayla. I was so disoriented that I started crying until Mommy picked me up and put me on her lap so I could look at each person individually to size them up and try to figure out what they were all doing staring at me. Mommy and Grandma continued to answer their questions about my lengthy history and what I have been doing with my other therapists. The therapists continuously made the comment on how alert, observant and perceptive I am. Pam pointed out that my head is a very nice shape! I was put down on the mat again were Pam and Lori played with me, rattles were placed in my hands and this strange long tube was making noise, after a bit I started to get a little agitated! Then I was placed on my tummy and that was it! I screamed and screamed and screamed. Mommy was heating up my food so Grandma tried to calm me down, but I was having nothing of it. I screamed and screamed, my face was turning red and I wouldn't stop. I was passed to Mommy who quickly excused us and walked down the hall singing Katy Perry, I immediately calmed down... I just wanted to hear California Girls.
After I had calmed down I was placed in a yellow bumbo seat and the therapists continued with their assessment.
Pam mentioned that my motor skills were consistent with a 2 month old (which we knew already with Dave's assessment of the 10-25th percentile from Infant Development). However, she couldn't get over how observant and alert I am. Lori agreed with mommy and grandma saying my arms are weak but once someone places my arm my hands and fingers are actually quite good.
Pam also said that I would likely be the kid that plans strategically on how I am going to do things, she said that this will be a good thing as it will help me when trying to learn gross motor skills.
I freaked after a while sitting in the Bumbo and mommy grabbed me and rocked me to sleep while feeding me. The conversation continued. I will be placed near the top of the waiting list as "high priority" and my mommy will be called with an estimation of the time it will take to get me in to the facility. Grandma wants to take me to the swimming pool that is in the Waterloo facility, however they were unsure if we can use the facilities there.
In other news:
- Mommy got a quotation for my syringes $2500 a month! I will need to get a full time job just to pay for them! Looks like we will need to continue to wash and reuse them, however we can get it down to $1250 a month by reusing them. Ahhh syringes!!
Sunday 4 September 2011
A mommy's worry
When I was contemplating having a baby, everyone told me
babies are a lot of work to look after and that life as I knew it would not be
the same. I joked around that date
nights and days that we would chill with friends playing video games would be
over. When I found out I was pregnant, I
was terrified. I had figured it would take more time,
and the reality hit me like a brick wall. How was I supposed to become
someone's mom in just 9 short months? People would talk to me about parenting
and what I should do when... That there is no better feeling than to be a new
parent. What they neglected to tell me
was, what do I do when my baby is terminally ill? What do I do when the doctors
tell me that when I finally leave the hospital, my baby will not be with me?
What do I do when the doctors tell me my baby will die within a few days? What
to decide when I am asked whether or not I want my baby to have life saving
procedures when he deteriorates? These are the things that I should have been
told.
No parent should be in that situation yet I find myself here. Luckily my baby is stronger than I am, and gave the middle finger to me and his doctors and somehow found his way home. The feeling of not knowing what is causing him to be this sick, trying to answer people when they ask me why the doctors haven't figured it out yet, what's wrong with them? His case is not so black and white. When I was in school I learned enough of biochemistry enough to pass the exam and then promptly forgot what I had so madly tried to cram in my brain because I thought I would never use it after that. Maybe I should have had a biochemistry degree instead of a sociology one. Oddly enough it would have been more useful in my everyday life, funny how that happens.
I worry that he will not get to enjoy the foods that we have taken for granted. I feel guilty when I sneak a drop of Similac Advance on his tongue so he can taste what I am pushing into his belly. I worry that he will never know the feeling of being hungry, and the satisfaction of finally getting to bit into food, feeling it roll down his throat and always entering into his digestive tube on the way to his tummy. I worry that he will never feel how refreshing it is to drink a gallon of water on a hot humid day. I worry that I will be in the hospital with him getting his tummy tube replaced after he's ripped it out. I worry what time of day that will be, before a feed, during a feed, after a feed.. how many calories will he have, will he have enough so that his body doesn't shut down. I worry that he'll never sit, walk, roll, hold his head up, run, or jump. I worry that he won't be able to learn, talk, see or hear. I worry that one day one of his organs may just explode. I worry if he gets a cold, will it cause him to go to the emergency room, or worse. I worry that he will choke just laying on his play mat. I worry that he feels my fears for him. Most of all I worry he won't wake up.
Before I go to bed every night I kiss him tonight and whisper in his ear, "Sweet dreams my little one, please wake up in the morning". I toss and turn until the morning when my husband walks into the room holding our son, I frantically look to my son's eyes, they are open, he is saved for another day.
-Ethan's mommy
No parent should be in that situation yet I find myself here. Luckily my baby is stronger than I am, and gave the middle finger to me and his doctors and somehow found his way home. The feeling of not knowing what is causing him to be this sick, trying to answer people when they ask me why the doctors haven't figured it out yet, what's wrong with them? His case is not so black and white. When I was in school I learned enough of biochemistry enough to pass the exam and then promptly forgot what I had so madly tried to cram in my brain because I thought I would never use it after that. Maybe I should have had a biochemistry degree instead of a sociology one. Oddly enough it would have been more useful in my everyday life, funny how that happens.
I worry that he will not get to enjoy the foods that we have taken for granted. I feel guilty when I sneak a drop of Similac Advance on his tongue so he can taste what I am pushing into his belly. I worry that he will never know the feeling of being hungry, and the satisfaction of finally getting to bit into food, feeling it roll down his throat and always entering into his digestive tube on the way to his tummy. I worry that he will never feel how refreshing it is to drink a gallon of water on a hot humid day. I worry that I will be in the hospital with him getting his tummy tube replaced after he's ripped it out. I worry what time of day that will be, before a feed, during a feed, after a feed.. how many calories will he have, will he have enough so that his body doesn't shut down. I worry that he'll never sit, walk, roll, hold his head up, run, or jump. I worry that he won't be able to learn, talk, see or hear. I worry that one day one of his organs may just explode. I worry if he gets a cold, will it cause him to go to the emergency room, or worse. I worry that he will choke just laying on his play mat. I worry that he feels my fears for him. Most of all I worry he won't wake up.
Before I go to bed every night I kiss him tonight and whisper in his ear, "Sweet dreams my little one, please wake up in the morning". I toss and turn until the morning when my husband walks into the room holding our son, I frantically look to my son's eyes, they are open, he is saved for another day.
-Ethan's mommy
Friday 2 September 2011
Infant Development
Mommy, Grandma and I had our first appointment with Dave from Infant Development.
I was having a late nap when he dropped in to see me. In the meantime he had mommy fill in an assessment that asked questions pertaining to the development of a 4 month old. My overall assessment was ranked at the 10-25th percentile.
I woke up and I was put on a mat so that Dave could observe my "play" and he ticked off the positions I was doing on a chart. (Prone, supine and side lying). This gives him a baseline of what I am doing presently in those positions. He brought a bag of toys and took out a weird horse ring with a turny string to monitor my tracking skills. He let me hold onto miniature maracas, I liked these as finally I could hold onto something in my small.. yet manly hands!
Dave will come by once a week, however next week he is fully booked so I will see him in 2 weeks.
My feeds are now up to 140 mls every 4 hours. I am spitting up on every feed though, so we think my anti-reflux meds need to be increased, however my pediatrician is off until Tuesday! I am trying to make it up to my recommended feed volum of 150-160e, but it's been hard with my spit ups.
Dr. Tarnopolsky's office informed us that the government has approved the funding for the mtDNA testing, so the results of that testing should be back in about 4 weeks.
In other news, apparently I am learning cause and effect relationships as I will just cry to see if my mommy comes and gets me. She does, but I think I am driving her a little crazy, I am 4 months old and it's how I learn.
Grandma gave me my first ABC book! I love the colourful pictures and I try to turn the pages, somewhat fumbly while grandma reads with me.
Mommy and Grandma are going to the psychic fair tomorrow for some fun! Hopefully these psychics say some nice things about me! Mommy will have an update on the weekend about this!
I was having a late nap when he dropped in to see me. In the meantime he had mommy fill in an assessment that asked questions pertaining to the development of a 4 month old. My overall assessment was ranked at the 10-25th percentile.
I woke up and I was put on a mat so that Dave could observe my "play" and he ticked off the positions I was doing on a chart. (Prone, supine and side lying). This gives him a baseline of what I am doing presently in those positions. He brought a bag of toys and took out a weird horse ring with a turny string to monitor my tracking skills. He let me hold onto miniature maracas, I liked these as finally I could hold onto something in my small.. yet manly hands!
Dave will come by once a week, however next week he is fully booked so I will see him in 2 weeks.
My feeds are now up to 140 mls every 4 hours. I am spitting up on every feed though, so we think my anti-reflux meds need to be increased, however my pediatrician is off until Tuesday! I am trying to make it up to my recommended feed volum of 150-160e, but it's been hard with my spit ups.
Dr. Tarnopolsky's office informed us that the government has approved the funding for the mtDNA testing, so the results of that testing should be back in about 4 weeks.
In other news, apparently I am learning cause and effect relationships as I will just cry to see if my mommy comes and gets me. She does, but I think I am driving her a little crazy, I am 4 months old and it's how I learn.
Grandma gave me my first ABC book! I love the colourful pictures and I try to turn the pages, somewhat fumbly while grandma reads with me.
Mommy and Grandma are going to the psychic fair tomorrow for some fun! Hopefully these psychics say some nice things about me! Mommy will have an update on the weekend about this!
Friday 26 August 2011
More Questions.....
I had just woken from my nap when my OT and ST came to get me.
OT: I didn't move a whole lot as I was still groggy from my nap. However Cheryl sat with me and said that my progress was slow but it was coming along for head control. Then it was on to my Speech Therapist.
ST: As you know, I had been practicing swallowing sterile water from a spoon. Mommy had been noticing that I would cough sometimes, but not all times with the water trials. Laurie told mommy to do the trials then with her there. One... two... went okay, then on the third spoon I had a HUGE coughing fit, where my face turned red and my eyes started to water and I practically hacked up a lung and continued to be throaty for minutes after... thus ending all water trials until I can be seen by someone who can monitor my lungs with Laurie.
Good luck mommy turned down the follow up swallowing test that was supposed to be scheduled this week... Laurie agreed with her decision after my performance and said she wasn't going to recommend me until we get a good run at the trials here.... No "drop zone" seat for a while for me... maybe I'll actually fit into it then.
PT: Cathy brought some toys for me to work on my head control. Mommy mentioned that I had lifted my head on the weekend and then I hadn't even tried for a few days. She also mentioned that I had rolled onto my side on my mat the night before! Cathy said that it wasn't unusual that infants "forget" one thing and then move onto another thing, then will go back later to the first thing. She also mentioned that when infants begin to roll, they choose "their" side, then they figure it out and will eventually roll to both sides... so we should not be alarmed if I always goes to one side. I didn't lift my head with her on the mat, however I did well on the exercise ball with my head balance and on the tummy mat she had brought with a soft pillow that goes under my arms. She noticed that my back was getting stronger and I punched woof dog with my arm while on my side. She was really happy with the progress I had made since last week.
Blood work:
pH: 7.43
Lac: 3.1
Weight: 14 lbs (I have graduated to diapers 2nd stage!)
Play date: I had a play date with a boy named Marshall this week, he is 9 months old. I just watched him as he played and shimmied around. I also didn't think my kitty cared about me, but she was hissing at the other boy. So I guess it means she doesn't mind me.
Infant Development: Mommy, Daddy and Grandma had an appointment with Dave from Infant Development. He will be coming to visit me to help me along. He does everything, however I have a bunch of other therapists, so he said that he will concentrate on my cognitive skills more, as everyone else is focusing on my motor skills. There will be a quiz next week, to assess how I am doing at 4 months. This will compare me to the standard and also to get an idea of my baseline.
Dietician: We updated Amy on my weight and she is increasing my feeds to 150-160 mls a feeding! I am currently on 125.... no wonder I am a grumpy beast.
Dr. Tarnopolsky: On to the final news of this week. Dr. Tarnopolsky informed us to cut my copper med volume by 50% as my zinc results were low. We haven't received any of the results of the mtDNA or the other one they are testing (I forget all their names now)... testing is being held up by the government as they haven't approved the funding for my tests yet. However, Dr. Tarnopolsky said that there has been a striking occurrence in the previous results of a high amount of glycogen in my muscle tests. So if the mtDNA comes back negative he will start going down that road... However, this result is inconsistant with complex IV deficiency... so what he was sure about me.. that I have a complex IV mitochondrial disorder, may not be the case... More questions than answers. I have always kept these doctors on their toes.
If anyone wants to know what my evenings consist of, I usually chill out on my playmat and occasionally watch a Hell's Kitchen episode with Mommy and daddy.
OT: I didn't move a whole lot as I was still groggy from my nap. However Cheryl sat with me and said that my progress was slow but it was coming along for head control. Then it was on to my Speech Therapist.
ST: As you know, I had been practicing swallowing sterile water from a spoon. Mommy had been noticing that I would cough sometimes, but not all times with the water trials. Laurie told mommy to do the trials then with her there. One... two... went okay, then on the third spoon I had a HUGE coughing fit, where my face turned red and my eyes started to water and I practically hacked up a lung and continued to be throaty for minutes after... thus ending all water trials until I can be seen by someone who can monitor my lungs with Laurie.
Good luck mommy turned down the follow up swallowing test that was supposed to be scheduled this week... Laurie agreed with her decision after my performance and said she wasn't going to recommend me until we get a good run at the trials here.... No "drop zone" seat for a while for me... maybe I'll actually fit into it then.
PT: Cathy brought some toys for me to work on my head control. Mommy mentioned that I had lifted my head on the weekend and then I hadn't even tried for a few days. She also mentioned that I had rolled onto my side on my mat the night before! Cathy said that it wasn't unusual that infants "forget" one thing and then move onto another thing, then will go back later to the first thing. She also mentioned that when infants begin to roll, they choose "their" side, then they figure it out and will eventually roll to both sides... so we should not be alarmed if I always goes to one side. I didn't lift my head with her on the mat, however I did well on the exercise ball with my head balance and on the tummy mat she had brought with a soft pillow that goes under my arms. She noticed that my back was getting stronger and I punched woof dog with my arm while on my side. She was really happy with the progress I had made since last week.
 |
| PT: Practicing my "rolling" |
Blood work:
pH: 7.43
Lac: 3.1
Weight: 14 lbs (I have graduated to diapers 2nd stage!)
Play date: I had a play date with a boy named Marshall this week, he is 9 months old. I just watched him as he played and shimmied around. I also didn't think my kitty cared about me, but she was hissing at the other boy. So I guess it means she doesn't mind me.
Infant Development: Mommy, Daddy and Grandma had an appointment with Dave from Infant Development. He will be coming to visit me to help me along. He does everything, however I have a bunch of other therapists, so he said that he will concentrate on my cognitive skills more, as everyone else is focusing on my motor skills. There will be a quiz next week, to assess how I am doing at 4 months. This will compare me to the standard and also to get an idea of my baseline.
Dietician: We updated Amy on my weight and she is increasing my feeds to 150-160 mls a feeding! I am currently on 125.... no wonder I am a grumpy beast.
Dr. Tarnopolsky: On to the final news of this week. Dr. Tarnopolsky informed us to cut my copper med volume by 50% as my zinc results were low. We haven't received any of the results of the mtDNA or the other one they are testing (I forget all their names now)... testing is being held up by the government as they haven't approved the funding for my tests yet. However, Dr. Tarnopolsky said that there has been a striking occurrence in the previous results of a high amount of glycogen in my muscle tests. So if the mtDNA comes back negative he will start going down that road... However, this result is inconsistant with complex IV deficiency... so what he was sure about me.. that I have a complex IV mitochondrial disorder, may not be the case... More questions than answers. I have always kept these doctors on their toes.
If anyone wants to know what my evenings consist of, I usually chill out on my playmat and occasionally watch a Hell's Kitchen episode with Mommy and daddy.
 |
| Practicing bearing weight |
Friday 19 August 2011
The Month of August in a nut shell
It’s almost been a month since my last update. Many and a few things have happened.
2nd OT appointment: I was more lazy than normal during my assessment; however Cheryl did comment on having a bit better head control as she held me while I sat. I am still not lifting my head when laying on my tummy. She gave mommy a few new exercises to help me bear weight on my legs in addition to the exercises for my arms and head control.
Speech Therapist: After much fighting from my mommy, I
finally got an appointment with Laurie, my speech therapist, who unlike her
title has nothing to do with the spoken word, she focuses on feedings. So, my
swallowing issue. My mommy and grandma
got in trouble for giving me little “shots” of formula from a syringe into my
mouth. This can cause infection if it
goes to my lungs, and since the swallowing study showed I am a silent aspirator
it is hard to know when it goes to my lungs. My mommy explained again that I was to have a
follow up swallow study before I turned 4 months and since she hadn’t seen a
therapist to tell us what to do, we had to come up with something. Laurie suggested I try some sterile water
from a spoon. I seemed to do well and
Laurie was happy with the trial. My
mommy was told to continue with this 5 times a day of 5 spoons of 1ml each
sitting. In addition Laurie introduced
us to “Nuk brush”. This is an instrument
that is used on my cheeks and lips to get me used to having different textures
on my face, so the idea is I won’t become adverse to food in my mouth when I am
able to swallow without danger. The Nuk
was left with Mommy and is added to our homework schedule.
Physiotherapist: I am on the wait list for Kidsability however the wait list is unbelievably long, so until I get accepted I have a physiotherapist that comes to see me, Cathy. Our first appointment was last week. She assessed me, and commented that my head control looked like it was coming along, even though I still do not lift my head. I was a little more active than I had been with my OT. Cathy gave us some more homework for helping me roll and reach for toys.
Pediatrician: My pediatrician agreed that my arms are on the floppy side and my head is laggy when she pulls me to sit. However I had just gotten my blood work done and wanted a nap, how could I perform at my best under those conditions?
Blood work:
pH: 7.40
Lac: 3.8
Other Notes:
-I lifted my head a smidge yesterday on my tummy… a few cm but it’s something!
-I can bear weight on my legs for a few seconds.. which is better than just collapsing!
-Mommy purchased a Bumbo chair to help with my head control, I love it!
-I love watching Pocoyo. It’s a Spanish kids show, which my mommy has found in English
-I love listening to Katy Perry, she is my current girlfriend
-Grandma P. gave me a mouse that has super long ears and I love biting him
-Special thanks to my Uncle Jan who has picked up and delivered my meds
to me on 2 desperate occasions!
-I have graduated to 3-6 month clothes!
Special
note: Please send your thoughts and prayers to my buddy Emerson, who had to be
rushed to the hospital in Sudbury this week.
He was in the process of being weaned off his anti-seizure medication to
see if he had outgrown his seizures. He
had 2 seizures, and it is looking like there is an underlying condition, his
doctors have increased his meds. Emerson is getting stronger by
the day and is meeting his milestones in stride, this was a complete
blow to his family who were hoping that his seizures had disappeared.
Please give them strength through this difficult time.
2nd OT appointment: I was more lazy than normal during my assessment; however Cheryl did comment on having a bit better head control as she held me while I sat. I am still not lifting my head when laying on my tummy. She gave mommy a few new exercises to help me bear weight on my legs in addition to the exercises for my arms and head control.
 |
| NUK brush |
Physiotherapist: I am on the wait list for Kidsability however the wait list is unbelievably long, so until I get accepted I have a physiotherapist that comes to see me, Cathy. Our first appointment was last week. She assessed me, and commented that my head control looked like it was coming along, even though I still do not lift my head. I was a little more active than I had been with my OT. Cathy gave us some more homework for helping me roll and reach for toys.
Pediatrician: My pediatrician agreed that my arms are on the floppy side and my head is laggy when she pulls me to sit. However I had just gotten my blood work done and wanted a nap, how could I perform at my best under those conditions?
Blood work:
pH: 7.40
Lac: 3.8
Other Notes:
-I lifted my head a smidge yesterday on my tummy… a few cm but it’s something!
-I can bear weight on my legs for a few seconds.. which is better than just collapsing!
-Mommy purchased a Bumbo chair to help with my head control, I love it!
-I love watching Pocoyo. It’s a Spanish kids show, which my mommy has found in English
-I love listening to Katy Perry, she is my current girlfriend
-Grandma P. gave me a mouse that has super long ears and I love biting him
 |
| My first Bumbo! |
-I have graduated to 3-6 month clothes!
 |
| Practicing Head Control |
Tuesday 2 August 2011
Thursday 28 July 2011
Ethan Clinic #2
Hi all,
Ethan again. Tuesday's trip to Mac was fantastic! My mom and grandma Philp took me down to see Dr. K and Amy. I had practiced all my special assignments, and this time we were going to make them proud!
When we arrived we asked about the results of my skin tests. Nothing in just yet. Mariya's take on me is I am stabilizing because I am eating so many calories and my current diagnosis remains as "primary lactic acidosis" until a real result comes in.
Then my assessment began... My performance was great!
Mariya asked me if I knew my mommy. I didn't answer but instead I looked at mommy who was walking around the room behind her and this was answer enough for the doc. Mariya then took off her glasses as she thought they scared me. Her and I then had a nice chat and I smiled tons! Amy said "He's going to be a lady killer!" Mariya "I already love him!" After we chatted, Mariya complemented me on my improved head control and mobility in my arms, she liked that I was tracking better from side to side and top to bottom. This trip made her much happier as I was doing significantly better than my previous visit, complements to my personal trainers mommy and grandma Philp! As my assessment came to a close, Mariya said "You better take him away because I will kiss him all over!"
Next we took down my growth stats. My weight is now 11lbs 2oz... Wait.. What's that? Mariya, who had just sat down nearly killed herself springing back up from her chair with joy. I, Ethan Reimer, have registered above the 5th percentile on the infant growth chart. This little fighter who couldn't make it past 3.05kg while in the hospital was a big boy now! My length is now just shy of 23 inches.
With a general happiness floating through the room, the talk turned to my homework for the month. I'm supposed to keep working on my arms and continue to eat as much as I can. Eating lots will allow my brain to grow big and strong as so much of my learning happens before I turn 1 year old!
Next up, my legs. Mariya said to me "What should I tell your mom to do with your legs?" Mommy asked, "What's wrong with his legs?". Mariya replied, "nothing, but next month's the legs and feet... Put formula on his feet and bring them to his mouth". What? Pardon? First, that sounds kind of gross. Second, those of you who know my mommy well know she has a fear of feet. She looked at Mariya in HORROR! She explained "but... I have a fear of feet." Mariya asked why? Mommy told her "they look at me in a creepy way!" This may be more daddy's and grandma's job in the weeks to come.
Mommy mentioned that I already have a lot of leg movement and usually go crazy with my legs, I just wasn't bringing my "A" game today. Mariya said "He will be a dancer!" and mommy said, "yeah, probably a river dancer!"
The Plan:
Mommy asked if I can be changed to every 4 hour feedings. Mariya said "Yes, you wouldn't be asking me if you didn't think Ethan could". As such, we have changed to 6 feeds from 8 and now have more time between eats to play, live, learn, and go on outings in the real world. Grandma asked about my blood work and if Mariya was thinking to change it to every couple of weeks.. Mariya did one better and said "I was thinking once a month" providing I was still good this week. Once a month? That's awesome!
I have my next clinic in September, sounds like lots of time to brush up on my skills and really show off my stuff when I see them next! Mariya is pressuring for a follow up swallowing study for me so I can start eating through mouth. Oh the thought!
On to Wednesday, another trip to Grand River for blood work. One of my regular nurses, Laurie, is on vacation this week! So my other nurse, Patty had to do the blood work. She asked mommy if a photographer can take pictures of me and use it for hospital brochures and
the website, because I am so cute! I was excited- I'm going to be famous! What we didn't know is they meant taking pictures of me getting my head pokes done! Not my best look. I was crying and generally looking unhappy. The nurse gave a posed smile to the camera as to indicate that this poking business was supposed to be fun! Not sure I agree. Anyway, look for me in the next GRH brochures and website!
after 2 head pokes and an arm vein ... my results:
pH: 7.27
Bicarb: 23
Lac: 2.9
Not too shabby! With number like that, I bet I'm not doing blood nearly as often now! Looking forward to some extra time with my Dad next week as he is going on vacation from the office!
 |
| On the way to MAC |
Ethan again. Tuesday's trip to Mac was fantastic! My mom and grandma Philp took me down to see Dr. K and Amy. I had practiced all my special assignments, and this time we were going to make them proud!
When we arrived we asked about the results of my skin tests. Nothing in just yet. Mariya's take on me is I am stabilizing because I am eating so many calories and my current diagnosis remains as "primary lactic acidosis" until a real result comes in.
Then my assessment began... My performance was great!
Mariya asked me if I knew my mommy. I didn't answer but instead I looked at mommy who was walking around the room behind her and this was answer enough for the doc. Mariya then took off her glasses as she thought they scared me. Her and I then had a nice chat and I smiled tons! Amy said "He's going to be a lady killer!" Mariya "I already love him!" After we chatted, Mariya complemented me on my improved head control and mobility in my arms, she liked that I was tracking better from side to side and top to bottom. This trip made her much happier as I was doing significantly better than my previous visit, complements to my personal trainers mommy and grandma Philp! As my assessment came to a close, Mariya said "You better take him away because I will kiss him all over!"
Next we took down my growth stats. My weight is now 11lbs 2oz... Wait.. What's that? Mariya, who had just sat down nearly killed herself springing back up from her chair with joy. I, Ethan Reimer, have registered above the 5th percentile on the infant growth chart. This little fighter who couldn't make it past 3.05kg while in the hospital was a big boy now! My length is now just shy of 23 inches.
With a general happiness floating through the room, the talk turned to my homework for the month. I'm supposed to keep working on my arms and continue to eat as much as I can. Eating lots will allow my brain to grow big and strong as so much of my learning happens before I turn 1 year old!
Next up, my legs. Mariya said to me "What should I tell your mom to do with your legs?" Mommy asked, "What's wrong with his legs?". Mariya replied, "nothing, but next month's the legs and feet... Put formula on his feet and bring them to his mouth". What? Pardon? First, that sounds kind of gross. Second, those of you who know my mommy well know she has a fear of feet. She looked at Mariya in HORROR! She explained "but... I have a fear of feet." Mariya asked why? Mommy told her "they look at me in a creepy way!" This may be more daddy's and grandma's job in the weeks to come.
Mommy mentioned that I already have a lot of leg movement and usually go crazy with my legs, I just wasn't bringing my "A" game today. Mariya said "He will be a dancer!" and mommy said, "yeah, probably a river dancer!"
The Plan:
Mommy asked if I can be changed to every 4 hour feedings. Mariya said "Yes, you wouldn't be asking me if you didn't think Ethan could". As such, we have changed to 6 feeds from 8 and now have more time between eats to play, live, learn, and go on outings in the real world. Grandma asked about my blood work and if Mariya was thinking to change it to every couple of weeks.. Mariya did one better and said "I was thinking once a month" providing I was still good this week. Once a month? That's awesome!
I have my next clinic in September, sounds like lots of time to brush up on my skills and really show off my stuff when I see them next! Mariya is pressuring for a follow up swallowing study for me so I can start eating through mouth. Oh the thought!
On to Wednesday, another trip to Grand River for blood work. One of my regular nurses, Laurie, is on vacation this week! So my other nurse, Patty had to do the blood work. She asked mommy if a photographer can take pictures of me and use it for hospital brochures and
the website, because I am so cute! I was excited- I'm going to be famous! What we didn't know is they meant taking pictures of me getting my head pokes done! Not my best look. I was crying and generally looking unhappy. The nurse gave a posed smile to the camera as to indicate that this poking business was supposed to be fun! Not sure I agree. Anyway, look for me in the next GRH brochures and website!
after 2 head pokes and an arm vein ... my results:
pH: 7.27
Bicarb: 23
Lac: 2.9
Not too shabby! With number like that, I bet I'm not doing blood nearly as often now! Looking forward to some extra time with my Dad next week as he is going on vacation from the office!
 | ||
| After bloodwork Mommy made a stop at the grocery store to start my modelling career |
Thursday 21 July 2011
Introducing Sheryl: My Occupational Therapist
My OT, Sheryl, came to assess me for the first time! Mommy was worried
as she was coming by right at 1:15 and I start my feeding at 1....
However, she was smart and gave me about 30mls before my appointment so I
wouldn't be upset or puke. Also I had been awake for some time playing
before my new friend came to see me, so mommy and grandma were worried
that I would be too sleepy or even asleep when she came by.
I was starting to get a little cranky before Sheryl showed up, however I was attentive when Sheryl started talking to me... Of course she told me how cute I was before diving into my exercises... which helps me to show off my stuff!
She put me on my play mat and watched me for awhile. At the beginning all I wanted to do was talk... she is a new friend and I have lots of stories to tell her first! She assessed my arms, head control, and legs, she rolled me onto my tummy and I had to show her that I was a good boy, and didn't complain! She told Mommy and Grandma what exercises to do with me to strengthen my arms and neck.
She says I have a bit of low tone in my upper body. She says that strength starts from the head down, so once I get better head control, my arms and fine motor skills will follow.
She said that I am a social beast (as I wouldn't stop talking, smiling and laughing). I wouldn't let mommy talk to Sheryl as I had many things I wanted to say and wanted the attention to be on me again! Sheryl said that I am excellent at tracking, focusing and observing.
45 minutes later Sheryl scheduled her next play visit with me (August 9th) and went on her way, I fell asleep as soon as I heard the door shut!
I was starting to get a little cranky before Sheryl showed up, however I was attentive when Sheryl started talking to me... Of course she told me how cute I was before diving into my exercises... which helps me to show off my stuff!
She put me on my play mat and watched me for awhile. At the beginning all I wanted to do was talk... she is a new friend and I have lots of stories to tell her first! She assessed my arms, head control, and legs, she rolled me onto my tummy and I had to show her that I was a good boy, and didn't complain! She told Mommy and Grandma what exercises to do with me to strengthen my arms and neck.
She says I have a bit of low tone in my upper body. She says that strength starts from the head down, so once I get better head control, my arms and fine motor skills will follow.
She said that I am a social beast (as I wouldn't stop talking, smiling and laughing). I wouldn't let mommy talk to Sheryl as I had many things I wanted to say and wanted the attention to be on me again! Sheryl said that I am excellent at tracking, focusing and observing.
45 minutes later Sheryl scheduled her next play visit with me (August 9th) and went on her way, I fell asleep as soon as I heard the door shut!
Tuesday 19 July 2011
Blood week 4
Blood Clinic Week 4:
I was supposed to get Lactate, Blood Gases, Copper level and Zinc level
Two head pokes and I only had enough blood for the lactate and half full for the blood gases... however they ran the blood gases anyway.
Scalp Vein done:
P.H: 7.73
Bicarb: 20
Lac: 2.8
Weight: 10 lbs 7 oz
Dr. Kozenko told mommy that she believes the PH is wrong as the Bicarb is 20. Nevertheless we are stopping the baking soda and we're seeing her next week for a follow-up anyway.
Mommy will try to get Daddy to take me Friday afternoon for the copper and zinc...
Stay tuned for my first OT assessment on Thursday!
I was supposed to get Lactate, Blood Gases, Copper level and Zinc level
Two head pokes and I only had enough blood for the lactate and half full for the blood gases... however they ran the blood gases anyway.
Scalp Vein done:
P.H: 7.73
Bicarb: 20
Lac: 2.8
Weight: 10 lbs 7 oz
Dr. Kozenko told mommy that she believes the PH is wrong as the Bicarb is 20. Nevertheless we are stopping the baking soda and we're seeing her next week for a follow-up anyway.
Mommy will try to get Daddy to take me Friday afternoon for the copper and zinc...
Stay tuned for my first OT assessment on Thursday!
Dr. T and the women
Hi all,
Ethan here!
Today we made the big drive back to Mac for a follow up with Dr. Tarnopolsky. Our appointment was scheduled for 1:30 so dad left work around noon so he could drive with us and keep me company in the back seat. I had a good snooze on the trip down so I was well rested for our visit. Since the trip was right in the middle of my feeding time, my mom and dad brought along a bottle of the good stuff for me and had to warm it in their hands. We arrived at Mac around 1:00, mom let us off at the door and parked the car. Good thing she did cause it was really warm in Hamilton and I probably would have cooked if we had to walk from the other side of the street!
We checked in with dr. Tarnopolsky's office and waited patiently in the waiting room. Dad continued to feed me small amounts to keep my tummy happy, but not so much as to risk unnecessary spillage from the mouth. Around 1:45, we were called in to the clinic and we saw our old friend Dr. T. He discussed with us a new paper he had read regarding the "Reversible Cox Deficiency" and said there were some additional tests that he wanted to run. One of the tests was being offered by a lab in the states but it was still new and was not yet a pay for service test. This meant that they are still looking for additional samples to run free testing on. Dr. T had provided them with the details of my condition and they were excited to offer the opportunity for us to use their test! Wow!
Dr. T asked that we sign the papers for both an on-site lab test and the freebie from the US and mom and dad did so happily. We were told that there might not be enough of me stored on ice to run all the tests and that I might need to have an additional muscle biopsy done. We'll know more in a day or two but worst case scenario is that I'll have a matching biopsy scar on my other leg. At least I would be symmetrical.
We thanked Dr. Tarnopolsky for his time and left the clinic. The other reason for our visit was to pick up some prescription refills. Unfortunately, as my prescriptions are somewhat complicated, they said we couldn't pick them up until 3:00. By now it was about 2:15. What to do at Mac for 45 minutes? hmmm... Let's go visit people!
We returned to the third floor and zipped over to the Ronald MacDonald room. Linda was there holding down the fort and was sooo happy to see me. Dad let her hold me and we stayed and chatted for a few minutes. She was happy to see me getting so big and commented on my chubbiness. She reluctantly relinquished her hold over me and we continued on our trip.
Next stop, Ward 3c... We walked toward the entrance to the ward and like a tidal wave, memories surged back. What a time was had here. We didn't know who we might find working today but entered assuming we'd find friends. No sooner did we pass through the doors, but staring at us was the Kate the OT. She came running over to see me. She was happy I was growing and please to see that my mom and dad were on the outside looking in. She told us to let her know if we like the OT we get in town and if not she'll help us locate a better fit. She also mentioned that my followup swallow study had yet to be scheduled but she would keep us posted. We thanked her and said our so longs for now.
As we progressed around the ward, there were a lot of new faces. We made it to the back of the ward without seeing anyone familiar until we came across Sara. She was one of my favourite nurses. She was very insightful, friendly, resourceful and professional with us and the Rutledges during our mutual stay in Room 10. She was also happy to see us and to see my progress. We stayed for a few minutes to chat but had to keep moving as it turns out, the A/C was not running very well on the ward and it was soooooo hot I was sweating through my diaper. We said our goodbyes and gave our condolences for the unbearable heat and left the ward.
It's alot easier to come and go when you're not a patient.
By this time it was 3:00 and we were ready to pick up the meds. Dad and I grabbed my treat bag, mom hoofed it back to the car and picked us up at the door. We made tracks back home and were back in time for next meal. All in all a successful outing.
Tuesday, we're off to get the next bloodwork done.
Hoping for more great numbers!
In other news, still no funny reactions to my immunizations! YAY! I'm in the clear :)
Ethan here!
Today we made the big drive back to Mac for a follow up with Dr. Tarnopolsky. Our appointment was scheduled for 1:30 so dad left work around noon so he could drive with us and keep me company in the back seat. I had a good snooze on the trip down so I was well rested for our visit. Since the trip was right in the middle of my feeding time, my mom and dad brought along a bottle of the good stuff for me and had to warm it in their hands. We arrived at Mac around 1:00, mom let us off at the door and parked the car. Good thing she did cause it was really warm in Hamilton and I probably would have cooked if we had to walk from the other side of the street!
We checked in with dr. Tarnopolsky's office and waited patiently in the waiting room. Dad continued to feed me small amounts to keep my tummy happy, but not so much as to risk unnecessary spillage from the mouth. Around 1:45, we were called in to the clinic and we saw our old friend Dr. T. He discussed with us a new paper he had read regarding the "Reversible Cox Deficiency" and said there were some additional tests that he wanted to run. One of the tests was being offered by a lab in the states but it was still new and was not yet a pay for service test. This meant that they are still looking for additional samples to run free testing on. Dr. T had provided them with the details of my condition and they were excited to offer the opportunity for us to use their test! Wow!
Dr. T asked that we sign the papers for both an on-site lab test and the freebie from the US and mom and dad did so happily. We were told that there might not be enough of me stored on ice to run all the tests and that I might need to have an additional muscle biopsy done. We'll know more in a day or two but worst case scenario is that I'll have a matching biopsy scar on my other leg. At least I would be symmetrical.
We thanked Dr. Tarnopolsky for his time and left the clinic. The other reason for our visit was to pick up some prescription refills. Unfortunately, as my prescriptions are somewhat complicated, they said we couldn't pick them up until 3:00. By now it was about 2:15. What to do at Mac for 45 minutes? hmmm... Let's go visit people!
We returned to the third floor and zipped over to the Ronald MacDonald room. Linda was there holding down the fort and was sooo happy to see me. Dad let her hold me and we stayed and chatted for a few minutes. She was happy to see me getting so big and commented on my chubbiness. She reluctantly relinquished her hold over me and we continued on our trip.
Next stop, Ward 3c... We walked toward the entrance to the ward and like a tidal wave, memories surged back. What a time was had here. We didn't know who we might find working today but entered assuming we'd find friends. No sooner did we pass through the doors, but staring at us was the Kate the OT. She came running over to see me. She was happy I was growing and please to see that my mom and dad were on the outside looking in. She told us to let her know if we like the OT we get in town and if not she'll help us locate a better fit. She also mentioned that my followup swallow study had yet to be scheduled but she would keep us posted. We thanked her and said our so longs for now.
As we progressed around the ward, there were a lot of new faces. We made it to the back of the ward without seeing anyone familiar until we came across Sara. She was one of my favourite nurses. She was very insightful, friendly, resourceful and professional with us and the Rutledges during our mutual stay in Room 10. She was also happy to see us and to see my progress. We stayed for a few minutes to chat but had to keep moving as it turns out, the A/C was not running very well on the ward and it was soooooo hot I was sweating through my diaper. We said our goodbyes and gave our condolences for the unbearable heat and left the ward.
It's alot easier to come and go when you're not a patient.
By this time it was 3:00 and we were ready to pick up the meds. Dad and I grabbed my treat bag, mom hoofed it back to the car and picked us up at the door. We made tracks back home and were back in time for next meal. All in all a successful outing.
Tuesday, we're off to get the next bloodwork done.
Hoping for more great numbers!
In other news, still no funny reactions to my immunizations! YAY! I'm in the clear :)
Sunday 17 July 2011
Foreign substances IN???
Friday morning I went back to GRH to get my first round of immunizations
(2 needles). Mommy had begged my pediatrician to let me get immunized
at the hospital instead of going to the family doctor.
Mommy and Grandma P. dressed me in sunglasses so I was 'incognito'. Mommy stayed in the room and was asked to hold my arms down while my two nurses, yes I already have my regular nurses (Laurie and Patty) needled me in both legs, so they wouldn't have to needle me two separate times. I was pretty good and only cried for a bit. We stayed an hour and a half later to see if I would have an allergic reaction. I didn't so we were good to go. I was a little fussy that night and mommy said I felt a little warm. Turns out my temperature was a little higher than normal (37.7).
I got ready for Saturday and put my best party face on. There were a lot of people coming to see me. Yvette and Paula came first, they brought mommy and daddy Swiss Chalet for lunch and an apple pie. In came my uncle Jan, who was going to make us homemade burgers for dinner! My aunt Jackie, uncle Bob, big brother Greg, bigger brother Sam and auntie Katarina joined us. They brought pie, cupcakes and salad for our festivities. I also received a robe I can wear when I become a big boy and a hippo rattle from Katarina. New exercise clothes from Jackie, Bob and the boys. In addition on Thursday my uncle Brian had dropped off an elephant rattle to help me with my arm exercises.
The day went well and everyone was really nice to me! I got to spend a lot of time with people other than my parents and I wasn't scared at all!
I still have a bit of a temperature so we'll keep up with the Tylenol. We go to MacMaster on Monday for my first clinic checkup with Dr. Tarnopolsky. He may have some results ready, but we are doubtful as he had told us 6 weeks from when we left Mac.
I still haven't seen my OT, due to the blood fiasco, but the appointment is scheduled this week. I am putting my hands together to my chest and near my mouth, so that part is completed! I still hate tummy time and can't lift my head yet.
Mommy and Grandma P. dressed me in sunglasses so I was 'incognito'. Mommy stayed in the room and was asked to hold my arms down while my two nurses, yes I already have my regular nurses (Laurie and Patty) needled me in both legs, so they wouldn't have to needle me two separate times. I was pretty good and only cried for a bit. We stayed an hour and a half later to see if I would have an allergic reaction. I didn't so we were good to go. I was a little fussy that night and mommy said I felt a little warm. Turns out my temperature was a little higher than normal (37.7).
I got ready for Saturday and put my best party face on. There were a lot of people coming to see me. Yvette and Paula came first, they brought mommy and daddy Swiss Chalet for lunch and an apple pie. In came my uncle Jan, who was going to make us homemade burgers for dinner! My aunt Jackie, uncle Bob, big brother Greg, bigger brother Sam and auntie Katarina joined us. They brought pie, cupcakes and salad for our festivities. I also received a robe I can wear when I become a big boy and a hippo rattle from Katarina. New exercise clothes from Jackie, Bob and the boys. In addition on Thursday my uncle Brian had dropped off an elephant rattle to help me with my arm exercises.
The day went well and everyone was really nice to me! I got to spend a lot of time with people other than my parents and I wasn't scared at all!
I still have a bit of a temperature so we'll keep up with the Tylenol. We go to MacMaster on Monday for my first clinic checkup with Dr. Tarnopolsky. He may have some results ready, but we are doubtful as he had told us 6 weeks from when we left Mac.
I still haven't seen my OT, due to the blood fiasco, but the appointment is scheduled this week. I am putting my hands together to my chest and near my mouth, so that part is completed! I still hate tummy time and can't lift my head yet.
Thursday 14 July 2011
Grand River Hospital a.k.a. the torture chamber
Hi all,
Ethan here. Lots has happened since last we spoke. So let's get right down to it!
I was supposed to have a play date with Emerson and on Friday night. But that little bum got himself a cold and couldn't come. As a substitute, aunt Christiane and uncle Andrew came in his stead and brought presents. They dropped off a bassinet and lots o' clothes. Mom and dad gave them a tour of our home and Christiane held me for most of their visit!
One sleep later, and we're on to the weekend! This weekend was particularly important as I grew out of my pampers newborns and now I wear size 1! For those not in the know, the weight range for #1 is 8 to 14lbs. In addition to new diapers, I was invited to my first barbecue at Grandpa and Wayne's house. Also in attendance were Grandma and Grandpa Philp. The event spanned two feeds, a first for me!
As the weekend came to a close, one more big event. My dad rigged my crib up to incline 35 degrees (using a couch cushion) so I can sleep there overnight without worrying about my acid reflux problems. This means I no longer sleep in my parent's bed. I HAVE MY OWN ROOM NOW!
... Enter bloodwork attempt number one (Tuesday)
I was scheduled to see my pediatrician today for an updated weight, vitals and bloodwork. The pediatrician came in to see me and said my vitals were good. My weight was taken and I was 9lbs 12ounces. If you recall, just last week I was 9lbs 1 ounce and thus have gained 11 ounces!
BlooDwOrk.....!.!.!
The nurse came to try to get blood which resulted in 3 head pokes, a STAB in the foot and a STAB in the arm both with no tourniquet. Thos of you with intimate knowledge of veins, this is hard to do on an adult, and IMPOSSIBLE on infants.
Result: no blood.
Result: I cried for over an hour during and after the event.
Result: Grandma Philp watched it all and almost fainted. Mom was crying and yelled "NO MORE! The results will be tainted!" and it was decided that I would come back again the next day.
Result: I cried so long that with my swallowing issues I was gurgling and breathing like a bad FM radio station. Mom thought I might have aspirated and asked that the on call pediatrician come assess me. During this fiasco, I was supposed to be assessed at home by the local OT but as I had recently undergone a rigorous round of torture, this was not going to fly. The assessment will be rescheduled. The on call pediatrician came in and said I sounded clear and didn't want to submit me to further radiation from an X-ray. He was very interested in my case as he is a hematologist.
Bloodwork attempt number two (Wednesday)
So I was scheduled to return to the hospital for another try at the old vein poking. The nurse suggested that in preparation for my visit, I adorn a toque to warm up the old noggin and get the blood flowing. As many of you know, I am already a sweat monster and the addition of a winter hat only accentuated the beastliness. However, one successful head poke later I had filled two vials and I was done!
Result:
Ph: 7.45
Bi-carb 23
Lactate 3.1
Booyeah!
Ethan here. Lots has happened since last we spoke. So let's get right down to it!
I was supposed to have a play date with Emerson and on Friday night. But that little bum got himself a cold and couldn't come. As a substitute, aunt Christiane and uncle Andrew came in his stead and brought presents. They dropped off a bassinet and lots o' clothes. Mom and dad gave them a tour of our home and Christiane held me for most of their visit!
One sleep later, and we're on to the weekend! This weekend was particularly important as I grew out of my pampers newborns and now I wear size 1! For those not in the know, the weight range for #1 is 8 to 14lbs. In addition to new diapers, I was invited to my first barbecue at Grandpa and Wayne's house. Also in attendance were Grandma and Grandpa Philp. The event spanned two feeds, a first for me!
As the weekend came to a close, one more big event. My dad rigged my crib up to incline 35 degrees (using a couch cushion) so I can sleep there overnight without worrying about my acid reflux problems. This means I no longer sleep in my parent's bed. I HAVE MY OWN ROOM NOW!
... Enter bloodwork attempt number one (Tuesday)
I was scheduled to see my pediatrician today for an updated weight, vitals and bloodwork. The pediatrician came in to see me and said my vitals were good. My weight was taken and I was 9lbs 12ounces. If you recall, just last week I was 9lbs 1 ounce and thus have gained 11 ounces!
BlooDwOrk.....!.!.!
The nurse came to try to get blood which resulted in 3 head pokes, a STAB in the foot and a STAB in the arm both with no tourniquet. Thos of you with intimate knowledge of veins, this is hard to do on an adult, and IMPOSSIBLE on infants.
Result: no blood.
Result: I cried for over an hour during and after the event.
Result: Grandma Philp watched it all and almost fainted. Mom was crying and yelled "NO MORE! The results will be tainted!" and it was decided that I would come back again the next day.
Result: I cried so long that with my swallowing issues I was gurgling and breathing like a bad FM radio station. Mom thought I might have aspirated and asked that the on call pediatrician come assess me. During this fiasco, I was supposed to be assessed at home by the local OT but as I had recently undergone a rigorous round of torture, this was not going to fly. The assessment will be rescheduled. The on call pediatrician came in and said I sounded clear and didn't want to submit me to further radiation from an X-ray. He was very interested in my case as he is a hematologist.
Bloodwork attempt number two (Wednesday)
So I was scheduled to return to the hospital for another try at the old vein poking. The nurse suggested that in preparation for my visit, I adorn a toque to warm up the old noggin and get the blood flowing. As many of you know, I am already a sweat monster and the addition of a winter hat only accentuated the beastliness. However, one successful head poke later I had filled two vials and I was done!
Result:
Ph: 7.45
Bi-carb 23
Lactate 3.1
Booyeah!
Thursday 7 July 2011
My first "visit" to Mac
Tuesday my mom, Grandma and I took the trip down to Mac. However, this
time it was for my metabolic clinic appointment with Dr. Kozenko.
Her clinic hours are not on Tuesday, but she met us for "Ethan Clinic" with Amy (my dietician) and one of her students. This way she could spend an hour and a half with me!
Things to note:
- My skin tests have not come back, but she believes that the result will be back within the next 3 weeks (before my next follow up)
- I am ahead on my communication skills
- I am a bit hypo-tonic
- She will send a note to Dr. Tarnopolsky about my contaminated copper test
- We need to up the dosage of my meds due to my weight gain
- She believes that my actual lactate level is 3.5 (which she says is still high for me)
My homework for the next 3 weeks:
- To smile at Dr. Kozenko
- To suck on my hands
- Tummy time to strengthen my neck
- soother dips and smear formula on my face and hands
The Plan:
-My mommy will show me pictures of Dr. Kozenko so I can smile at her pictures.. then transfer that to real life... I was just so overwhelmed by the dr.s office!
-My mommy has been singing patty cake to me trying to get me to notice my hands... My Grandma has been stuffing my hands in my mouth during play time.
-I have been on my tummy 3 or 4 times since Tuesday and I hate it!
Her clinic hours are not on Tuesday, but she met us for "Ethan Clinic" with Amy (my dietician) and one of her students. This way she could spend an hour and a half with me!
Things to note:
- My skin tests have not come back, but she believes that the result will be back within the next 3 weeks (before my next follow up)
- I am ahead on my communication skills
- I am a bit hypo-tonic
- She will send a note to Dr. Tarnopolsky about my contaminated copper test
- We need to up the dosage of my meds due to my weight gain
- She believes that my actual lactate level is 3.5 (which she says is still high for me)
My homework for the next 3 weeks:
- To smile at Dr. Kozenko
- To suck on my hands
- Tummy time to strengthen my neck
- soother dips and smear formula on my face and hands
The Plan:
-My mommy will show me pictures of Dr. Kozenko so I can smile at her pictures.. then transfer that to real life... I was just so overwhelmed by the dr.s office!
-My mommy has been singing patty cake to me trying to get me to notice my hands... My Grandma has been stuffing my hands in my mouth during play time.
-I have been on my tummy 3 or 4 times since Tuesday and I hate it!
Tuesday 5 July 2011
Blood test results: Week 2
2nd weekly blood test results:
PH: 7.29
Lac: 6.3
Tourniquet was used again. Next week if the right nurse is there they will do a scalp vein.....
Weight: 4.16 kg (9 lbs 1 oz)
Tomorrow I go to my first Metabolic clinic at McMaster. Will keep you updated!
Update on my development:
I have been talking up a storm since last week
I can bat at toys that are above me to make them move
I can laugh when I am in a good mood
PH: 7.29
Lac: 6.3
Tourniquet was used again. Next week if the right nurse is there they will do a scalp vein.....
Weight: 4.16 kg (9 lbs 1 oz)
Tomorrow I go to my first Metabolic clinic at McMaster. Will keep you updated!
Update on my development:
I have been talking up a storm since last week
I can bat at toys that are above me to make them move
I can laugh when I am in a good mood
 |
| My first night in my "Big Boy Crib" |
Wednesday 29 June 2011
"When I think of you, I feel like smiling"
Upon discharge I have a few follow up appointments. Here's who is following me:
Metabolics: Dr. Kozenko
Neuromuscular: Dr. Tarnopolsky
Dietician: Amy Pender
Pediatrician: Dr. Rosner
Nurse: (CCAC) Michelle
Case Manager: (CCAC) Julia
Occupational therapist: (CCAC) Sheri?
Speech Therapist: (CCAC) oral motor skill
So you see, I have quite the crew!
Upon arriving home My mommy was supposed to make my formula from a recipe given by my Dietitian. I am on the powdered Similac Advance, however my concentration is higher than normal. I need more calories than the normal kid in order to grow. My mom measured out 670ml of water and 12 scoops and mixed it all together and fed me for the day. The next day my dad made note that the instructions were written as "measure 12 scoops and THEN add water to a FINAL volume of 670ml". Dad is making my formula from now on.
Some of you may be thinking, my dad isn't perfect either! He actually slept through my 1am feeding last Sunday morning! Most of you are aware that I eat 70ml over the hour and every 3 hours. This is done to treat me like a normal baby and also so my sugars do not tank.
So going without eating from 10pm to 330am was a big deal! How did I fare? Well I woke up crying for food and I was awake for hours after just playing. Meaning I can keep my sugars! To make up for the missed meal, I was stuffed with 80ml for my feeds the rest of the day. I tolerated the increased volume, and had no pukes or spit ups.
This past Friday I felt like hell! Since I've been home I have developed a cough, a throaty staticy sound accompanied with a motor like sound and tons of mucous! On friday I was so mucousy I almost choked myself to death on multiple occasions. The nurse came by and listened to my lungs, she said the sound is mostly in my nasal area but I did have some fluid in my right lung. The hope was that I would work it out on my own. Mommy was so scared that she said she'd take me to the hospital if I didn't sound better when Dad came home. I did and I got to avoid the hospital. The nurse came by monday and said that my lungs sounded better and that it was good I can clear it out on my own.
Which brings us to Tuesday! I was being a little fussy through my feedings over the last few days and this morning I was screaming and spitting up. Mom was concerned and asked Dad why I am so broken. Dad said that nothing is wrong with me, and I am just being a baby. After dad left for work I threw up my whole meal! Mom said that I must be constipated, so back on lactalose I go! Just before we left to go to my first pediatric appointment my mom remembered a little trick from a friend... Use the thermometer to stick up my bum to help me loosen what is stuck. So after 5 minutes of poking and probing I let a bunch of pooh go to my mom and grandma's excitement and astonishment. I am still backed up but at least a fare bit came out. Mommy gave me some Tylenol to try to ease my discomfort or put me to sleep... Didn't work. So off to my pediatric appointment!
My appointment was at the pediatric outpatient clinic at Grand River Hospital. My appointments will continue to be there as I need blood work every week. The blood tests I need are only done in hospitals! My mom and grandma packed my "duffle bag" and off we went!
At the hospital we ran into some old friends. Turns out that our McMaster neighbour's have the same pediatrician as me! We got reacquainted with Logan's parents, who happen to live a few streets away from us! We had to wait for the pediatrician as she was running a bit behind as she was also on call. So 3.5 hours later I had my vitals and blood results:
My lungs are clear and I am nasally, so the Dr. Has suggested Hydrosense, apparently a box with a dolphin on it.
Weight: 3.85 kg (8lbs 7oz)
Height: 22 inches
Ph: 7.278
Lac: 6.3
The blood nurse used a tourniquet on me which was against the doctor's orders, and as many of you know now, lactate has to be taken by "free-flowing blood" or else the result is inaccurately elevated. So in theory my actual lac level would be 3-4.
Mom has emailed Amy and Dr. Kozenko about my results and both are happy with my weight gain, Amy has since increased my feeds to 80ml. We just need to work out my poop first...
Metabolics: Dr. Kozenko
Neuromuscular: Dr. Tarnopolsky
Dietician: Amy Pender
Pediatrician: Dr. Rosner
Nurse: (CCAC) Michelle
Case Manager: (CCAC) Julia
Occupational therapist: (CCAC) Sheri?
Speech Therapist: (CCAC) oral motor skill
So you see, I have quite the crew!
Upon arriving home My mommy was supposed to make my formula from a recipe given by my Dietitian. I am on the powdered Similac Advance, however my concentration is higher than normal. I need more calories than the normal kid in order to grow. My mom measured out 670ml of water and 12 scoops and mixed it all together and fed me for the day. The next day my dad made note that the instructions were written as "measure 12 scoops and THEN add water to a FINAL volume of 670ml". Dad is making my formula from now on.
Some of you may be thinking, my dad isn't perfect either! He actually slept through my 1am feeding last Sunday morning! Most of you are aware that I eat 70ml over the hour and every 3 hours. This is done to treat me like a normal baby and also so my sugars do not tank.
So going without eating from 10pm to 330am was a big deal! How did I fare? Well I woke up crying for food and I was awake for hours after just playing. Meaning I can keep my sugars! To make up for the missed meal, I was stuffed with 80ml for my feeds the rest of the day. I tolerated the increased volume, and had no pukes or spit ups.
 |
| I feel yucky! |
 |
| I spent the entire day over my Grandma's shoulder |
This past Friday I felt like hell! Since I've been home I have developed a cough, a throaty staticy sound accompanied with a motor like sound and tons of mucous! On friday I was so mucousy I almost choked myself to death on multiple occasions. The nurse came by and listened to my lungs, she said the sound is mostly in my nasal area but I did have some fluid in my right lung. The hope was that I would work it out on my own. Mommy was so scared that she said she'd take me to the hospital if I didn't sound better when Dad came home. I did and I got to avoid the hospital. The nurse came by monday and said that my lungs sounded better and that it was good I can clear it out on my own.
Which brings us to Tuesday! I was being a little fussy through my feedings over the last few days and this morning I was screaming and spitting up. Mom was concerned and asked Dad why I am so broken. Dad said that nothing is wrong with me, and I am just being a baby. After dad left for work I threw up my whole meal! Mom said that I must be constipated, so back on lactalose I go! Just before we left to go to my first pediatric appointment my mom remembered a little trick from a friend... Use the thermometer to stick up my bum to help me loosen what is stuck. So after 5 minutes of poking and probing I let a bunch of pooh go to my mom and grandma's excitement and astonishment. I am still backed up but at least a fare bit came out. Mommy gave me some Tylenol to try to ease my discomfort or put me to sleep... Didn't work. So off to my pediatric appointment!
My appointment was at the pediatric outpatient clinic at Grand River Hospital. My appointments will continue to be there as I need blood work every week. The blood tests I need are only done in hospitals! My mom and grandma packed my "duffle bag" and off we went!
At the hospital we ran into some old friends. Turns out that our McMaster neighbour's have the same pediatrician as me! We got reacquainted with Logan's parents, who happen to live a few streets away from us! We had to wait for the pediatrician as she was running a bit behind as she was also on call. So 3.5 hours later I had my vitals and blood results:
My lungs are clear and I am nasally, so the Dr. Has suggested Hydrosense, apparently a box with a dolphin on it.
Weight: 3.85 kg (8lbs 7oz)
Height: 22 inches
Ph: 7.278
Lac: 6.3
The blood nurse used a tourniquet on me which was against the doctor's orders, and as many of you know now, lactate has to be taken by "free-flowing blood" or else the result is inaccurately elevated. So in theory my actual lac level would be 3-4.
Mom has emailed Amy and Dr. Kozenko about my results and both are happy with my weight gain, Amy has since increased my feeds to 80ml. We just need to work out my poop first...
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