Endocrinology Update
Because Cedie has not gained any weight since her discharge on 5/31/06 and has only grown 2cm in height, her endocrinologist did some preliminary growth hormone testing back on 9/18/06. He was also concerned that her "soft spot" is still very big.
They just got back to me yesterday with the results (I had called at least once a week since the 1st of October- but, because her case is so involved with a variety of all of her other problems, it took awhile for the Dr. to get it all together). Not surprisingly, her results were abnormal.
Therefore, he has ordered some more tests. On December 11th, we will check into the metabolic lab at LeBonheur Children's Hospital at 8am. We will have lots of blood work drawn testing a variety of different levels and we will be doing a test which will tell us more about her growth hormones (or lack thereof). We should only be there for approximately 8 hours.
Unfortunately, she will have to get an IV which never works out real well for her. Hopefully luck will be on her side that day and she will only have to get stuck once and the IV will last the whole 8 hours:-)
**As a reminder, the "R" in CHARGE stands for retardation in growth and development so this is not really abnormal for someone with this diagnosis.
They just got back to me yesterday with the results (I had called at least once a week since the 1st of October- but, because her case is so involved with a variety of all of her other problems, it took awhile for the Dr. to get it all together). Not surprisingly, her results were abnormal.
Therefore, he has ordered some more tests. On December 11th, we will check into the metabolic lab at LeBonheur Children's Hospital at 8am. We will have lots of blood work drawn testing a variety of different levels and we will be doing a test which will tell us more about her growth hormones (or lack thereof). We should only be there for approximately 8 hours.
Unfortunately, she will have to get an IV which never works out real well for her. Hopefully luck will be on her side that day and she will only have to get stuck once and the IV will last the whole 8 hours:-)
**As a reminder, the "R" in CHARGE stands for retardation in growth and development so this is not really abnormal for someone with this diagnosis.
posted by Miss N Cedie @ Friday, December 01, 2006
3 Comments:
At 10:48 AM, December 01, 2006,
Crystal M. said…
MY thoughts and prayers that you get some answers and I try to explain that the "r" is retardation in CHARGE and the GI looks at me like I am nuts, I mean Eva is growing just slowly. She is no where on the charts. BUT She is gaining.
Good luck and I hope your day doesnt drag out!!
Crystal and Eva
At 2:13 AM, December 02, 2006,
amy and mighty max said…
How much does Cedie weigh now? I thought she had gained weight...she looks bigger, but it's difficult to tell in photos. Has she grown in length?
At 11:49 AM, December 03, 2006,
Miss N Cedie said…
Last time she was weighed she was 6.39 kg (14.1 lbs). When she left the hospital in May, she weighed 6.5 (14.3 lbs). Her height has increased from 60cm to 62cm (23.6 in to 24.4 in).
She does look bigger though. Her face looks alot less chubby, yet alot more mature. Her legs look less fat but more toned/muscular. I am always shocked when they tell me her weight and/or heighth is the same. To me, all her nurses, and everyone else in her life, she has definitely grown over the last 6 months that she has been home.
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