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July 27, 2018
Uneventful day in Maxley land.
We are slowly adding in formula 2 feedings a day. Formula has more fat and they can control exactly how much fat and calories he gets. They will slowly get him to full formula feedings. They think he might gain a little faster on it.
We also met with endocrinology today. They are going to make his glucose drop at some point tomorrow and test his blood sugar at that point. They are trying to get a better idea of why he can’t maintain his glucose levels. It is pretty common in IUGR (inter-uterun growth restricted) babies but even still it should be normal since he is term now. It may have something to do with his chromosomal abnormality but it’s too hard to know since there is such little research on it. They will hopefully know more after the blood tests come back next week.
They may put him on human growth hormone which will help him grow and help maintain his glucose, we will see.
Great Grandma came up tonight with Aunt Codi and Great Grandma got to hold him for the first time!
We are slowly adding in formula 2 feedings a day. Formula has more fat and they can control exactly how much fat and calories he gets. They will slowly get him to full formula feedings. They think he might gain a little faster on it.
We also met with endocrinology today. They are going to make his glucose drop at some point tomorrow and test his blood sugar at that point. They are trying to get a better idea of why he can’t maintain his glucose levels. It is pretty common in IUGR (inter-uterun growth restricted) babies but even still it should be normal since he is term now. It may have something to do with his chromosomal abnormality but it’s too hard to know since there is such little research on it. They will hopefully know more after the blood tests come back next week.
They may put him on human growth hormone which will help him grow and help maintain his glucose, we will see.
Great Grandma came up tonight with Aunt Codi and Great Grandma got to hold him for the first time!
Glenn and Iona Rozenberg — 7/28/18
I am sure great grandma was thrilled to get to hold Maxley. We spoke with her at the funeral about him and it was the first time we realized how rare his chromosome condition is. Stay strong.