Her eye doctor appointment went better than I expected. I kept thinking how much I hate getting those eye drops in for dilation and sitting there staring into those machines. How the heck would they get an almost 4-month-old baby to do that? Well, they used drops that first numb the eyes that supposedly feel […]
[Continue reading...]Pediatrician Visit
Hannah is 13 lb 1 oz! I cannot believe how much she has grown! I mean, she was 12.8 lb when they did her skin biopsy last week! Crazy, crazy! Her liver does seem bigger to him, maybe by a centimeter or so. Her platelets are holding stable at 103,000. Her spleen is still enlarged at […]
[Continue reading...]Not wanting to let her go
With all of Hannah’s medical appointments and everything, Daddy and I agreed that I would not go back to work yet. Even though the medical bills are starting to pile in and we had to get Daddy a new car because his 8-year-old car finally bit the dust, we figured we are still going to […]
[Continue reading...]NPA and NPB ruled out!
Great news — the Neimann Pick A and B tests came back negative!!!! HUGE relief. The doctor said that at this point he basically has a list of possible diagnoses, and he is just going down the list starting with the most likely…Gaucher’s is still on the list even though it seems unlikely at this […]
[Continue reading...]Where we are today…
Where we are today… Hannah is almost 3-1/2 months old already, can you believe it? Skin biopsy on 11/12. This is so they can get a full DNA and enzyme test on Hannah without having to get bloodwork each time. Also used to rule out/rule in Gaucher’s disease. Opthamology on 11/19. Meeting to do a […]
[Continue reading...]Another piece of the puzzle
Dr. M, the hematologist, is out of town until Wednesday. But Dr. B, our pediatrician who I absolutely love for how much he goes out of his way to help, looked up the results of the liver function tests for Hannah from last Thursday. They all were normal with the exception of an elevated GGT […]
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