So I didn't have time to set up email posting, although I had a few things I wanted to share.
As seems to be a pattern in our lives lately, no issues were solved, but more were discovered.
(A little background... at the evaluation it was discovered that she favors one side and that it seems painful for her to lift her arms. At the hearing test it was discovered that she has fluid in one ear and failed her hearing test.)
So this time, there were more discoveries. We came to the neurologist... she asked many questions and immediately recognized some dysmorphic features: prominent lines of the triangle between nose and mouth, little facial expression, ear shape, wide set nipples... all may be hints of a chromosomal issue, she believes. She was also very concerned about her high pitched cry but was relieved to hear her cry deeper when she was in pain.
She tested her reflexes with that little hammer. Her legs were great. Her arms had NO reflexes. She tried to lift them... nothing doing. Adel winced and started to whimper, eventually full out crying when the doctor didn't relent.
The neurologist tried to push on spots on Adel's upper arms, shoulders and collarbone and came upon a few spots that really hurt her to touch. She suspected that her collarbone was broken at birth and grew back wrong, so we went for an x-ray. Alternatively, it might be part of her chromosomal disorder.
She didn't want to do an MRI, B"H. It requires anesthetizing the baby and can be dangerous. She wants to wait to see the genetic testing results. If it's a known disorder, they will know what's going on with her brain without an MRI. If the tests are inconclusive, they will wait for her to get bigger and do an MRI.
More about the x-ray and the ENT appointment in an upcoming post.
Dovy's neurologist ordered a MRI just to see his cerebellar size (if it's small he will have more balance and coordination issues). I went back to my ped & told her that I refuse to give him anesthesia just to assuage his curiosity. She agreed with me. Sounds like you had an eventful day. My day involved sending Lizi off for her first day of BY & picking up an inconsolable child with a fever of over 104 at the end of the day. At least Chayale is going to playgroup tomorrow...
ReplyDeleteGlad that you got in to see the Neurologist! Did they draw blood yet for a chromosomal test or are they waiting on that? Will they do the micro array! We are thinking of you and praying for you as you await more appointments and answers/test results. Keep me posted.
ReplyDeleteCR, I'm so sorry to hear about Lizi's first day. :( What a rough start.
ReplyDeleteWhat does your neurologist say about Dovy altogether? What kind of issues has he pinpointed? I'm glad you made the decision not to do an MRI, especially since it's not an important reason to do one.
MIL is into doing everything fastfastfast and said that we should go for an MRI before the neurologist appointment to save time. I also want to do everything fast, but to do such a risky thing when it might be unnecessary, and we will most likely mess up without proper instructions if she DID request to have it done. But she said Adi needs to get bigger.
Lauren, the blood test will be done by the geneticist in 2 1/2 weeks.
ReplyDeleteNeuro said motor dyspraxia & some kind of social something (he wasn't exactly sure. He wanted me to go for the tests before deciding on therapy. They even called me to ask what was taking so long. They also wanted blood tests. My father said I can come up to his office to have them done because they have more experience with peds than the general lab & also I won't have to wait for hours for the privilege of having the lab vampires to bruise my baby to oblivion and back.
ReplyDeleteThe therapy decision will be made by my ped. She wanted to see him 6-8 weeks past his 9 month checkup, when we pinpointed the original concerns. We're getting there. So I'm just waiting.
Oh & Lizi has strep. Again. I have been referred to an ENT to evaluate her tonsils. I anticipate more fun in the near future.
ReplyDelete