We just got home from our doctor's appointment today.I have a lot to say about it in terms of information and thoughts and feelings but I know so many people are waiting for news that I thought I would dash off the minimum basics:
1) I really appreciated the genetic counselor. She sat down with us and took the time to go through our chart and explain everything in it and then sit there until we ran out of questions. It was based on that meeting that we decided to not get the amniocentesis - more on all of that later.
2) We had a different sonographer this time who I felt was much better than the first one and she was able to capture much better images of the spine than we got on Monday.
3) According to the doctor, with one minor exception and one large exception, there is nothing wrong with our little Annabelle.
4) The minor (relatively) issue is that our little girl has two feet turned inward - the term is "club foot" but sounds worse than it is and it is treatable with braces, therapy and surgery (if needed)
5) The major issue is that it seems that there is an opening in the spine at the T4 or T5 section. The doctor says that the neural tissue is exposed from there on down. The doctor (who admits she is not a neural specialist) says that it is unlikely that she will ever walk.
All is not despair. A battle is joined and this is far from over.
More later - your continued prayers and encouragement are so greatly appreciated, you don't even know.
4 comments:
Sounds a lot more hopeful than the last appointment and i pray that it continues to go in the direction. Let's pray for that opening in the spine to close. She (annabelle) has got some time left cooking in Holly to do that.
Im surely not a doctor but I do now that God works some crazy miracles! That's what I'll be praying for!
Aw, I already feel so much affection for sweet Annabelle. I cant wait for you guys to see her, shoot, I cant wait to see her!! :) She's gonna amaze those doctors I just know it!!!
This sounds very familiar. I was in the same position late last year going to doctor appts and having many ultrasounds because I was pregnant with a son with spina bifida at the T5 level with club feet and hydrocephalus. Its been an emotional roller coaster but he's now 6 months old and I keep forgetting he's paralyzed from the waist down and his club feet. He's just my little angel with big blue eyes and big smiles for me. I now just look forward to all the cool family acitivites we'll do someday with him in a wheelchair. I'm sure you'll feel the same way with your little girl. I feel good about thinking of all the activities I'll be able to do with my son and not so much about the ones I can't.
Hi
My baby son Noah has SB myelo as well. The doctors said it was T6/7 which is pretty high. He is paralyzed from the waist down. Like Annie, Noah has bilateral clubbed feet. But he does not have hydrocephalus which is uncommon. I cant complain though, its one less set of issues to deal with.
I love meeting other SB moms and dads. Do you live in New York? Sorry I know this post is old but I wanted to introduce myself.
Elizabeth
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