Hannah at 4 months old
(New post at my daily life blog – click to read)
Unless we hear something about Hannah’s skin biopsy, which I doubt, the only thing we have going this week is a meeting to come up with a IFSP (individualized family service plan) with Early Intervention. Two people are coming over on Wednesday morning, and we were told it would last a couple of hours. Being that she is only 4 months old, I’m really curious to see what they recommend. However, I do plan to take them up on their posted services about finding support groups for both Daddy and I and for siblings if we need to take advantage of that.
We pretty much had a complete denial weekend, and honestly, we didn’t talk about her condition much at all during the past few days until later this evening on the way home from dinner. It was a nice mental break, I guess. Denial would also be a good word for it. But it was just nice being a family of five, cleaning the house after the carpet fiasco last week, and starting to get the holiday decorations ready.
I did receive the following email response from our genetics doctor. His nurse told me about 10 days ago that she would check to make sure the skin biopsy is growing okay, but she has yet to return my messages. So annoyed with that, and I will try again THIS WEEK and follow up on this. If for some reason this skin biopsy fails to grow, I want to know as soon as possible, so we can get another one done and get some answers.
Anyway, here is part of his email…
The fibroblasts will be tested at our lab for Gaucher and also sent to the Lysosomal Disease Testing laboratory at XYZ where the cells will be tested for NPC as well as a screening panel for other enzyme deficiencies (a “full” workup). These tests do not guarantee that we will have a diagnosis after they are performed, but we will have to cross that bridge when we come to it.
On a separate note…
Hard to believe I was pregnant with Hannah at this time last year but didn’t know it! Wow, if I knew then what I know now, I would not have believed it.
I posted a bunch of new pictures on facebook of Hannah, Big Boy E, and Little Girl A. But here is my favorite one of Hannah! I’m still working on fixing my shutterfly account.
Early Intervention is a wonderful resource. We had such a positive experience with them. I’m glad that you’re following thru on that. It’s ok to have a denial weekend if you need it.
Looking at beautiful Hannah. I love that picture. she looks like Robert but has your expression around the eyes. What a little sweetheart!
(I still plan to meet her soon!)