Wednesday, September 1, 2010

Ten Month Report - 1

What a day! I convinced my husband to accompany me to our appointments today so he could hear everything first hand. It turned out my son’s first day of school was only an orientation until 10 am, so we had to pull him out early and drag him along. Thank G-d! He was good company as my husband only wanted to read the newspaper. But it didn’t help that I only got 2.5 hours of sleep last night.  Gili was having way too much fun dancing in her new toy to go to sleep before 2 am.

Here’s the report from all the doctors we managed to see today:

Ophthalmology: Gili has a slight “squint” (cross eyed). They don’t exactly know why her eyes jiggle, but it’s probably her eyes trying to focus. They didn’t seem concerned that I thought her eyes were getting worse.  She has a scar in the left retina (I think that’s where) but it’s not “active” retinitis.  She doesn’t need glasses because there’s nothing we can do about it. She probably won’t see “6/6”, but we won’t know until she’s maybe 3 years old. I assume that’s the European equivalent of 20/20. Come back in 6 months (March).

Professor Amir (CMV specialist): He answered a lot of my questions. I described the odd little episode I witnessed last night (legs tensed up, head tilted to one side slowly twitching), and he did think it was a little seizure, but as long as she can breathe and it’s brief I shouldn’t worry yet. If one lasts more than a minute I should call him right away. (Obviously if she’s not breathing I go to the ER.)

He agreed her left arm seemed stiff and he felt in general that it was definitely time to start physical therapy. (Last time he said she didn’t need it yet.) He said it’s normal that some kids don’t want to eat until they’re one year old, and the runny nose is also common in babies in general. He said I shouldn’t worry about her being contagious because we should assume that all young children carry CMV. If I get pregnant again I should practice careful good hygiene (including not kissing my kids on their faces) because I could still get a different strain of CMV.  She has borderline microcephaly. We won’t be retesting for calcifications in her brain because they can’t do anything about it anything.

Prof. Amir said that there are about 140 CMV kids for whom he keeps records. Gili is one of 5 or 6 who are really “damaged”. (No euphemisms here!) He hasn’t seen deterioration in hearing with the treatment.  And active retinitis and sometimes cerebral problems are often halted. I tried to drag out of him some ideas about what we might expect. (My husband is VERY against this idea of trying to predict the future, but I have a need to plan.  Even if I know the plans will change, I want to know.)  He thinks she will probably walk because she already rolls now.  It seemed from his reaction that she probably won’t be in a regular class, and if she is she will be behind.  Like at two years she’ll be like a one year old.  We will repeat the BERA in 3 months (at 1 year old).

Should I just lie about her age when I don’t feel like explaining things to strangers? Probably not a good habit to get into. Please suggest any clever things I can say to keep from explaining or getting unwanted advice.

Physical therapy: Yes! They actually squeezed us in for our initial appointment today. I love this country! They definitely seemed concerned about her behavior, sight, and stage of development. I DEFINITELY appreciate their concern, I don’t need them to be overly optimistic. But I hope it doesn’t get them down. She’s such a pleasure to work with, laughing and giggling, and I think she responds very well to exercises. We spoke with Nili, who was very kind and extremely helpful. She’s working it out so we will probably get in to see a neurologist on Sunday (when we are going back to see the audiologist.) I just need to have a couple papers faxed over.  She said that we would make a plan based on the findings of the neurologist.  She gave me two exercises to begin at home.  The first involves putting weight on her arms, beggining for 5 seconds and working up to 20 seconds over the next few weeks.  The second is basically tethering her legs together by putting both her legs through one leg opening of a stretchy pair of shorts.  The idea is that if she tries to scoot forward or if I get her on her knees she won't just do a split.

There was a new therapist, named Talia, who was observing and I spoke to her while I was feeding Gili. Gili fell asleep on my lap and I asked her to take the bottle for a second. She was really nice, but I think she treated it like bio-waste, trying not to touch it and thoroughly washing her hands afterward. I not suggesting she shouldn't be careful, I just thought it was worth noting her attitude.  It was suggested that Nili is past her child-bearing years, so she would be less hesitant to touch Gili.  Still I would hope she washes her hands between sessions.

I don’t know if I should be very upset about all this news, but at the moment I am glad things are moving along with the physical therapy and neurology. And I feel very tired, but jittery from the coffee. They have a machine in Professor Amir’s wing that makes different coffee or hot cocoa for about 25¢!  (1 NIS for the coffee,  0.5 NIS for the cup.) 

I think I am starting to become more upset by the idea that there is damage in Gili's brain.  I think possibility of seizures is going to keep me on edge.  Until now I was comforted by the idea that G-d made her this way for some reason that I will never know.  She and our family were meant to have this challenge.   Now I think the idea of all this "damage" is a little scary, not just because I don't know what effect the damage will have, but also the idea that her soul is trapped with this possibly defective body and a mind with which she may always struggle.  There is an idea that G-d does not give a person more than they can handle.  He creates the medicine before the cure; we just have to discover it.  I feel a little honored that G-d thought I was worthy of this beautiful little gift.  I love Gili with all my heart.  She has needed me to rise to the occasion of her challenges, and I believe that being strong for her has made me a better mother to all my children.

No comments:

Post a Comment