Her first appointment was an eye exam with Dr Paul Rychwalski. She had to get her eyes dilated and we thought she would be crabby the rest of the day but she was all smiles. Tim and I really liked this doctor. He was down to earth and explained things in terms we could understand. Avery's eyes looked great. The doctor said she might be just a slight near sighted (can't see far away). He said at worst, she might end up needing glasses in preschool. He said that would be the worst case scenario. She might not end up needing them at all. He said it doesn't matter if she is near sighted; that we don't want her to be far sighted(can't see close up). He said she isn't driving soon or looking at a chalkboard so it doesn't matter. He said what matters now is being able to see a bottle in front of her or her mom and dad's face. We were very happy with that appointment(finally some good news!) She has a follow up scheduled in 6 months.
Her next appointment was with genetic counseling. This appointment wasn't as good. They said her head circumference is measuring small, even compared to other 25/26 weekers. They took into account her head circumference, small stature and hearing loss and now they say she might have something called Kabuki syndrome. Here is a link to Kabuki Syndrome.
http://ghr.nlm.nih.gov/condition/kabuki-syndrome
People with Kabuki syndrome have developmental delay and intellectual disabilities. Personally, I don't believe Avery has this. I think she is just a small girl that is going to be developmentally delayed due to her being born 15 weeks early, not because she has some sort of "syndrome". We asked the genetic counselor, what does it matter? She is already going to be getting early intervention from being born so prematurely. He said it matters for 3 different reasons.
1. If she does have it, she will need early intervention.
2. If we decide to have more children, we could pass it to our next child.
3. When Avery is older, she can pass it to her children.
It ranges from very moderate symptoms to very severe. He wanted Avery to get blood work drawn to check and see if she was positive for it. We ended up having her blood drawn to check, though it really doesn't matter. He said even if the test comes back negative, we can't rule it out. (why even get the bloodwork then??) Tim and I swear they just want to do research on Avery. If it comes back negative, we are not going to see genetics again. We are done with them.
Avery is still getting over being sick this past week. She is still pretty congested but she is eating much better. She ate two full bottles for me yesterday. She is getting better at balancing/sitting by herself.
She has a pre-op appointment tomorrow so her pediatrician can clear her for surgery on April 23 and she will be getting her last RSV vaccine. She then has an appointment on Thursday with Dr Jen Peterson. She is a neonatologist at Hillcrest that follows up with all babies born prematurely. I believe we follow up with her at 6 months, 1 year and 18 months.
This is Daddy and I at the eye doctor's.
I helped Mommy work on the blog on Wednesday. I was sitting up all by myself!
I like talking to Daddy
I got blood work on Friday. I only cried for a little bit.
Then I was big and strong. Look at these guns
We finally got the computer hooked up to the tv. Now I can watch all the free Baby Einstein videos that I want!
I am sitting much better in my bumbo seat
I am waiting patiently(for once) for my food to be heated up.
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