Thursday, May 6, 2010

We're In It For The Long Haul!

Yesterday we were all making this face. In last weeks weight conundrum I completely forgot to mention that yesterday was Amber's Early Intervention Re-evaluation.

Can you believe that she was this tiny when we started!
Its been six months and she's made so much progress. When she first became eligible she did not have a diagnosis that would keep her in the program for 3 years (the maximum time). This meant that every six months she would have to be re-evaluated to make sure she was still eligible to stay in the program. At the beginning of the evaluation yesterday I gave the development nurse a copy of Amber's last skeletal survey. At the top of it under Indication (amber's description) it says; 6 month old with microcephaly and multiple congenital anomalies. Apparently microcephaly is a diagnosis that will keep Amber in the program for the full 3 years! This means we don't have to worry about anymore evaluations or whether or not she'll stay in!
Side Not; microcephaly means small head, however all of Amber is small so technically her head is proportional to the rest of her body also, under skull it says "overall appearance of the skull is normal".
After they found out she has microcephaly and would be in for 3 years they didn't really need to do the evaluation but they went ahead and did it anyways just so we could figure out where she is right now. It went really well and she scored really high in some areas and not so well in others but better than I expected. I'll give you her scores now and kind of explain them. Keep in mind she is 7 1/2 months right now.

Cognition: 7 months so right on target!
Gross Motor: 3 months. This isn't great but its because of her low muscle tone, can't lift head or sit up
Social/Emotional: 9 months She didn't cry when we left the room, I think it was because she was comfortable with the lady that comes every week.
Speech/Language: for expressive language she is 5 months because she doesn't say consonants yet (its a muscle thing so its harder for her) For responsive she is 10 months old! She turns her head to her name, knows/responds to names of things example if you say wheres daddy she looks or finds daddy.
Fine Motor: 5 months. This isn't too bad I don't know what would have made her score higher. She can pass toys from hand to hand and pull a peg from a hole. She can't sit of her own so they held her in a sitting position to do the tasks. Since she's not used to this position it was harder for her to figure out than if she was in her usual side or back position. She did score higher than they expected.
Self Help: 5 months. She does the right mouth movements for eating but she doesn't want to hold a bottle and she's not super interested in feeding herself.
Overall (from my point) she's a genius! Well they were very impressed by her. The evaluation shows us that we need to keep on focusing on language, stretching and muscle strengthening. Even though its still a little bit early they want us to start working on self feeding. We found a great cup for her yesterday and now we're looking for some good utensils for her.
I didn't get any pictures but we tried the cup last night. Sometimes she gets that she's supposed to hold the handles but she'd much rather be feed. It's really hard for her based on her hand positioning and lack of upper body strength to get it in the right position.
I have even more exciting news! We found a new car seat yesterday!! It's upright and really big but hopefully she'll pass the challenge and be able to use it! Another surprise we're actually supposed to have her car seat challenge today. The baby ward doesn't want us (the poops!) but the Dr office said they could do it and then called back and said they couldn' we'll see what actually happens.
I think that's all for my exciting news!
We've been enjoying looking at these little toes all the time! It's finally cool and rainy today so its back to socks, pants and sweaters :(
I have a lot of things I need to do and update about but I promise I'll get to all this coming week!

1 comment:

  1. Hi Sky,
    Thanks for the update on Amber. I am glad to hear that she is making some progress! Good for her....and you! Keep up the good work!
    Aunt Julie

    P.S. Are you coming to visit within the next few weeks?