I finally got a call back from the pediatrician about the peds geneticist, I have the number and will call Monday. Not really focusing too much on the Aniridia, we are trying to get her through her first cold. Other than a nose which will not stop running and a low grade fever, she seems fine. I just get concerned when my little ones fall ill.
Sadly we had an issue with her insurance and spent the last week fixing that, I also have to call Monday to make sure she has the same primary care doctor listed on her files as Meghan and Kara, for some unknown reason, they switched her to a new one.
She seems to need a lot of cuddling with her cold, she stands up and asks to be held a lot, and I am not complaining a bit. It is good to see her coming to me and Daddy for comfort, I think prayers are being answered here.
We canceled her appointment with the Neuropsychologist because she was sick and we need to get the Aniridia tests out of the way first. Gillespie Syndrome does list autism as one of the issues folks with it have, so we need to see what we are facing here.
Doesn't change how much we adore her, how sweet yet feisty she is, and how well she seems to be doing.
Her favorite thing is to go out and sit in the sun, she adores the sun, the warmth of it. She is always so cold to the touch, no body fat to keep her warm either.
She has some fat on her thighs and belly now, it is good to see, and her pulling to a stand all the time is helping her quads, hamstrings and calves develop.
She is very strong, a wiry strength with a killer grip. I always think about Andrea saying watch those earrings, which I do, I stopped wearing them. The other day Amanda ripped the collar off my tee, it is ruined, but who cares, it is only clothes. She has a habit of grabbing your clothing when you are lying her down, I think it scares her to be lowered after we hold her.
Her brothers all agree she acts less scared and more outgoing, today Julia said "Mom, she is acting more like Kara now" and she is right, it happens so slowly, you do not notice until all at once.
No pictures, I am sorry, Julia has her camera with her most days, and mine is broken, and only 2 years old too, how depressing. I dropped it in Estonia, probably broke a connection somewhere. Looks like we need a new digital camera, maybe for my birthday? (hint to DH here LOL)
My journey
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On May 31st, I left with my dog Keira from Arkansas headed for Arizona. I
had my job transfered to Arizona and knew I had 1 options for a place to
stay. ...
2 years ago
3 comments:
I am so happy to hear how Amanda is coming out of her shell.... maybe being sick with a cold was a God send... to help her come out of that shell faster so that she can know the full love of her family... and also be able to show you all more love.
Kris,
Glad to see an update. I's good to hear the girls are finally feeling better. Cant wait till they are completely over this cold. I am so gald Amanda is starting to trust everyone and that she is gaining a tiny bit of weight. Sitting in the sun that girl is going to end up with a nice tan. I bet the sun feels good soaking in to her skin.Take care
carol
Amanda sounds like such a little sweetheart. She is a special GIFT, that's for sure.
Amy
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