Jason and I are growth hormone injection trained! The training was this afternoon, and way easier than I had anticipated. The needle is minute, thin as a hair, and the pen makes it easy peasy to administer the dose.
Ellie's IGF-1 level test was run this morning, it takes a couple weeks to come back.
We have to pay for needles, alcohol swabs and the sharps disposal box. But, because we are in the at home program, they should be covered. I am going to look into that on Monday.
If Ellie's IGF-1 levels show growth deficiency, we will qualify for PharmaCare coverage of the drugs. But, if the test shows adequate production, we are in for a battle. Ellie is no longer even on the PWS growth chart. She is too small. 0 percentile for weight and length. Crazy. We haven't seen a huge increase in growth since she started the BiPAP, so that isn't making much of a difference in her growth, but her development is tremendous. Jay hadn't seen her in a couple days, and he notiiced such a change. She still struggles being on her belly, but has no problem rolling from left to right and back again, to follow toys, to track someone walking across the ward.
It will be interesting to see how she reacts to the hormones. I asked, they said it would take 3-6 months for her to really grow. I don't know if that means catching up to her peers, or what. We will see!
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