Ellie has now been home with us for the same amount of time that she was in the NICU. I can't really believe it.
Today, we met with the endocrinology clinic. I went with Ellie, on my own. Everyone was lovely, and they didn't really do much, other than weigh her, measure her and look her over. Little miss is still little. 8lbs9oz, and 19.75", at two months adjusted leaves her at the bottom of the chart for weight, and nowhere near the chart for length, only at the 0.1st percentile. Tiny nugget.
On September 7th, we have to take her in for her growth hormone stimulation test, a thyroid test and cortisol levels test. I was told to expect to be there for about 6 hours. SIX HOURS.
Then, we need to do a sleep study, and we can start on growth hormone. They said it was likely she's deficient in gh, which is why she's such a runt. If she is, then the cost of treatment is covered, which would be good.
I'm feeling sort of down today. I had the walk to look forward to, but that's passed, and now I actually have to face reality. I'm scared for Ellie's future. I know she has so much support, but I'm so scared other kids are going to be mean to her if she can't speak clearly, or leave her behind if she can't keep up on the playground. Sigh... I wish I could fix things, make everything alright.
But, I can't. I'm just me. All I can give is love and support.
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