We've had some busy days but nothing major. Just normal busy. It's nice that way! :)
Peanut had her annual bladder and renal ultrasound on Monday morning. Hopefully the results will show nothing new, and we will continue on as we have been. We have been cath'ing her for over a year now, and she hasn't had a single UTI since we started! What a change from the monthly infections she had before that. Cross your fingers for good results, but I am pretty positive they'll be fine. :)
After the ultrasound we walked across the street to the endocrine clinic and had her blood work drawn. They are testing growth hormones, cortisol, thyroid, and I don't remember what else. All things to help determine why she isn't growing in height hopefully.
Speaking of her growth, I have come to a decision about the growth hormones. Unless her labs show that her levels are low, I am not willing to put her on them. The endocrinologist recommended a small dose to help with her muscle strength, even if her levels are normal. From talking to her PT, I don't agree with this. Her muscle strength is not bad, it's her muscle control that's the bigger problem. When she wants to stand up, she can, with minimal support. But sometimes her body seems to betray her, and she can't get the muscles to do what she wants them to. This is not a strength issue, it's a control issue. So I am not willing to put her on artificial hormones, unless her levels truly are low.
Her new AFO's came in finally, we went to get them yesterday. One of hers broke in half over a month ago, so she's been struggling to walk without them for a while now. Well, we tried the new ones on at the office and - they don't fit at all! They were definately not made well. So they are getting sent back, and we are starting fresh. This means another 3-4 weeks without AFO's, unfortunately. :(
In other issues, life is just busy lately! Tonite I have a PTO meeting for Monkey's school. This year I am the "Donations Coordinator". As for tonite, I will be the President for next year. It's a lot of fun, but a lot of work! I have been the president's side kick all year, so at least I will know what I am doing. Tomorrow night we have BINGO night at school, which I am co-chairing. It'll be fun!
I am in the midst of dying my hair, it needs to sit 5 more minutes. I better go get ready to shower it out!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
2 comments:
You do sound busy! But, like you said, that can be a good thing if things are going fairly well!
Do her AFO's work well for her? Gavin is supposed to be fit for some in the (hopefully) near future. Hope Peanut's come back soon and right this time!
Have a great and busy week! :)
I hope all those tests come back great!! We are praying for good results!
Sorry about my last message. I think it came out a little wrong. I reread it and I didn't mean its nice to see your daughter like that. I just meant its nice to meet someone else that I can talk to or relate too. I hope that makes sense. That whole message was a little crazy. I think I am just a little overwhelmed right now and everything that I am thinking comes out different when I type it. Anyway sorry if that was weird or rude.
We are praying for your little peanut.
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