It's REALLY difficult to find time to get on here and update because Baylee is needing my CONSTANT attention right now, but she fell asleep for a bit so I'll see how far I can get before she wakes up again. We have the ACTH now (at least some) because the National Organization of Rare Diseases sent it to us, along with an application for a grant that will cover the rest. What a HUGE blessing! Speaking with the nurse at Dr. Pransitelli's office in Illinios, (he's the only expert of OMS) the actual ACTH is the only type that puts kids into remisson, the synthetic type works to an extent but isn't as effective. So we have it now, but our home health nurse can't come twice a day so I have to give her a shot in the evenings, which is pretty hard for me because I really don't want to hurt Baylee in any way, but if it will help her to recover than I will do it.
Today I was trying to apply for disability for Baylee, and had to set her down for a minute because I couldn't hear anything on the phone, and she got SSSSOOOO mad at me that she army-crawled over to me! I was so excited! So hopefully she's going to be making some real progress sooner than we expected.
Tomorrow we have the nurse coming in the morning, and then around noon the physical therapist will be coming over to work with Baylee, and around 4 the occupational therapist is coming. So hopefully that will help her out. We're definitly praying that it does!
4 comments:
She army crawled! YEEWHO! You should get her mad more often...hee,hee,hee. I am happy to hear there is progress and she is in our prayers. LOVE YOU!
You're exactly right, Holly, The time's I seen her move the most is when she is extremely happy or really angry.
yay!!! I'm so grateful for blessing your family is receiving. That makes sense she would move more when happy or sad. Much more adrenaline at those times. you are always in our prayers.
You'll be amazed at the hidden reserves of strength you never knew you had. But it's tiring effort all the same. Lotsa prayers.
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