We finally got in to see Peanut's neurologist this morning and go over the MRI request that we've been waiting on since the Microcephaly Convention. He was definately in agreement that it seems like either a spinal cord issue or a chiari malformation. Her arms have mostly normal muscle tone, her legs have always been low tone. Now they are high tone. Her ankles are getting worse and worse, rather quickly. He says we need to keep her AFO's on more during the day now, not just when she's standing or walking in her gait trainer. He's concerned that her ankles don't bend well any more. :(
He put in for a full spinal MRI, and I am just waiting for them to call me back to schedule it. Hopefully it will be soon!
I also took Peanut to the pediatrician this afternoon, because she is covered in a rash. Tiny little pink spots everywhere. He said it's probably the tail end of whatever virus she had last week that ended her up in the hospital.
I hope the MRI is scheduled soon and we get some answers. I am so hopeful for something to show up that is repairable!
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.
5 comments:
Hoping it is repariable too. Waiting is sometimes the hardest part!
I'm glad they wrote for that MRI. We are for sure going to Disneyland on the 20th of August. Thats Tanners birthday so we don't have to pay for him. Don't you live in Huntington beach?
Praying that her rash goes away soon and that you get some good news on the MRI! HUGS!!!
Did you make a post about the mitrofanoff on your blog? If so what was the date. He is ready to do a vesicostomy. When we were there about 3 wks ago, he said he didn't want residuals more than 30 cc. Here are always like 90 to 120 sometimes 150. He also said if she had one more infection which she does, e-coli. I just don't think I want to deal with him.
I need to go read your blog. i have been so scattered lately and not keeping up.
Cathy
Praying the MRI will get done quickly and give you some answers
Post a Comment