Grace for Rett » Grace's Life with Rett Syndrome

MRI Rescheduled }:( New Frustrations

Originally posted Nov. 21st

We got to the hospital yesterday for Gracie’s MRI and the anesthesiologist decided to reschedule it for another day. Oh, how I cried! But I know that this happened for a reason.

This morning has been a sad one for me :(Grace has been trying to touch my face when I’m looking down at her, but she can’t get her arms to do what she wants. She can swing them around aimlessly (think: Ace Venture 2 when he got shot by the poison darts:) , but can’t touch what she wants to touch, not even a target as large as my head 6 inches from her face. And she still can’t hold a cookie and doesn’t even have the will to eat them anymore. If I put a cookie in her mouth, she won’t even bite it. Through all of this, though, she has maintained a really good appetite for puree’ foods and her milk from a bottle so she is just as chunky as ever!

So now we’re just waiting for her new MRI date and her big day on the 30th where we meet the specialist who will spend an hour assessing her and going over her test results. However, if the MRI doesn’t happen soon enough, they won’t be part of the results which is quite a big deal.

On a good note – I won second place in the Blurb Book contest for which you all voted! THANK YOU for taking the time to vote for me. I won $1000 to put towards finally getting us home to Florida for a much-needed vacationw with the kids. We are praying into the time to go and hoping it can be around Feb. If you remember, we were supposed to be there this month, but those plans fell through. God is always one step ahead – if we were there, all of this with Grace would have happened away from home with no health insurance. *whew*!

F a c e b o o k