The hallmark symptom of RS is this persistent hand wringing. It’s been described as a hand washing motion, but I don’t know how ‘they’ can call it that. It so is not. What the girls do with their hands is so individual to the girls. Some clap, some roll and rub, others constantly mouth their...
First of all, some AMAZING news! As you may know, I’m originally from Orlando Florida. We have been desperate to go home and my family haven’t even met Grace yet. So what do I do when we need something? I prayed! And then what happened? I WON a holiday TO ORLANDO! I don’t even know...
Finally MRI day happened. After 3 previously failed attempts (vomiting, snowed in, etc etc) Grace got her much needed MRI. She was a trooper and didn’t whine until coming out of sedation. Not even when she missed her breakfast due to fasting since dinner the night before. There was a scary moment, though, when the...
Originally posted Dec. 17th, 09 We were summoned to the hospital where we met the specialists who have been caring for Grace who sat me down. It was kind of like a movie – me on one side, them on the other. They very plainly just said “Grace has Rett Syndrome” and then we proceeded...
Originally posted Dec. 16th, ’09 Tonight just before jetting off to a Christmas party, the hospital Dr. finally called. Just as he said he would if there was a problem found in her genetic blood tests. I immediately knew what he was about to say and then he said it: the genes are positive for...
Originally posted Dec. 9th, ’09 It’s been a few days so incase anyone is wondering about new developments, there aren’t any MRI is on Friday We’re waiting for the results of the genetic blood test any day now Waiting for our neurology appointment to come through in the post Waiting to be contacted by the...
Originally posted nov. 30th, ’09 We’ve been getting loads of love and phone calls from friends and family about Grace’s big appointment today so I’m hurrying and writing an update so we don’t have to tell the same story a billion times Today we met the consultant (that’s British speak for Specialist) who took an...
