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...
It’s been a while! Some bullet points to keep you updated: Grace has started her MDA (multiple disciplinary assessment) which is two weeks with occupational, physical and speech therapists and then in two weeks, we will have a feedback meeting which will include the therapists and her doctors. This is where they all tell us...
I was standing at the microwave heating Grace’s food and I realised something: I was holding her on my hip with one arm and she felt really solid and strong, not floppy and falling out of my arms. How long have I been able to hold her like this without realising it? She felt properly...
Grace’s specialist called last night and asked to come over this morning (so naturally, Steven and I were up till 1am cleaning!) She’s so so lovely and she came over because she hadn’t met Steven at the initial diagnosis appointment because he was at Jack’s school nativity show. We talked about lots of things and...
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...
