Home for over a month now
Allie has had some mild improvements. Those big smiles she had in China show up sometimes, but less often lately it seems. She seems to have more energy. But what came with this a terrible time getting to sleep. She was fussing for up to 2 hours each night before going to sleep before China. But we were seeing 2-6 hours of screaming and fighting before bed since the return from China. We finally relented and are using Clonipin prn before bed. Now she is a bit more foggy during the day. She still has high, tight tone, but it has gotten better. She is looser, esp. in her arms. She actually held a push up for quite a while last night on Tait. She is tolerating standing more and even took some steps in the gait trainer. Her vision therapist at school feels her vision has definitely improved since China. She is now making definitive choices with her vision. We have also noticed some intermittent verbalizations/ babbling. We hope there is more to come, especially improved trunk control and decreased kyphosis and prevention of scoliosis.
We are temporarily moving to Orlando, FL for Conductive Ed (www.cecfl.org). Our plan is to leave Mass. on Aug. 23 (the 3rd anniversary of her first EEE symptoms) and stay through early Nov. We will decide if we can stay in FL for the program while we are down there. She needs the intensive therapy they can give, even if it costs us plenty.
Our email is taitntina@verizon.net if anyone wants to keep in touch.
Tina, Tait, Allie and Megan (and Grandma Charlotte)
Add comment August 13th, 2008
