current health status
past health status >>
Through 6/29/07-
- Positioning- Finding a comfortable position for Kelli to sit in on our lap is becoming more and more challenging due to the extreme amount of pain that she is in at times. We are thrilled that she has allowed us to sit her in a Tinkerbelle Bean Bag (specially made for her by one of my friend’s) for short periods of time where up until now, only human laps were tolerable/acceptable for her. This gives her big brother much easier access to interact with her as well. We really have to be careful of her positioning in her bed now. When we lay her down to sleep, she doesn’t move her body all night, therefore, she is beginning to develop pressure points/bed sores.
- Muscle Spasms- Kelli definitely continues to have these but it has been incredibly difficult trying to determine whether the MLD is the cause of a lot of them or whether pain from her stomach or even anxiety moves her into them. She will now stiffen her body and completely arch herself backwards when in pain. Also, over the last few weeks, her legs have been much more flexible yet when she is in an incredible amount of pain, she locks her upper body (arms bent tightly against her sides, elbows locked, hands locked in fist positions.) We can’t tell why this new locking position is occurring—is her stomach hurting? is she only having upper body spasms?
- Speech- Kelli stopped talking a few weeks ago. She is unable to say anything at all now. We just have to talk to her as we always have knowing that she can still understand what we say but just can’t communicate back. She does try to smile with a tremendous amount of effort.