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Tuesday, November 29, 2011

Reality Check

It's transition time in our household. It's both a blessing and a "curse" that Ella is of a more typical size than most children with her syndrome. We don't have to worry about pushing extra calories or being on the receiving end of disapproving looks from some in the medical community who don't get that most children with CdLS are much smaller; but we do have to deal with mobility issues much earlier than most. And that is where we are.

I had hoped she would be able to move herself around somewhat by this age, but the reality is that she still cannot sit up unassisted. It's not from a lack of trying. No, she wants to go! Badly! But her little body just can't make things work together in the right way just yet. So as she approaches 30 pounds and 3 feet tall, we are forced to transition from "baby" equipment to mobility equipment designed for handicapped children, which means many adjustments need to be made in our home and to our vehicle.

Ella has moved from her floor-sitting high chair to her wheelchair while we wait for her special seat to come in. We still use a carseat and stroller for (the few) trips we make with her out of the house, but we need to add a ramp to our van to be able to use her wheelchair while transporting her in the near future.

We also have a gait trainer coming which I am very excited about. Ella's legs are very strong and this will allow her to "walk" and move around the house on her own, ideally. It is both an amazing and terrifying possibility!

We are also planning to renovate part of our home to make a therapy/play room for Ella and her equipment, which takes up a lot of space. It will also give John and me more privacy when there is a nurse in our home helping us out. Her bedroom remains upstairs which is another obstacle we will have to overcome at some point. But we are managing to carry her up and down for now.

I'm having to adjust to the idea of having a noticeably handicapped child. And it's not that I really care what other people see or think; it's more that I had hoped she would be further along by now. But I also have to remind myself to be thankful that we still have that hope to hold onto as she holds so much potential. We just have to be patient.