Back in the very beginning of June we went to the adaptive seating clinic at CHOP to see about getting some gear for Emily that would be supportive and helpful for getting her around. Her inability to hold her head or support any of her own weight makes moving her very difficult. We were able to buy a reclining forward facing carseat for her to keep her as upright as possible while still being comfortable at Babies R Us. But, other adaptive seating devices are harder to come by.
At the clinic, the physical therapist recommended the KidKart, a wheelchair/stroller with a full head support system, side supports, etc., to keep her in a nicely supported upright position. She can only ride in the strollers we have now if she is almost completely reclined. Since she is already on her back so much, it's important to get her sitting when we can.
They also recommended a bath chair which is like a reclining lounge chair with a mesh lining to use in the bathtub. It is extremely difficult bathing her, so much so that I can only sponge bathe her because I can't support her in the tub and wash her at the same time. I've tried a few different ways, but none that really worked well.
Now the KidKart and bath chair had to be ordered and accepted by our insurance company so the process took almost 3 months. But, they were approved and we went to the clinic last week to get fitted and pick them up!
The KidKart is awesome and she can sit almost upright without the head strap for quite a while, 1-2 hours. We went to the circus last weekend and she sat in it the whole time and never fussed once. Plus, she was awake the whole time too!! She did her OT session sitting in it as well. Brenna, Carter, and Drew can play with her while she is in it too, and we don't have to worry about them climbing on her like when she's on the floor.
I can't even begin to tell you how happy I am to have the bath chair! I gave her a shower in it for the first time and she liked it and I could wash her thoroughly without any trouble. It sits up high on a base, so I was able to use the shower head for rinsing. I was so relieved I cried.
Here is Emily in her new ride
Playing with Drew and the spinner from her light box (for vision therapy)
At the circus