Casey had an appointment with her Ortho last week- just a standing 6 month check-up. Overall it went well. They wrote an order to get an evaluation for a new wheelchair. Casey has gotten so long that she is hanging out of her current chair. Currently she is in a wheelchair/stroller. The next chair will still be customized to her needs, but will be more like a wheelchair. She is getting so big!!! Depending on how the chair works, we may have to start looking into an adapted van too. We knew eventually this was coming. It will take a few weeks/months to pick the best chair for her, then it will take another 6+ months to actually get it built and ordered. By her next birthday though, possibly even by the end of the year, she will be in a big girl chair.
We have been dealing with some issues with Casey not having much output (urine) over the past month especially (off and on for a while though). We have taken her in for all kinds of tests and everything is coming back clean. We ruled out infection, dehydration, kidney stones and blockages. We went Tuesday to talk with Urology. They have us keeping a journal of all of her fluids in and out. We have to keep this for a few weeks, and help her if she goes more than 6 hours while awake with no output. She has been going about 12-13 hours up until now. Mid-May we take Casey and the journals back to see if we are leaning toward her just needing more volume in, or if we are dealing with something a little more complicated like Neurogenic Bladder. We are hoping for volume. Either way though, it is a long road ahead. Casey’s intake is such a fine science that even adding an ounce a day can be tough. We will post more in May after we get some more answers. The good news is that yesterday we did not have to help her at all, so far today is going pretty good too.
I am working on uploading some pictures from Casey’s birthday and other things. I will get another post with party details, pictures and more up later today or tomorrow.