Thursday we went back to Shriner's to have Brynlee's PT Evaluation. Overall, it was a good appointment. Shriner's is so wonderful because they have lots of equipment and it is in Brynlee's size. Outpatient therapy through PCMC has just about nothing in Brynlee's size, so it has been pretty frustrating to not see the stuff that they want us to get and to not be able to see how Brynlee likes it.
They were able to put Brynlee into a manual wheelchair, and she loved it! It took her just a couple of minutes to figure out how to maneuver the wheelchair. I guess this was Brynlee's way of telling me that it is time to get her fitted for that pesky wheelchair. It was clear that for her social development, she needs this to happen. They also had a Power Wheels Ride On toy that had been modified with the "gas pedal" on the steering wheel, so Brynlee could push the "pedal" with her thumbs while she held onto the steering wheel. She also loved this and drove all over the hospital, so Brynlee might be our first child to get a Power Wheels toy. They also had a dynamic stander, which essentially is like a standing wheelchair. It would allow Brynlee to get her standing and weightbearing in while still giving her the ability to be mobile. I had heard about this contraption before, but I had not been able to see one. However, we ran out of time to get through everything, and we will head back in January to finish our evaluation and get some kind of a plan put together with them on what things we want to pursue.
Brynlee was supposed to have a bladder study on Friday to determine if her bladder was emptying all of the way or if it was refluxing back up towards her kidneys. When you have paralysis your bowel and bladder can be affected. Basically, some people can empty normally, some end up needing to use a catheter to empty, which how lucky would we be if we needed to start cathing Brynlee? In extreme cases where there are lots of problems with infections, they would remove the bladder and she would have a bag. Anyway, my point is that we are really, really hoping that Brynlee is not having any issues with her bladder. So we had this test scheduled for almost two months because our rehab doctor wanted it done, and then the urology people called on Thursday and said that the nurse practitioner who performs these studies didn't want to do the test on Brynlee until she had a renal ultrasound and it was determined that she really needed the bladder study because the bladder study is really uncomfortable and invasive. We already had the renal ultrasound scheduled for after the bladder study, so we went ahead and had that done and will just have to see about the bladder test. Brynlee was so wonderful for the ultrasound and didn't fuss at all. It was a pretty easy day for us at the PCMC. Those days are always nice.
Brynlee's rehab doctor is supposed to follow up with us regarding the renal ultrasound and where we need to go from here, but I don't know if or when I will hear from her.
We are so blessed to have another Christmas with Brynlee and with our other two girls as well. It should be very fun this year. Many of our cancer friends have not had a very wonderful December, and we have many friends being treated at Primary's who have essentially relapsed in one way or another all within the last few weeks - I think there have been at least 5. It has been very sobering to say the least. None of us really can afford to take one single day for granted.
Thank you for your continued interest in Brynlee's story and her progress, and thank you for the continued prayers on her behalf.
We wish you all a very Merry Christmas!
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