What an experience. We took K to her first Spina Bifida Clinic day on Wednesday, and it was interesting to say the least. I wish we had been a little more prepared on what would happen that day, besides the general you'll have the testing done and meet with the doctors later. Um yeah, I didn't realize it would be an ALL.DAY thing. We left the house around 7ish and got home at 6 that evening, to say we were exhausted is an understatement.
So where to start, I am not sure. I mean overall things were OK, not great though. I was really hoping for better news in all honesty, but that's not quite the case. We got through the ultrasound and x-rays just fine, the test we were dreading, was the urodynamics test. What should have been awful for K, was not. Now to most that sounds good, but unfortunately this should have been quite unpleasant for her. Bottom line, she is starting to lose some sensitivity, which means less bladder control etc. So now we have to cath her about every 4 hours to help make sure she is emptying her bladder completely, and we have to start her on ditropan. I knew this was a big possibility since it is common for sb babies, but she had been doing so well, or at least I thought.
That was really the biggest news, but in turn caused a little concern about her possibly retethering. Not good, that could mean another surgery. We did not see the neurosurgeon, he had a surgery and then wanted to get a MRI done first. So now we go back at the end of Oct for the MRI and then head over to talk with him and get the results. I am praying so hard that she is not retethered and needs surgery again.
On better news the Ortho Dr and Rehab Med Dr, gave us good reports. Said she's doing well overall, she is doing well with the braces, has decent range of motion with legs/feet etc. One even said they thought she would be walking by 2 yrs old. Still about 7 months way, but I am trying to stay positive. Ortho suggested we get more PT than once a month, and maybe some OT too, so I'll talk with UCP here and see what we can do.
We also found out about a program in Alabama that helps pay for braces, supplies etc, and we qualify just because of K's SB, so now we have to get all that started and hopefully that will help pay in the future on some of this stuff. So now we wait. Waiting for Oct 31 is going to feel like an eternity.