Last week we had our 6-month Spina Bifida check-in appointment. We started out in Radiology, as usual, for a renal ultrasound (which checks her kidneys and bladder), and then she had a few x-rays of her shunt and tubing. We then went right over to SB clinic, which was unusual because we normally see our neurosurgeon team. This was the first time we did not need to see them because she now goes every year. At our last appointment in June, our neuro team told us that she was doing very well and he didn't need to see us for a year. It was pretty weird not going there, and it is a little bit scary not having the security of having a special look at her shunt. We got so used to going there a lot last year that it was also nice knowing that things inside her little head are going pretty well (**knock on wood**).
At SB clinic, we learned that her renal ultrasound showed 2 very healthy kidneys and a healthy bladder. The #1 goal for the last 2 years was keeping everything healthy and we have achieved that goal! We are now starting to talk about what's next. She can't stay in diapers forever, but since she does not have any muscle tone in her bladder, she won't be able to potty train normally. Over the next 2 years we'll start to work on a bathroom management program for her to achieve our next goal, which is for her to be dry and clean by the time she gets to kindergarten.
We also talked to Dr. Marker about starting to get Leah in Hip-Knee-Ankle-Foot orthotics (HKAFO's) and eventually help her learn to walk. We have an appointment tomorrow with the orthotics company to get her fitted. Similar to how her AFO's went, it took about 6 weeks for them to be made. We will also look at getting her back into physical therapy early next year once her new braces come in so she can get some time in them. Very exciting things to come with Leah's mobility!
Saturday was the 1-year anniversary of Leah's shunt. I can't believe it's already been a year that we got a call from daycare that all was not well with Leah, and then we found ourselves having her first shunt revision the following day. I remember how worried we were last year about her shunt, and when it finally failed, neither of us were surprised. We were very scared and upset, but not surprised. This year has been a different story. Thankfully, things seem to be working quite nicely with this shunt, and we've been at the same setting since getting it replaced. Getting past the 2 year mark is a very good thing. Our doctor told us that a shunt failure in the first year is almost a guarantee, and we beat the odds simply by getting to 1 year. We also feel very fortunate to have now made it to 2 with very few issues, and I'm hoping and praying that this shunt will stick around for a long time.
Glad to read that clinic went well. My daughter's first ever SB clinic day was interesting to say the least. On that morning before we left home and before it started I prayed. She was only a tiny newborn on the day. At the hospital trying to find a empty parking space was hard. During the clinic, I was a little surprised and dismayed to learn that instead of a pediatric urologist we were meeting with a pediatrician who did not know much about non typical bladder and bowels. I was a little shocked and annoyed by that fact. My daughter’s bladder health is at risk for no reason because they did not have the skill or expertise to do tests to check function. And I was also not happy that we saw a neurologist and neurosurgeon at the clinic when there was no real need for her to. Laurel does not have seizures or hydro either. Overall I think that I prefer single appointments with the doctors once a year in lieu of a overwhelming one day clinic appointment. So I will mention my concerns about the clinic privately.
ReplyDeleteSo I will try to contact a SHINE advocate tomorrow. I am planning on switching hospitals immediately and will research different spina bifida clinics.