We actually have been a bit quiet in all things health-related, thank goodness. Leah had her annual neurosurgical visit and twice-a-year Spina Bifida clinic appointment last month. As usual, we started out in Radiology at Minneapolis Children's Hospital. She had a rapid MRI scan, which takes a looks at her brain ventricles to ensure they're still within the range we'd like to see. It also shows her chiari malformation, that pesky little abnormality of her cerebellum. The good things about the rapid MRI is that it goes fast and she doesn't need to be sedated for it. The bad news is that she has to be totally straight-jacketed, in a loud machine where she can only see me through a little mirror, for 5 whole minutes. She's still talking about how she was very upset being put into the machine. The second test we did in Radiology was an X-ray of the shunt and tubing, which shows us where the shunt is so we make sure the tubing is still winding free down her neck and into her abdomen. The MRI is a magnet, which could possible reset her shunt, so they also take a picture of the shunt valve setting.
Following Radiology, we headed over to see Pete and take a look at the results. All good! The ventricles looked great, almost normal. And not just Leah-normal, but regular non-hydro normal. Her chiari is still there, and still big, but for the moment is not causing any issues. Leah was her typical charming self with Pete, and he thought that overall she's in really good shape! We'll see him again next year! We went directly to Dr. Marker's office, and he was similarly pleased with how she's doing.
We had made a change with the rest of her care and moved from Children's to Gillette. While we absolutely love Dr. Nagib and Pete for neuro and Dr. Marker for general SB, we had not been happy with the physical rehab specialist or urology doctor at Children's. After hearing a lot of great things from other families about Gillette, we decided to make the change this spring. Last year I moved her Physical Therapy to Gillette and was so much happier with the level of care that we received, so I was optimistic about the Spina Bifida clinic there.
Gillette's SB clinic is fairly new, only about a year old, but a lot of families had been migrating to them recently. They also got some of the "kinks" out and we had a great experience. Clinic at Children's and Gillette is basically the same process, and in both places they make it a one-stop shop for all the SB specialists. They work together to discuss the best plan for the patient, and also make us only come in once to see everyone. Right away, I liked Gillette, though they were running quite a bit behind. The first specialist was a rehab doctor, who wanted to know all about Leah's health history and checked out her legs and body. This doctor was a young-ish lady. Then about 5 young-ish (I'm talking 30's) female doctors came in to talk more thoroughly about her legs, walking, and everything physical. As a mom to a young daughter, I really liked seeing these girls, as I believe having strong female role models are great for Leah. I met the chief neurosurgeon, who's also the director of the SB program, and talked with him while Leah had some hip x-rays done. He was ok, but I definitely like Dr. Nagib better. This doctor didn't give me a vote of confidence when I asked him if he was as good as Dr. Nagib.
Her hip x-ray showed that both hips are still in their sockets. Hip dislocation is very common in SB, and the bones can eventually find a new socket farther up the pelvis. It's only a problem when the hips become uneven, which causes pain and scoliosis from the leaning. Doctors used to do surgery to replace the hips, but the recovery was long and painful, and the hips would often fall back out of joint quickly. Unless it's a problem, they'll leave them as they are. Luckily, that's not a problem for her now but we will keep watching them closely.
Finally, we met with the urology doctor. I really, really liked him! His approach, his philosophy and general demeanor. He told us his rules: he is in charge of her health; we are in charge of her social life. He will defer to social life until health is compromised, which I really appreciate. Right now, Leah is not cathed or on any kind of bathroom program. I asked about it because she's 3 1/2 and starting to notice that she's one of the only ones still in diapers. He asked me about UTI's, and whether she suffers constipation or other issues. Our answer is that diapers are working just fine for her, and his response was that he can't offer us any other options that will make our lives easier right now. She will need to be continent for kindergarten, which is 2 years away, so we'll wait another year before starting down that road. For now, we keep doing what we're doing, as her health is good.
Our first Gillette SB experience was a positive one. We will go back in 6 more months, where they will do some more tests on her kidneys and bladder as we move towards a bathroom program. They also recommended we start Physical Therapy back up. She's starting to slow down on the walking, preferring the wheelchair a little more often at school. Could that be a typical 3-year old thing, or is she done with it? She has a friend at school who uses walking sticks, and talks about wanting to walk like Bennett... maybe she needs more of a challenge. We also want her to start learning how to get in and out of her wheelchair and onto the couch.
Whew! That was a long update to say that she's doing great!
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