Thursday, April 28, 2011
Every Six Months (lengthy post)
Exhibit A: a young teenager who walks independently most of the time, and you'd probably never know she has a medical disability. But she is very down on herself, frightened by social interaction, and just insecure all around. We bonded a bit because she is a big-time reader. Always something new on her Kindle. She is beautiful, intelligent, and very sweet. In her mind, though, she's just different, weird, and gross. By the way, I got to talk with her for a little while, and I started sounding like a motivational speaker. I told her that she might think everyone is focused on her difficulties with walking and with bathroom stuff, but 95% of that is just in her head. And even if people do notice her differences, that doesn't mean they couldn't be great friends and a lot of fun to hang out with. She smiled a lot and said she is scared to go to high school next year. I'll be praying for her.
Exhibit B: a sixteen-year-old girl who rolled up in her wheelchair to meet the boys. She has a big smile on her beautiful rosy face and thinks the boys are adorable (because they are . . duh!). She strikes up a conversation and says she travels from Oklahoma to come to Shriners. She's been coming since she was two and thinks of the staff as her second family. She cracks jokes, asks about me, and tells me she forced her best friend to tag along with her on the trip. Her friend teases her and they both ooh and ahh over the boys for a while. She seems to have probably never walked much, if at all; she is bubbly and very social. Since she comes off as very comfortable with who she is, her positive attitude is contagious. I wish I was sixteen again so I could be invited to her parties and we could hang out :)
(Warning: mega medical mumbo jumbo ahead).
At clinic, we find out how the boys are progressing and some goals we can work toward during the next six months. And a few bits of news that can sometimes be difficult to hear. The breakdown usually includes Neuro, Uro, and Ortho at our clinic, but this time we did not meet with our neurosurgeon. We'll see him in June at his regular office. Here's the dealio:
Urology: Yes, lovely urology. For those who aren't familiar with how SB affects this system, I'll give it to you as simply as I can (because I only have a basic understanding of it myself so far). The boys do not have full (or possibly any) control over their bladders and bowels. Also, because they don't have the right nerve impulses to empty the bladder completely, they have urinary reflux (some urine backs up toward the kidneys). Therefore, we have to keep a good eye on their kidney health. Urinary tract infections are common for these kids, but our boys have STILL not had any, so yay yay yay for that. Most people probably have no idea how big of a deal this is.
At this clinic we were told that we need to start using a catheter about once a week to check the amout of urine that is hanging out in the bladder after the boys wet their diapers. We will measure it and document that for our next clinic. At that point we will also do another urodynamics study (a video x-ray of the urinary system at work, using fluids and catheters) to determine the pressure of the bladder/kidney relationship and the exact amount of reflux they have. If they have any infections, if they have too large an amount of residual urine, or if their reflux has worsened by then, we will begin catheterizing several times a day to help the bladder empty completely and keep the kidneys healthy. This is the news I knew was coming eventually, but it seems we have been given another reprieve from cathing daily, for at least six more months. Cathing keeps the kidneys healthy and can have a very positive effect on health later in life, but to be honest, the word almost paralyzes me with fear and dread. It's a huge time-consuming inconvenience involving icky medical processes I don't feel qualified to perform (and it will be times two). At least I have a little more time to get used to the idea. And I will; I know I will.
Orthopedics: An x-ray showed that Woody has one hip out of socket. The doctor came in with this cautious look on his face like he was expecting me to burst into tears over the news, but thank you, thank you, thank you, BabyCenter Spina Bifida Kids board! I already knew that this was relatively common with SB kids and isn't exactly as devastating as it sounds. First, it doesn't hurt him, at least for now. Second, although having one hip out and one hip in is obviously not ideal, he will not have surgery right now (or possibly ever) to put it back in. If it gives him heck later when he's trying to stand and walk, we may have to go down that road. For now, since lack of muscle tone caused it to slip out, even if they put it back, it could slip out again unless he gets much stronger. So, we don't do anything. Weird, right?