Thursday, April 28, 2011

Every Six Months (lengthy post)


Every six months, Jack and Woody visit Shriners' Hospital for the Spina Bifida Clinic. It's a day-long ordeal that is always somewhat bittersweet. We receive tons of information -- much more than we can process. And we get to see spina bifida displayed right in front of us, at all ages and all levels of ability. It can be overwhelming, encouraging, terrifying, and enlightening all at the same time. Here's a peek into our day at clinic.

The Sweet
The sweetest part of clinic is connecting with other SB families. I can't really explain how great it is to talk to someone about all the stuff that our SB kids deal with and discover that they know exactly what I'm talking about -- 'cause they've been there, are there now, or will be there. This week's clinic was especially sweet because I was able finally to meet the "other twins" we have heard about since before the boys were born. The girls are 7-year-old identical twins, and they are simply amazing. They are beautiful, energetic, bright, precocious little girls who will steal your heart in 3 seconds flat. Both of the girls were born with spina bifida . . . and both of the girls ran, jumped, and explored all over the hospital, mostly without their braces! They are rockstars :) Their dad was super, and we exchanged e-mails. I am beyond happy that we finally got to meet these two sweethearts.

We also got to meet a few teenagers this time, and well, let's just say they inspired me to dig deep and decide every day to be positive, so the boys will have a shot at being confident and completely comfortable with who they are. I want them to feel blessed. (Because they are.)

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 :)

The Bitter
(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?

Our physical therapy goals for next clinic are to increase the boys' upper body strength and increase the time they spend in their stander (a device that hold them up in a standing position so their legs can bear weight, grow, and develop correctly). Here's what theirs looks like:

They were molded for larger AFOs (Ankle-Foot Orthotic) this clinic, also. Their "boots" will be a little taller (to just a little below the knee) and offer more support. They will look a little like these, probably, but an alligator design (Jack) and a cars and trucks design (Woody):


If they are able to hold up their weight on straight arms, we could be ready to try RGO (Recipricating Gait Orthosis), which is a mega-brace that helps the boys, well, to stand and eventually practice walking using parallel bars or a walker for support! Here's what that will look like:


This would be a long (maybe years long) process that starts with 2 weeks in-patient to help us all learn the skills for using the equipment correctly. Also, they mentioned twister cables (so mechanical, right?), which I have yet to read up on, but I have heard of them. Exciting? yes. Terrifying? yes.

Overall, the bitter and the sweet made for a busy day, especially considering my sweet boys were just getting over being so sick it landed Jack in the hospital for five days with pneumonia. But Maw Maw Judy was there to help and to offer candy bribes whenever needed, so we all made it home in one piece. My guys are tough, and when I'm not, at least I know tomorrow's a brand new day.

3 comments:

Endris Family said...

Marianne Wilson, M.D....you've earned it! That is a lot of medical jargon but I loved reading every bit of it! I think your whole family is AMAZING! Love you all!

Selina said...

What a great post...So informative! And I loved reading about the others you met at clinic...everyone offers a different perspective of this same journey we're all on...So cool.

Debbie said...

Wow! Thanks for all the informative mumbo jumbo. What a beautiful mother you are and what a sacred trust!