To celebrate Spina Bifida Month, we went to Myelo clinic a bit early! Well, not really. It is Spina Bifida Awareness Month, and we did go to Myelo clinic, but the two are unrelated. In honor of Spina Bifida Awareness month though, this handsome fellow has been circulated around the internet a bit so we thought we would share his awesomeness here with our readers too:
It seems as if at least once a week Richard or I remark about how glad we are that we built these parallel bars (and I’m extra thankful Richard ended up painting them… they look slightly less odd sitting in our living room). And they’re not just for Colten! Our other boys, especially Max, love swinging and playing on them, working on balance, flexibility and strength. Not the ideal activity for a living room but these bars have, without a doubt, given Colten an edge in regards to standing, walking, balancing, and now, with the addition of a ball tied to the bar, kicking!
So back to Spina Bifida Awareness Month… We’ve been posting facts every day on Colten’s Facebook page. You can read the first half of the month’s posts on our website here if you’re interested. We’ll post the second half at the end of the month.
Onto Myelo clinic… a few interesting things came about as we met with Urology and the PM&R team (Physical Medicine & Rehab – the doctor comes in with an Occupational Therapist, Physical Therapist, Speech Therapist, Orthotist, Wheelchair Specialist). Not much worth mentioning in regards to the visit with Neurosurgery (that’s a great thing!).
PM&R came first. Since Dr. Green has not seen Colten since he got his KAFOs, AFOs and walker, he had some showing off to do. He absolutely did not want to show anyone anything but we managed to squeak some steps out of him so she could see how he maneuvered with his equipment. His KAFOs are definitely helping to straighten him out but there still is room for improvement and some more help from different types of braces which we might explore later on (ground reactive). For now, they want to adjust the bar on the side of the KAFOs to better align with his knee joint, so they managed to squeeze us in tomorrow, Monday, so back to Mott we go again this week (actually, we’ll be at Mott once a week for about a month at various appointments). That’s about all on that front for now.
Urology checked in with us but we’ll see them again November 4 when Colten has his annual urology testing done. For now we chatted about a couple concerns: potty training and the issues on his bum. I asked what the chances of successful potty training would be with Colten, or when catheterizing might become part of our routine. The nurse checked his previous test results; with such low pressure on his bladder (a good thing to keep his reflex from causing issues), Colten actually leaks urine quite often throughout the day and most likely has no control over his muscles down there. In her experience, kids with similar test results are not able to potty train. They may be able to achieve some continence with catheterizing and medication to increase bladder pressure, or with surgery to increase the bladder size, or a few other options. Some people may need to stay in diapers for life regardless of some treatment options. While it’s hard to imagine my child in diapers for life, there’s a part of me that is a bit thankful we may not have to enter into the world of cathing! We know there’s tons of people who go down this road and it becomes second nature. But for us, it’s of course still foreign and hard to wrap our heads around. Either way, it gave us a slightly better picture of the future and what MIGHT be how things are down the road. As always though, we’ll see when we get there!
As for Colten’s bottom – it’s been a struggle since he was in the NICU. For two years we’ve dealt with skin breakdown on his bottom. Sometimes it seems to clear up; other times it is painful to look at. We are thankful he cannot seem to feel anything down there! The urology team is referring us to a wound specialist to have it evaluated. Extensive, ongoing skin breakdown such as this can cause additional problems as he gets older so if there’s something we can do to help fix this once and for all, or at least give him a better deal down there, we’re all for trying. So we are waiting on that referral…
That’s about it! Outside of Myelo clinic, Colten is doing great! We’ll do more updates in the coming weeks as we hit more of these upcoming appointments: eye follow up next week; urology testing the week after. We will also work on doing a full update on the fundraising and Walk ‘n Roll for The COLTRAIN! Hope you all have a great week!