It’s something we read about from day 1 – the questions kids with Spina Bifida ask when they’re old enough to realize that everyone doesn’t have Spina Bifida. I remember reading other parents’ blogs or posts on social media about their child asking things such as, “When will my Spina Bifida get better?”, “Will I […]
I don’t want to scare you by the title. All is good here – really! But that’s what came to me because in my head, the past seven months or so has been me working really hard at ruling out everything I can that was pointing to a tethered cord surgery. And in our minds, tethered […]
I’m not sure, even after 30-some years of life, that I have as many scars as this child. And last week Monday, he added a doozy of a scar to his head, and his second ambulance ride. If you’ve never been around someone that is bleeding from their head, let me forewarn you: heads bleed […]
Yesterday was just not a good day. Not a horrible day, just a disheartening day. A little of that was Spina Bifida, and a little of that was typical kid stuff on top of Spina Bifida. I would like to say that when we look at Colten, we don’t “see” Spina Bifida, but that would […]
When we last chatted, you were falling asleep at my extensively long post about the first two days of our medical marathon. Now that you are awake again, let’s finish this off! Friday Colten and I went back to Ann Arbor again for his FINAL Treadmill Study testing. FINAL!!!! YAAAAAY! While this was a very […]
While there are a lot of things I love about going to the Myelo Clinic at C.S. Mott Children’s Hospital, such as seeing most of the practitioners all in one shot, there are things that are overwhelming about the clinic, such as seeing most of the practitioners all in one shot. Even though I had […]
A much-delayed update… All went well with Colten’s surgery. They were able to get in laparoscopically and do part 1 of 2. Part 2 will take place in about six months. Unfortunately part 2 cannot be done laparoscopically due to all the shunt tubing in Colten’s abdomen. So he’ll get a nice long incision straight […]
When a doctor tells you your son has no motor or sensory response on his legs at all, it is pretty damn awesome to see him use a Johnny Jumper! We have not used this much with him because the treadmill study folk want us to avoid use of it until after he’s done with […]
Bet you were wondering if we would go a whole month without posting… NOPE! Life has been very chaotic around here and I just have not had the frame of mind to sit and blog. As I sit in the older two boys’ room this evening, fighting my third bloody nose of the day, sweltering […]
A couple weeks ago, Richard and I went out to see the local high school play and his mom came by to hang out with the boys (thank you!). That little stinker Colten decided that he would roll over from back to belly for the first time while we were gone! Then over a week […]
The Adventures of Colten Robert 