I want to say Colten took his first steps (YAY!!!!) but I feel like I need to put an asterisk next to it. And not because it’s Opening Day (Go TIGERS!) and that’s what they do when someone taints a record… I don’t feel he has tainted this accomplishment, but it is weird and I’m […]
We started our blog on September 19, 2012, a day that is etched in our minds forever. This was the day we were told that the baby inside me has Spina Bifida. He was 35.5 weeks gestation; we delivered at 38. I look back and think, how did I even have the right frame of […]
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 […]
Last week during Colten’s physical therapy with the EarlyOn PT (we see her bi-weekly), the words “twister cables” came up and it made me reel. I wanted to shake the PT and say, “Just let him BE, he crawls around, he pulls to stand, he even stands to play with assistance. STOP making it harder.” […]
Over the last two weeks, Colten has met three new specialists he will be working with: teacher, physical therapist, and occupational therapist. Based on the goals of his IFSP, he will meet with the teacher once a month at our home and she will evaluate his social/emotional/cognitive milestones and work with him and us to […]
When I was progressing through my teacher education classes at MSU, I was focusing on early childhood and Deaf Education, so IFSPs – Individualized Family Service Plans, were of particular interest to me. Granted, I expected to be on the “other side of the table” during these meetings! IFSPs are done when children are from […]
Colten recently had his intake with Macomb ISD for their special education and EarlyOn services. As much as it’s interesting to see the reports they file, it still feels like a big stab in the heart when you read all the developmental areas they’re missing. Because when you live in the moment with this kid, […]
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 […]
The Adventures of Colten Robert 