Saturday, July 27, 2013
Spina Bifida is kinda tricky. It affects the obvious, like mobility....but it also affects things that are not so easily noticed. The not-so-obvious things are by far the most frustrating. Absolutely maddening. I think my fellow SB parents know what I am referring to. Last year when I attended the National Conference, there was a lot of buzz about an intensive week-long program in Cincinnati, a program designed to deal with the not-so-obvious but very prevalent issue that folks with SB deal with. It sounded promising so I filed away the Cinci program in the back of my head. I knew it was an option but I wasn't sure how easy it would be for us to travel all the way to Ohio for their program. Well, we've since decided it is time and we recently found out that we will be traveling to Cincinnati, Ohio for some specialized medical care for Caleb. We are very excited to have this opportunity. Given the nature of why we are going to Cinci, I don't intend to blog about the program or our experience here but I do recognize that there are many SB parents who would welcome more information. So, I created a private blog that will be solely about the program in Cinci. The blog is only open to fellow SB parents who are interested in learning more about the program and want to see what our experience is like. In order to access this private blog, I have to have your email. So, if you are a fellow SB parent and want to get a glimpse into the Cinci program, leave a comment with your email (I won't publish it) or just click the "contact me" button on the right.
Monday, July 15, 2013
Sunday, July 07, 2013
It has been unseasonably cool here in Texas this past week. By "cool" I mean a high temp of about 93. That's cool for July in Texas people. We took advantage by taking the boys out to ride their bikes.
He's so cute.
I've said it before, and I'll say it again: I am so thankful for this hand cycle. Every child should have the experience of riding a bike. While riding a "typical" bike won't likely ever be possible for Caleb, this hand cycle is a tremendous blessing. It's fun, fast, and Caleb loves it.
Brothers riding together. Warms this momma's heart.
Tuesday, July 02, 2013
Every summer a local radio station hosts "Celebrate Freedom" which is very large, all-day, outdoor concert. It's huge, like tens of thousands of people. Glenn and I have been a couple of times in the past but we haven't gone since having the boys. This year we learned that TobyMac would be one of the groups performing. We are huge TobyMac fans (especially Caleb) so we had to take advantage of seeing him perform in person.
Caleb was pretty excited once we got our tickets.
Celebrate Freedom is an outdoor concert, in Texas, in the summer. Meaning, it's HOT. Really hot.
Luckily there were some tents and shaded areas we could head to when the heat was too much. It really was quite warm.
The boys thought this car was pretty cool.
Fortunately the heat died down quite a bit by 6:00 and we were able to enjoy being outside.
Waiting patiently for TobyMac to take the stage.
We didn't have a great view of the stage but we did have a fantastic view of the 600 foot screen.
It was really a great concert. We are huge fans of TobyMac. It is just so refreshing to see such a talented artist that puts on a fantastic show while praising God. All of the artists that performed that day shared their faith. Love it.
About halfway through TobyMac's performance, Benjamin lost his mind.
Yep, that's my boy.
Monday, July 01, 2013
Caleb had a MRI (brain and spine) last Friday. As expected he did fantastic. Such a trooper. He handles this stuff way better than I do. I went back with him to pre-anesthesia to watch as he went to sleep. This is not the first time I have seen him drift off to sleep and I suspect it won't be the last. I don't like it. The MRI lasted about 2 hours.
(enjoying a post-anesthesia popsicle)
I got a call today with the results of the MRI. Basically things look "stable", meaning there is nothing new to report. I am relieved and frustrated by this news. I am relieved that there isn't something major going on that would require more surgery. I'm frustrated because I still don't have answers. I still don't know why TC recovery has been so hard for him. I still don't know why we are 15 months out from surgery and he still hasn't gained back the function he had prior. Ultimately I'm thankful for a good MRI report...just wish I had more answers. Maybe I never will. Maybe I just need to be okay with where we are right now. It isn't what I would have wanted for him. I hate that this happened but it happened nonetheless. And the truth is, where we are right now isn't so bad. No, he can't walk right now and maybe he never will but I learned a long time ago that walking/not walking isn't a predictor of a good life. So we press forward, we keep climbing our mountain. I'll continue to be Caleb's number one cheerleader.