The LONG version of Tate’s treatment update

There have been some interesting steps we’ve taken this past month regarding Tate’s physical therapy treatment but before I go into those, I figured I should explain what we know so far. (Be forewarned, this is a really long post, but I need to get it all documented before I forget.)

It is still confusing and causes questions on my part, but what we understand Tate to have is hypotonia. It isn’t a medical diagnosis, but a description of symptoms. It’s also called low muscle tone and/or floppy baby syndrome. You can read more about it here.

From about his sixth month on, we noticed that he wouldn’t bear weight on his legs. Then by his ninth month, it was something we (and the pediatrician) had more valid concerns regarding and were sent off for a physical therapy evaluation. When I took Tate for his first session, I never would’ve thought that eight months later, I would still be taking him there twice a week. Lots of people ask how a child does physical therapy. Basically, it’s age-appropriate "play" using targeted muscles. But the biggest part is that I can learn what to do with him at home.

Over the months, the therapy has evolved as he has learned more and achieved milestones. We’ve gone from sitting up, transitioning to sitting, bearing weight on all 4's, army crawl, all 4's crawl, bearing weight on legs, standing, to the latest of cruising. Tate has shown a very distinct pattern in that he has a delay with a skill, but once he builds enough strength and gets his confidence at it, he’s off and running…so to speak.

His physical therapist has been incredibly helpful to him…and me. There have been several sessions that Tate has had a blast, and I’ve been the one in tears. In fact the entire team at Our Children’s House is absolutely wonderful. They celebrate each new skill with all of us. It’s so refreshing being around people that understand the excitement as he masters a new skill. And it’s also wonderful to have people not mind when your child is screaming (loudly) in their face because he just doesn’t want to try to crawl or stand.

So back to the new parts of his treatment. After a lot of discussion and various concerns, we decided to have an evaluation with a pediatric neurologist last month. For many kids, the hypotonia is a symptom of a more serious disorder (muscular dystrophy, cerebral palsy, etc.). We figured better safe than sorry. The neurologist’s thoughts were that it’s not on the scale of a serious disorder, he does have gross motor skill delays, he is showing great progress with physical therapy, but there's not much more to do right now. We go back in November for another follow-up. At that time, he’ll determine if we need to go forward with an MRI and other tests. We’re hoping that won’t have to happen!

The other biggie this month was…if I’m being honest…the one I probably had the hardest time with. About two weeks ago, Tate got custom-made leg braces. Wade calls him his Star Wars Storm Trooper boots. We were hoping he would only need ankle support, but these help with more of the support he needs for his legs, feet, ankles and to help him not lock his knees.

It was more the idea of leg braces that I had a hard time with. Going through all of this with him has brought so many different emotions that I didn’t think I’d have to face until later into his childhood. Those feelings of not wanting your kid to be different, not wanting them to struggle more than other kids, wondering why there's so much pressure on boys to be big and strong, not wanting to see him so frustrated, and mostly not wanting him to miss out on what he “should” be doing at his age. It does make it easier knowing that he doesn't have any of these feelings himself (just me) and that we want to do anything and everything to help him. The great news is that he doesn’t seem phased by the braces at all (serious answered prayer!), and we've already seen improvements.

And the most recent thing is that we’re about to go through an evaluation with ECI to make sure he’s doing OK nutritionally and to see if the low muscle tone is connected to any speech delays. Right now he seems to be borderline in those areas, but I’m sure we’ll know more in the weeks to come.

So here’s my disclaimer (I always give disclaimers to things…my PR background, I guess). I know this is nothing compared to what many families have to go through. Nothing about Tate’s treatment has shown anything close to a chronic or life-threatening illness. For that, I’m extremely thankful. And at the same time, the last 10 months have still been a roller coaster of emotions.

Of course I wish we didn’t have to go through any of this, but it has forced me to slow down and pay attention to so many little things that I’m not sure I would’ve otherwise. I get a lot more focused one-on-one time with Tate during his sessions and at home when we’re working on different skills. And I get to celebrate when all of his hard work pays off and he learns something new. As I’ve said before, I had NO idea that seeing your child stand could be so heart-warming. Who knows what I’m going to do when he starts walking on his own?

I’ve realized even more lately that his headstrong and stubborn personality actually serve him very well while going through physical therapy. I am already proud beyond words of all that he’s accomplished, when I know he would’ve preferred doing something very different with our T/Th mornings. This is a road I never thought we would be going down, but I’ve learned a lot about myself along the way while getting to focus even more time and energy on this little boy who melts my heart everyday. For that, I’m extremely thankful.