It’s been a while! Four months since our last post. Why the hiatus? We were enjoying a bit of summer fun before our newest bundle came along…and did SHE ever come along! Our little boys now have a baby sister – Sophia Rose! She joined us July 17 and we’ve been spending all our time since then loving on her and adjusting to the extra chaos a tiny little being can bring. Then school started, extra activities for the kids, therapy kicked back in for Colten… We’ve been a bit busy.
This past summer was truly a period of growth for Colten in terms of what and how he’s “doing”. We were off from physical therapy all summer but Colten’s strides in movement and strength have just been incredible to look back on. He’s busted his braces a few times – he really is a mini-Hulk! We even had to get new AFOs remade after ONE DAY of getting new ones after he cracked his previous pair. His twister cables have snapped in two different locations.
What else did we miss sharing over the last four months?
We participated in and helped run the 3rd Spina Bifida Association of Michigan Walk ‘n Roll… a great success!
We enjoyed fireworks at a few places (Colten is NOT a fan of loud noises; we find this is somewhat common among kids with hydrocephalus).
Colten learned to ride a regular tricycle (with adaptive pedals that secure his feet to the pedals) just before we received his adaptive trike (includes the same type of pedals but has a hand-driven crank as well). This was quite a surprise to us and it’s been incredible to watch him learn to pedal, figure out when and how to get his stronger leg in front to get unstuck from places and turn around, etc… We certainly anticipated he would need a hand crank – he has of course, once again, proven us wrong!
He built the “Big Wall of China” as he calls it…
We got prints of the calendar he is on, that will be all over U of M in 2016… How sweet is this?!
Enjoyed a picnic with our Michigan Spina Bifida friends and families – even found out Colten is really Spiderman!
And then the school year started! As I mentioned, Colten has started back up in outpatient physical therapy through Beaumont. And we just redid his IEP (long story) for this school year to give him walk-in PT and OT through our local district. We are waiting one more year to send him to preschool and hope to send him to the same preschool our other boys went to. Our plan is to have him there two years, same as the other kids, then he’ll move on to our local elementary for Kindergarten.
How Colten moves around seems to be the most frequent thing people inquire about so here’s a catch up… We were able to get his new walker repainted yellow by the amazing team at Detroit Choppers – thank you again Rob! Colten LOVES his “yellow wheels”!
He’s been using his walker sporadically. I thought he would use it more but he’s taken to just up and walking around without anything (except braces of course, and usually his cables), or by holding hands. We like to give him the choice of his wheels or “plain” as he calls it (walking without the walker). He seems to be learning where and when he might want his walker or nothing. Every day as we drop the older boys at school, some days he takes his walker and some days he doesn’t. It seems to reflect how tired he is that day, or which boy we are dropping off – we have longer walks into Parker’s school than into Max’s preschool. And with the cooler weather, he’s been asking for a stroller now too.
And now he has another option – forearm crutches, or Lofstrand crutches. Or as Colten said when he first picked them up at the PT office, “Now I have guns!”
We have a pair we are borrowing from his physical therapy office while we wait for his to be ordered. We’re hoping the process is quick as these are just a bit too tall for him and we’ve had to attempt to hodgepodge a solution on them to make them work at the right height for him. We are also hoping to add some padding near the forearms as the hard plastic probably won’t be comfortable for long usage. The crutches are a bit of a learning curve and a frustration. Colten actually walks amazingly well without his walker (especially for a kid who wasn’t supposed to walk at all!), so I assumed the crutches would be easy-peasy. They’re not. They require an intense amount of coordination and patience. And he needs to SLOW DOWN to actually use them properly, until he gets the hang of it. So what happens is he picks them up and just walks along without really using them unless he starts to tip and needs to catch himself. The PTs are patiently working on teaching him the reciprocating movements to coordinate a step/crutch, then opposite step and crutch, etc…
What is nice about the crutches is that because of the forearm cuff, he can let go of the handles to carry something, hold something, etc, and the crutches will hang from his forearms. He can then walk without leaving them behind and without using them if his hands are in fact tied up. In conversing with the PT about my surprise in how difficult they are for him to use, she explained that unlike a typical walking pattern that most people have which includes swinging of arms/upper body in stride with the alternating leg moments, Colten has learned to walk with a walker, which stabilizes his upper body and arms. He has learned to walk while pushing/pulling an object that doesn’t reciprocate like our legs. When he walks without the walker, he is more unsteady and has an exaggerated side to side movement of his upper body to compensate for muscle weakness and imbalance. The crutches will help that, but he almost has to learn to walk in a new way to utilize the crutches. The other challenge to overcome, something he will need to learn, is when he starts to fall backwards. Due to the lack of hamstring and butt muscles, when he starts falling backwards, there is no stumble or recovery – he just plops down. With his walker, the back of the walker would catch him and prevent falling usually. The crutches can do the same, if/when he learns to use them in that capacity. That will take time!
Either way, we experiment with them, try them out, use them. We can definitely see Colten using these in more places than a walker because they’re lighter and easier, as he gets older and stronger. So we are in the process of getting them ordered!
In other family news… Parker is now in 1st grade and was very excited to be a part of cub scouts this year. He also enjoyed some ice skating and hockey skating classes over the last few months. Max is in his second year of preschool and starts a Mini Ninja class at the gymnastics center soon – he’s our future Ninja Warrior for sure… I’ve actually had to tell him to “stop climbing the wall”! Richard has a new class he’s teaching at school – Forensic Science – and is thoroughly enjoying the students and coursework. I’ve taken on a client contract with an amazing event management company that I’m very excited about and loving the work we’re doing so far. And our newest bundle just goes with the flow!
A very special note for today: HAPPY THIRD BIRTHDAY COLTEN!
We cannot believe it’s been three years since you were born… It’s been an awesome road, buddy – and we look forward to many more adventures!
Love to hear the progress this adorable little man is making. You have a beautiful family.
Congratulations on the birth of Sophia! Your family now has a new boss! 😊 Happy birthday 🎂 to Colten!! 🎈🎈🎈. You have a great team!!
An amazing story and an amazing family. Happy Birthday, welcome Sophia, happy new school year Parker and Max and oh congratulations to Kate and Richard – you are awesome!!