At least that’s what Parker calls Colten’s new braces! As of our last post, we were waiting on some equipment – new AFOs, KAFOs, and a walker. Still no official walker, but great timing on the leg braces! I’m sure I won’t be so lucky every time he gets new braces, to get him to sit HAPPILY here next to all of his braces. But for now, this kid just loves his Momma enough to do it. Love him. Look how big he’s getting!
It’s hard to keep this boy still outside in the summer, so we don’t really try. He uses anything and everything to move around – crawling, his mobile stander, pushing his wagon. Today he actually was trying to walk while pushing TWO things, one with each hand. Really? Is he trying to make it more complicated for himself or just impress us? Mostly Colten crawls when outside – thankfully he has figured out how to lift his knees just enough so he doesn’t hurt them – he must have some feeling there we figure. But it means he’s dragging the lower leg of his leg and brace as he goes. This has wrecked havoc on his AFO straps. So much so that I had to break out the sewing machine and add a patch to get us through the last week before getting his new braces.
This past Friday we went for the new braces – with a stop on the way to Ann Arbor to meet a very generous and kind family from Canton, Michigan… I didn’t ask permission so I won’t divulge their names but their little boy has recently started preschool and decided he no longer wanted to use his walker (go boy go!) and took off walking! Awesome for him, and great for us – they happily loaned us his walker while we wait for Colten’s to get submitted by Macomb ISD and then approved by insurance. This could take months. We are always amazed at the generosity other families in the Spina Bifida Community are – we hope we can pass on some of Colten’s equipment to other families and kiddos when the time comes! I’ll talk more about the walker in a bit and share some video and pictures below….
Back to the braces. Colten was casted for these about 3-4 weeks ago and thankfully, there were no insurance hold-ups so we went in Friday for them. I showed the orthotist, Molly, how much he was tearing through the top strap and she took the AFOs back to their lab right then and there and replaced his new AFOs top strap with a Dacron strap. This is a much thicker, more durable strap material. We’ll see how it holds up! Colten’s AFOs are made by Cascade DAFO. His last pair had dinosaurs. This time I let Colten choose between a car/truck pattern and a dot pattern (because it looks like balls – and he LOVES playing ball!) – no surprise, he picked the balls. So we now have red/blue AFOs with a snazzy ball pattern for him. They fit great and so far, the better strap mechanism seems to be a good fit.
After making sure the AFOs fit, and trimming them where needed, Molly had me put longer socks on Colten (for others looking into socks for KAFOs, look up Rock-a-Thigh Baby; on Amazon.com you can get some patterns as “add-on items” for less than $5/pair; they have some cool patterns, solid colors, and most have rubber designs on the bottom for traction; I felt they ran small but Colten has big feet so maybe not – his AFOs fit in a size 5.5-6W shoe and he is wearing Rock-a-Thigh size 2-3 years). He was okay with this but NOT when she started putting the KAFOs on (Knee-Ankle-Foot Orthosis). The intern worked hard to distract Colten with the other KAFO design pattern – we picked a construction design and they recommended tan straps. Ugh. These look like way old, outdated medical contraptions:
Not cool looking at all in my opinion. It’s too hard to see the pattern unless you’re looking at his backside anyhow. Next time we might have to just do a solid coloring. So, the unhappy boy thankfully sat long enough for us to try these out on him and have her cut away a few areas so they would sit comfortably on him. Then we tried walking in them with his push wagon. Let’s just say it was incredibly discouraging. The KAFOs certainly feel like a step backwards in some regards – here is this 20-month old boy taking STEPS with support and we want to throw more bracing on him? Richard for sure got emotional when I sent him the picture of Colten in the braces from our appointment. There certainly is something disheartening about doing MORE bracing. But it doesn’t hurt to try them and see how they work.
The point of the KAFOs, per the PM&R doctor, is to help keep his leg straight. When Colten takes steps behind his wagon, in a walker or in our parallel bars, both feet often turn way inward – sometimes so far inward that they’re pointing backwards. Dr. Green hopes that by locking the lower leg into alignment with the upper leg via the KAFO, we will correct this. Why is this important? It’s all about alignment. If a child with Spina Bifida is going to walk, we want to try to provide them with a foundation strong and straight enough to walk on. The more contortions of the ankle, knee or hip, the harder it will be to walk. Now let me say this: we have no expectations for Colten and walking. We are elated that he is trying and interested in walking. We will encourage him to walk so long as he is comfortable and willing. At any point, should Colten choose to be mobile in other ways, we will support that. We have learned through many other families that even kids that walk early – and kids that walk later – many eventually opt for a wheelchair because it allows them to put more energy into school, life, athletics, social events, hobbies, etc… When a child puts so much of themselves into walking, it’s hard to have anything left for the rest of their world. So they make decisions for how they want to be mobile. And we are okay with that. Walking is overrated anyhow.
Well, Colten did NOT walk well in those KAFOs. He couldn’t seem to bring his legs around. I realized the next day as I looked at the braces that they are simply more cumbersom. They are heavy – a metal rod goes down the side to keep the upper and lower leg in alignment. There’s an entire extra section of bracing around the thigh. For a kid with weak legs and hips as it is, this brace is a considerable weight. So we dealt out some patience and very low expectations. And tried again in the parallel bars at home.
Want to see how he did? Here’s a video of him with his KAFOs on taking steps in the parallel bars.
So we continue to use them when we feel we get a chance. As I said, they’re cumbersome – he is struggling a little to crawl in them, but certainly is trying to figure them out. It’s not so much the crawling, it’s repositioning his legs and transitioning from crawling to sitting to crawling, etc… Hopefully the metal rods don’t tear up the floors! [ VIDEO of Colten crawling in KAFOs ]
After we picked up the new braces Friday we enjoyed some time in a playground I LOVE near the Orthotics & Prosthetics office – County Farm Park. If you’re even in/near Ann Arbor, with or without kids, this is an incredible park system. It has a decent trail system from what I understand – I’ve only explored a small part of it with the boys. It has a beautiful area of community gardens – you can see all the plots and what people are growing. It has a younger kids play area and older kids with some accessible options. A few swings (including two accessible ones), a cool sand area, and some other farm-like structures. I try to come here just about every time we are in the area because it gives the kids a break from the car–doctors office–car routine. I had all three boys with me that day and when I went to go push Max on the swing, Colten discovered new heights in the sand area. I still am not entirely sure how he got up into the first bin (I did see him get into the second one), but watching him do this stuff around the house, I know it was a massive upper body lift and lower leg pull. This kid has arms like Popeye!
Back to the walker. We are so excited that a local family loaned us theirs – we know Colten’s has not even been submitted yet by our ISD PT so there’s no telling how long this will take. But we wanted Colten to have an option at playgrounds and around the house and just anywhere. He seems eager to be upright and to walk. The push wagon is okay, but encourages a bent-forward position which the doctors try to discourage in kids with SB because it doesn’t help strengthen their back and can actually cause other back issues later. That’s part of why they do the reverse walkers for children. Colten has used this sporadically – we have taken it to a couple parks already, on a visit to my sister’s house, to physical therapy, outside in the yard, and of course in the house. He will do anywhere from 3 to 20 steps depending on his energy, what he’s after, what other options are available for moving, if his PT is pushing him and Momma has fish crackers, etc… We are so glad he has it and that he seems to like it as another option. So of course, some pictures and videos…
Today was Colten’s last contact with the EarlyOn program through Macomb ISD for the summer. We attended a Farm Day event where they had a small gathering of farm animals for the kids to see/pet/feed/run from. Colten was in his mobile stander which I think worked in his favor because the animals could only get so close to him. He thought the goat bleating was hilarious, but NOT funny when the goat came up to him. He loved the animals from a distance but wanted nothing to do with petting or feeding them. But he sure impressed some of the attendees there with his wheeling skills. I was quite surprised that Colten was the only child there with any obvious physical equipment (his braces and mobile stander). I know the ISD services a lot of different needs with kids – speech, behavior, feeding, fine motor, gross motor. It just surprised me that with 10-15 other kids, he was the only one that had a stand-out disability. Maybe other families with kids with physical impairments don’t care for these types of days because it can be hard to get a child with equipment around/near the animals, but the staff was wonderful. They brought a chicken to Colten for him to pet (he didn’t) and as the crowd dwindled, they moved the hay bale and let Colten wheel into the fenced area for the ducks/chickens/fowl/whatever (he went in and then quickly realized where he was and turned around and came out).
I didn’t actually think of that whole thing – him being the only one – until I started writing this post and thought back to the other kids. I’m glad that I am in a place now where we can go somewhere and instead of thinking, “Man, this sucks. I’m the only one here that has a kid this age that isn’t doing X, Y, or Z”, now I go to these events and think, “Yeah, that’s right, you watch how awesome this kid is when he spins 360s in his wheels!” or “We’re just enjoying the animals – this is great!” (without any real thoughts about Spina Bifida or a disability). That’s huge. As much as we are positive as can be with Colten, there is a lot of parental guilt, depression, frustration, anger, helplessness and more when you have a child with a disability. So to feel like we went somewhere and never once did I look at another kid and think, “Colten should be doing that too…” – that’s huge. HUGE for me.
So now, we move into summer! Previously I posted that Colten was scheduled for another surgery June 23 with his urology doctor. That surgery is now July 21. We have nothing major between now and then that I can think of and we are loving the warm and HOT weather summer is bringing. This means we’re out of the house doing a lot of summer stuff so if you don’t hear from us, assume all is well. We’ll be sure to post again around his surgery and when he gets his new walker. Hopefully he’ll stay out of trouble otherwise. As for the rest of our clan…
Parker finished up his last year of preschool last week. Max and Parker started their first summer school program this week (yes, we are cruel parents). This is Max’s first preschool experience. The boys will go twice a week – Max all summer, Parker only half – then he has some other cool summer camps he’ll get to go to. Richard is done with school for the summer and using the last couple weeks of having a sitter on hand to prep for next school year (a teacher’s work is NEVER done!) – then he’ll enjoy lots of summer days with the boys while I work.