Evel Knievel on Wheels

I really wanted to take a video and post it but these things crossed my mind:
1. What if he actually tips?
2. How bad of a mother am I standing here watching him do this and VIDEO TAPING IT?
3. My mother will have a heart attack if she sees this.

Yesterday we were at a track meet (Richard coaches) and since Colten had not been in his mobile stander at all during the day, in he went. There was a lot of space to roll around and there was a BIG ramp up to the bleachers. Big. A small part coming off the bleachers, a 90 degree turn, and then a long ramp down to the ground. Oh boy did the boys have fun running and wheeling! And crashing. So much crashing. All Colten, in his wheels. He would get rolling down the big ramp and had to steer himself straight – but often would over-correct and since he’s still learning how to control turning his wheels, especially at fast speeds, it was quite a bang-up lesson. I’m glad I put bumpers on his front wheels!

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We had few discipline issues arise though that are real and new… The first was Parker pushing Colten as Colten was wheeling down. This got a nice big scolding and some sit down time. I reiterate quite often these days to the boys that "Colten is in charge of his wheels, not you." It's hard to make them truly realize it, but how would they feel if someone else controlled their legs?! Parker did agree that he would not like to be pushed down the ramp from behind either so at least at 5 years old, it sank in. For the moment at least. Then Colten took it upon himself to wheel right into Max without stopping at all. And Colten got a talking to. He's not entirely safe with his wheels yet so we have to watch and teach him. Running into someone as a toddler when you're bobbing and weaving is one thing. Wheeling them over in a wheelchair is a whole other story. And hurts! This might take some time to instill.

Here's a picture of him wheeling out of a very, very long day at Mott Children's Hospital on Thursday:
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So Thursday. It was Myelo Clinic day! (At this point, do you already know to get a cup of coffee, or do I really need to keep telling you this every time?! Cousin Pat, I’m sure you already grabbed yours!) This was a fun one for some reason. Well, I know the reason, all the friends we played with! I’m not sure why the other clinics haven’t been so “friendly” but everyone was very social this time. Doctors had to kick us out of each others’ rooms so they could do their visits! We spent a lot of time with a little boy named Gabe and his parents – they were at their first clinic at Mott. They’re from the west side of the state and are moving most of their care to Mott. We had a lot of fun (okay, I had a lot of fun) swapping stories about our kids and experiences. I’m so glad we got to meet them! Part of the fun of the day started in the waiting room – there were a couple little girls in wheelchairs, another girl using forearm crutches (that Colten kept trying to steal), another girl in a reverse walker, and Colten in his mobile stander. Then a few kids walking around or being carried. It was a pretty young crowd and they were enjoying all the activity of being around each other and chasing each other.

Our clinic was the afternoon clinic, at 12:30pm, but we were at Mott at 9:00 AM because Colten had to do a Quick MRI. This is a non-sedated MRI but of course, you have to lay still. I might actually opt for sedation next time. Oh wait, that’s just for him?! Oh. Yeah, I might still give it to him. They said it was only a few minutes. It felt like 20. I think it really was less than 5 though. It was just of his head and they wanted to get a quick visual on his ventricles and Chiari II Malformation. So imagine you are 19 months old. Your mother lays you on a cold, hard table and puts your head into a trap of some sort, puts plugs in your ears, big earmuff things over your ears, sandbags by your side, swaddles you into a blanket, then pushes you into a big tube. How would you feel?! Colten felt the same way. He got out of the swaddle and I had to lean into the tube and hold his hands down while he pretty much kicked my face with his legs until I could figure out how to position myself to hold everything down from a very awkward angle. Yes, super thankful that he CAN kick me, but the upper cut to my jaw did NOT feel good with his tennis shoes on. He didn’t seem to hold it against me though and snuggled up close when he was done.

Then we had time to kill. We spent some time in Mott’s wonderful Family Center, then went up to the indoor playroom on Floor 8. In all the times we’ve been back to Mott, never once have we returned to the NICU. Other families have always talked about going back and saying hi to nurses. I never did, not because I wasn’t thankful, but I thought – seriously? They have to see SO many patients, and we were only there 2 weeks. They are not going to remember us! When I checked in at the playroom, the desk assistant asked if he was a NICU graduate and if we wanted to let the nurses know. I told her what I just put here and she asked the last name. She said she remembered us (or at least was just being nice!) and we should think about it after we were done playing. So we did, and we ended up running into one of our favorite nurses, Dana, who now has a sweet little 4-month old! It was very nice to see her!

Having fun in the play area… Seemed like a fitting phrase!
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After getting lunch, we rolled up to the Myelo Clinic. Colten spent a huge part of the morning and early afternoon in his mobile stander and LOVED IT. I have to say, after such a rocky start when we first got it, after about a week, he never screamed getting into it and actually has fought me a couple times when I’ve had to take him out of it. This is HUGE because if he can tolerate being in it, it will help his bone density improve, help him strengthen various muscles used in standing, and keep him familiar with maneuvering a wheelchair.

He LOVES playing basketball in and out of the mobile stander! Getting him ready for wheelchair sports early!
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It is so very clear to us now that a wheelchair is often inevitable for many children with Spina Bifida. We know at least two families in Michigan that have children that walk – even walk without bracing (that's you, Gabe and Gray!), and by the age of about three or four, even they opt to provide a wheelchair as an option. It provides these children with more speed and independence. Even though these little superstars can and do walk, even jump and are starting to run, they tire so quickly and easily. There are certain cases where a wheelchair can help them keep up with peers and maintain independence (versus a stroller). So for Colten, who will require bracing for life and who knows what other mobility "tools" (walkers, crutches?), a wheelchair will always be an option. And having used the Bumbo wheelchair and now the mobile stander, it is something far less scary for us. It's just part of him and how he moves. And he moves in a LOT of ways!

Myelo clinic started late for us and ended late but we saw 8 departments in that time… First came the neurosurgeon, Dr. Ramnath. He is the one that does clinic at Mott. While we wish one of "our" pediatric neurosurgeons did clinic, we have been incredibly pleased with Dr. Ramnath so far. He asks good questions, provides very thorough and educational answers, and keeps it all in check with his humor. The MRI scan looked wonderful – small ventricles and no other changes of concern.

Next came in the troop of departments all at once: PM&R (physical medicine and rehab), Physical Therapy, Occupational Therapy, Orthotics, and the Wheelchair Specialist. This one did NOT go as I expected and I'm still not sure how I feel about it. Before I get into what they said, I need to update you on the amazing things Colten is doing.

HE CAN WALK BETWEEN PARALLEL BARS. This is huge. He's not leaning forward or backwards, just side-supporting with his hands. He's taking RECIPROCATING GAIT steps (aka, walking! one foot, then the other), not just cruising sideways. He can TURN HIMSELF AROUND and walk back the other way. He makes attempts at WALKING BACKWARDS. Seriously. Someone totally forgot to tell Colten he wasn't supposed to do any of this!!! Watching him progress a little every day, I sometimes forget how exciting these milestones feel. But as I just typed that, I got a little teary eyed!

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Here’s a video of him in the parallel bars [ http://youtu.be/cOmyYbApokE ]

Awesome right?! By the way, those cost us less than $40 and less than 2 hours of our time. And the other boys have found great fun in using them for gymnastics-like acrobatics!

So back to the PM&R entourage. Dr. Green (PM&R), the orthotist, the PT and me discussed his walking and alignment extensively. Their concerns (which were not concerns about 3 months ago when I saw Dr. Green last) lie in that his legs turn in. They aren’t positive if this is a knee-based or hip-based rotation, and depending on where the rotation is originating from, makes the case for what piece of equipment to try next. At one point, Dr. Green wanted to do AFOs, KAFOs and twister cables. The orthotist said she doubted insurance would cover three. So she took off the twister cables. But why KAFOs??? Why MORE bracing?? He is doing AWESOME with what he’s using?!!! She thinks he’ll do even better. He won’t trip up over his feet and the KAFOs MIGHT help straighten his legs so he’s stepping properly. If the KAFOs help train his mind and his body to straighten out, then he may not need them very long. Or, the KAFOs might not help if the rotation is coming from the hip, In that case, she would then want to brace HIGHER up. Grrrr. From my perspective, he is TAKING STEPS, I don’t give a CRAP if he’s rotating inward or outward! HE IS TAKING STEPS! ON HIS OWN. AND LOVING IT. I fear that putting him in bulkier equipment might make him straighter but also might make him more immobile. However, knowing Colten, he’ll figure out how to adapt just fine and will go about his business. The good thing is, she realizes he won’t want to be in the KAFOs all day, hence the new AFOs (he’s outgrowing his previous pair). He’ll use the KAFOs most often during therapeutic activities at home or at PT sessions. The rest of the day the AFOs will suffice. She did encourage us to keep the AFOs most of the day for protection. There are so many reasons for this: because Colten cannot feel much, if at all, in his lower legs and feet, he could get them in a compromising position and not feel the strain of over stretching or being on something sharp, or even another kid falling on him. Because blood flow is reduced, healing time is slow and can bring about other issues if there is an open wound. He leads a fairly protective life currently. We avoid having him crawl over nails and things that might hurt, but we cannot do this forever and eventually he will need to learn to do leg and feet checks every day. Sometimes even the braces cause sores that lead to extreme issues so being aware of his lower extremities is critical to his health.

I will take Colten back to Ann Arbor next week for his fittings for his new AFOs and KAFOs. This is a sample of what some KAFOs look like. They are all designed with the wearer’s needs in mind so there are tons of different styles. His will probably be pretty similar to these though. Full AFOs on bottom, hinge-able knee (yay) so we can lock him up to keep him standing and bearing weight – yet unlocked for when he’s trying to be more mobile in them, and support around the thigh.
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I told the entourage that we were participating in a walker clinic through the ISD and they actually said very little. Not sure if they were upset that I wasn’t going through them, thinking he wasn’t ready, or just trying to sort through the leg bracing stuff. Whatever! We’re going next week and we’ll see.

One of the social workers popped in next to make sure all was peachy and then we waited for a while on urology. Our doc wasn’t there today (Dr. Wan) but we saw his nurse, Jill. We’ll see Dr. Wan in June and Colten isn’t actually scheduled for more urology test until October so this was more for any other catchup and I did have a few things to cover with her. The first being Colten’s daily medication. We, as a family, are just not good with every-day pill popping. We forget, we don’t care, we would rather not. We do it when we HAVE to. Colten’s bactrim is a preventative measure. He’s never had a UTI (he has bilateral kidney reflux, grade 2) and we are SO thankful for that. We also haven’t given him bactrim in a really really long time. We just kind of fell out of habit of it. He hated it, it doesn’t make it easy to give a kid medicine every day when you’re not sure he really truly needs it, and so we backed off it. I talked with Jill at length about it and ideally, of course, he would be on it. Yes, it’s still preventative but there are so many issues and long-term problems that can come with repeated UTIs, especially those related to kidney reflux, that if we can spare him a lifetime of kidney issues, it will be one less thing to deal wiith. Sigh. Ok, we will try to be better about it. We will discuss it with Dr. Wan in June or October again. It’s possible they could fix the reflux if they have to go into that area to do other things but sometimes fixing the other things fixes the reflux so… yeah, no straight answers. I hate that, really. It’s the one thing that irritates me most about Spina Bifida. No straight answers ever. It’s always a waiting game with so many unknowns. I like answers. And plans.

That was the end of Myelo clinic! OH BUT WAIT, WE AREN’T DONE!!! We had one more appointment scheduled for that day. Because we’re gluttons for punshiment. And while I HATE cramming so much into a day, it’s hard to drive down there often so I combine what I can when I can. And we had to get a followup for his eye appointment. I packed the little man up in the car to drive over to the Kellogg Eye clinic and he was OUT. Didn’t even wake when I took him out of the car and carried him in the wind. We sat down and rested until called back…
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I had almost cancelled this appointment because I felt his eye was doing SO much better, I wasn’t perceiving any inward driftward. Colten woke up for the exam and cooperated quite well for just waking up and being to so many appointments already. He still has some slight drifting they want to continue watching, and apparently, even if he had not been seen for this issue, he would’ve been sent to Ophthalmology anyhow because for children with shunts, they like to monitor their optic nerve. Who knew?!

Alright. I think we’re about done. Colten is sleeping better these days (the sleep-study came back crystal clear!), continues to battle ear infections more often than we care to see, but is otherwise a healthy, happy, mischievous, cuddly 19-month old. Who loves bagels from Biggby but could barely hold his head up…
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We are loving the warm weather, bike riding, running around outside, and are still really enjoying living so close to family. That has truly been the highlight of the past few months!
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4 thoughts on “Evel Knievel on Wheels

  1. Katie, I love reading your blog. I skipped the coffee (too late in evening), settled for a glass of wine. Can’t figure out how you find the time but putting down one’s thoughts on paper makes for good therapy. I loved the first picture of Colten in the hallway; his look is “get out of my way…………” And when I saw him walking at the parallel bars, aloud I was saying “Oh my God, oh my God.” He’s a MIRACLE boy…………. the love of his family is forcing him to keep up, ‘specially with his brothers. You and Richard are blessed………….. xoxox

  2. I love what Cuzzin Pat has said. It is true…….the love of your family will keep this determined guy even more determined!!! Yes!!!! I love your blog, Katie. Hugs.

  3. Kate an amazing story, walking the parallel bars wow, racing in wheels double wow the whole story truly a testament to love and determination – we’re all cheering for you. Maureen

  4. Kate,

    Another nail-biting narrative! I hope you’re considering publishing in the future. It’s a tremendous story recounted beautifully. I love the last photo of these three brothers. You and Richard must be so proud! It’s wonderful how much innocence or naivete can assist someone in accomplishing “medical miracles.” Colten doesn’t know that he “can’t,” so he just does!

    gordon

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