On April 2nd, we met with a team of doctors and physical therapists, all in the same room, to evaluate Grayson to see if he was a good candidate for their estim therapy program. They evaluated Grayson and spoke with us quite in depth about Grayson, Spina Bifida and their program. We were blown away by how much they all knew about SB. Most of our local drs don't see a lot of SB so it was so refreshing to meet with people who know all about it and have treated many patients with SB. For once, I didn't feel as if I knew more than the doctors! For the first time we were given Grayson's "functional" level. They classified him as an L4-5 meaning he has all the L4 muscles and most of the L5 but is missing the glutes...which he probably has but due to his age it was hard to really assess whether he had them or not. We know he has glutes just that they are very weak (at least that's what our pts have said) but we understand that if the dr doesn't see evidence of it, they won't say he does have that muscle. All in all we agree with his functional level, its what I had always thought he was functioning at. At the end of the 2 hour consult it was decided that Grayson would be an excellent candidate for the program and we were put on the wait list- which is several months long. So we left feeling great about our meeting and headed to the zoo. A few hours later we got a call from KKI. They had a cancellation and wanted to know if we could stay the next 2 weeks to participate in the Spinal Cord Gym and estim therapy. A few phone calls to change our plans and we were able to make it work so we could stay. Luckily, my husband can pretty much work from anywhere as long as he has his laptop and phone. We started therapy the next morning.
What an impressive program they have! Our pt, Kristin, was amazing! She was so knowledgeable and very sweet. We're used to pt's that have only had 1-2 SB patients before Grayson but she has seen lots of SB in their gym. And on most days we had 2-3 pt's working with Grayson at a time. We also had the opportunity to do aquatic therapy while we were there. He got to work on core strengthening in the pool. They sat him in front of a strong jet that was pushing the board he was sitting on in all different ways while he had to maintain balance and grab toys floating around him. He loved it! He also got to walk on their pool treadmill. It was great seeing him practice walking without braces in the resistance of the water.
Back at pt in the gym, Kristin was using two different estim machines in therapy to decide which one worked best for Grayson. The EMPI, which is the machine we now have, worked better for him. The idea behind the estim is for it to contract the muscles helping them strengthen over time through continual contraction. Even though some of the muscles we are using the estim on he can't voluntarily use, its helping to keep the muscles from complete atrophy. Also, the hope is that as the muscles strengthen, they will help support his ankles and other muscles as he walks. It is also supposed to help form the neural pathways and train the brain how to use these muscles. Grayson has some dorsiflexion in both feet, more in the right than left. When using the estim he started pulling his feet up more than we have ever seen! It was amazing! We haven't seen much results as far as plantar flexion but when the stim was used on his calves we did see lots of twitching in his toes. So the hope is that over time the twitches will become more defined movements and eventually we will see some plantar flexion. We will also be using the estim on his glutes and hamstrings which he has but are weak. We can definitely see more pulling of his feet back when the stim is on his hamstrings so we are hopeful it will also help strengthen those muscles. We will do the estim during regular pt and at home alternating between muscle groups. Our schedule is M,W,F we do glutes and anterior tibialis and T,TH,S we will focus on hamstrings and calves. Eventually, they want him to use the estim while pedaling a stationary bike. He's too small for that now but apparently the repeat action of pedaling is supposed to be very beneficial when partnered with the estim. So for now we will incorporate it while walking on the treadmill. When we left they gave us a detailed power point booklet with pictures and instructions on how to set up the estim and what activities to do while using the estim on each of the muscle groups.
Also during our treatment at KKI, we were able to meet with a pt who specializes in bracing. So she came and observed Grayson for a few hours during a therapy session and gave us her recommendations for braces. We left with a script for two different braces since his legs function differently. We will be using the Surestep Indy2 on the left leg and the Surestep Advanced Posterior Leaf Spring on the right leg.
Here's a few pictures from our trip:
Trying out riding a tricycle, still way too short!!
Getting his Easter Basket on Easter morning:
Even though we were out of town we found a perfect spot for an egg hunt:
On Saturday we had the day to ourselves so we took a hike:
And here's a few recent pictures and videos of what Grayson is up to now:
My sister recently got a couple of bunnies. Grayson LOVES bunnies! So I took him for a visit when we got back home. After chasing the bunnies he decided to hop into their cage with them!
In March we had taken him to get his spring pictures. This is his first experience with a bunny. As you can see, he adored him!
One thing we've always hoped Grayson would be able to do but wasn't sure if he could is walk without his braces. Since he just started walking independently a few months ago we figured we were a long ways away from this happening-if ever. Well, like everything Grayson, he had a different plan...
And another cute video of him playing outside: