Estim and Kennedy Krieger Institute

A little while ago we met another local SB family who told us about estim- Electrical Stimulation. They had wonderful things to say about estim therapy and their son. They said it was one of the best things they have done as far as improving and gaining function. They told us they had went to Kennedy Krieger and participated in their Spinal Cord Injury Gym Rehabilitation program. It is a 2 week program that focuses on strengthening and rehabilitation through the use of estim during physical therapy. So we decided to look into it. A few phone calls and lots of medical records sent up later, we had an appt for an evaluation at KKI.


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:

And He's Off!

It seems like just yesterday Grayson first started to take a few steps independently. Then all of the sudden I have a full blown toddler right before my eyes!! Yes, he is walking all over the place and has suddenly realized his new found independence. Which of course means he has a mind of his own and wants to do what he wants. And I love it!!!  Watch him go (carrying his fireman hat)!!

Yep, I'm pretty sure he has this walking thing figured out! My son with SB (at L4/5 functionally) is 18 months and walking independently with afos! I am so amazed by him and incredibly proud! He has worked very hard to accomplish this and he is now reaping the rewards of all his blood, sweat, and tears! =) Go get 'em Little G!!

More Independent Walking

Last week Grayson finished up his final week of Intensive Physical Therapy. It was a 3 week program and a few weeks ago I posted him starting to take steps at the end of the second week. I just wanted to show you the improvement over a one week period. He is really starting to move now and he finally figured out how to stand up on his own this weekend!! Yay!!!

Here's a short video of him walking at pt:

Taking Independent Steps

The past three weeks have been huge in Grayson's gross motor development! On New Year's Eve, Grayson stood on his own for the first time!! And he stood for about 5 minutes!!

Look at my Big Boy!!

Then the following week Grayson started Intensive Physical Therapy. He goes for 2 hours a day, every day (M-F) for 3 weeks. They are working on strengthening his core muscles (Lower Abs), hamstrings, glutes, and hip extensors. They are teaching him how to stand with his pelvis in proper alignment and to use his pelvis to shift his weight rather than his trunk when he's walking. He is also walking on the treadmill unweighted for 10 minutes a day to help teach him and his brain the correct heel to toe walking pattern. This is some of the research the Christopher Reeve Foundation was doing before he died and they were having great success with the Unweighted Gait Training. So after 2 weeks in Intensive PT Grayson has started taking some independent steps. The most he's taken at once has been 17 =). Today, I took a couple videos of him because he was doing so well. Of course by the time it occurred to me to take out the camera he was getting tired, but I still got a pretty good video. =) Did I mention this is at the end of a 2 hour PT session?! My little man loves PT!

Taking some independent steps:

Last weekend, Grayson also squatted down, picked up a toy and returned to standing without any support! Usually he holds onto a table or something when he squats to pick up a toy, but after all the squats he's been doing in PT, he's willing to try on his own. Another huge accomplishment happened on Tuesday when Grayson let go of Daddy's hand and started walking towards a chair on his own without any coaxing! He is gaining confidence to try to walk independently. =) GO GRAYSON!!!! We are so proud of you Grayson!!

SB clinic & Update

Wow! It sure how been a while since I've updated this blog!! So much has changed! Grayson is now walking holding onto one of our hands. Balance is still a struggle for him at this time but we are working hard on it. We joke and tell Grayson that he has 2 more months to start taking independent steps. He hasn't missed a milestone yet, and most kids walk independently at 18 months (he's 16 months now). Although, I think he will miss this milestone, we still remind him that we "expect" him to at least be trying to take a step independently. ;) We've been really trying to get him to stand on his own too, but he still wants the comfort of holding onto something, even though he doesn't need to. Right now we are battling a lack of confidence he has in himself. Grayson is now in his AFOs full time as well as detrotaion straps (from Sure Step) to hold his feet in the correct place. His tibial torsion hasn't improved any yet, but he's really just now beginning to stand and walk alot. So still hoping that it will improve in the next few years so we can avoid a surgery. But we absolutely LOVE the derotation straps. They make an unbelievable difference for him. =)

Last Friday we attended SB clinic. Wow! It was our best clinic yet! Our urologist said his kidneys and bladder look perfect and the reflux he had on the one side was gone! Yay!! Awesome news =) Ortho said Grayson's hip has improved "significantly" and for a SB kid he said he's never seen such improvement in a 6 month period! Great news! Its only about 6 degrees from where it should be and his socket is twice the size it was 6 months ago. So, more time in the hip abduction brace but at least its doing the job its supposed to (and Grayson doesn't mind). And for once Grayson was actually cooperative. He kicked for the doctor when asked and showed him his great leg movement. Ortho was very impressed with his walking, especially since he last saw him in September and he was barely even starting to walk. We also saw a pediatric physicist. She said Grayson looked really good and was impressed with how well he is doing. She said as far as SB kids go, he's "at the top". =) Yes, we LOVED hearing that! We didn't get to see Neuro since he is no longer part of our SB clinic. He is now only practicing at one hospital where he is the director of pediatric neurology. But his MRI in August showed his head still was stable and there was no concerns there. All in all, everyone was thrilled to see his progress, as are we! We are still in absolute shock that our little man who functions at L4-L5 is doing so well!

We have recently saw some new movement in Grayson's legs. He hasn't ever really shown any signs of hamstrings or hip extensors before. But in the past month we've caught him numerous times lying on his stomach lifting his legs (lifting his feet towards his cute little booty).  And when we lift him in the air on his tummy, he can pull his legs up straight instead of them just dangling. So exciting!

We also signed Grayson up for Intensive Physical Therapy starting in January. He will go to pt every day for 2 hours over a 3 week period. The goal is to focus on strengthening lower abs, hamstrings, glutes, and hip extensors. He will also spend time on the non-weighted treadmill where they will work on the correct walking pattern--stepping heel to toe. Additionally, they'll be working on his balance. We are very excited to give this program a try. We've heard some wonderful things about it!

Last week we started Grayson on a new bowel management program. He's been taking miralax for over a year now to help with constipation. After watching Dr. Levitt's Live chat  we started using a senna instead. We.love.it! Instead of going all day long, Grayson now is going once a day. Awesomeness! We give him a dose of Little Tummies Senna before bed each night and once he wakes up in the morning he empties out the system and then he's clean the rest of the day. So, so nice! I wish someone had told me about this senna months ago!

Grayson is keeping us plenty busy! He's your typical 16 month old...into everything and always on the go! He still has a love affection for our cats. He is constantly harassing them, pulling their tails and pulling out tufts of fur. These cats are so good with him. We can't believe how they just lay there and tolerate it! The kitten (who's not a kitten anymore) often naps with him in his crib. I find them in there together quite often and its so cute! Grayson's new favorite thing to do is pull ornaments off the tree and throw it to the cat so he can play with it. He's obsessed with walking and is always tugging on my pant leg so he can walk along with me. =) Oh, and we've began the toddler temper tantrum stage when he doesn't get his way! Full on hitting, biting, scratching, and pinching! He is beginning to talk more and says 7-8 words (his favorite right now is mama), a few animal sounds, and 7-8 signs. One of my favorite things is when he mimics my facial expressions...super cute especially when I'm giving him a "mad" look because he done something he shouldn't. So hard to keep a straight face when he gives me the mad look back =). Grayson is beginning to eat better. Loves his pediasure and is starting to accept foods off a spoon again. He still nibbles on finger foods but doesn't eat really enough of anything to matter. Right now he's living off pediasure. Our pediatrician wants him to stay on it till at least 18 months. Hoping he'll gain some weight. So far, he hasn't gained a single ounce in four months! 700 calories a day and this kid doesn't gain weight! He is go-go-go! Guess he's burning it all off!

Here's Grayson cruising along one-handed:

Supposedly "napping":

Enjoying the Fall weather in Georgia:

Showing off his walking skills at Walk-N-Roll Orlando:

Visiting Santa:

A sneak peak at him walking:

WALKING!!!

So we have had Grayson's nimbo walker for about 2 weeks now and Grayson has shown absolutely no interest in it. Everyday we stand him up in the walker and try to get him to go. Usually he just sits right down and crawls off. Then yesterday, I stood him up in his nimbo and....he took off!! He walked across the living room! I couldn't believe it! So I turned him around and yep, sure enough he walked across the room again! So today we took him outside to go for a stroll. Check it out!

http://www.youtube.com/watch?v=-kfH2PjFAM8

We are proud parents tonight! Grayson is barely a year and has just started walking with his walker!

Yesterday, Grayson was full of surprises because I also found him doing this:

Looks like the beginning of a very mobile little guy!! =)

1st Birthday and Taking the First Steps!

So this week our Little G turned 1! Wow, that sure went by fast!!! Our neurosurgeon finally cleared him of not needing a shunt! Yay!!! What a great birthday present! =) So to celebrate with took the little man camping and to his favorite place...the beach!

Where he can eat the sand...

Wash it down with some water...

and laugh at the sea gulls.

Then that night he had his very own dragon cupcake...

To smash with his feet!

Then today, our Little G decided he was ready to take his first steps with his play walker!! We are waiting for his posterior walker to come in and thought we'd give his play one a try!

Not bad for his first steps =) and he had one very excited Momma and one very excited Daddy!! We are truly amazed with how well our little man is doing!! And, by the way, he is taking those steps without any braces! =) Amazing how 1 year can change so many things~bring new hopes, alleviate many fears, and love more than words can describe! Happy Birthday Little G!!!!