Friday, November 30, 2012

Derotation surgery

After much anguish and anxiety, we decided to move foward with the derotation surgery. It has now been 2 weeks since surgery and I'm happy to say things are going great! Grayson has been in little to no pain. He's totally ok with being in casts and unable to walk or stand. We thought this would be the most difficult part of the surgery. Grayson loves walking. I really can't believe how content he is sitting or scooting around. He hasn't even tried to stand or walk...he just knows he can't. He points to his casts and says, "Boo boos". It's so cute!!

Yesterday we saw ortho for a two week check up. He took X-rays to see how Grayson's legs are healing. The dr. said he had enough helping to go down from full leg to short, below the knee casts! Yay! Grayson can now crawl around and we can work on keeping his hamstrings, glutes, and hips strong in pt. We go back in two weeks again to check on his progress. Dr. says if he has enough healing, he will remove the pins and Grayson can go down to just afos full time :) If not, he has 2 more weeks in casts. So please say a prayer that he's healed enough for afos in 2 weeks!

Here's some pictures before and after surgery:

The day before surgery (you can see how turned in his feet are):

Day of surgery/another shot of how turned in he was:

Right after surgery (we had to stay overnight in the hospital):

Little man on the move...he scooted out of the playroom, opened the sliding glass door, and scooted out into the yard...
(1 week post op):

Laughing when the casts were being cut off saying, "That tickles"!
(2 weeks post op):

View of legs nice and straight before being re-casted in short casts
(2 weeks post op):

Saturday, November 10, 2012


Last month was the annual walk n roll here in Orlando. This year we decided to team up with another family. Our team name was G2. Together we raised over $5000! It was such a fun day! We had a blast hanging out with all our SB family! Here's a few of our team pictures :)

Grayson with his campaign poster:

Team G2: (Photos courtesy of Amanda Kern Photography)

Grayson, Gabriel, and Lyla :)

New Braces & Upcoming Surgery

Grayson continues to do great and simply amazes us with his determination. He is walking backwards now and spinning around. He's trying so hard to run but just isn't quite there yet.

Last month we got a new type of afos. They are Allard's Baby Gait afos. They are made of carbon fiber...the stuff prosthetic running blades are made of. We love them! They help Grayson lock his knees and the carbon fiber puts a little "pep in his step". We are so much happier with these than any of the plastic style afos we've had in the past. And I love that they look like black shin guards. Plus, it's a nice bonus that they protect his shins. He was getting bruised from all his climbing quite often in his Dafos.

Even though Grayson is doing fantastic and walking really well for almost a year now, we still haven't been able to resolve the  rotation issues. His feet turn in...a lot. It's scary how much they turn in, he can even turn his feet completely backwards :/. We had hoped that with time and walking we'd see some improvement but we haven' all and it's been over a year. So our ortho recommended last month we do the derotation surgery on both legs. So on Wednesday he will be having surgery to correct his legs. Ortho measured the amount of torsion at clinic in his pre-op last week...his left leg needs 65 degrees of correction and the right leg needs 45 degrees of correction. Yep, that's A LOT! Since he's so rotated the dr. will have to cut both the tibia and fibula bones in order to correct them. He will cut the bones, turn Grayson's feet straight,and pin the bones....4-6 week in leg casts. We're supposed to keep him off his feet as much as possible during those 4 weeks. Which should be real interesting seeing as he constantly is walking and climbing. So say a prayer the surgery goes well, that he heals quickly, and that by Christmas he's out of casts and back walking everywhere.

Last week we had clinic. Grayson continues to do great! Urology said no changes to his kidneys and bladder. Grayson is still emptying on his own. Senna is controlling the bowels great. At times Grayson is telling us when he needs to go so we are hopeful for future "potty training".  We only have to see neuro once a year since his vents have remained stable and in normal limits. GI still can't find a cause for all the vomiting during mealtimes. We think its due to anxiety so we are pursuing a psychologist that can hopefully help us relieve his mealtime/eating anxiety. Pt thinks he looks fantastic and OT wants to try some sensory stuff with him. Usually eating issues are related to some sort of sensory related issues. So they are suggesting trying a whole body approach using brushes and applying pressure to certain areas. This is supposed to help with any sensory related issues he may have and the hope is it will help relieve some anxiety and help Grayson begin to accept real food, not purees. Sigh....who'd of thought our biggest issue wouldn't be the SB stuff, but eating!!

It seems like ever since Grayson turned 2 he has been learning new stuff so incredibly fast! He now knows and the letters and letter sounds, all the colors, a few shapes and numbers, and is working on counting to 10. His vocabulary is phenomenal...over 250 words. He is FINALLY beginning to put two words together. We have been working on this for about 6 months it seems like. But the past week he's been using 2 word sentences a few times day, increasing his frequency. I think he might finally be getting it, lol!

Yep, this kid is AMAZING!!! :)

Friday, May 11, 2012

Walking without Braces & SB Clinic

A little surprise happened this week... Grayson has decided he's a full time walker! Usually he crawls around in the evenings after we take his braces off, but the past few nights he has decided to walk!! Here he is strutting his stuff!!

And... he has been able to stand from floor on his own a few times! I suspect he'll master this pretty soon!

Today we had SB clinic and I'm happy to report everything went great! Urology said kidneys and bladder still look perfect so the no cathing continues. And he said since Grayson has remained stable since birth we can begin yearly visits and renal u/s! =) GI was able to give us some answers as to why Grayson never wants to eat. Turns out he thinks Grayson has slow digestion (totally unrelated to SB) and prescribed us something to help him digest food faster. Hopefully, this will help our eating situation. Grayson is up two pounds and two inches in the past 3 months!! Yay!! He's finally beginning to grow! It was great to hear since he hadn't gained an ounce or cm in the prior 6 months! Ortho agreed to give us a script for smo's since he's doing so well in his afo's and starting to walk out of braces. All in all it was a long, but great day!!

Thursday, April 26, 2012

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:

Saturday, February 18, 2012

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!!

Saturday, February 4, 2012

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:

Thursday, January 19, 2012

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!!