8 Weeks Post-op (Derotation Surgery)

Yay!! Grayson's casts came off at his 6 week check up. :) His legs look amazing!! They are so straight and his walking looks great! He's not tripping over his feet or turning his feet almost backwards in very awkward positions while playing. We couldn't be more happy with our decision!

At 4 weeks post-op he was allowed to start walking in his casts....which literally took him a day to master. The ortho doctor couldn't believe how well he was walking in casts. Then at 6 weeks post-op, his casts came off and he's now wearing afos full time for the next four weeks. As soon as the afos were on, he hopped off the table and took off....like he'd never even had surgery or been in casts & immobilized. We couldn't have been more proud. Grayson is such a tough and resilient little guy!

Here he is the day his casts came off and a picture of his straight, chubby feet :)

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):

Walk-N-Roll

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't...at 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!!! :)

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!!

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!!!!

Updates

It's been awhile since I've updated...Grayson has been keeping me quite busy!! In June we had the opportunity to take Grayson to Boston to attend SB Clinic there. The doctors were awesome! We were very impressed with their knowledge of SB and love for finding the best treatment. Since we had not had any bladder testing done in Florida, we were very happy that they did a VCUG study and urodynamics. The VCUG study revealed that he has level II reflux in his left kidney. Urodynamics revealed he has an overactive bladder constantly contracting and his bladder is tiny. =( We were very disappointed to hear this especially since we had been asking the urologist in Florida if everything was fine as far as his bladder and kidneys were concerned. He didn't want to do any testing unless there was a problem.  Well, honestly I didn't really like this approach which is what led us to Boston to see some of the best doctors in the country. They recommended we start cathing him and start Ditropan to relax his bladder. So, since we have returned we have tried cathing...unsuccessfully and have been waiting to see a new urologist here. Yep, it's been 6 weeks and we still haven't gotten in to see the uro. Our appt. is Friday...finally! We are taking the results from Boston and getting this urologist's opinion for treatment and hoping he can teach us how to cath.

We really, really also liked the neurosurgeon there! He agreed that since Grayson does not have hydrocephalus and is doing great physically that we did not need to do a sedated MRI at this time. We could wait till he was 2! We were very happy to hear this since our neuro down here was really pushing for it but we weren't comfortable sedating him for a MRI "just because". We did however get a Flash MRI done of the brain to make sure his ventricals were still stable. And thankfully they are! We have escaped the shunt!!!

Ortho, smortho...not our favorite part of SB. Grayson's hip dysplasia isn't improving a whole lot. While his hip is staying in socket, the socket is still very shallow. So he gets to stay in the hip brace a little longer. =( Also, his tibial torsion has not improved and the dr. said it is pretty severe  in his left leg. So we are now in new braces. I did some research online about treating ITT and found a brace called the "Wheaton Brace". So off to the ortho I went and home I came with a new prescription for the Wheaton Brace. The ortho dr. said this was our last option and if it didn't work he recommends doing surgery when Grayson turns 2. The Wheaton Brace seems to be a very good option. It keeps the knee bent at a 90 degree angle and puts all the torque onto the tibia not the knee or hip (which was the problem with our last braces with the thigh cuff). He only has to wear them at night and he can wear the Wheaton brace with his hip abduction brace. It is supposed to correct ITT in 6 months when worn at night. Fingers crossed!!!

Now on to some fun stuff! =) Since my last update, Grayson is a crawling machine and boy is he quick! I can barely keep up with him! He also started pulling to a stand a few weeks ago and is just beginning to try to cruise. He can take about 3 steps along the couch before stopping. We are just truly amazed at how fast he is progressing! We have even gotten him to take a few steps behind his toy walker (with our help of course)! All encouraging signs! 10 months ago I didn't believe he would be doing this well seeing as he functions at an L5 but our little guy continues to prove us wrong!

Here's a few new pictures:

Like I said, into everything!! This time he pulled the basket on top of him and trapped himself! Super cute!

Grayson LOVES climbing and sitting in his chair.

\

Again, into everything! This time its the dog food. This could be his most favorite thing in the house! Baby gate was a necessity! =)

Super cute in his giraffe hat. He never lets me put hats on him!

Standing and dancing to the music at his Leap Frog table. He LOVES that toy!

For all his hard work we rewarded him with his own kitten! He LOVES cats!!

Grayson and Yoda playing =)

A new favorite thing...standing in his crib tossing out his toys, pacis, etc.

Standing and pulling toys out of the basket

Getting his toys off the coffee table

As you can see he is quite mobile and really enjoying it! It seems like every time I turn around he's either standing or into something! And I LOVE IT!! So very proud of that little guy! We are very excited to celebrate his 1st birthday on August 2nd. Boy, did that year fly by!! 

Crawling!!

Grayson has finally started crawling after spending the past few months rocking back and forth. About a month ago he started to move his hands forward and then his legs but never did it together. Then last week he took about 2 "steps" towards the cat. And here we are a week later and Little G is crawling all over the place! He's still a little wobbly but he's going!! So proud of him for accomplishing this at 9 months!!!

Here comes trouble!!

Last week we also met with another family that has a little guy with SB. His mother is a photographer and took some time with Little G and captured some awesome pictures! I love his little smile!