Let's talk braces. AFO, DAFO, SMO

Brendan has worn leg braces since he was just 2 years old! He was always put into AFO's. AFO is short for Ankle Foot Orthosis. I never knew any better. I thought the orthopedics and doctors knew what they were doing and that was the brace he needed. 12 years later I realize I completely disagree with putting your child into AFO's. It completely limits them and does NOT allow them to gain any muscle mass. I was told to have Brendan wear them all day long. Always while walking, always while in his stander, basically he shouldn't do anything without them on. I wasn't as internet savy then as I am now. I did try to research and belonged to some support groups but honestly life raising a disabled child was so different 12 years ago. I am sure you learn as you go but often we just listen to these professionals and truley believe they know best.

12 years ago Brendan had zero muscle mass in his legs. He serioulsy had chicken legs. His thighs were the almost the same size as his calves. His calf was the same size of his ankle. His knee caps looked huge compared to his legs. I wish I had known. I wish I knew to have him walk without braces.

Thankfully I stayed in St. Louis after SDR for a few extra weeks so he could have additional therapy. Dr. Park had SMO's made for him. I LOVE SMO's. They gave him some ankle support but allowed him to gain the muscle he needed. He walked great in them. I still 2nd guessed myself from time to time becuase you always think as a parent you don't know as much as the professionals. However, I recently read something a mother wrote about her child being forced back into AFO's after SDR. At first her child wore the SMO's but a year or so later she was told that her child needed to wear AFO's again. Well the mother first hand witnesed her child lose all the muscle mass they worked so hard to build. We have worked 2 years and there is no way I want his muscle mass to decrease. I would cry. At that moment I knew I needed to trust my gut. I knew I was making the right decisions. However the story doesn't end there....

Over the Summer Brendan had a major growth spurt. This caused his hamstrings to tighten. As children with CP grow their tendons become shortened due to the spasticity pulling on them their entire lives. Since Brendan had SDR at a late age he needed SPML to help lengthen his tight tendons. He was walking horribly, with a crouched gain and had foot drop. Brendan needed his yearly x rays of his hips and spine and had an appointmetn with his orthopedic. After literally watching Brendan walk 10 steps he immediately said he should go back into AFO's. I said "no way. I do not want him in AFO's. He has finally been able to gain muscle and he can not walk well at all in them. I want to keep him in SMO's'. He reluctantly agreed. However, when I arrived at his orthotic appointment to have him casted for new SMO's we were again was told he needed different braces. This person was amazing and personable and took the time to really watch Brendan walk and asked us a lot of questions. She highly recommneded more than an SMO. So I 2nd guessed myself again and I listened to what she had to say. I told her there is no way I want him in AFO's. He can't build muscle wearing them. So she recommended the DAFO. (although his braces do not like like DAFO's at all) She explained them and unfortunately I pictured them a bit differently than what they actually are. They are in between an AFO and the SMO but still very restricting. I agreed because I knew we still had his SMO's (unfortunately he has now completely outgrown them) and I asked her to heat them up and help him fit into them longer. She did this for me and he was able to wear them for many more months. I asked his teachers to report how his walking is with the DAFO's on and they feel he walks better with them on. I send him to school with them and that is it. I work him out, have him ride his bike and have him walk without them on. At least I know he is in fact still gaining muscle because he recently needed the tops of his DAFO's blown out (right below the knee) because they were too tight!

I asked Brendan today if he rather walk with or without braces and he said without. I asked if he likes to work out with or without braces and he said without. We just stopped using his smo's last month because he told me they were causing him pain and it felt better to not wear anything at all so I listened to him and threw them in his closet.

I really have no idea what the best option is. I don't know who to ask. I asked Dr. Yngve his thoughts when we were there for SPML and also recommended staying in the brace he has but to have the foot constantly adjusted as he gains strength. (I don't even know what that means and will have to ask his opinion again when we see him in a few weeks) I am not done researching and I won't stop finding what is best. I am looking into axiobionics. I want him to have what he needs but also allow him to use his own muscles. I want his body to learn how to walk with a normal gait without having a brace hold his leg and foot in a fixed position. I have heard of a doctor in NY (Dr. Jordan) whom is amazing at creating braces that are best for your child. However NY is 5 hours away and we would need to travel back and forth 3x just to get these braces which is a little difficult when you have 5 kids! I have heard such good things about him so it is always in the back of my mind. Not to mention NO ONE around here agrees with SDR let alone knows post op care. I feel alone in that aspect.

Here are some photos. The AFO's (blue) were made only a few months before SDR. Notice how they are the same size top to bottom. You can see how much he has grown because both of the tall braces end at the top of the calf. I also see major ankle pronation going on in the right AFO. His DAFO (black) looks pretty normal on the right which is awesome. SMO's will always be our favorite and I will ask to see if a new pair can be made because he can't work out in the DAFO's even if I wanted him to. I don't think insurance will pay for another pair just yet. Maybe someone can work their magic and help us out.

Drew patiently awaiting the arrival of his green squid amiibo for Splatoon.

Brendan is getting so strong

I wish his right side was as strong as his left. His left side amazes me. He would be very well off right now if it wasn't for his entire right side dragging him down.

Derek and I work him out 3 x a week and tonight was one of those nights. I had him basically leg press me. I weigh 114lbs and was pushing back and he would push me right off. I would try with all my might to push back towards him and a few times I could not! I was impressed. We will have to get a video. We usually have him use the total gym but we switched it up. I am pretty sure the total gym has really helped him gain strength.

We had him walk for 5 minutes to see how his knee reacted. He said it only hurt a little and only while he walked. He didn't want ice or advil.

Lately he has been going on the floor in his knee immobilizers without any fight. Maybe because we have been doing it multiple times a week and it has become routine and I never take no for an answer. I am not sure but I love that he just wheels over and completely cooperates. I set his laptop up for him and he handles it for an hour.

We are trying to find something fun for him to drive this Spring and Summer but he has outgrown most things. He has been begging me for this certain jeep. I haven't been able to say yes yet due to a few reasons.
We have nowhere to store it.
It is huge and pretty sure it will destroy the yard.
We aren't good with engines and have zero mechanical abilities.

It is so hard to say no. He has the biggest smile whenever he talks about it. He has always been obsessed with driving and like I said he has outgrown everything.

We tried the power wheels go cart recently and he is huge. Way too big. :(

This is the Jeep ATV he wants so badly!

We are Five Kid Life

On the Road Again & Our New Vlog

Three weeks from today Brendan and I will be in Texas again for another week of intensive therapy. I am excited but nervous because recently he had a tendinitis flare up. Last month we started really pushing him on the treadmill. He was amazing us and beating records by the day. He walked 30 minutes straight without one single break. It was incredible. But then his knee started hurting. He had been complaining about it for a few weeks and I kept saying I need to bring you to the doctor and figure out what is going on. He never ever complains about pain. I knew something had to be bothering him. His orthopedic randomly called and said it was time for hip rays so I figured perfect timing, let's go! The doctor told us he has tendinitis and we had to calm down his work outs. It really bummed us out because we were finally pushing him, finally seeing progression and BAM we had to hold back. Cerebral Palsy always wins.

He had a regimen of advil and icing his knee and he said it only hurts a little bit but we haven't been working him out as hard. We haven't had him walk on the treadmill at all but kept him walking at school and to therapy. We had a few amazing days of warm weather and he rode his bike for two days and loved every single second of it. I worked on some leg exercises and basically let him heal. I have to bring him in for x rays and back to the orthopedic in a few weeks.

Then we will be Texas bound AGAIN! We will head to Walk this Way USA for one week of therapy with Mike Poole. I have no idea what to expect this time. I am concerned that his knee will act up. I am worried because he is still crouching and I don't know how to fix it. I have done my research and asked a few people and we all believe it is due to weak quads and gluteal muscles. It has been such a long process and progression is so slow but I still feel SDR surgery was the best decision we could have made. He is a spastic quad so he will most likely never walk on his own and I am okay with that. I am happy where he is and the fact his body won't deteriorate as fast or as badly as it would have without SDR.

We are also visiting Dr. Yngve since we will be in Texas for his SPML post op appointment. We will drive 1 1/2 to Galveston after therapy one day and then we are planning on staying for the evening. We are going to check out a candy shop that Brendan wasn't up for due to surgery last time and go out to eat.

Our family has decided to Vlog. Why? We thought it would be a really fun hobby for our family. We are horrible at recording the kids and this will 'make' us. It will be awesome for them to look back at all the memories created. It will help us bond as a family since 4 of the kids already love YouTube and making their own videos. We are just going to show our real life. Life with 5 kids. Life raising a disabled teenage boy. We just posted our first video and plan on posting weekly. Brendan loves it and is probably the child most into it so far. The girls both act like teenagers already and think their parents are annoying so we will see how it goes. It is called 5 kid Life. Subscribe to our channel to see more.


I will leave this blog with Brendan loving a roller coaster ride in Disney. Did I even write about Disney? I may have to create a new post. Brendan absolutely loves going on rides. It is difficult especially when I have to get him into a tight space all on my own but I will never not take him on because just look at that face: (Rock 'N' Roller Coaster at Hollywood Studios)

2 Year Anniversary - SDR

Part of me can not believe it has been 2 years already since he had Selective Dorsal Rhizotomy. The other part realizes we have all put in so much time, effort, tears and sweat over the last two years that there is no way I wouldn't know how long it has actually been.

Honestly it has NOT been easy. It has been hard. We have all shed some tears. We have all lived life a little differently since that day we handed him over to one of the best surgeons in the United States, Dr. TS. Park. We were watching videos today and were reminded of how bad cerebral palsy was deteriorating his body at just 12 years old. He could hardly walk. He was so stiff and didn't bend his knees. He basically shuffled around using mostly is arms propped up in his walker. He was on his toes and I knew he wouldn't be walking for much longer. He was headed into full time wheelchair usage at just 12 years old. I am so happy I finally decided to go ahead with the surgery. It took me 9 years, yes 9 years to say "Let's do this". I will say it takes people months to decide now thanks to facebook groups. 9 years ago I felt alone. I lived a life with my disabled son and lived it alone. I had babycenter and that was it. One group that I joined months after he was born searching for answers and advice. So much has changed on the internet in the last 9 years. Parents are very lucky to have the support of all those groups and parents. I am always chatting with people and encouraging them and sharing our story.

The last year was not an easy one. Someone decided to grow over 3" which caused him to walk crouched which caused pain and made walking very difficult. It came out of nowwhere. Over the summer it was very apparent he needed SPML. Of course me being the mom that I am decided to throw in a right bicep tendon transfer making recovery BRUTAL!!! It was so worth it but it has been almost 4 months and he is just beginning to progress again. SPML was the best surgery he could have had after SDR and he is blowing away his prior progress.

Brendan can now:
Pedal his accessible bike for 1 full mile without assistance (I can not wait for Spring to see if he can progress even more)
Walk for 30 minutes straight on the treadmill with out any breaks (this actually caused tendonitis in his right knee which is a total bummer)
Walking is much better but he still needs some major strengthenng in his quads and glutes
He is walking faster in his walker and still has zero supports
Besides his knee hurting recently he was enjoying walking a lot more
Watching previous videos made us realize his speech has improved. Partly due to his brain having less to fight and partly his muscles. He speaks more clearly with better sentence structure and more lengthy conversations. He is always improving in speech but hearing the difference was awesome.
He is continuing to gain muscle mass. Those legs are difficult but they are bigger and he had new leg braces made after his last surgery and we already had to have them blown out because his calves got too large! Can we say EXCITING?!
His right arm was casted for one month and he wore a splint for another 2 months and yet his bicep is popping! Not sure where that muscle came from but it is there
He can pump out leg presses on the total gym one leg at a time and kills it
He can hold a bridge for 2 full minutes
He has gained over 15 pounds and looks healthy
He has finally left size 8 in clothing and we have been buying size 12 recently

He is happy and healthy and we will continue to see what his body can do. Progress is slow, beyond slow. It is hard at times sad when I see 3 and 5 year olds blow past him but I have to realize he is a spastic quad whom was almost wheelchair bound. I was very down for a month after the last surgery. I expected a much quicker recovery. I had no idea his arm would set him back so much. His school therapists wouldn't help at all and still are not helping do anyting with his arm. We had to fight and had a meeting and yet still nothing is being done. I can't fight about it any longer. I stretch it and he attends therapy weekly. They didn't do anything differently after SDR yet for some reason after this surgery they won't touch him. Whatever! Moving on.

I am finally in a better place mentally because he is progressing. He needed time. His bicep transfer was difficult on him with a slow recovery. it hurt him a lot. He acted like he never had SPML but he is still favoring his arm. We will see Dr. Yngve while in Texas for therapy so I am looking forward to see what he has to say. I am hoping he took measurements because his therapist said he gained over 20 degrees in range since the cast came off.

I have to remind myself to still take it day by day. Even 2 years after SDR.

SPML....Texas Style!

We flew all the way to Texas to see one of the BEST doctors, Dr, Yngve, whom performs this procedure. SPML is basically tendon lengthening but only TWO doctors in the US perform it less invasively which means LESS incisions, LESS Pain and LESS recovery time!! Dr. Nuzzo in NJ does not take insurance so with the amount of procedures Brendan had done the surgery would have cost over $10,000 probably closer to $15,000. So a trip Texas was still worth it and we saved a ton of money!!

Galveston was an amazing place to stay. It is actually on an island and was a fun place to drive around. We were able to have a little bit of fun before his 10th surgery! Yes number 10. I can't even believe this kid has been through that many. This number does NOT include botox injections so I have officially lost count how many times my boy has been put under anesthesia. I am estimating around 18. 18 times in his 13 years of life. Cerebral Palsy can be a cruel disability but we try to make the best of it. He enjoys his 'mom time' and traveling. We went on a duck boat tour and learned Galveston was destroyed by Hurricane Ike not too long ago. It is incredible how much they have rebuilt. We enjoyed the rain forest cafe and just driving around. He hasn't wanted to do anything since surgery and I can not blame him. Wait until you see his cast!

What did Brendan have done? Rather.... what did I make my poor boy endure because this was all based on my request. SORRY Brendan, one day you really will thank me!
Brendan had hamstring release in both legs, a left groin release with alcohol block, hip flexor alcohol blocks, right tendon transfer in his elbow and lower arm alcohol block. Why? Brendan was very crouched when walking. This causes him to tire very quickly and not gain stamina. He was also starting to hit his knees together while walking. His left hip was also 25% out of socket so all of this was to help him stand straight, walk correctly and loosen up that hip. His right arm is basically stuck at 90 degrees. He can not straighten it. He can not rotate it and he has trouble gripping his walker comfortably. Everything done to his right arm is hopefully going to help his range of motion and rotation. The arm is a tricky limb with a difficult group of muscles and tendons so he did not want to do too much at one time.

I am feeling very done with surgeries at the moment. I actually feel a bit guilty I put him through this but honestly he is seriously one amazing kid. He has his moments when he cries or yells at me or takes it out on me but seriously this kid is TOUGH! He has this huge and uncomfortable cast that practically goes from his armpit to his fingers. He has little holes all over his legs. He has very large bruises on his left leg which is typical for him after this procedure. I can not show you but I want to cry looking at them. He has NOT even complained about his legs. He just hates the cast! He vomited after I gave him the good meds so we skipped them for a few days and he only had advil. He wouldn't stop complaining today about the arm so we tried the good stuff again and so far so good. I am so beyond proud of him. I can not imagine going through what he goes through. I would be a big crying baby.

I have always worried about anesthesia. I have always been anxious while he is under. I think it has lessened over the years. I don't quite have the sickening feeling I once did. I think I got too comfortable because of course he had some issues this time around. They don't really tell you much and play it down but I got bits and pieces of information from the nurses and anesthesiologist. I think if I pressed for more info they would have told me more but sometimes it is better not to know.

He was so Brave before he went upstairs:

Basically he had a bronchospasm while under and they had some issues waking him up. He needed to be suctioned in recovery and his oxygen was low which bought us a few extra hours in recovery. He needed a few different treatments to help clear his lungs and get his 02 levels up. They let us leave recovery and go to a different room where he proceeded to vomit everything he ate and drank in recovery. He got it on his brandy new cast, all over the bed....everywhere. So we got him all cleaned up and then he was pretty happy and re ate and drank everything so we could go home. We didn't leave until 8:30 at night and had to fly to the pharmacy to grab his meds. It was a long day but he slept pretty well!

It is never a dull moment in this life of ours. We keep chugging along. We just live the life we were given. I am actually thankful I am a researcher and have found these surgeries and procedures that help make him stronger and keep his body from becoming completely crippled. I look back at pictures of when he was 2 and I recently realized that if I had done nothing his body would be very different. He would not be walking at all. He would have no use of his right hand. Both hands would be fisted and possibly not very functional. His body would hurt all the time. He would still be on daily medications and he would still be receiving botox yearly. I am really proud of the person he is becoming. He could be bitter, he could always be angry or sad but he isn't. He just rolls with the punches. I think he deserves a break. No more surgeries for a while. I am just going to work him out and get him strong and show him that this really is all worth it!

He has gotten so big!

We can't wait to get back to his siblings!