Monday, February 20, 2017

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.

Saturday, October 29, 2016

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!

Monday, September 19, 2016


Well after growing over 3 inches recently Brendan needs SPML. This time we are headed to Texas where Dr. Yngve will operate on him. He is having a lot done at once but I am super excited to see him progress afterwards.

Brendan is having both hamstrings released, a left groin release with alcohol block, right pec release with alcohol block and right elbow tendon transfer. His arm will be casted for one month and then he has to wear a splint for 2 months. Sounds like a lot but it will be worth it. We will be in Texas for 6 nights. It will be the very first time I leave Lily behind. I am sad about it but I know I can't handle her on my own while he has surgery.

What is SPML:

Selective Percutaneous Myofascial Lengthening, also known as PERCS for percutaneous, is a non-traditional, orthopedic tendon/muscle lengthening/release that is minimally invasive, with minimal scarring, for children and adults.

Selective refers to select areas of tightness caused by spasticity.
Percutaneous – an instrument developed for eye surgeries is used to make small (2-3 mm) incisions in the areas of tightness/spasticity aided by a nerve block using ethanol on the obturator nerve and to make small cuts to the fascia. Percutaneous refers to a procedure performed through skin using a needle etc.
Myofascial – myo means muscle and fascia is defined as connective tissue made of collagen that covers a muscle or a group of muscles.
Lengthening – surgically creating a relaxation or lengthening of a muscle.

Brendan was able to attend an abilities expo and tested out the Max Mobility this past weekend. I met with his PT and we are about ready to order it. Fingers crossed insurance covers it and we have it within 6 months!!

He has outgrown his walker at school so I sent in his new croc walker that we use at home so now he has a walker without any supports there as well. He is also walking more at school. He walks to classes, to lunch, to the bathroom and two laps around his floor per day. This will definitely help him. He has been tired lately especially for work outs and walking at home and this must be why. Dr. Park always says walk, walk, walk so I am so glad school is on board. They are also renovating the bathroom for him because the accessible stall is really not very accessible. His teacher is really amazing and gets things done!

Life is crazy as usual. It never stops especially raising a special needs child. I can't believe I have been doing this for almost 14 years! I have learned so much and we have been through almost everything but he is doing amazing this year. SDR not only helps their mobility but it transforms them. Brendan speaks more articulately, has improved sentence structure and is able to ask different questions. His brain is either thinking differently or he is able to ask what he is actually thinking. He is happier, calmer, he enjoys working out and is overall easier to raise right now. I am thrilled with my decision. It is a very long and exhausting road for everyone of us but it is worth it.

Friday, August 19, 2016

Checking it off!

I had a huge checklist to accomplish a few weeks ago and I am checking it all off pretty dang quickly!

We have been having such a fun and busy summer that I just realized I needed to get a lot done all before school started! I am killing it and feel so much less stressed out now!

His neurologist is STILL on sabbatical and I mean this has been going on for years now. I am annoyed now. Thankfully he doesn't need botox nor is he in dire need of seeing a neurologist. I went through 3 neurologists before staying with her for the last 8 years so I am not really interested in finding another.

So therefor I had to go onto plan B!

I really needed a new scripot for his SMO's (ankle braces) since they are constantly marking up his feet so I had to try and book an appointment with his orthopedic. I also needed a signature for the awesome wheelchair power adapter (Max Mobility) I want to order. However his ortho was booking months out. Somehow I totally lucked out and got an appointment for the very next day although it was with a totally random doctor! We got to get all his X Rays that I needed for Texas (for yet another surgery he needs) and we got a new SMO script PLUS the doctor signed the form so I can try and order the Max Mobility through his insurance. I was and still am so super excited to check all that off my list!

So we got the script but that is just half the battle. He needs to get casted for them. I was able to get booked for the very next week, SCORE! We just got the casts done this past Friday and we also threw in a dentist appointment that morning!!! He was fantastic and chose black for the color (thank goodness he didn't want kittens playing with yarn balls this time) which they do not make but this really cool new orthotic now works there and is going to try and see what she can do. I just do not understand why the patterns have not changed over the last 10 years. I am sick of space, batman and some blue design.

I hate making phone calls but I made myself call his mobolity company to find out how AND if I can order the Max Mobility and found out eveything I need to do. I have to wait for school to start because he needs his physical therapist involved but I now know what needs to be done and will get that ball rolling in a few weeks.

I am pretty sure he needs a bigger walker for school (but honestly I forget what size he has at school since it never comes home, they even transport it to Summer school) so I need to check into that once school begins and see if insurance will also cover one. I know they do not like to cover mutiple mobility pieces in one year so we may get denied. Max Mobility is around $6,000 vs Walker $1200 so guess which one I want insurance to cover?!
We have been buying walkers for the last few years so I am really hoping they will cover this one. The new crocodile costs over $1000!! We leave one at school because they were getting ruined being transported back and forth daily. I will say the new design on the crocodile is extremely cool looking and built to last! I love how it folds and locks now. Just this year he has moved up from the size 2 to the size 3! We have moved on from orange to black! I have always been a fan of the croc and still am. We tried the Nimbo but Brendan HATES it so it is just taking up space in his closet right now. The price difference is monumental so kind of bummed he doesn't like it AT ALL!

I am pretty sure I ever have a to do list completely checked off. I think daily things pop up!!!!

So now I just need to send out the packet to Dr. Yngve in Texas (which I filled out already) because he needs SPML (another tendon release) which is pretty common after SDR especially at his age and having a major growth spurt. I also want to see if they can release his right arm in hopes it will help him gain some more mobility and be able to use quad canes more efficiently. I need to call the hospital file room and get his x rays mailed to Dr. Yngve and then they call me to set up a phone interview. We will hopefully fly out for an evaulation and have the surgery the next day and then come home soon after.

I think that is everything I needed to accomplish. There is always something to do for this child! I don't even know what life will be like when he is an adult. I don't think I will ever stop helping him and researching and probably taking him to appointments or bringing him dinner. Life will be different but most likely less chaotic, especially with 5 kids to be involved with.

Summer FLEW by and I seriously need to do some school shopping for these kids. See..... my to do list is NEVER done!

Tommy Hilfiger Runway of Dreams

How awesome that Hilfiger came out with an adaptive clothing section. I just placed our first order and am so super excited to try these out. They use magnets to fasten the shirts and pants (so for those of you with pacemakers you may not be able to use them). Brendan is almost 14 so we are really focusing on independence at this point. He can not unboutton or unsnap his clothes so he should be pretty excited. We have dressed him for 13 years and I really hope he can start learning how especially with clothing designed more for his disability.

I will post updates and pictures and let you all no our opinions on the clothing. It is not cheap by any means but worth a try! They do have a promo code and free shipping so we got 3 pairs of jeans and 2 shirts for about $160.

Wednesday, August 10, 2016

I can understand

Brendan was sent this hand autographed little book about being a sibling to a brother with CP. It is simply written wtih adorable illustrations. It is a great book to introduce to a sibling or even a classroom gaining a new special friend. You can find it on Amazon!
Brendan's work out room!

We have accumulated lots of equipment over the years. Brendan and his step dad recently built the wooden ladder wall to replicate the one at therapy in Texas. We use this room many times every single week.