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.

MAX Mobility - SmartDrive MX1+ Overview

Time is flying by! So much to Say!

Wow Texas was over a month ago! Where does the time go?! We have been having a great summer. We have been very busy and just having fun with the kids. We have gone camping, spent a lot of time outside walking, swimming and on our bikes, and we are off to Story Land this weekend. Oddly this Summer Brendan has gone in an ocean, lake and pond. He usually hates swimming in them but has been open to it this year and has had a great time. He usually sits in the shade on the beach so it was so great to have him join us. He was smiling the whole time. Maybe having more control of his body makes him feel safer in the water. We have another surgery upon us and he will be back to Texas for more therapy in December ( I think).

Texas went okay I guess. Lily was a great traveler and perfect when I really needed her to be but other than that she was a bit of a nightmare. She made it very difficult and mentally exhausted me. Brendan was awesome the entire time and had a great time with his new friend Jack, whom was also there for therapy. Two weeks was a bit long for me to be away from my family and I cried a few times. Brendan got a random fever in the middle of the night before we were flying home and I lost it because I thought we weren't able to go home but we made it!! I have no idea what the fever was all about but both of us were up at 3am and so ready to go home! He ended up throwing up on the plane but pretty sure he just saw Lily's banana (he can have a strange stomach) and fortunately we someohow mananged to get almost all of it into the lovely plane puke bag even with Lily on my lap. Serious props to us hahaha. I think we totally grossed out the family next to us and they wouldn't even talk to Brendan the whole flight. At least we had the best neighbor in our row and she actually praised me on how well my children behaved throughout the flight. Therapy was okay. I wasn't allowed to attend the 2nd week because the trainer thought Lily was causing Brendan to act up and not try as hard. I guess he improved without me there but I hated not seeing the sessions. I went home blind. Two amazing moms that I have grown to know helped watch Lily in the hotel room so I could attend the last day to record the new routine.

Unfortunately Brendan is very tight. I don't think it is spasticity because I can straighten his leg still and he still feels floppy vs spastic. He has grown 3" recently and is not stopping so I am almost positive he needs SPML which is totally normal after SDR. I am actually bringing to Dr. Yngve in Texas (yup another trip to schedule) beacuse he, like Dr. Nuzzo, performs it less invasively. I am also going to see if they can do anything to help his right arm because it is hindering his walker especially in cruches. I am super excited about SMPL because he had great results years ago before SDR and I have seen so many children excel afterwards. Mike Poole (trainer) also believes he will have much more stanima afterwards which is what I really want!

Sorry I am being totally boring in this blog. Let me try and turn it around. Brendan is still impressing me. He is riding his accessible bike with ZeRO assistance. He can stop and start on a hill, it is honestly amazing! He loves riding his bike and last night I rode my bike with him. While he is slow (I can't blame him because his bike doesn't have any gears and it doesn't coast even going down a hill so he has to pedal the entire time) it was so cool riding along with him. He can steer, move aside for cars and go up and down hills all on his own.
He has been so happy lately. He is so comfortable and he really loves working out. He may fight you at first but then he really gets into it. He gets bored on break day so we usually still walk or go for a bike ride or something. He used to want to do NOTHING on break day. He is getting much stronger overall. His upper body is kind of buff!

I am still so boring today. Sorry! Life has been so busy from the moment we wake up to the moment we go to bed that this is literally the first time I have sat on the couch and relax at 8pm. I really need a break!

What is Next:

We are ordering a Max Mobility for Brendan's manual chair. I am trying to get insurance to cover it and will let you all know if that works out. It costs about $6,000 but it is really cool and less expensive than a power chair.

He will have new SMO's made.

He will head to Texas and most likely have SPML and possibly a right arm release.

He will have two more weeks of therapy in Texas.

He will begin 8th grade!