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

SPML.....AGAIN!!!

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.

http://usa.tommy.com/shop/en/thb2cus/search/kids-runway-of-dreams-adaptive-clothing

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!


https://www.amazon.com/Understand-childrens-about-special-needs/dp/0692542396/ref=sr_1_1?ie=UTF8&qid=1470877872&sr=8-1&keywords=i+can+understand
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!

Friday, June 24, 2016

Off to Texas!

We are leaving for Texas for two weeks of intense therapy this Sunday. I am nervous and excited all at the same time. I am flying on my own with Brendan and Lily. My mom came with us last time and helped but this time I am on my own! Brendan is a great traveler and he will be fine but Lily is just 1 1/2 years old and I have no idea how she will handle a 4 hour plane ride. Not to mention I will have a wheelchair and stroller to get through the airport with. I shipped out his luggage so I wouldn't have to worry about that!

It will be one long day but worth it! I am so excited to see what he will gain after two weeks of this therapy. Mike Poole is amazing and gets results that no one else can. He has a unique gift that allows him to work with any personality and get them to work through their fears and achieve success. He breaks down their insecurities and once they realize they can do the task they gain confidence and self pride. It is amazing. You leave being able to work with your child at home better than ever before. Brendan actually enjoys working out with me. I have seen his legs grow muscle mass in the last 6 months more than in his entire life. He can walk on the treadmill on his own. He can pedal his accessible bike for almost 1 mile completely on his own. He can pedal up hills. He can get in and out of the driveway on his own. He can walk 500 feet in his walker without stopping. He has gained so much in the last 6 months. It is unbelieveable.

Life hasn't slowed down in the least bit! Having 5 kids in this day and age is not easy. I am non stop all day long. I hardly have a moment to myself. I hardly have a minute of silence unless I am sleeping. I often feel guilty not working with him more but I can only do so much. It helps that he is progressing and gaining strength. We have to do what fits into our lives and be at peace with that. Maybe it was selfish having so many children but I see how amazing our family bond is and how his siblings have shaped him into the person he is.

I will try and update in Texas but you can check his facebook page which is much easier to update daily. www.facebook.com/brendansSDRjourney2015

I can't even focus writing at this moment because Brendan hasn't stopped talking to me!


Saturday, February 20, 2016

One Year SDR Anniversary!

Wow! I seriously can not believe it has been one full year since we took the plunge and went ahead with SDR. One of the hardest decisions of my life. Regrets? None! Hard work? More than you could ever imagine.

We have given it our all. I am actually proud of this entire family. We have all made sacrifices over the last year in order for Brendan to achieve all that he has. Three of the kids have lost their mom and baby sister for 4 weeks over the last year, went on a road trip to St. Louis for their summer vacation for Brendan's post op appointment, and have helped entertain the younger ones while we have worked countless hours stretching, strength training and assisting Brendan.

Brendan has come a long way and continues to work hard. He actually surprised me with his attitude and willingness to stick with the program. It hasn't been easy, there has been tears, yelling, attitude but also laughter, pride and progression. He is 13 and doesn't always want to get off his computer to work out but he does almost every single day. He loves his break days but secretly also loves working out, gaining strength and trusting his body to do more things.

I am looking forward to the next year. He has a strong foundation and core strength and an amazing home work out plan. I can't wait to see what two weeks in Texas working with Mike Poole will do for him. It should propel him into the next phase of his progression. He will achieve more confidence which does wonders for him.

I am beyond proud of this child and love seeing what he is capable of. We will continue to work hard and to sacrifice so that he can achieve the utmost possible before he enters adult hood. Hard to believe in less than 10 years he will probably be on his own. Well.....in my mind he lives a few houses down in a group home that we organize and help run. Only time will tell but I can't image the worry I will have once he leaves the nest. 


*****Look how far he has come since age 2: fisted hands and curled toes. Lots of therapy, procedures, surgeries and determination have paid off. You may not always realize how much everything really does for your child. If we did nothing I don't know what he would look like today. I presume his body would look entirely different*****

Friday, February 12, 2016

Fundraising

Okay I need some ideas! I am taking Brendan to Texas for two weeks for more intensive therapy. I am taking along my 18 month old since I think she is too young to stay behind for that long. Brendan does have money set aside but it won't cover everything. It will get expensive just feeding us for two weeks. Fortunately, I found a nice hotel with a great medical rate which offers free breakfast and even some free dinners! That will save a ton. The hotel also has a kitchen and there is a Walmart near by which will also make a huge difference.

I am looking for some ideas to raise some money. I didn't want to ask again under his go fund me since I asked for his surgery last year. I was beyond amazed at the generous amount given to us.

I am so excited for this trip. He gained so much from just one week in November. He has gained so much strength over the last three months with his new work out plan. I know 4 other families going at the same time which is so cool!

I still can't believe it has almost been one year since his surgery. Today, last year, his school had a going away party wishing him luck. That was one quick year even though it has been extremely busy,  well maybe that is why it was so fast !


Thursday, February 4, 2016

The Dream

I had 'the dream' again. A particular milestone has been creeping into my subconscious more and more since Brendan had SDR. I used to have the dream once in a blue moon, maybe a few times since he was born! But lately it has been much more constant. The dream is never the same like some nightmares can be. This dream pulls at my heart because I honestly don't think it will ever become a reality.

I dream that Brendan can walk. Completely unaided. No walker, no help from his mom and step dad holding him up. He just walks.

His walking doesn't exactly look 'normal' even in my dreams. I have no idea what he would even look like walking on his own. He really struggles with his right leg and I fear it will never be able to gain the strength it needs. Last night I vividly remember every second of the dream. He was sitting on the recliner in our living room and he just stood up and took these fast tiny steps, more of a shuffle, across the room. It was really fast like if he didn't move that fast he would fall down and he had this huge smile on his face. He walked, shuffled, right into my arms. I was kneeling on the floor across the room next to our couch and I started crying, sobbing uncontrollably. I was so proud of him and I just didn't expect it. I don't know if I will ever feel the emotions I felt in my dream but I can live with that.

This dream is bittersweet. I do not know if he will ever walk on his own even after every surgery, every therapy, every hour of effort he has put in over the last 13 years. While sitting here typing I don't know what to feel. I know he doesn't need to walk unaided. I don't live life wishing he would walk or hate that he is in a wheelchair or needs to use a walker. I have come to terms with his disability and am at complete acceptance. I am at peace with it all. I have come to realize I am a bit of a perfectionist. I tend to be an over achiever which isn't always a bad thing. Not to mention I am his mother so I can't just sit back and not help him achieve the highest level of mobility that he can. I feel as his mother it is my job to do everything in my power to make his life easier while I can. I know when he is an adult he won't have to work out and can sit in a wheelchair all day and there is nothing I can do. BUT if I motivate him enough and get him to 'want' it (to walk) then maybe just maybe it will happen and he will have a much easier life. I think since he has hit his teens I am starting to fear adulthood. It pains me to think about him living without me. Someone else taking care of him or someone not being there when he needs something. This fear has been with me for sometime but is definitely intensifying the older he becomes.

Life raising a disabled child is NEVER easy and a part of my heart will always be effected until the day I die. I love him with all my heart and I am so proud of how far he has come and apparently I secretly hope that one day I can share a video of independent steps for everyone to see and not just for my eyes in my dreams.

Saturday, January 23, 2016

Looking sharp!

Brendan had his school dance this weekend. He picked out his outfit. He loves button up shirts. We found these at old navy and they come with a tie.

Sometimes pictures say 1000 words. Brendan has been working on standing and balancing for 2 months now. Last night I remembered a picture of him taken a few years ago after PERCS helped him progress. We could hold him up just using one hand. He was all stiff and concentrating so much that he couldn't even smile. Derek had is foot in front of his to stabilize him for a quick picture. His right hand is in a fist and very stiff. 



Now look at him 11 months post SDR! standing all on his own. yes he is leaning on the wall but we aren't even next to him. Derek was right in front of him because he was very excited and could lose balance at any second but still!!
Just look at that smile! Look at his right hand, look at his legs! They are still crunched but together. His right leg is trying to work as hard as his left. He is so extremely happy to be able to do this. I could look at this picture 100 times. While he is still far from perfect his stance speaks volumes of how SDR can truly help kids battling Cerebral Palsy.

Tuesday, January 12, 2016

Standing

Brendan spent a week in Texas in the beginning of November. He met Mike Poole at walk this way USA and it was amazing. This man has a gift. He can somehow work with each child and get in tune with them like no other. He instantly knew Brendan and how his brain worked. He knew exactly what he needed and how to get him to work. Going to Texas for therapy is expensive and takes a toll on our whole family and our biggest fear was that Brendan wouldn't put in the work. He often shuts down or doesn't try but Mike got him to do everything he asked of him. It was actually an amazing site. I feel so lucky to have met this man and spend a week with him. In just 5 session he gave Brendan a new found confidence. He was able to show him what his body could actually do. It wasn't easy. There was lots of yelling, threatening and tears but this kid can't wait to go back!

Brendan has never been able to stand for even a millisecond. Mike got at least one second out of him on the first try. I realize how this sounds. One second wow. But seriously when you have never seen your child stand it takes your breath away. We continue his program at home and he stood for 3 seconds last night. He is figuring out his balance and working hard to gain the strength to stand on his own two feet. He looks different lately and I can only hope that these seconds can turn into minutes. To be able to stand with out assistance even for short periods of time is life changing. So we will keep working him and we head back to Texas in June for 2 weeks! I can't even wait!!

Wednesday, January 6, 2016

He continues to amaze me! SDR Changes Lives

I keep saying progress is slow and it is but that is okay. He isn't 3 years old and full of enthusiasm. He is 13 and has gotten used to be disabled and sitting in a wheelchair and having people do everything for him. Progress is slow because of his age but I see a ton of potential in him. I have seen 3 year old children walking independently by now and we are only getting him to stand on his own for a whopping 2 seconds. I went into this entire process being okay with this. Slow and steady wins the race and I am in this for the long haul! Sometimes I have to remind myself that he has had 13 years to develop bad habits, develop fears, learn to NOT trust his body.


I still get super excited with every tiny milestone. He loves making me happy and I can tell that he is so proud of himself. He actually loves to be pushed and see his own body transform. We constantly tell him how proud we are and keep him motivated. We try to reward him with mom time which really helps him focus. He honestly can do anything he puts his mind to and he always amazes me.


This morning he was doing his lego routine and he yelled across the house that he had finished. My husband said okay now go get into your chair. He has never gotten into his wheelchair from the floor without us right by his side. I couldn't even watch because it is so nerve wracking to watch. He does it well but once he stands up he has to turn his body in a fast motion and if he misses his chair he will fall and fall hard. He has only fallen once or twice over the last 10 months so he has a great track record. This was all about confidence, he needs this so badly! So he crawled off of his peanut ball and across the room to his wheelchair, climbed in, buckled himself and wheeled himself into the dining room where we were having coffee. I am not sure I can explain what we felt inside. This may have been my proudest moment! For the first time ever we did not go and help our child. He went from the FLOOR in one room and met us in his wheelchair.

So even though progress is slow he never stops progressing. I often look back at videos to see how far he has come and how well he looks. I forget that I just took his walker supports off 2 months ago and was afraid to let him walk without me by his side and then last week had him out in the grocery store with me walking around without me even close to him. It is so easy to forget how far they come and how strong they have gotten in just a few months. I have no idea what life will be like in 5 years but I know a few of his goals:


To walk onto the school bus (instead of in his wheelchair on the ramp)
To stay up later than us and put himself to bed
To drive

So lets see if we can reach any of those goals by the time he is 18.


Monday, January 4, 2016

10 Months after SDR!

Holy moly where has time gone?! Oh I know, stretching, exercising, walking, last minute trip to Texas for intense therapy oh and raising 4 other kids! I miss my blog and hate that I don't have time to write. My youngest just turned ONE! I am still not even sure how that happened. My beautiful baby girl is already one and I have a 13 year old! Sheer craziness in this house.




Anyway as I said we are 10 months post SDR. Brendan is older so his progression is slow and he needs a hamstring release soon but he is working hard and learning what he is capable of.

Over the last 8 months we have still been working very hard. He went to Texas in the beginning of November to work with the infamous Mike Poole at Walk this Way USA. We really needed this. We all needed a reboot and to change it up. Brendan was starting to walk horribly and was losing motivation. Mike Poole gave him confidence, a new work out plan and was able to show Brendan and I just what he was capable of. It was a great week! We are going back in June for two weeks and we are hoping he will take some steps in canes. This is huge. Canes would be life changing even for short distances. He also has had a new personal trainer for around 5 months and I love her. She is great with him and MOST days gets him to work. We all have our days. He works out up to 6x a week so life hasn't let up one bit.

What life is like after SDR
Brendan works out 3 days in a row and then has 1 day off and then 3 days in a row again

Before School Brendan spends 30 minutes in the morning doing 1 of 4 things:
* Stands in his stander (while in his stander he brushes teeth and eats breakfast)
* Lays on peanut ball and reaches to put legos into container
* sits with back against wall and knee immobilizers on (he can eat breakfast or go on laptop)
* old stretch routine

After school:
Works out with trainer 3x a week
Walks in walker
Works out with mom if the trainer is not scheduled'
Leg presses on Total Gym
Standing and balancing for 10 minutes with and without canes
occasionally comes to grocery store but has to Walk in his walker

On the weekends
Walks in walker off and on throughout day
Mom helps him complete work out plan
Leg Presses
Floor time for 1-2 1/2 hours to get out of his chair and use his body differently


As you can see he is a busy boy! Most days he is fine with everything but sometimes he protests but honestly I can't blame him. I don't know anyone who has kept up with working out for 10 months straight after a major surgery. He hasn't even been sick so he really hasn't taken time off. We have given him very few breaks. I think at this point his body wants it. His brain wants it. He was getting bored over vacation break, I don't think we worked him enough. One day I didn't feel like doing his work out plan but asked if he wanted to and he replied, fine so guess what?! We did it. I wasn't expecting that answer but had to take advantage.


Where is he at?

I got rid of all SUPPORTS on his croc walker while we were in Texas!
He has stood in canes for up to 5 minutes!
We can take his walker with us while out and about and leave the wheelchair at home or in the van
He can walk up steps (with major assistance) with so much more ease
He can leg press easily (we blasted out 60 reps the other night---piece of cake)
He can self transfer from walker to bathroom bars and pull down his pants with left hand to use the bathroom (super proud of this one)
He can pedal his handicap accessible bike for about 1 mile with ZERO assistance. He can also get himself into the driveway which has a large hump to pedal over
He can get himself into this wheelchair from the floor in 1-3 minutes (depending on his mood)
He can hold half kneel position on his own
He can wheel himself down our handicap ramp and up the driveway to wait for his bus ALL ON HIS OWN! He LOVES doing this!
I can help him walk a short distance only supporting him on the right side and walking with him
He is off all medication INCLUDING RITALIN!
His right hand is hardly ever fisted anymore. He looks more relaxed and content in pictures especially while on the floor. I notice an overall difference in his entire posture from fingers to toes.


As you can see he is doing a lot of amazing things. Progress won't stop. He is gaining muscles I have never seen on him. Overall he feels so much stronger and sturdy. It is hard to explain but he can hold his own now. I try to give him as little support as possible so he does the work and keeps building strength. He has more confidence and tries to do more on his own.