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.


Saturday, April 4, 2015

SDR Success! BUSY BUSY BUSY

Wow life is INSANE right now. Brendan is already 6 weeks post SDR and Baby Lily is 3 months old!!!!

So Selective Dorsal Rhizotomy was a cake walk compared to hip osteotomy. Maybe because he was older and we have already been through so much, I am not sure but he was a trooper! He did have some reactions to the medications such as extreme itching. He also vomited a lot but that is typical for him. He stayed 5 nights in the hospital and then I stayed at a hotel with him for 2 additional weeks so he could receive intense physical therapy. My mom came to stay with us since I had the baby with me. It all went very smoothly and I am so proud of him these last 6 weeks.

We have settled into a routine at home but we don't stop! We have a huge booklet of stretches to do twice daily. We focus on getting them done once because between school and 4 other kids there is seriously no time to do them all twice! But, he does receive PT in school 3x a week and I have hired a personal trainer to come to the house 3x a week so he is working out plenty! I do 30 minutes of stretches before school and then another 30 or so minutes after school. He has an aide that comes to the house Mon-Thur at 4pm so he usually goes for a bike ride or walk and then I finish whatever needs to be done in the evening. All this hard work is paying off and he is progressing. He is getting stronger every day and is walking so much better. He was running today in his walker! I haven't seen that in years.

Dr. Park predicted that he would only ever walk in his walker even after SDR but just 8 days after surgery he commented on a video of him walking and changed his prediction that he may be able to walk using quad canes. Only with some serious hard work and determination I imagine but this kid is killing it! He has hardly given any attitude working out and completely all his stretches. This comes from a child who is obsessed with watching youtube videos. He lets me shut his computer and stretch him out! I am so impressed and this was my biggest fear. I did not think he would work this hard afterwards.

So our lives don't stop. I am always exhausted but in the end I wouldn't change any of it. I thrive on chaos and my children keep me young. Some days my body doesn't feel as young as I wish and my wrists are not fairing well with all the stretching but I will do anything for this child. I really hope one day this all pays off and he can become more independent.

POST SDR
Brendan has ZERO spasticity!
NO longer takes baclofen
No longer needs Botox
Can side sit
Can comfortably position himself on all fours and balance on 3 limbs with assistance
Can move around on the floor much quicker and smoother
Can be put into half kneel
Stretching him is actually loosening his tight muscles
No toe walking
Can bend knees while walking

His body is so different. All the doctors and therapists I asked were against SDR. They told me without tone he wouldn't be able to do anything. Well 5 days after SDR he was walking in his walker again and now 6 weeks later he is running. I don't think he needed that tone after all! I wish more doctors would get on board with this surgery and not scare us away from going ahead with it. I should have done this when he was 3 but listened to everyone else and decided not to.

Check out his daily process here:





Monday, February 9, 2015

Just 11 days left until SDR!

I seriously can't believe how fast time is flying. He is having selective dorsal rhizotomy in just 12 days. I never thought I would be ready for this surgery and here it is less than 2 weeks away. I got emotional for the first time over the weekend. Surgeries will never be easy no matter his age, no matter how many we have been through and no matter what the outcome is supposed to be. I think I am much stronger than I was 11 years ago when he had his first surgery. My friends used to always tell me how strong I was. I never saw it, I never understood what the meant. I didn't feel strong. I felt like I was falling apart and learning to live this new life with a disabled child. As I look back and see how far we have all come and how much we have all been through I realize I was strong, strong enough at least to keep it together and to make all those difficult decisions I had to make. I have always done everything I could for Brendan. I have been the one to make all the major decisions and researched different procedures and surgeries countless times and got us to where we are today. I have taken him to NJ for PERCS because I felt he was the best Dr. for that surgery. Now we are off to St. Louis because we all know Dr. Park is the best Dr. for this surgery. I will never stop trying to do what is best for him even if the decision is so difficult for me.

This surgery could be life changing and as a family we are in it together. This surgery is causing major upheaval in our family. We have 5 kids so that alone makes everything more difficult. We own our own business so again it is difficult to just close down and stop our lives but we agree it could be worth it. Brendan's father, Derek and I will all be there for his surgery. Derek has to leave the day after surgery to take care of the other kids who will be watched by my mom and my mother in law over the 5 days. His father is headed home the day after he gets discharged and I am staying for an additional two weeks with our recent addition, Lily, so Brendan can receive intense physical therapy. My mom is flying out to help out with the baby and we are all flying home on the dreaded Friday the 13th! I am not overly superstitious, obviously since I still booked the flight, but it doesn't sit all that well with me. I am definitely not thrilled with the idea but hey we gotta get home after a long 22 days.

Afterwards he needs therapy for 4-5 times per week for at least 6 months! Yup try fitting that into our schedule! We will figure it out and we all have to work together.

I am having a bit of mommy guilt leaving my other kids for 3 weeks. My toddler with with me 24/7. He comes to work with us every day so I am really sad about leaving him. He is such a character too. He always keeps us smiling and laughing. I will miss him so much. We will all be texting, video chatting and calling each other so somehow we will all get through it. In the long scheme of things it is only 3 weeks out of our lives. We can all get through it and I know that we will. After this surgery I know we will have done everything we could for Brendan to live his life to the fullest. This surgery could just make him more comfortable or become a miracle. We will find out over the next few years. Wish us luck!

I created a facebook page for Brendan that will be updated daily during our St. Louis trip.

www.facebook.com/BrendansSDRJourney2015