Brendan's fight for a better life
After 8 long years I have finally decided I can handle Selective Dorsal Rhizotomy for my son, Brendan. After a ton of research, pouring over success stories and trying to find people who regretted it who no luck I am ready. I have to be emotionally ready in order for him to gain the most out of this incredibly difficult surgery. I have to be ready to commit to 6 months of intense therapy. I have to want this for him in order to get through it. I had to realize my son needs this in order to live a better life. I also realized that I wanted him to be able to make the decision along with me and he is ready too. His father has wanted this since Brendan was 3 years old so we are all finally on the same page. It is time.
What is Selective Dorsal Rhizotomy (SDR):
Basically during SDR, a surgeon cuts the skin over the lower part of the spinal cord. The surgeon then finds and cuts the nerves in the cord that are causing muscle tightness in the legs. If you want to know more detail click on the link:
Brendan was born prematurely at 33 weeks gestation. My preterm labor was not taken seriously and the Dr. never tried to stop my labor. I was sent home and suffered a partial placental abruption which was not detected. Brendan lost oxygen at some point during delivery. He was born blue and had to be resuscitated. He had weight on his side and was a wopping 5 pounds 5 ounces. He actually did very well in the NICU and came home just 11 days later. Over the first few months of his life it became apparent that he wasn't like a typical baby. After many months, doctor's appointments and the dreaded MRI we found out that Brendan's loss of oxgyen caused periventricular leukomalacia which is when white matter in the brain is damaged. He has moderate brain damage and this led to him having spastic quadriplegia cerebral palsy. He is moderately effected but is very fortunate becuase he can speak to us, use a walker, and is hardly ever hospitalized due to illness. He has come a very very long way in his 11 years of life. He couldn't use a walker until he was 3 years old, he couldn't speak until he was 4 years old and is still progressing in this area, and he couldn't see very well until he was over 7 years old due to having cortical visual impairment caused by his brain injury.
Brendan is currently in the 5th grade and globally delayed. He has severe ADHD also due to his brain injury and struggles with learning. His visual impairment has made it very difficult to read and his lack of fine motor skills restrict his ability to write.
We have all adjusted and accepted this life but we want to make him more comfortable. We do not want him to become completely dependant to his wheelchair which is expected as he ages. He is starting to regress and no longer enjoys walking. He has no stamina and doing anything out of his wheelchair requires a lot of energy. He has been through a total of 7 surgeries already and will have many more especially if he doesn't have SDR. He will no longer need to take daily muscle relaxers nor receive biyearly botox injections in his legs and right arm. He will be more comfortable and hopefully no longer require orthopedic surgeries after his left hip surgery is completed.
Why are we asking for donations?:
Brendan does have some money set aside for medical needs however it will not cover everything necessary for this surgery.
We need to travel from RI to St. Louis, Missouri because Dr. Park is the only Dr. I trust for this specific surgery.
Flights to St. Louis cost approximately $912 per person. I need my husband by my side for emotional support and Brendan needs him too! Brendan's father is also flying out for the 5 days he is in the hosptial.
I am staying for an additional 2 weeks in St. Louis with our newest addition, Lily, so that Brendan can receive intense physical therapy. Therefore, I would love for my mom to fly out and stay with me to help me get through a difficult 2 weeks.
Unexpected Costs/Loss of Income:
I am sure costs will pop up living out of a hotel for 3 weeks in an unkown area.
We own our own business and will have to close down off and on for a good week while my husband is in St. Louis with us. If we aren't open we don't make money. We will lose between $1000-$3000 duirng one week.
If you would like to help us reach our goal and be a part of this amazing journey we would greatly appreciate it.
Every little bit helps!
Brendan continues to progress. He is getting stronger. His legs look entirely different in a very good way! I have never seen them look so 'real' which is hard for most to understand but he really didn't use them before. He used his arms to support himself and walk therefor had zero muscle mass. I love how they look, healthy and fit.
He still works out 3 x a week with a personal trainer and we also work with him every single day. My husband stretches him every morning and I work with him in the afternoon.
He still HATES his new walker but I think a little less since I made his front wheels swivel. He has a harder time controlling it but is happier so he wins. I think doing SDR at this age is hard. Being a pre-teen he has some major attitude going on and is very stubborn. He rather be on his IPad or computer than walking. It is a battle but in the end it was totally worth it and I really hope 10 years from now he appreciates all of this work. I hope his life is overall better and that he can be more independent. It may take the next 10 years to really look back and think... WOW! his life would have turned out so differently if we hadn't gone through with SDR. I have a strong feeling that will be the case.
WHAT IS TO COME:
We are heading to Texas next June for two weeks of intense physical therapy. My plan is to work his butt off until then to gain maximum results. There is this guy, Mike Poole, that just set up a center in the USA and works specifically with kids after SDR. He knows how to push them just enough and achieve amazing goals. I am really hoping he can get through to Brendan because he can totally build up a wall. Today he battled with his personal trainer and wasted most of his session NOT walking.
GOALS IN MY HEAD:
I hope he can stand on his own even for a few seconds. I hope he can walk fluently in his blue walker and use it for all outings. I hope he can use the bathroom completely on his own. (okay that one may be out of reach) These are some of my goals in my head. Guess we will find out in 10 months what we can achieve!
I am very proud of him and all the work he has put in because I am sure being a 12 year old kid he really does not want to be working out at 6:30 AM in the Summer. He is progressing and he is gaining muscle and he is doing things he couldn't before SDR. So honestly how can I complain?!
Thank you again for every single donation. In total we raised $5402~ amazing. It really made the surgery much less stressful and we appreciate all the love and support beyond words. This journey is far from over but we are in it for the long haul!
His school is starting to use his wheelchair less. He is walking to gym and to lunch and leaving that wheelchair behind! He is now sitting with his peers on the bleachers in gym and at the lunch table. I was told he is pretty happy about this. He appears to be much more comfortable in general whether he is sitting or standing or just getting around on the floor. He is also getting more and more flexible by the week. I see a huge difference from even 2 weeks after surgery. He can pedal his bike up hill all on his own which he could never do prior to surgery. So many daily amazing things going on here!
We would love to reach our goal which will continue to help pay for expenses related to his SDR surgery.
We really appreciate everyone's donation and all of our family who helped us during our 3 week stay in St. Louis. It would not have gone smoothly otherwise!
Sometimes I don't feel like I see that much progress and then I see a video I take compared to two weeks after surgery and I see a huge difference. He really struggled on the treadmill on an extreme slow setting in therapy while tonight handled a decent speed without even complaining.
He hates the knee immobilizers, always has, but he still wore it for me for over 30 minutes with hardly any complaints so he got a good stretch tonight.
I am still extremely impressed with his attitude and willingness to do all of this daily. My biggest fear when debating this surgery was that he wouldn't put in the work but honestly I am beginning to be a bit less concerned. He is rocking it.