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:
10 comments:
I had such a big smile on my face reading this... because I can totally relate. Keep running Brendan, keep moving forward. As someone further on in her journey I can tell you- it's so worth it.
I have CP and have a YouTube channel. We talk about PCA, relationships, technology, advocacy, and we will cover a lot more topics. Please check it out. https://www.youtube.com/channel/UCZJuCecT735_74yCXhE5Q4g
Thanks
Chris Lenart
Wonderful, keep it up. We have come to known of many of such stories which fuels us to keep doing our work. which is spreading awareness on CP in India and in world.
hi can I email you???
I'm sooo deeply touched by your story!
Amazing and inspiring!
I'm a god-mother of a smart cute Russian 9year girl with CP who is facing SDR and asked me to do research about US resources.
Can you please navigate me there?
Inna
Of course Cristina Fleitas: stephviveiros@gmail.com
Inna,
You should join the facebook group: Selective Dorsal Rhizotomy - St. Louis Children's Hospital.
Dr TS Park is one of the best in the Country and people travel from all over the world for him to perform SDR. I personally wouldn't go to anyone else. You can even send a video evaluation to them so you only have to travel once for the surgery. You can find all the information on his website. The facebook group is amazing and helped me make my final decision.
Thank you, I filled the application form and got an answer no. Because the girl doesn't sit/walk independently. Later I received a video from this girl and it shows that she DOES make few tiny steps with walker. I forwarded the video to the hospital, and no answer. Do you think I should try and bother them more, or no means no?
Thank you again
Sometimes patients are told to gain more strength and apply again in 6 months. Brendan has a strong core but that wasn't always the case. He couldn't sit up as an infant. Dr. Park was impressed with his core. Did they explain why it was a no? I think they have to be able to do certain things for the whole process to be worth it. There is a ton of work involved afterwards and they need to be able to do certain things so they can gain muscle mass.
Sometimes patients are told to gain more strength and apply again in 6 months. Brendan has a strong core but that wasn't always the case. He couldn't sit up as an infant. Dr. Park was impressed with his core. Did they explain why it was a no? I think they have to be able to do certain things for the whole process to be worth it. There is a ton of work involved afterwards and they need to be able to do certain things so they can gain muscle mass.
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