So on June 6th we celebrated te one year mark of Chason AVM Aneurysm that almost took his life… It did leave him with lots of deficits but none worst than not being alive and breathing on his own Thank God:) He is now walking with a walker and just the other day (he was very excited about this one!!!) was able to jump on his own!!! While no longer in PT, OT or speech therapies due to financial difficulties… We are still working with him at home and by no means giving up on more progress… I know six months after the AVM aneurysm happened is the time they said is most crucial in recovering ones abilities but I know a higher power who does not stop working just because a statistic says otherwise!!! I understand that 100% may not be possible but I serve a God who works with the impossible and so I say to all you AVMs Survivors … Never give up Hope! Never give up Faith!! I don’t know why He allows things as such to happen but I know one thing is clear… His purpose for each and every single one of you is greater than anything we can imagine!!! Live out your purpose!!! Praying for each and everyone one of you as much as I pray for Chason full recovery!!! Blessings to all:) Chason soon will be walking on his own without a walker because All Things In His Timing not ours… Praying for you<3
That's great Jana! Have you read "My stroke of insight" by Jill Taylor? She continued to recover for 8 years. Also,some states offer free rehab to those who qualify. I will be happy to help research this for you.
I will have to read that!!! Thank you!!! And I am trying to get him in therapy through the school system but so far we are just getting the run around and nothing accomplished! He was getting it through our insurance but the therapists have “graduated him” as I was explained due to lack of funds… Our insurance maxed out so they stopped his therapy at te facility by graduating him out of the system… Truly sad how some discards patients in need of help… I have been working with him on my own but not being a professional it isn’t easy plus being MOM doesn’t help to keep him pushing past the …“oh mom I’m done” frustrated 13yr old point… If you could point me in the right direction that will surely be a blessing!!! Thank you again!!!
I had my bleed the day after my 28th Birthday. I was having problems with passing out before the bleed, so I had to reduce my job down to part time work. I was and am without insurance. I am finding that most systems are built for people to fall through the cracks. I am also finding that there is help out there. I was born and raised in FL. I will try to do what I can to find help for you! One thing that helped me was my mom reaching out to churches. she raised enough money for 3 days a week of therepy for one month. she also talked to the tereapist and was able to get half off of my therapy sessions. Another thing that helped me, is spreading out my therapy sessions. Let them give "homework"! Most therapy uses redundancy, so if they teach you what to do you can do that as "homework" untill the next vist.
My doctor told me to "live life!" That was some of the best advice I recieved. Doing normaly things became my therapy. Jill Taylor mentions in her book using nintendo's big brain academy. I think the biggest thing is making the threapy something he will enjoy.I hope this helps! I will get back to you in a week and let you know what I find.
Super Hurrah! Chason is such an inspiration to sooo many people!
He is desperate for some normalcy specially since most of his friends have kind of stopped talking to him or being around… But he is motivated to get back to dancing and that has kept him working hard:) Thanks for your help!!! God bless you
Thank you Barbara:)
This is the childrens state ran brain and spinal cord injury program:
The services provided may include:
◦Printed materials that explain the traumatic brain or spinal cord injury
◦On-going nurse care coordination from the BSCIP, for up to two years, to help with needed medical services or therapy, assistive technology, home modifications, or other referrals
◦Community resources to help each child or teen and family with additional or long-term needs
I am Trying to look into other things for you. Did he reach the lifetime cap, or the annual?
Annual … We have a 20% co-payment that’s due at each session and when we were unable to keep up with the payments that’s when we got the graduated notice
Yes, each accomplishment and each day of Chason's life are indeed things to celebrate. And the Lord never stops working.
As a survivor of the AVM/aneurysm combo, I completely agree with your focus on prayer and gratitude. I have had a remarkable recovery, and none of it is possible without first surviving the aneurysm, many do not. I wanted to post to let you know that the vast majority of my progress has been home-based, you can do so much with a balance ball and some creativity. I found it helpful to go to a physical therapist or rehab doctor once in a while just to get advice on areas to focus on. Even just getting a tai chi DVD and learning it is really helpful. I have good resources, but I've gotten so much out of tai chi and yoga, and a balance ball.
Thank you! We will have to try that!!! And that’s something we can all do as a family so even better:) My two girls love helping Chason with his exercises so that will be fun!!!
Hi Jana, I was wondering how you are doing with therapy support in the school system. I know school system run around, lol, I was hoping they got their act together by now. If not, maybe I can help in some way. Let me know and I'm sending happy vibes (and prayers) to Chason. ~Elizabeth