My son's tragedy occurred late April. He has been in three different hospitals before landing in a fantastic rehab program. He's been in JTR for 10 days now and although I do see small progress, we've had complications that could have been avoided, two pressure ulcers that went untreated even though I asked if they could be medicated to accelerate healing and ectopic ossification of an elbow joint. He was changed from continuous feeding to 4 feeds a day which was great, it allowed more mobility but he is not tolerating the formulas. Severe drop foot seemed to be getting better but the meds were elevating his liver enzymes so had to get off the meds which caused the spasticity to return. Two steps forward, one step back, sometimes feels like three steps back. I'm having a hard time staying positive. Of course when I'm with my son I motivate him, pump him up and give him pep talks, but I when I'm not there I feel deflated. I know this is a long recovery process...I just need to find a way to stay positive. Any advice? Anyone have stories of recovery to share that would help me see that through this struggle there is light at the end of this dark tunnel?
Hi Jessie,
You've come to the right place. As someone who can relate to your son, I can tell you that things do get better in time. I was told that i'd never be able to walk again and there's no hope for me. Doctors and physical therapists gave up on me but the truth is, There's hope for everyone. I've met people who've told me that they've seen people in their 50's make great progress so I have no doubt that your son will. I was 20 when my AVM ruptured. Because your son is still young, This makes his chances of healing even better. Please make sure he stays motivated and is surrounded with lots of love. Be on top of the PT exercises, socialize and interact alot, eat healthy, and never lose hope. It's already been 3 years since my rupture and im still seeing progress with myself. I decided to try acupuncture after hearing great things about how it helps with weakness and paralysis. When I first reached out to the acupuncturist, She told me that since it's already been 3 years, she doesn't think it'll help but its still worth a try since im young. Today was my 8'th session and she's completely amazed at how much progress ive made after 8 sessions. It's almost miraculous. In fact, she told me a young girl who's also 19 who had a stroke comes to see her from the treatment. She comes all the way from the bay area to see her. Don't lose hope and stay strong for your son!
Best wishes and take care :)
-Monica
Dear Jessie,
I am so sorry to hear about your son. Since I live in the bay area I feel connected to you in that our stories sound very similar. My daughter was 19 when her AVM ruptured and she was in a coma for 2 months and came out in a vegetative state. My daughter is 22 now and I can tell you she has made remarkable improvements. She continues to improve all the time. My daughter was originally at Stanford, Kentfield, Valley, CNS and lived in a facility for a year while we followed her from here to Marin to home to Bakersfield. So, I know how hard it is to be the cheerleader. I remember in the early days I had this prayer book that I got from a small church my husband and I went to. I remember reading the same little book over and over. There were a lot of set backs but she continued to move forward in her progress as she is today. My daughter has a lot of issues she is still working on and no one can predict what your sons outcome will be. Other than prayer my husband and I attended all of her therapy sessions and learned how to help her. I also think having a family member interested in the therapy helps the therapist focus too. I took a leave of absence from my work and my husband was retired so we had the time. We would practice some of the activities in the off time and tried to mentally stimulate her as well. On top of that it is easier to stay in the moment than to dwell in the past or the unknown future. Look for the positive in the day. Some days no doubt will be too emotional to do that but you will get there. Although I find I still have a sad day here and there. Anyway, I hope some of that helps. I live in Los Altos and my daughter comes to Valley a few days a week for therapy. I'd be happy to meet you or have you meet us. Best wishes to you and God bless you all.
Wow now this is a great discussion! The best analogy I ever heard was the one about holding a cup of water. For a moment, it is easy. But as days turn to weeks and years it becomes unbearable. Even small things can wear on you and become a burden over time. Now imagine that same glass of water given to someone who is trapped in a dessert. The weight of the glass never changed. Only your perception of it.
There were many days I wanted to give up. That I had enough. Those days still come around. Doing your best is a moving target. Not everyday is going to be your best day ever. Sometimes doing your best is trying. Not giving up.
We love you Jessic. Sometimes the light at the tunnel is the struggle. As long as your struggling, it means you haven’t given up. It hasn’t beat you. It won’t ever beat you.
I have a cousin, Mark. Mark was paralyzed from the neck down as a teenager. Mark is in his 30s. Mark hasn’t regained the use of his body yet. He did get a law degree. He did find love and get married. This year, he did welcome his first son.
Hello! Thank you for replying and sharing with me about your experience. I am at valley all day Monday and Tuesday and Wednesday morning. I would really like to me you. Let me know if any of these days work for your schedule. I’m also here on the weekends but your daughter likely doesn’t have appointments. Talk to you soon! Jessie
Hi Monica. Thank you for taking the time to give me words of encouragement and hope. Yesterday my son laughed for the first time. It was amazing and I loved every minute of it. I am happy that you continue to make progress. I wish you complete recovery. Best to you. Jessie
Hi Jessie,
I can come on the weekend/Saturday with Lizzie or by myself on Tuesday morning. Lizzie is at therapy right now with her dad so darn we could have meet this morning. Lizzie will be at Valley again on Wednesday but not till 2:30.
What would you prefer?
My phone number is 650-■■■■■■■■. It's my cell so if you want you can text me. Also, my name is Sara Somers. Some of the people on the 2nd floor know us so feel free to mention our names!
Sara
Jessie,
That's great news! Feel free to come to the support groups at UCSF if ever you feel that you'd like to meet with other survivors . It would be nice :)
It sounds like your son is slowly recovering and Monica what wonderful words of encouragement. Since a few of you are in Northern Califiornia, and Monica started the Northern Calif group), perhaps you would all like to join if you are not already members. Below is the link for you to join. Best of luck with your son Jessie and I hope you both keep reaching out for hope and progress.
http://www.avmsurvivors.org/group/northern-california-survivors
Thank you Debra! I will be starting to post more updates with the group :)
Hey monica- anyone you see in a thread on here, feel free to let them know about the group with a link to make it easier for them :) Where are you in Northern CAlif?
Hi Monica- hope you are doing well. Can you tell me when the meetings at UCSF are held? My son is home now, improving, but I sure could use some insight and motivation from survivors 