Great article, thank you Julie. I am positive in the future and the abilities he has and will gain.
I love the young man that he is, the young man that he was and the grown man that I have yet to know.
Afterall aren't we all constantly recreating ourselves? I know I am.
Hope you are blessed.
Thanks Sharon, that is great advice. I try to keep it fun. I have incorporated therapy as his daily activities. I hopes that even with him performing activities of daily living he is also pushing himself. I challenge him with opportunities and say for example while he is brushing his teeth "OK, you were able to hold your balance for 20 seconds..let's try 30 seconds next week.And you know what if you can't I am here and you have your walker for support." I get his sister to play games with us (she is 11). We used to always have board game nights but now our collection has increased significantly. I have bought a lot of different ones and try to find those that will help him while he is having fun.
I think what you suggested about video taping is an excellent idea. Even if he is not receptive now I am sure it will be a key motivator in the future to show him how his hard work paid off and simply how far he has come.
You are right; this is an amazing journey. And I have an unbelievably amazing blessing in which to embark upon this journey with. What a great roadie...I wouldn't have it any other way. He thanks me a lot for walking with him, I tell him all the time "Your welcome son, that's what I am here for. But I hope you know your gonna have to walk with me later in life...deal?" Of course he always says "Deal!" I love that kid with everything in me.
I hope you continue to progress, stay motivated, and stay an inspiration...just like you have done for me.
Steven I agree completely with you. I can say that my son has been adamant about going to church. I know that many on here have spoken on accepting the person that you are today, even if it is a different person from who you once were. My son has grown so much closer to the Lord. After spending two days in our state capitol (3hours away) for a vision appointment, he asked me on the way home "Hey mom, is today Wednesday?..to which I said "yes". He said "Well aren't we supposed to be in church?" Keep in mind we spend the past two days hitting every museum hours at a time, swimming, 4 hour doctor's appointment, picnic in the park, shopping for school supplies and clothes, and at the IMAX theater. I thought for sure on the way home he would be exhausted but instead he recognized the day and had a desire to go worship the Lord. It touches my heart that he has this love and desire to be in church and to participate in out youth group ministry. As soon as he got out of the hospital and inpatient rehab our ministry group had a show at a neighboring church. He and I sat in the audience while the other children and youth went on stage to perform. He said "Come on Mom I am supposed to be up there." He could barely walk and hadn't been incorporated in the performance but knew that is where he was supposed to be. I have said throughout this whole process that he would have a powerful testimony and I am certain be completely usable for the Lord. Why wouldn't he be closer to God when God saved him? He is bolder, and more enthusiastic. He prays more and thanks the Lord always. Now we have always been active in the church, and my children have always had Jesus in their heart and a reverence for the Lord. But this experience has rocked our worlds and impacted us in a way many could never fathom. I am grateful that my son is still alive. Where other people may see his current condition as permanent I say don't tell me what my God can do. Just like their are no limits on the Lord, there are no limits on what my son is capable of through Him. Didn't mean to have church on you this morning but I just wanted to share.
Thank you for your response and I will pray for you and your family. God bless.
Thank you Butterfly for that. I will be sure and share it with my son. Good for you for defying the odds and what a blessing for you to be where you are today. I agree that is about the fight, determination, and focus on your goals...with that how could you not be successful. I am going to do everything in my power to help my son in any way I can to reach all those personal goals that he has.
I hope you continue to heal and recover and that your future is bright.
PS <3 Love your name <3
One more thing. I don't know if others have experienced this but I can tell you that I went through phases of pain. I would feel good and then experience several days of pain. Mild to intense, it was always different. BUT, after the pain would reside, I would have a pretty significant improvement of some sort. More feeling, better control of my arm or leg, etc. I never really asked about it because to me, pain equalled improvement. Anyway, just thought I would share. Also, if you would like a referral to a Manual Physical Therapist in your area, please call Steve Warfel at Performax in Greenwood Village, CO 303-■■■■■■■■ Hopefully, he knows someone near where you live. Good luck to you and AJ as you continue your journey. Regards.
yes, this would be reletive to each case. Myself, ive had 3 bleeds. The second one was the craniectomy. I was intensive care for 5 days, and i lost the power of speech. Took me 3 weeks to get out of hospital. My speech was shot to peices - i had 6 months speech therapy, 3 days a week. Then that was that. Took me......5 years to be reasonably happy to get my speech back, altho its never as good as it was before, thats for sure.
Physically, took me 3 months to get back to sport.
Ninibeth: Yes, maybe it's never as good as before, but you're HERE!!! And it sure sounds like you went through sooooo much! I'm glad you're doing better :)
yes that really is an achievement ninibeth, really is. Very hard to do exams i found myself, almost too much!
:) I "totally" understand! ;o)
Hi AJ’s mom,
My husband is the AVM survivor, almost 4 blessed years now. I think even now he makes advancements.Granted the first year was when the most noticeable advancements occurred. It was a slow process but every gain was a plus. He did have about 2 months OT and speech therapy which did help. He returned to work full time 3 months after surgery. He started reading novels about 10 months later, he was an avid reader before so I loved when he picked up a book and has not put them down yet. His main complaint is short term memory loss mainly names but really was not that good with them before surgery. He did visit a neuropsychologist 2 weeks ago, we are waiting on the report. He works full time, drives everyday, does most everything he did before. He does have a 1/4 peripheral vision loss in each eye but has gotten used to that. My husband was 52 when his AVM decided to rear it’s ugly head, your son is much younger and has youth on his side. That will help a lot I feel. I believe therapy is very important. Take it one day at a time.
Many blessings to you all!
Marie
well done to your husband for making a good recovery. Yes, its great to try to read again from a book - just takes us a lot, lot longer to finish them off! What sort of job does he do btw?
I remember early on in my recovery (2 years post surgery) and feeling very depressed because my brain surgeons had told me that I would either be back to "normal" after 2 years or else I would just have to accept where I was at that time... Well, I was certainly not back to "normal" after 2 years! I was still struggling with my short term memory, my inability to "visualize" in my brain and overall, general cognitive deficits. Thank God for one of my aftercare specialists, a Neuropsychologist, that told me that I WOULD continue to improve and build more neural pathways in my brain as long as I "pushed" myself to do so... and he was right! I continue to improve to this very day (almost 10 years post surgery). He (my Neuropsychologist)told me that overall, Neurosurgeon's are very specialized and although they are good with what THEY do, overall, most Neurosurgeons are not well versed in understanding how their patient's actually DO after 10 years! In fact, I actually ran into my Neurosurgeon last year and he was AMAZED and impressed at how much I have progressed ;) My motto: "never say NEVER"!!!! Keep on pushing yourself, keep on believing in yourself and surround yourself with positive people. All of us AVM/ Brain Injury Survivors are on the leading edge of NeuroScience.... I believe that 50-100 years from now the thought process in terms of recovery will be totally evolved and different from where it is today. Good Luck and Good Health!!!
Dear friends,
I didn't think it possible, but 23 years after my AVM bleed and 22 years after the damned surgery that supposedly saved my life, yet started the gradual decline of condition of life, including the inability to walk normally (I was restricted to walking with a cane and still had a severe limp,) I am walking. It hurt like Hell, but every day it hurts a little less. My surgery was just a week ago. And I'll tell you it was sure worth it. My attitude: You can get through anything with the aid of prescription medicine. Ahhh.
God bless y'all, Janine