Replies to This Discussion

Permalink Reply by erin lyn hurley on August 18, 2011 at 6:21pm

Hi Hayley. I'm Erin. I'm glad you found us here. I know how you are feeling and I promise you that you are not alone. My son's AVM was found when he was 3 months old. I felt the same way you are feeling. Please hold and love on Jacob all you want. You WON'T hurt him doing that. Heck, I climbed right in my David's crib at the hospital and cuddled with him,much to the disapproval of the nurses. There's nothing I can say to stop your worrying. I still worry. I stayed awake for days just watching too. Try to sleep when someone else can be awake to watch him for you.
An MRI and angiogram will be easier to handle. Deciding on a treatment plan will be tough. There are many ways to go. Get as many different opinions as you need until you are 'comfortable' with the plan. As crazy as this may sound, I think it's easier dealing with babies than older kids. There is no 'new normal', it just is always normal. My David doesn't butt heads with me over anything that he shouldn't do,because he's never been allowed to do it.
I'm sorry to say but it won't be over and done with. I think that it traumatizes the parents more than the babies. But you will move on,I promise! Nine years later,I still want to wrap him up in bubble wrap and keep him with me always. Just remember to breathe and take it one day at a time. You will be in my prayers.

Permalink Reply by mrs sarah major on August 19, 2011 at 10:30am

Hi hayley, erin is right the worry is worse for the parents although you do learn how to deal with it a little better over time.My daughter was 17 when we found out she had had a bleed from an avm we now know she has multiple avms and cannot be treated because of the risk involved because they are in a bad position a chunk of one of them in her brainstem. All i can say is stay strong and positive and keep in touch with people on the site it helps alot even if you just want to let of steam with people who understand. Sarah (rebekahs mum )

Permalink Reply by hch on August 19, 2011 at 10:57am

Thankyou Ladies, i feel a bit better today , i have been hugging him like crazy! he is such a happy little chap! :)

Permalink Reply by edie pantelis on August 19, 2011 at 4:34pm

Hayley, we did not know jamie had an avm until she was 30years old , she has led an ordinary life, had 2 beautiful children supposedly, it had been inside her head all her life, she says she always had headaches, she even blames her behaviors on the position the avm was located, post surgery, she,s great i can't even imagine how much different our lives would have been had we known sooner, good thoughts may god hold you and jacob through this.

Permalink Reply by Kelly Nelsen on August 21, 2011 at 8:59am

What a cutie pie! :)

Erin's right -- you won't hurt him or make his AVM bleed by hugging him. When my son's AVM ruptured and I joined this site, I conducted an informal survey on here to see if there's anything we can do as parents to prevent a bleed. I asked what everyone was doing in the minutes that led up to the hemorrhage, and I got answers that ranged from sleeping to brushing teeth to arguing with a spouse to bike riding. (My son was eating a Frosty from Wendy's at the time.) That told me that if it's gonna bleed, it will. It gave me some measure of comfort to know that he couldn't do anything to specifically make it bleed, but it also gave me more cause to worry because I discovered that it's like a ticking time bomb that can explode at any given moment.

So don't be afraid to cuddle him or hug him or give him all the love you want to. That was one thing that I DIDN'T get as an answer to my survey. :)