AVM Survivors Network

Looking back at one year ago!

So we are still standing and pushing forward...Jacob is set to graduate high school with his class! He has worked hard and so have I with the system!
Jacob still has headaches and his memory is horrible.If he stresses about something he ends up with a severe headache that gives him the auras and leaves him taking a Compazine and passed out all day. He went to florida with his class on a trip for five days away from home and me. That was tough for me but it all was good.However, he did come home exhausted and I could see it in his face. But he was going to go to school the next day.Still using a baby monitor, I could hear him sleeping so deeply,which is rare,so much that he slept through his 3 alarms to get up to go to school.I kept him home that day,he slept 18 hours straight thru.He needed it and he realized when he woke that he needed it and that he also saw he wasn't functioning well on being so very tired. He expressed they were getting up early and going to bed late and going all day while in florida. He pushed but noticed his deficits were really noticeable. We are now waiting for our year check up and plenty of discussion as to what we will do next and what does the psych-neuro eval equate for us.Of course knowing this will be another MRI coming to see what is going on and how things are setting up in his brain, when we get those results we will publish.
As far as Jacob as a whole person...The first bleed made him a lot more irritable as a personality and he was distant and definitely less affectionate.The second bleed it is more noticeable he has no emotional connection to anything or anyone.Emotions are hard to come by unless its anger.He seems to have a irritability he wears all the time.He doesn't strive to communicate and just lets things happen.He doesn't ever know what he wants.Food is a real issue.He hates to eat. It is a chore as to what to eat and his diet is so limited.He hates everything.Nothing sounds good.This is my biggest frustration.
It took him three days to finally share his experience in florida and it was limited at that.He shared him memory goes in a circle.For instance he can have three things rolling around in his mind, like a merry-go-round,and when that thing rolls up he has to act or it will go away til it comes back around if ever.So consequently he blurts things sometimes and he has a hard time waiting to say something because he is afraid it will go away.More often only when it is important.
More later, be good to yourself with love!