Posted by Daphne on February 17, 2016 at 3:30pmView Blog
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!
Keep on fightin'! Jacob is lucky to have you there for him. Sometimes for my recovery, it feels like "two steps back, one step foward" kind of deal. Hopefully, it's only going to get better for you and Jacob.
Daphne, I can only imagine what this has been like for you guys and it touched me with the following from your post : "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" , I feel this has happened to me since my bleed, I always look at the positive side of tings in that I'm lucky to be so well and have no serious deficits, but then I know inside that I've changed and there are scars on the inside as well as the outside, But with a LOT of effort and patience (something I have none of these days !) I'm learning to cope better and be less irritated with those I care about and I hope the same for Jacob :) , One thing this AVM journey has taught me that after removal things do actually get better but VERY slowly and with time. Set small goals and you'll see them being hit :) , Take care
Jimmy, Great reply and its good that at least you can see that one step forward :) , That's the one we're all aiming for.
Thank you for your encouraging words...I hope with maturity he will get to understanding how terrible he has been. And can make those improvements.I am hoping that with the posts and that by being very honest and real that others won't feel alone in their journey. You have given me hope that he won't always act as if he hates me and I am the worst parent ever!
Thank You from the depths of my heart.