Intro to my son

[starienite]

As I have posted previsously my son is getting a wish trip due to his AVM.
The American Stroke Assocation has an excellent resource that defines it and apparently I need to post 8 more times to post it properly.


Devon's was diagnosed by a bleed in his brain. On January 1st of this year around 3 in the morning my dh couldn't wake him up and he was rigidly posturing. He was taken to er and then life flighted to a childrens hospital. He was in a medically induced coma for 12 days while a drain was placed to remove the blood and relieve pressure in his brain. People thought that he wasn't going to make it. He was transferred to a different hospital 8 days later and had brain surgery to remove part of the AVM, the worst bit.

They weren't able to get it all so in March he had a treatment called Gamma Knife which is a radiation treatment that delivers precise delivery of radiation to the avm without damaging healthy brain tissue. That treatment could take a few years to see if it worked.

He miraculously has few impairments from his bleed. Some issues with impulsiveness and paying attention and he can't wiggle his left toes without moving his whole foot.

An another messageboard I am a part of informed he may qualify for MAW so I applied for it and we were informed around the end of March/start of April that he was in, just waiting to meet with the wish grantors.

 

[mdvlprof]

So glad your DS has few permanent impairments.

My DS is a non-verbal quad because of a brain-bleed. Took a therapist to agree wth me that cognitive abilities were intact. Drs didn't spend enough time with him to notice.

 

[starienite]

In the beginning Dev was hard to gauge by doctors because by the time they saw him he was done for the day. It was hard to tell if he was having problems or whether he truly couldn't do what he asked or just wasn't going to cooperate.
The only problem that I really had with the doctors was when the doctors resident just blurted out that Dev would be having surgery in two days in front of him. As soon as he saw that Dev was upset he left and my sister went off after him, told him off and said that Dev was only 7 years old and he is freaking out now and then he came back and apologized. My sister still wants to slash his tires.

I think he mentioned something to Dev about his scar would attract the ladies or something like that. Of course none of that compares to the in-law drama. My father in law is officially hated by my parents.

This is turning into such a long post but anywoo. 2nd day at the hospital we are staying at my parents house, dd is being enrolled in school by them. I went to find my husband and update about Devs ICP and he was helping his dad and mom find a hotel. My FIL asks me why are we enrolling Cc into a new school and I tell him we are staying at my parents house and that is too far to take Cc to her regular school.
Then he said, "Why, Dev isn't here". It took every single ounce of composure and reminding myself that a screaming match at the hospital wouldn't help Dev or the other kids. I just told him that his body was here that was good enough for me and left the room. I wanted to tell him if Dev wasn't here that he was free to go back home. Of course he suddenly the devoted papa when Dev woke up and was out of the pain med fog. My dh was just frozen he didn't know what to say or how to tell his dad off. MIL was on the phone and didn't hear it. And that isn't all, but the post is way to long now.

 

[ForAandA]

Sending hugs and prayers your way. When my oldest DD was born with multiple DX's, my now ex FIL made some comments as well. He was escorted out by security

Amanda is now a happy and mostly healthy 13 year old. EX FIL is nowhere to be found