Anyone else have a young child with a TBI?

[DisneyMom5]

Memorial day 2004 (5/31) my then 2.5 yo was hit by a tree limb (it was a live limb, broken in storms the week before and brought down by a strong wind.) He suffered a sheering injury to his brain and was hospitalized until August. I was 7 mo. pregnant at the time of the accident. I lived with him all summer, and my other kids lived with my parents off and on. We got out of the hospital 11 days before the new baby was born!
My son had to relearn how to talk, sit up, crawl, walk, etc.
We have come a LOOOOOONG way since then, but there is still things we are struggling with. We are only down to OT twice a week, which is great. (The only frustrating thing is we have to drive 1/2 hour each way, not bad, I know, but tiring.)

This will be our first trip to WDW post accident. We are really looking forward to it -- it is a long overdue celebration of surviving the events of last year. We will celebrate ds's 4th b-day before we go.

Anyone else been through something like this?

 

[roseprincess]

Wow! What a blessing your ds survived all that.


My story is a little different. Not a brain injury of any sort.
My dd was born with a complex congenital heart defect-Truncus Arteriosis.
She went thru alot. She had 3 heart surgeries so far. The first heart surgery at 5 wks old. About 3 wks after that surgery, she ended up with a very serious Staph Aurieous(bacterial) infection. She had high doses of IV antibiotics for 6 wks. Plus her heart surgeon had to go back in her heart and remove an abcess that was lying between the breastbone and heart. She was pretty critical for that period of time (6 wks). Was in Ped. ICU that whole time. She came thru by the grace of God. Got to come home from the hosp about 4 and a half months old. Her 3rd. heart surgery was at 18 months old, to replace her conduit of her heart defect. She recovered well after that surgery.
At close to 2 yrs. old, had her evaluated for early intervention. Didin't know much about early inter. until the visiting OT and PT people from the hosp. told me about it. In the meantime of getting her evaled, my ds was evaled,also. He is her twin. My ds was diagnosed of autism. Not expecting that at all. Had therapies for him set up as well for speech and OT via early intervention. Throughout early childhood for both of them, continued therapies(OT, PT, and speech) thru the school dist. We had Floortime therapy for my ds thru the school dist. for a few yrs.
Oh, forgot to mention, I was in the hosp. for about a month when my kids where 14 months old. I had extremely bad pancreatitis and passing gallstones.
My doc had me NPO(nothing by mouth) for 2wks except for ice chips and a popsicle here and there. I was on Hyperal for about 2wks. I had complications with my central IV lines in my chest. Had blood clots, so had to be in CCU for 3 days and had Streptokynase(powerful drug to diisolve clots) and Heparin.

We are all doing fine now. My twins are 8 now. Didin't know about Make-A-Wish foundation. I did a search on the internet about a yr and a half ago. I referred my dd. She was granted her wish to WDW last yr ,via MAW!!!!!
It was so deserving since we could not afford to pay ourselves with all of our hosp bills and dh was not making much money. And all we went thru, just so deserving. The MAW/WDW trip was the first time my dkids have ever been to Disney. I have only been there one other time before, in my lifetime.

Disneymom5, have a great trip!

Rosemarie

 

[DisneyMom5]

Wow -- what an experience! I bet most days now seem pretty easy.
I sometimes look at ds and go, "wow, a year ago he couldn't walk, or climb the stairs, or hardly feed himself." Gives you perspective, right?
Although it was h*ll to be separated from my other kids, we actually did have a very good experience at his rehab hospital. The PICU we were at first was very nice to us, but all of those machines were nerve-wracking!
Big blur to me. They treated me well because I was pregnant. God really took care of us.
So glad you took the time to share your story.

 

[nwdisgal]

First of all, big

We had a friend who had TBI. He was on a motor bike and hit from behind by a vehicle that didn't see him. It took him quite a while to rehabilate, but like your son, he had a great spirit and determination.