1 Day Post Surgery

She is doing well. Last night was rough, we really didn’t get situated in the room till nearly 2am. Bob thankfully got the girls back to the place they are staying, at a decent enough time, to shower and plummet into beds. After they left, Bai and I started the routine of rolling from side to… Read More

Full Inpatient mode

She made it to her room a few hours ago. We’ve begun the battle for home now. She is doing really well. She drank some juice, swallowed the pills she needed to take tonight and closed her eyes to fall back asleep. We have a long night ahead of us and tomorrow will be the… Read More

Finally we have closed

They closed for hours. The Unicorn doctor came out and talked to us, a while ago. She did really well through out the procedure. They did decide to give her blood, though she only lost around 200cc. She has naturally low blood count cause of her bittiness. They are still harping about there vitamins and… Read More

They Never Believe Us!

Doctors tend to not believe us when we tell them how amazing Bai is – no really – they don’t. They see the frail little girl in a wheelchair. They see the chart full of blah, not the warrior before them. Blind. This morning, when this all began, we were told by multiple surgery staff… Read More

Photos 4/24


We are in pre op going through Bai’s history and medications. We’ve met with one person on the team and we’ve reviewed the things that can wrong……thanks for that dude. I’m trying to focus on what is going to be right. VNS is about to be turned off for the surgery.  Surgery is scheduled to… Read More

The last stretch of Highway

Here we are, driving down this same stretch of highway, pointed towards Indy, for what seems like the hundredth time this year. If anyone could do this drive blindfolded, it’d be me, well maybe. This time the husband/father unit is with us, so I get to sit and type for this last distance between Terra… Read More

Heart of Glitter

Yesterday the girls and I made our final Riley trip for pre-op tests. Bailynn’s heart was the subject of this visit. We headed out our door at 4 am and landed at Riley North right at 8. This is a really cool location, but definitely more traffic to navigate to get there. We saw Bai’s… Read More