Prep

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

Third time BETTER be the CHARM!

In 2 weeks Bailynn will get her 3rd set of scoliosis hardware. 3rd. Seems completely insane! That whole “3rd Times the Charm” stuff, better be so! What has happened since I last updated. Well, we have drove back and forth to Indy like mad people. Bailynn has underwent CT scans that required hours of iv fluid… Read More

Unicorn

It has been a week since we saw the other surgeon. Today we are heading to Cincinnati for TS clinic to address Bai’s kidneys. I have a few minutes in the car, while Bob drives, to update.  

Last week we met with the surgeon that Bailynn’s Neurosurgeon recommended. The unicorn doctor as I have been… Read More

The Appointment Opening

It never happens that we have a trip to Indy, to see one of Bai’s specialists, and another calls to see if we could perhaps come on that exact day too. No. It typically goes, I made Bai 2 appointments for the same day – woohoo!!! – and 2 days before said appointments, one doctor… Read More

The next week at a glance

The last 2 weeks and 3 days have lasted for over a month, I am certain of it. Looking at the destruction out our windows, constantly calling insurance and dealing with adjusters, has been an exhausting ordeal. This is nothing like dealing with Bailynn’s medical insurance stuff. We have finally received a number for our… Read More