The Rant

I need to rant for a minute. 11 years ago Bob and I paid for home modifications for Bailynn. We put in laminate floors, ramps, put her a bedroom on the first floor and gutted our bathroom to make a roll in shower. This all went beautifully. Let me express that no one helped us… Read More


We are 3 months out from Bailynn turning 18. I can’t believe that. The last few months have been laying out how our spring will look for her. Here in the next few weeks she will get her VNS replaced at Riley (this helps control her seizure activity and they have a new version geared… Read More


It has taken me a bit to sit down and write this update because I simply didn’t want to jinx it! Collagen went in 2 weeks ago this Friday. My initial reaction was good, as was Bob’s and the plastic surgeon. The collagen injection went well, the overall appearance of the rods was diminished drastically… Read More

We Cushion the Bulge

Collagen injections will be done this coming Friday, May 19th, at Riley Children’s Hospital. She will have to stay overnight for observations. I called Cincinnati Children’s hospital yesterday to discuss Bailynn’s nutrition levels looking from a Tuberous Sclerosis perspective. I had a great conversation with a nurse there. I have been more than a little… Read More

The Reaction

Bailynn has had some kind of pressure point irritation or allergic reaction on her back. I really believe it is due to the combination of adhesive bandaging (which she always has issue with), neosporin, and pressure on the new rods and their placement.  She now has large irritation points on her back right where the… Read More

Rainy Day Bliss

Bai has had a great day. She has chilled in her room playing with toys, watching movies, and jamming to music. She has ate every drip of food I have given her. She has giggled at me!!!!!  I love days like this! Surgery recovery is always the worst, but today made the process a little… Read More