Radio Silence

I think this spring hit me a little harder than I had anticipated. My facebook stream started filling up with happy graduates; children Bai’s age. My feed had post after post of college visits and acceptance letters with smiling families – proud parents. My heart ached. Graduation cards started arriving in the mail and I… Read More

Never as planned

Surgery is not going as planned and Bai could use a little extra prayers this morning. The other girls and I are in the waiting room, and the nurse is making her rounds. Every family is quiet and patiently waiting for their family member to get done. We know this wait. We are too well… Read More

Double Surgery April

Bailynn will be going under the knife twice in April. Sounds like loads of fun right!? NOPE. Her first procedure is April 12th to do a Distal Femoral Osteotomy, hip steroid injection & hamstring release surgery. (this surgery will put her in the hospital overnight) Her second procedure is April 19th to replace her VNS under… Read More

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

Fortitude

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

Collagen

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