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
September is Gone October is almost too…
Where did September and October go?! It seems to have zipped right by. We closed our pool, headed to Disney, we got Guardianship of Bailynn (eye roll here) and have now embarked on painting our home (our 2 story ceiling home, and I have discovered today that I am terrified of scaffolds – just NOPE)… Read More
99 days
99 days ago Bailynn went into surgery with our expectations set to high and our stomachs full of butterflies. 99 days ago she had rods, that she needed and we didn’t want, placed back into her back for the 3rd time. 99 days ago everything seemed wonderful and then, the stegosaurus bones came out of… 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
It’s her birthday! The Options.
We drove to Indy yesterday to let the surgeons get a good look at her back. The first thing they booth said was that it looked better in person than in the photographs, something I tried to relay, but it is hard when we live in a visual world. Photographs can often askew coloring and… 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
5pinkpeonies.com 