Bailynn’s back looks ever-so-slightly better. The swelling has reduced a very small amount and the bright red inflamed color has diminished a bit as well. She is pretty well stuck in her bed watching movies and rattling toys until we can resolve this issue. We gave her a very gentle shower last night and took… Read More
Our endless journey with spinal rods…. Read More
Looking for Magic. Read More
Disney will send your child a autographed photo if they write their favorite character! I had to write Bailynn’s today – since she obviously can’t. The other girls are working on theirs. I wanted to share Bailynn’s. She loves the Finding Nemo Movie so much! I will share what we receive back when we get… Read More
Find some joy in this next week and the weeks to come, it’s hidden in with the ugly. I found some joy hidden in the surprisingly amazing… Read More
Isobel’s Drawquest art. Read More
Another day filled with phone calls from doctors, nurses, and insurance billing departments. Last week was a mess. Bailynn was diagnosed with a severe urinary tract infection. She is on antibiotics and off the rapamune until it is cleared up. She will have to have another urine analysis to make sure it is cleared up.… Read More
Disney MagicBands interfere with medical devices. Read More
I wonder what the other guests were thinking. This is my baby. If it horrified them, imagine how it made my heart feel. It it scared or alarmed them, imagine my endless sleepless nights filled with nightmares and worry. They got a glimpse – this is her everyday life – our everyday life. I wipe spit off my 14 year old daughter’s face. I change my 14 year old daughter’s diaper. They had a glimpse. Read More
MY BOOK IS PUBLISHED!!! Go to iBooks and get it today!!! It is a children’s book – about Bailynn. I illustrated it too. I’m so excited! Please go check it out. JUST LIKE ME
5pinkpeonies.com 