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
Bailynn’s Kidneys and 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
A Glimpse
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!!!
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
Update on Bailynn
For the girl who would never see 13…WORLD, She’s going to be 15! Read More
Some of My Favorite Bailynn Posts
Bailynn suffers from Tuberous Sclerosis. These are a couple of my favorite of my Journal posts from her Caringbridge Read More
