A family loss and a much unwanted trip

This marks week 5. So Bailynn was trapped in the house for a little over 4 weeks before we decided to make a trip out, only because the skin has sealed back up. It has however not returned to it’s pre-swelling state. Bob and I cautiously took the girls and her to Qdoba and Sams last… Read More

The sweetest of sisters – We go when she can!

Last night….. Bob called me and told me that he was going to have to work very late due to overtime and some equipment he had to look at. I sat the girls down for a family meeting and laid out our evening. First, I really needed to give Bai a shower and change her… Read More

June 9, 2015

Today I finally heard back from Bailynn’s orthopedic surgeon who just looked at the pics I sent yesterday, today. His opinion is much like ours, “It looks awful, lets still wait and see. Surgery is the last thing we want.” Amen! Her back is not worse, by any means, but it also not significantly better.… Read More

Back Update

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

Bailynn’s Letter to Finding Nemo

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

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