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
So, this morning I got up and took care of my furry family. I was about to start my ritualistic morning pot of coffee when I heard Bailynn go into a seizure in her room. This is the last thing she needs to be doing with her back in the state that it is in.… Read More
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
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
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
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