Good Day

Kaitlyn had a good day today when she was awake. She slept through most of the day. She is only awake for an hour or less at a time. We think this is related to disease progression. I'm sure it takes a lot more to keep her body going than it did before. It seems like last week was her tipping point.

Today when she was awake, she gave lots of smiles! :-) It is such a good feeling to see that she still has happy moments even when her body is failing her. She only had a few minor episodes where her O2 dropped today when she woke up from naps but they were very minor compared to last week.

Almost exactly a year ago! Kaitlyn is sitting on Cole (baby bump).

We don't know what has changed. The disease obviously continues to store sphingomyelin throughout her body which in turn causes normal cells to die. We aren't sure why she had such severe episodes last week and now they aren't as bad. She is on a new medication that may or may not be helping with the episodes but right now, things just aren't clear.

The only answer I can think of is- prayer. Please keep praying for Kaitlyn. Pray that she keeps breathing if she has these neurological episodes and that she is happy and comfortable at home as her disease progresses.

Ahhhhhh!!!! (last year)

I also want to explain the significance of yesterday's post about ice cream. Not all of you know but Kaitlyn is fed completely through a G-tube in her belly. She doesn't get anything by mouth because she could aspirate/breathe it in. Yesterday I gave her little dabs of ice cream on her tongue. She loved it!

Thank you for letting others know about Kaitlyn and for the supportive messages you have sent us.

A HUGE THANK YOU to April and Mike Crow, our friends in Texas who had a surprise fundraiser for Kaitlyn! April is the owner of DaisyCakes and has an incredible gift for baking cupcakes. We just learned about the fundraiser the other week and are so grateful for their thoughtfulness and generosity.  Check out DaisyCakes on Facebook!