Saturday, August 29, 2009


That's how I feel. Running on auto-pilot. Did I tell you that Brianna can't have baths anymore? Nor can she go swimming in any body of water. Well, actually she can if we want to end her life sooner than later. Sounds crazy but the one common denominator in all three major "blue" spells was that they happened within 10 minutes after a bath. When Jerry said after the second one, no more baths, I was like what? That's ridiculous but actually it's not. When Brianna is placed in warm water, it causes her body to adjust to the temperature which changes her blood flow, which causes the heart to send un-oxygenated blood throughout her body, so she is still breathing, but there is no oxygen. Which explains why during the last blue spell, she was breathing from the oxygen tank yet she stayed blue for at least 10 minutes. So now it is wash-cloth baths all the way.

We have enjoyed the many visitors. Here's some pics I snapped. Didn't get one of everyone. Oh well....


  1. Sorry to hear about the "no bath" rule. This whole thing is so hard for me to wrap my mind around. I think of Brianna and all of you so many times throughout the day.

    I must say, you have some wonderful pictures on Brianna's site. I absolutely love the one of her sitting in the red chair. She looks like such a big girl!

  2. What beautiful pictures you have of Brianna! I understand completely on how you feel and none of it seems fair. We continue to keep you in our thoughts and prayers. Tell your daughter that we love her tatoo. My daughter designed a tatoo for Tristan and we each got one and it means so much to us.

  3. Brianna is such a beautiful child..We have a grandson who is severely disabled...We thank God for every day we have him and love him so very much....Our hearts and prayers go out to you and your family...We can truly say we do understand...Brianna has such a wonderful and loving family...God Bless you all..

  4. Praying for you ... and praying and praying and praying. Big hugs to you and I wish there was something I could do to help you through this ... xoxo.

  5. Wonderful to see Brianna being loved on by so many.

    My heart breaks reading your posts. Truly cannot imagine what you are going through but agree with so many who are so in awe of your faith and walk. God bless you as you continue to love and cherish your precious little girl.