Fever again, getting dehydrated without IV fluids and grin and bear it

 Today was an interesting day. This AM I did a recording for a 30 second sound byte about RMH to be on the radio. My recording was 1 minute. I didn't realize it had to be that short or I would have worked on what to say. It is SO HARD to say in 1 minute what the RMH means to our family!

Then at noon we had the opportunity to be a part of Flashes of Hope. Professional photographers come to hospitals and take pictures of children with cancer and life threatening illnesses. We are very thankful for the opportunity to do this. For one with a seriously ill child you don't have the time to take them to get their pictures taken and number two you don't have the money. I have wanted to have Luke's picture taken since his transplant. Though he has had some for Children's Miracle Network and Children's Hospital it was neat to have an informal shoot for himself. The girls and I were also in it.. I really wanted the girls to be in it as they are so much a part of our stays here... Makayla has probably spent half her life here.. and it was litterally her first home.

Well you know how you plan to have something go well and well children sometimes have other plans. Makayla and Kyara decided to be VERY difficult during the shoot. They had a makeup artist and I thought Kyara would love that.. any other time she would have thought it was great. Of course this time she wanted nothing to do with it. I'm sure they got great pictures of Luke, but when we did the four of us, Makayla was screaming with her head in my lap and Kyara was being... well just Kyara. Luke and I were smiling and joking through it... so I am hoping they come out cute. But it at least is not a staged shot and a snapshot of reality!!! The photographer was great and just kept shooting through the madness. Thanks so much Flashes of Hope! I do think they got a good one of the 3 kids at the very start. I wish the whole family was here and hope to do a whole family shoot one of these days....


See the tear left over from the trauma... then this is what happened..

Luke and Makayla CHP.JPG

Now why couldn't that have happened just 10 min prior during the photo shoot?!??!

Luke did 5 laps around the unit today. He is walking so much better. Today we stopped his IV pain medication and it is going OK. But the diarrhea started today. He got dry today so they had to restart his IV fluids which helped a lot. But then tonight he had another fever. He is finally eating a regular diet again, but sometimes that makes the diarrhea worse so we are watching closely. 


food again!

IMAG0276[1].jpgA very special class in the Quakertown area sent Luke some get well crafts! Thanks so much to Mari and Faith and all your classmates!!

Luke did have a doggie visit today; he loves the dog visits. Crackers was the dog friend that came today.