Stomach Pain Continues

Unfortunately, the stomach pain is continuing to be an issue for us. It hurts her all night, all day, all of the time. We were up with her about every half hour last night. (I should say that Jerad was up with her most of the time, I only got up twice) There is just nothing, nothing that makes the pain go away. She usually has a pretty good stretch of sleep from 4 am until 9 am. It continued to hurt most of the day. At about 4 pm, we rallied her enough to head up to a friend of ours birthday party. It was for Lucas Soin..the son of our friends who were also so kind to arrange the massages today.

They had a huge party with a circus theme. These people go all out. They had all kinds of animals...tiny little pigs, a lemur, a peacock, a porcupine, baby bunnies, llamas...they even had camel rides. They had a high flying acrobatic act, fire acts, a man on stilts, clowns, carnival games, carnival food (and adult food too). They had a swing ride, bouncy houses, and one of the coolest things ever...a little mine set up where the kids mined for gemstones. I think this was Ally's favorite thing. I thought that she was going to last for about 30 minutes. After all, she had cried the entire way there. But once we got there, she just lit up. Her little kid genes came back to the surface. She wanted to do everything, and we rode her around in a golf cart to do most of it. She ate, she walked a little, she played a few games. The Soins treated her like a celebrity. Fetching her everything that she wanted (sno cones?) and even arranging for her to feed the baby pony a bottle. We knew lots of people there (lots of people from Dayton Children's Hospital were there because both Vishal Soin and Jerad sit on the board of directors for the hospital together). Everyone wanted to see or talk to Ally. This was really the first public thing we had gone to since Ally was diagnosed. It was perfect, because she is allowed to do anything outside...the germs dissipate outdoors It really was a down day for her, she was miserable most of the day, but just being able to do this for two hours made us feel like a regular family again. And it kept her mind off of it. I know Melissa Soin is one of my most loyal readers....so thank you thank you thank you. And thank you for the massage too. I realized that I had been holding all of my stress right in my back, but I felt so much better afterwards.

Evan and I on our camel ride

This is the high flying act....a little hard to see, but in the back

Here is Ally, Evan and cousin Owen doing the mining. She loved it! Here is her treasure!

Feeding that pony...even got a smile!

Here we are with the lemur, peacock in the background

Swinging with her sister

I, personally, adored these baby pigs. How little!

This was Ally five minutes after we got home, holding her Bobo

Another thank you...to the Wingers for taking Evan to the new lego store in Cincinnati today. The little guy has had a tough time lately, and he deserved to do something fun and pick something out. He had the greatest time and loves his new Star Wars legos.

Tonight, I washed Ally's hair. We have been holding off on doing it...about every five days. Well I did it and I would say about 1/3 of it came out. I can't even touch it without huge clumps coming out. Jerad and I just sit and look at each other in sadness. As a parent, this might be the most depressing thing I have ever had to do. My precious little girl's hair...it was so thick and beautiful. Now it is going to be gone. It is just killing me. I think more than anything it is just a symbol of her disease. And I hate that too.

We have a huge deposit for the hair fairy tonight. (By the way, she brought $5 for the hair last night.) Ally thinks that tonight's amount will be more because there is more hair. She is very close to letting our neighbor (who has a barber chair in her basement) just cut it off. She is so aggravated by it. Any day now...

I think tomorrow's post will be a guest post by Jerad. In honor of Father's Day, he can give the father's perspective. And give me a night off.