4th of July

We were inside most of the day on the 4th. It was a pretty windy day and Chloe can't be out in the wind. Although it was a boring day for me, my kids didn't mind it much, they just played down stairs. We finally were able to go outside at dinner and have hot dogs and light our fireworks. I have remind myself just this one summer, and hopefully next one we can do more things.

Chloe is doing good. She said to me the other day she can feel herself able to run a little faster. She was pretty excited about that. Yesterday Jake took her to get her trailer (we store it inside Jake's office building so it won't get damaged by the weather)to have at our house and Jake mentioned to her how nice it is to not have a picc or central line anymore. He asked her if he made her feel like more of a normal kid. She said that getting poked doesn't make her feel normal. So I think it will be awhile before she feels "normal". She looooves her trailer and they played in it all night and this morning bright and early they were up playing in it! We are so glad we did make a wish. It makes her so happy to have her tent trailer.
We still have to go down to clinic once a week. Her rash was worse last week but it seems to be calming down this week so we are glad about that. No news on her tests, and she still has the poop problems, so I am thinking one of them will come back postive.