Well first off Addyson got a beautiful blanket made by Project Linus. She loves it and takes it every where. She took it to Chicago and takes it during her treatments!! Thank you Mark Sexton and his wife for making that happen!!!
Our flight to Chicago was at 7:30 am on Sunday April 25, 2010. So it was an early morning. We had to be up at 5am. Yuck! We arrived in Chicago around 10:30am and after taking the subway to our Hotel ( Thank you Erin Reynolds) we got there around 12pm. This hotel was right in the middle of a big shopping area. Not my kind of shopping. Very expensive shopping but it was nice to go walk around. It was beautiful there. Then we went to eat and then back to the hotel. There was a pool and Addyson wanted to swim. Then off to bed!
Next morning we got up around 6:30am and went and ate breakfast and then back to the subway and headed to Children's Hospital. We tricked Addyson to get there. She thought we were going to the American Girl store. She knew as soon as she saw the building and started asking about her Port. If they were going to poke her. Poor thing! We went and met with Dr. Pachman, the physical therapist and a dermatologist. Dr. Pachman said her rash looks better but b/c the last blood draw had higher results. We will have to wait and see how today's turn out to figure out the next plan of action. The ladies in physical therapy came in and this time addyson did what they wanted and passed with flying colors. I knew she would. Then we went down and they measured how much fat she had in different parts of her body. Then the bad part, we went down to get blood taken. We asked Addyson if she wanted to use her port of vein. She said vein. So that is what we used. The people there in Chicago are amazing at taking blood. He was so quick at it, I don't think she even felt it. I believe they took 7 viles of blood. Now is just the waiting game!
At the hospital we ran into the Carpenters with their daughter Kya who also has JDM. They are also in Oklahoma. They were the first contacts I had when all this began not to long ago. It was so nice to finally meet them. They were very sweet. Matt and I owe that family alot. They helped us get together with Dr. Jarvis and Dr. Pachman!
Addyson wanted a cheeseburger, so we got her a cheeseburger and headed to the American Girl store. Not really sure why she wanted to go there. She isn't really into dolls. she didn't last long in there...lol We then went back to the hotel took alittle nap. Addyson has also been sick this whole trip with a running nose and a bad cough. Then we got up and ate dinner and then went swimming. What Addyson wants she gets..lol
Off to bed, we at least get to sleep in. Got up around 8:45am. Went and ate breakfast and then went swimming and then got our bags and headed back to the airport. Got to the airport and ate lunch and then waited for the plane. Actually ran into a friend of ours at the airport that was on the same flight. He came from another state but was headed home as well. landed in OKC around 5:40pm and was home around 7pm. We had to stop and pick up Addyson's brother and sister. It was a short trip and always glad to be home. As soon as I know the results in two weeks I will keep you updated!!
We were so glad to meet you guys finally! I was reading about how Addyson's port works only at certain times. We figured out Kya's has to be accessed sitting up for it to work. Why? I have no clue, but it doesn't work laying down. Also, when she holds her breath, it won't work! I am so glad that the blood draw went good in Chicago. Aren't they amazing?
ReplyDeleteI will tell you a little trick. You can make them call for the VAT team to come to your room in Chicago and access her port. Then you don't have to go down where the other sick kids are getting drawn at. Also, they are absolutely amazing! Kya had 14 vials drawn and they do it so quickly.
Keep in touch!
THanks Kalee. I just wish they would have figures that out before making her go through 3 surgeries!!! B/c of all the problems with the Port, she doesn't like anyone to touch it. She would rather use a vein. So as long as they work we let her have the choice for blood draws. But I will keep that in mind when we go back in 3 months.
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