Wednesday, April 28, 2010

Chicago visit

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 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

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!!

April 20. 2010

Addyson had a treatment today. And guess what?? The port worked! Matt actually took he today and they figured out something by mistake. When she looks down at her port, somehow her port is getting tangled up. When she looks away, I guess it straightens out and works. Yay!!! It is better than nothing at this point. It takes 3 or 4 people to hold her down each week. Next time she has a treatment they are going to at least give her something to calm her down ahead of time. Hopefully it works.

We leave for Chicago on Sunday!

Sunday, April 18, 2010


Its been a while since I have updated on Addyson. Addyson started physical therapy a couple of weeks ago. She went twice and finally the girl said Addyson was passing all the test with flying colors. The were making her jump and walk. Well she can do that. Addyson just gets tired walking for long distances. But I think that will change later on.

Addyson had a rough night last night. She didn't sleep very well and was complaining about her ear. So I took her to an after care clinic and she has an ear infection in her left ear. So she is on more medication for that.

Matt and I will be taking Addyson to Chicago next weekend to see the specialist. Hopefully we get better feedback then last time we were hear. So good news for a change would be very nice!

Overall Addyson is doing okay. She has lost a lot of weight and is still very Active. I just signed her up for T-ball that starts in a few months. She is very excited!!!

Her next Treatment is Tuesday.

Wednesday, April 7, 2010

Treatment Day

Matt took Addyson up to Children's Hospital today for a treatment. Since she hasn't had one in two weeks. The Port of course wouldn't allow blood to be taken from it. So we had to use a vein. I refuse to port her through another surgery. So hopefully her veins will hold out atleast to get Blood taken. Addyson did okay. Her doctor wasn't there today so they couldn't give her the sedation medication to help her calm down. Ugh! She will not have a treatment for two weeks. Hopefully her levels stay good!!!

Matt took her to chuck e cheese after her treatment to have some fun. Atleast she got thirty minutes of being a normal kid again. One day hopefully she will off all these meds and treatments! Addyson is slimming down. It has been about 2 and half weeks since we have been off of Prednisone. She is starting to lose the weight and she is happy about it. You can tell! Addyson is finally over her cold. Her brother and sister still have it. But atleast only two are sick and not all five of us.