Chicago jan 24-26

Well we just got back from Chicago tonight. I will tell you about our short trip. We left OKC at 12:40pm and landed at 2:45. Addyson had a blast on the plane and was making everyone laugh. Her personality is so funny. We then took the train ride and walked about a 1 mile and a half to our hotel. We didn't know it was that far or we would have taken a taxi. Addyson walked the entire way while pulling her little suitcase and never complained. Might I add it was 36 degrees outside. We got settled in and then walked down to a burger place called "five guys". It was so good!! Then went back to the hotel where Addyson and I colored and ate some junk food. The headed to bed!

We got up around 6:45 and went to the hotel lobby to eat breakfast. Then back to our rooms to get ready. We got all bundled up because it was 23 degrees outside and snowing. Luckily the hospital was only a few blocks away. We got there at 8:30am and they got started right away. They took pictures of fingers and where it showed ALOT of muscles damaged. Then physical Therapy came in to find out what she can and can't do. She got a score of 32 out of 50. Not very good at all. She wasn't in the mood to be playing their games either. But i don't blame her. She knows every time she goes to a doctor they poke her. Then Dr. Pachman came in and examined Addyson and spoke with us about what was going on and what she things. She is the best in the disease and has 200 patients under her care with this disease. She only deals with JDM. She knows what she is talking about. She didn't give us good news. Addyson has alot of muscle damaged. More than what we thought. She is going to get alot more aggressive with treatments and dosages of meds. She is going to work with the doctors here in OKC. We will travel back up to Chicago in 3 months. Then we went to the basement of hospital to have blood drawn. They took 10 viles!! Cory was amazing at taking Blood. I wish she was here in OKC! Addyson still didn't like it but she was so fast at it!! She gave Addyson some apple juice and a gift certificate to McDonalds. She was great!!! So we went to eat at McDonalds at the hospital then headed back to the hotel. Addyson wasn't feeling very good at all. So we all took a nap! After we woke up went to go eat and stayed in the hotel after that to go to bed early.

The next day( Tuesday) we went to the Shedd's Aquiruim to see all the fishes. Addyson had a blast. It was a free day there so even better! We stayed there for a couple of hours and then headed to the airport. Our flight wasn't suppose to be until 6:50 but they got us on 2:20 flight home. So it was nice to be home early. Addyson missed her brother and sister and nana and papa!

Overall it was a very disappointing trip. We were hoping for good news and got the opposite. But Addyson has to be treated aggressively or she will never beat this disease. So I am glad we met with Dr. Pachman so she can get the right treatment started. We will find out the results of Addyson's bloodwork on Feb 5. Addyson's next appointment is April 26 with Dr. Pachman!

6th Treatment

Addyson had her 6th Treatment today. They had to poke her a few times to get a good IV going. She didn't like that too much. Nana was there today, so she made it all better. During the infusion, Addyson watched UP and had to color with her left hand. Her IV was in her right hand this time. The hour went quick and of course on the way home we got Addyson a cheeseburger. She is such a brave little girl! We are heading to Chicago in two days to meet with Dr. Pachman.

Bouncin" Craze

We took Addyson to a place called Bouncin' Craze today along with her brother and sister and Nana. Its a place where they have big blow ups that the kids can bounce and climb and slide down on. Addyson made Nana go with her everywhere and made Nana tired!! lol It was great for her muscles and she did it for a whole hour!! Her brother Kyler had a blast too. Matt and I had to carry him up the slides. And I wonder why I am so sore now. I took Kaylee(4 months old) down a slide too, but didn't get much of an expression. Well it was a blast and the kids did too!!

5th Treatment

Addyson had two weeks off of getting treatments. But it was back to reality yesterday. Today she met with Dr. O'Neil (she had been out of the country for some time and was back). She said Addyson was doing well and she could tell where swelling in her hand had been but now is gone. Addyson's bloodwork came back good. There was only a couple items that came back high. But its a start. They lowered her dosage on her medicine and she will only have IVIG treatments every other week now. Addyson doesn't like getting stuck with needles so this is a blessing.

We will be leaving January 24 to Chicago to see Dr. Pachman at Children's Memorial. She is the best is this disease. We will be returning Jan 26th! I will let you know how it goes!

Thank you to everyone for all the prayers!!!