Christmas

We had a blizzard here in Oklahoma and it kind of hurt our Christmas Eve plans. You couldn't get around at all and cars we abandoned. So we couldn't go to church, so we stayed home and watched the snow!

Addyson had a great Christmas. Santa brought her a lot of toys. Her favorite is the Dorothy Doll and the Wicked Witch Doll. She likes alot of her little brother and little sister toys as well. They all share! After spending Christmas in the morning at our house, we continued to my parents. Luckily we live in the same neighborhood. We got stuck a couple of times. Uncle Travis and Aunt Brooke came to spend the day with everyone as well. After dinner, we opened up more presents and then we went outside and played in the snow. Addyson and her brother Kyler went sledding down the hill. They had a blast. Overall it was a great white Christmas!!

December 20, 2009

Addyson had her 4th treatment today. Today the whole family went with her. That was interesting!! Kaylee slept the whole time and Kyler was flirting with all the nurses and running around everywhere..lol Addyson did okay. She still cries when she gets the IV but I think they are getting a little easier for her. Addyson colored with all of us while she received her treatment. Dr. Jarvis started her on another medication for her rash. There is no change today. She is still very tired!

We will be going Chicago on Jan. 25 to see Dr. Pachman. We had heard she is the best of the best with this disease. She even wrote a book on JDM. Dr. Jarvis in OKC is doing a wonderful job here, we are just going up there to make sure there is nothing else we can do to get her to Remission.

December 17, 2009

We took Addyson to the mall and had her nails painted! She loves doing that. Matt and I have noticed she is very weak lately. She has to sit in a stroller while walking around the mall while her little brother walks. We have also noticed she is starting to fill out a little bit. Because of the steriods she is starting to look swollen due to the water retention. She always ask how many days till she has to go back to the doctor.

I called the doctor in Chicago who is the expert on this disease to make an appointment and we will hopefully be seeing her soon. She is my little trooper!! Hoping her appointment on Monday brings good news and we can start tappering off these meds and treatments!!!

December 13, 2009

Addyson had another treatment today. I took her today. She was only getting a treatment today and not seeing the doctor. Her appointment was at 9am and we didn't even go to the back until 9:45. Then by the time they got the IV in, it was 10am. So we didn't even leave the hospital until 11:30. It was a long day for Addyson. She knows as soon as she walks in that place what is going to happen. So waiting is a long time for a 3 year old. Overall Addyson did okay and we watched a Barbie movie together. While they were putting in the IV, she was yelling to mommy " NO NEEDLES MOMMY"!! Oh it breaks my heart. I know she has to have these treatments but I wish it was me and not Addyson! They are just so hard for all of us! Addyson has another treatment on Dec 21st and we will also see Dr. Jarvis then. Praying for good news and maybe we can cut back treatments to twice a month.

December 7, 2009

Addyson had another doctor's appointment today. Matt took her to Children's Hospital while I stayed home with the Kyler and Kaylee. Matt said Dr. Jarvis said her hands are starting to look alittle better. She didn't cry as much this time getting the blood taken or getting the IV. During her treatment she watched Tarzan and spongebob. It took about an hour long.

Addyson will have treatments every week till the first of the year. If all goes well and she continues to improve then after the first of the year she will go to every two weeks of treatments and we will lower her dosage of her meds. Overall all good news for Addyson.

We took her and the other two kids to chuck e cheese after her treatment. She had a blast. She was such a big and brave little girl today. I am so proud of her.

Addyson has been taking her medicine like a big girl! It has been making her vey tired. She is usually in bed around 6:30pm each night and is up around 7:30am. She had gymnastics a couple of days ago and she did great. We have not noticed any muscle weakness and the rash on her face is good one day and the next day is very red. Overall she is a very brave little girl and is doing well. She goes back to see Dr. Jarvis on Monday for another IV steriod treatment.