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.

November 27, 2009

Walgreen's finally got Addyson's prescriptions in! Dr. Jarvis has Addyson on two medications. She is taking Prednisone (4 tsp) daily and Methotrexate (0.4 ML) once a week. She seemed to me very tired today. She even went in her room and went to sleep without mommy or daddy telling her too. She didn't like the Prednisone at all. So I gave her some coke to drink afterwards. She is being a very brave little girl! She asks if she has to go back to the doctor and points to her arm where she got the IV. I have to tell her the truth. So I explain the best I can to a 3 year old that yes she has to go back so we can get rid of those red cheeks. She is so smart and mature for her age. Please keep her in your prayers that she can get off these medications quickly and go into remission.

What is Juvenile Dermatomyositis?

Juvenile dermatomyositis (JDM) is an autoimmune disease causing vasculitis that manifests itself in children; it is the pediatric counterpart of dermatomyositis. In JDM, the body's immune system attacks blood vessels throughout the body, causing inflammation called vasculitis. In the United States, the incidence rate of JDM is approximately 3 cases per million children per year, leading to 300 to 500 new cases annually and affecting an estimated 3,000 to 5,000 children.
The vasculitis caused by JDM manifests itself predominantly in two ways:
One is a distinctive rash. The rash often affects the face, eyelids, and hands, and sometimes the skin above joints, including the knuckles, knees, elbows, etc. The color of the rash is a pinkish purple, and is called heliotrope (after a flower of the same name with approximately this color). On the hands and face, the rash very closely resembles allergies, eczema, fifth disease, or other more common skin condition, but the heliotrope color is unique to the inflammatory process of JDMS. Some children develop calcinosis, which are calcium deposits under the skin. The rash is the source of the "dermato-" part of the name of the disease.
The second symptom caused by vasculitis is muscle inflammation. This symptom is the source of the "-myositis" part of the name of the disease ("myo" = muscle, "-itis" = inflammation of). Muscle Inflammation causes muscle weakness, which can cause fatigue, clumsiness, not keeping up physically with peers, and eventually inability to perform tasks like climbing stairs, lifting objects, and performing other manual tasks. Other signs may include falling, dysphonia, or dysphagia. The muscle weakness often causes a medical misdiagnosis of muscular dystrophy or other muscle disease. Some patients develop contractures, when the muscle shortens and causes joints to stay bent; exercise can prevent this. The muscles first affected tend to be proximal (i.e., neck, shoulders, back, and abdominal). About half of children with JDM also have pain in their muscles.

November 24, 2009

Today we met Dr. Jarvis! Addyson was scared the minute we walked into his office. The nurses and Dr. Jarvis are amazing. They are so good with kids! Which made Matt and I feel alot better. Dr. Jarvis came and spoke with us about the disease. He made us feel alittle better about the treatments that Addyson would be having. They took 4 viles of blood from Addyson and she had her first IV steriod treatment. She was not happy about the needles. She feel asleep during the treatment which took about an hour. She will also be on two other types of medications. The pharmacy has to order them. So she will start them as soon as we get them. Addyson over all did very well for her first of many visits. We will return to Dr. Jarvis on Dec. 7, 2009.

November 23, 2009

After reading about this disease over the weekend, Matt and I were quite upset and scared for our little girl. I joined a website called CureJM and met alot of parents that their kids had the same disease. I especcially met a lady named Kalee who lived in Oklahoma and helped me get in contact with the only doctor in Oklahoma that treats this disease. I spoke with Dr. Jarvis at Children's Hospital around 5:15pm and he recommending not having the biopsy done. He is an expert in this disease so I said I wouldn't have it done. He wanted to meet with Addyson the next morning to start getting this disease under control.

November 19, 2009

Matt and I took Addyson to the Dermatology clinic where around 20 different doctors looked at her for about an hour. Later that day I got a phone call that they all thought it was JDM. We were so scared for Addyson and knew we were in for a long road ahead of us. I told my family about what was happening and of course they were there to support us and help us out with Addyson's little brother Kyler and little sister Kaylee. The Dermatologist asked us to Bring in Addyson for a Muscle Biopsy on Tuesday, November 24. We of course said we would be there.

Novemeber 18, 2009

Addyson's journery with JDM(juvenile dermatomyositis) began today. I took Addyson to see a Dermatologist about a rash she has been having since around June. Her rash is on her face, elbows, knees, and knuckles. So the doctor walks in and in about five seconds he tells me he thinks it is JDM. He didn't go into details about exactly what this was. He just asked me to bring Addyson to a Dermatology clinic the following morning to have her seen by about 20 other doctors. I said we would be there and of course I went home and read about JDM. I was in complete shock about what I was reading. I have to admit I was in denial about her having this.