Sep 5, 2008

Rheumatologist appointment

Today was our stressful 6 hour long day (3hours up and back) to the doctor. Since Ayla has not been showing any improvement recently, we knew it was probably not going to be a good one. Dr. Spencer was not happy with Ayla's ankle and elbow, they are still swollen and she can not fully extend her right arm. She holds it bent most of the time and she is making herself a lefty. She eats with her left hand now , throws a ball with her left arm etc... also because her lab work is still extremely high, and because we have noticed that her neck is beginning to become stiff, he thinks that we should try her on a second line medication. He suggested that we try methotrexate in addition to the Naproxen that she is already taking. You can take it orally or give an injection one time a week. We decided on the oral route for now and if that doesn't work, we may have to start the injections. Needless to say we were very concerned about putting her on such an aggressive medicine but he reassured us that children have been taking it for 30 years and that it has been a very helpful medicine even putting some children in remission. For those of you who don't know, Methotrexate is a drug used to treat certain types of cancer as well as adult RA. It works by interfering with cell growth and by suppressing the immune system.
It was a lot to take in and needless to say, we were very upset. Ayla, however did make us laugh at the end of the appointment. When we go see the Dr, the nurse will give Ayla a few stickers so she will not cry. On this particular day they had some new stickers (sesame street, dora) and she got quite a few of them. While we were talking to the doctor, Ayla was putting stickers on my shirt. No one was really paying attention to what she was doing because we were so heavily engrossed in conversation. When the doctor got ready to leave and I got up, I looked down and I had about 100 stickers on my shirt all in neat little lines. It was so funny, the doctor said "I see she likes to decorate". Oh well, it was a much needed laugh after such a serious conversation.
The ride home was depressing, we didn't say much. We were both to upset. If I could have this illness instead of Ayla, I would take it in a heartbeat. I just want to see her happy and healthy. To the average person who does not know Ayla, she looks healthy on the outside, but I see the everyday struggles that she has, and it is just not fair. No child should have to suffer with aching joints every morning or have trouble walking, running, jumping. I just pray that we are doing the right thing about putting her on this medicine. I just don't know what else to do right now. Please continue to pray for her.

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