Sep 25, 2008

Ayla's New Glasses

Here are a few pics of Ayla in her new glasses. She is doing surprisingly well with leaving them on. She will take them off every once in a while but I just keep putting them back on and she seems to do okay with that. I keep telling her how pretty her glasses are and how pretty she is. Of course she keeps saying, " I cool". She's so funny!!
Anyway, she looks so much older with them. I was kind of sad yesterday because It made me realize how fast they grow up!!

Sep 20, 2008


To update everyone, we have not started the medicine yet. John and I have not felt right about giving it to her and are just not sure what to do. Please pray that God will show us what direction to take with Ayla in her treatment.
We also ordered Ayla's glasses and are waiting for them to come in. She was so funny when we went to try them on. Every time she would try a pair on, she would say, " I cool". It was so cute! She did not want to take them off. I just hope she feels that way when she realizes that she has to wear them everyday. It still makes me sad to think about it, but I am feeling better about it.
I also got her two year old pictures taken a couple of days ago. Talk about a challenge, does anyone else have a hard time with pictures? Ayla does not like pictures and she would not even let me put her down for the first twenty minutes. I was so stressed out by the time we left. Anyway, they eventually bribed her with a balloon and we got a few good pictures. What a day!!!!!

Sep 10, 2008

Ayla's medicine

Today I went and picked up Ayla's medicine that she is supposed to start this weekend. When I got into the car, I pulled out the papers to read about it and I was shocked to see not one, but THREE pages of possible side effects/adverse reactions. The very first line says, "Methotrexate has infrequently caused serious sometimes fatal side effects". Other complications are nausea, bone marrow suppression, liver problems and mouth sores. Monthly lab work is also required while on this medicine to make sure the liver is not affected. Oh, that's just great. I could barely hold back the tears knowing that I had to put this awful drug into my baby's body. I just don't know if I can do this or not. This drug will also lower Ayla's immune system which worries me as well. It warns you to stay away from sick people and wash your hands frequently. This will surely put John into a frenzy, he already sanitizes EVERYTHING. Seriously, he takes Clorox wipes everywhere! I don't know about this now, I am not feeling very comfortable about giving this to her. I will keep everyone updated.

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.

Sep 3, 2008

Eye Appointment

Today was the dreaded eye appointment. It went okay, I guess. They had to dilate her eyes today because the Dr. did notice that Ayla's eyes were crossing. She cried a little, but not as much as the last appointment. Of course, I had to sing to her the whole time, give her stickers and suckers, but if it makes her feel better, I will do it. At the end of the exam she was exhausted and she would not let the Dr. do the slit eye exam to check for inflammation from the arthritis. He did not want to force her since she had already been through so much so I will have to take her back next month to have it done.
Because of the strabismus (the turning of one eye) Ayla is going to have to get glasses. He said this is the first step in correcting it and if glasses do not work, she may have to have surgery. When he told me she had to have glasses and possible surgery, I started to cry. He probably thought that I was crazy, crying over glasses, but It was just the stress of everything. Its bad enough that she has to suffer with JRA and now this. I called John and was crying telling him about her appointment. He thought I was crazy too, he was like Lesli children get glasses everyday.. oh well, I know it could be worse but I just want her to be healthy. ALL OF HER!! I'm sure most of you know, it just hurts so bad when something is wrong with your child. We have her appointment with the Rheumatologist on Friday which I am not looking forward too.