Brennan just "chilling". He is too cute!!

Rheumatology visit update

Sorry it has taken me so long to update everyone on Ayla's last Dr. appointment. Im sure most of you know by now that we decided to change doctors, so we are now taking Ayla to Cincinnati Ohio instead of Columbus. John and I were not happy with her last doctor, we thought he was not thorough and there were other problems that made us feel uneasy as well. I knew about the hospital in Cincinnati and I did some research on line about it, and we decided to take her there. Today was a VERY long day. We were told that the drive was only about 2 1/2 hours, so we thought if we left around 9am, we would have plenty of time to spare. Her appointment was at 12:30. We had to wake up Ayla to get her ready and fed before we left. Not a good thing, she was not in a good mood and was crying around all morning. I knew then, that it was going to be a LONG day. I was right Ayla cried most of the way there, the drive ended up taking almost 3 1/2 hours and we really didn't know where we were going so we ended up being 30 minutes late. When we got there, Ayla would not let them weigh her , I couldn't even put her down without her screaming so they could get her height. I kept apologizing to the nurse, I felt so bad. We eventually got her weight by giving her stickers. She loves stickers. She was 26 pounds, same as her last visit. We went back to the examine room and one of the fellows (a fellow is a pediatrician specializing in rheumatology) came in to get all of Ayla's past history and information. We will be seeing this fellow(Dr. Das as well the actual Rheumatologist Dr. Huggens) every time we have an appointment. After explaining everything to Dr. Das, which took forever, she proceeded to do a head to toe physical exam of Ayla, something her other doctor NEVER did. Of course Ayla did not like this and she screamed and cried the whole entire time. John had to leave the room at one point because he was so upset. I have to mention too, that this was all done during her nap time, so that definitely did not help. I held her on my lap while she did the exam, but she still was not happy. I was very appreciative of the very thorough exam but I must say that it did take FOREVER. Anyway, Ayla ended up crying for at least 45 minutes to an hour. She wanted to see Ayla walk, so we went to get her some toys out of the today closet they have, but she would still not let me put her down. I must say it was quite miserable. After Dr. Das, heard Ayla's history, did the exam, looked at her most recent lab work which was in July, she said she was going to relay all of the information to Dr. Huggins. Dr. Huggins came in shortly after that and she wanted to do an exam as well. Not a head to toe exam like the other Dr. did, she just wanted to look at her joints and take a good look at the ones that are affected. For some reason, Ayla liked Dr. Huggins and she actually let her touch her and exam her without crying. I was so relieved! After her exam, she went on to tell us that since Ayla has been on Naproxen for 7 months and her joints are still swollen, that we probably did need to move on to another medicine and the next in line is Methotrexate. She did a wonderful job explaining Ayla's condition to us. Ayla was initially diagnosed with pauciarticular JRA (type 1) back in march. "Pauci" means few. By definition, this form of JRA has 4 or less joints involved during the first 6 months of disease. Approximately 40% of patients with pauciarticular JRA will go on to develop arthritis in more than 4 joints over the course of the next few months to years. This is sometimes called extended pauciarticular JRA. This is because the arthritis went on to involve more than the original few joints or joint to involve many joints. If you remember, Ayla only had the knee involved and now her ankle, elbow and neck are involved. So that is where we are now, extended pauciarticular JRA. I thought this was interesting and she explained it very well. She suggested the methotrexate mostly because of Ayla's neck. She said the neck is bothersome to her because you can not inject the neck(if needed) like you can the knee or ankle. Ayla can turn her head to the left without trouble, but she can only turn it a little to the right. There are times too, that she can look up, now I know why she will not bend it back when I wash her hair. Some days are better than others, but I can definitely tell when her neck is bothering her.
We told the doctor's about our concerns regarding the medicine and she talked it over with us until we felt comfortable. Well as comfortable as we can be I guess. We don't want to put her on the medicine but we feel that we do not have a choice at this point. I do not want her to get worse and I do not want her joints damaged later in life because we did not treat it now. The longer you leave a joint inflamed, the more damage you will eventually have. With her sed rate so high, there is definitely some inflammation going on. She said the most common side effects are nausea (for about one day) mouth sores, mild hair loss, headaches and rash. If a rash would occur, then she would probably not be able to take it. The Dr. wants new lab work done, x-rays of all of her affected joints, an appointment with her pediatrician so she can get the flu shot (because mtx lowers your immune system) and all of her immunizations up to date and finally an eye appointment to make sure her eyes are still clear. Wow, it is going to be a busy couple of weeks. Ayla will definitely not be happy about all of these appointments. We have to wait two weeks after her immunizations to start the medicine.
While we were there, a Physical therapist came in and explained to me different exercises that I can do with her at home. She also made a piece of foam to put in Ayla's left shoe called a shoe lift (the unaffected side) because they discovered that her right leg is 1cm longer than the left. This is not unusual because the leg with the increased blood flow from inflammation will sometimes grow longer. This increased blood flow brings more nutrients to the bones around the knee and they will grow more rapidly, causing the leg to be longer on that side. Once the inflammation resolves, the legs will eventually even out again. So with that, we got all of our prescriptions and orders and left. Our appointment ended up being THREE hours long. I repeat THREE HOURS. Ayla eventually fell asleep for a little bit while we were talking to the DR. By this time we were starving and we headed to a restaurant for a bite to eat. One of John's friends had told him about a place that was on the river so we decided to eat there. Ayla did great at the restaurant, we just have to eat real fast so we can leave before she gets bored and wants down. We sat inside next to the window so you could see the river from where we sat. There was a little family of ducks that held Ayla's attention while we were eating. Eventually they left and she kept asking "where the ducks are" I told her that they went home. After that she kept saying "ducks go home" for the rest of the dinner. It was so cute!!
We arrived home almost 12 hours from when we left. We have another appointment in one month. Hopefully it will not be as long as this one!!

A Day Of Fun

Today my sister and I took the kids to the Clay Center. I wasn't sure what to expect because I had not taken them before, but they had a wonderful time. They played in a ball pit (so much fun) , with musical instruments, went down slides, colored pictures and did lots of other neat things. They were both screaming with excitement they had so much fun. We will definitely have to go back. They are having a Halloween day in a couple of weeks that I want to take them to. Thank you Aunt Amy for going with us and for all of your help!

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!!

UPDATE

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!!!!!

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.

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.