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.

Happy Birthday~ Ayla's 2nd Birthday!!

I can't believe my little girl is two today. It just seems like yesterday that we brought her home from the hospital. Ayla has been such a blessing to us. At two years old, she has such a sweet, loving spirit. She is a little mother to her babies and of course to her bunny as well (for those who do not know, bunny hardly gets out of her sight). I tried to sneak and wash bunny last week and she cried the whole time looking for bunny. Since ten months old, she has patted them, rocked them, tried to feed them etc... She will definitely be a wonderful, loving mother one day. It's amazing to see how God has already instilled such a motherly instinct in her. Of course she loves to hug and kiss her baby brother as well. Ayla has been through a lot in her short two years, she is such a trooper, I think she is beginning to realize that all of the Dr. appointments and trips to the hospital are a part of her life. She will always say to me, "its okay" looking for reassurance. I thank God everynight for blessing us with Ayla. I know she will grow into a beautiful young lady one of these days and I just pray that God will give me the wisdom and strength to always lead her down the right path.

Well, since today was Ayla's birthday, we had a Sesame street birthday party. Yes, Ayla is a huge elmo fan and she was decked out in her Elmo outfit. Our house was full of family and friends, and we had a wonderful day. Ayla loved everyone singing happy birthday to her, I don't think she wanted us to stop! She had a great time playing with her little friends and after the party we let her play in her water table and ride her roller coaster. (Thank you mama Sandy, she loves it!) Thank you to all who were there to share this special day with us! We love you!

OUR VACATION

Our vacation was last week and we had such a great time. Brennan had a little stomach virus and didn't sleep the whole time, but other than that, it was wonderful. Ayla and Brennan loved the pool but they were not too sure about the ocean. They were a little scared, so we just let them play in the sand a few times. It was so nice to get away and forget about the JRA and all of the appointments that come along with it. The kids had an awesome time, every morning when Ayla woke up, she would go to the door and say "pool". It was so cute. She is definitely a little water bug. Brennan also decided to walk while we were there. He took his first four steps which was exciting. He is only ten months old so I was shocked that he started walking so young. I guess he wants to be like his big sister!! Although it was very hard taking two babies on vacation 9 hours away, it was worth it and I already can't wait until next year.

Update August 11 2008

This month so far has not been good at all. Her ankle stays swollen and she is limping more and more everyday. Her elbow is still bothering her as well and we have recently noticed that she is not turning her neck at times so we think her neck may be getting stiff. I called the Dr. and let him know and he wants to see her before her next appointment. We are going when we get back from the beach at the end of August. I can tell that she is not feeling well and it just breaks my heart. She seems so frail and week and it just worries me at times. She does have a low hemoglobin so this may be playing a part in how she is feeling as well. She seems tired all of the time and she sleeps a lot for a child her age. It is still a battle everyday but Ayla is proving to us that she is our little warrior.

Update July 2008

This month has been okay. The good news is that her knee is doing great. Still no swelling and it is definitely not bothering her. The bad news is that her ankle and elbow are starting to swell again and they seem to be bothering her. She is limping on her ankle every now and then. She still seems to be in good spirits and is not crying all of the time like she used to. We had her blood work drawn again and the results were not good. Her sed rate is the highest it has ever been. At her Dr’s appointment he seemed surprised that there were no other joints bothering her because of her high sed rate. As of right now, we are going to increase the naproxen and not change anything else unless she starts to get worse. We are all looking forward to going on a much needed vacation next month. I can't wait to take the kids to the beach and just hang out with them by the pool. They both love the water so Im sure they will have fun. Our next Dr's appointment is in September. This is Ayla's current lab work.
sed rate 62 normal is 0-20
hemoglobin 10.3 normal is 11.2-16.0
hematocrit 31.7 normal is 33.6-48.0
platelet count 608 normal is 120-450
The sedimentation rate (sed rate) blood test measures how quickly red blood cells (erythrocytes) settle in a test tube in one hour. The more red cells that fall to the bottom of the test tube in one hour, the higher the sed rate.
When inflammation is present in the body, certain proteins cause red blood cells to stick together and fall more quickly than normal to the bottom of the tube. These proteins are produced by the liver and the immune system under many abnormal conditions, such as an infection, an autoimmune disease, or cancer

Ayla's injections June 2008

Ayla’s injections were scheduled on Friday June 6th, we drove to Columbus Thursday evening since we had to be at the hospital early Friday morning. After the night we had on Thursday, I knew getting the injections was the right thing to do. Ayla slept in the bed with John and I and she cried out in her sleep all night. She kept saying "my knee". We only got about 3 hours of sleep that night, if that. The next morning we talked to the Dr. Before the injections, and he said that he would only inject the joints that looked bad. They do the injections under ultrasound so they can see the joint and know where to inject the steroid. I held her while they were putting the medicine through her IV and she kept saying over and over "all done". Leaving her by herself while they did the injections was the hardest thing I have ever had to do and I cried like a baby after I left her. After the procedure we found out that he did have to inject all three joints. We were kind of bummed out about that because that meant that all three joints were pretty bad. Anyway, we went and bought her an elmo balloon and a big bird stuffed animal so they would be there to greet her when she woke up. The ride home went okay, she was pretty groggy all day and I just sat and played with her on the floor so she wouldn't have to walk. I tried to get her to eat but she was not interested. I finally got her to eat some chicken soup but she ended up getting sick that night. I guess I shouldn't have forced the issue.
The first couple of days she was sore but after that she amazingly stopped walking without a limp. I remember taking her everywhere saying look, look, she is not limping. We were so happy and so glad that she was feeling better. (She has always had trouble walking up and down the stairs, she would never put weight on her right leg and she would have trouble transitioning from one thing to the other. Example from the pavement to the grass or walking over a curb etc. Her little friends in the neighborhood were always running circles around her, it would always make me sad to see this.)
The swelling in her knee was gone and her ankle and elbow seemed to be doing better as well. Right now I am so excited that she is doing better and I can already see such a huge difference with her and in her personality. She is doing things now like other children her age are doing. She is running and turning around in circles and just being happy. When she started turning around in circles, I was so happy, she has been unable to do things like this until now. It puts a smile on my face to see her doing so well. We also bought her a water table and she plays in it almost every day. She loves playing in the water and it is nice seeing her have so much fun. We had a great father's day, we went out and bought flowers and pots and spent the day planting. Grandma and Grandpa Wright also came over to visit and it was a good day. We have also been able to quit physical therapy for the time being, I promised the Dr. that I would work with her at home so back to normal life for a while. It is a waiting game to see how long the injections last . Next month we will have her lab work done again to see if there are any improvements.

May update

Six weeks later we are back in Columbus and regretful to say that things are not improving. Ayla is still limping pretty bad and at her worst, she seems to be dragging her leg. Her elbow on the other hand seems to be improving. She is doing a lot better with it and it doesn't seem to be bothering her as much. After her exam, the doctor noticed that Ayla’s right ankle was swollen. Again, I felt terrible that I had not noticed her ankle. I was so concentrated on her knee, that I never thought her ankle could also be a cause of her limping. This was upsetting to hear because it seems that every time we see him, a new joint is involved. We decided to increase her naproxen dose to see if that would help. We discussed the possibility of steroid injections some time In the future if she did not improve. He gave us some literature to read on the injections and he wanted to see us back in another 8 weeks.
We were home only a couple of weeks when one morning I was getting Ayla ready to go outside and play. As soon as I put her shoe on her right foot, she started crying like she was in pain. I looked at her ankle and sure enough it was very swollen and hot to the touch. After I took her shoe off, she was okay, so I knew her ankle must have been hurting her. She was also still crying a lot like always, and still limping and sometimes dragging her leg, so after talking things over with my husband, we decided to go ahead and schedule her for injections. Of course we didn't want to put her through this but we are hoping that this will give her some relief and help her to start walking better. It has been three months and sadly, there are no signs of improvement. I just want to see her happy and not hurting. It seems like for the longest time now I can only remember her constantly crying. I know it is not her fault and as a parent, it just hurts your heart knowing that your child is in pain and that there is nothing you can do for her. I pray everyday that God will heal her and take all of her pain away. She has been through a lot these past couple of months. She does not like anyone to touch her and she knows when she goes to the Dr's. office that something is going to happen. She has had her blood drawn three times and we are getting ready for the fourth in a couple of weeks. We are due to go back in July for another eye check up. On a postive note, she has been getting in our neighbors pool lately and she loves the water. It makes me happy to see her having such a good time in the pool. She has also started talking so much, I think it is quite remarkable for her age. She is just so smart!! It has only been a few months since her diagnosis, but everything has been extremely overwhelming. I just try to take one day at a time and pray that God will give me the strength to make it through another day. I still have faith that one day the arthritis will be gone and Ayla will be a happy, healthy little girl. Until then, I will take care of her and love her the best that I can. She is my angel, and I could not imagine life without her!