Nov 5, 2008

Okay this is an update to my update yesterday! While we were at the hospital waiting to get x-rays, John noticed that Ayla's left knee was swollen and hot. I know she hasn't been feeling well lately but I think I am in shock right now. I can't believe that two more joints are involved. She also tells me everyday that her fingers hurt. It makes me sick to my stomach.
As far as the x-rays go, Ayla was not having any part of it. She screamed and cried the whole time and they only got one x-ray. John told them that he was not going to force her and that was that. I don't know that x-rays are of the utmost importance right now anyway.
I called the Dr. yesterday and told her about Ayla's swollen knee and toe. I was wondering if we should increase the Naproxen dose since these two joints popped up after we decreased the naproxen dose. She assured me that decreasing the naproxen dose had nothing to do with it. She said that it was just the progression of the disease. She did not want to increase the dose, because Ayla has been getting the maxium dose for almost 8 months now. She is worried about the possibility of bleeding and the fact that her hemoglobin is so low. She wants to start Ayla on a low dose of steroid until the methotrexate starts working, and hopefully it does! Ayla will also have to take zantac with this because of the possibility of it upsetting her stomach. So we are up to five medicines now. I am beginning to wonder if this will ever stop. John and I are both really stressed out about this. We just want our daughter to feel good. She has not felt well for so long. We both cried yesterday because it just hurts so much seeing your child in pain and complaining everyday. I am sure that it affects us way more than it does her. I mean she will never remember this right? I have to get Ayla's blood work done again next week and we will go to Cincinnati in another three weeks. Please keep Ayla in your thoughts and prayers.
Ayla's current meds
Naproxen 125 mg/5ml 1 tsp 2 x day
Methotrexate .3ml 1x weekley
Folic Acid 1mg tablet 1x day
Prednisolone 15mg/5 ml 2ml 1x day
Ranitidine 15mg/ml 1.6ml 1x day
Multivitamin 1x day

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