Mar 17, 2013

Where we are today

Ayla has still been in medical remission since she started her Enbrel. We are coming up on almost five years with no major problems. She complains of her neck hurting every now and again and she is fatigued more than the average child but other than that we have not experienced any major problems with her Arthritis. As far as being sick is concerned, with her low immune system, she has had her fair share of illness for sure this Winter. She missed about three weeks of school with having back to back strep. We were very lucky that she did not have to go into the Hospital. She gets every virus coming and going, whether its viral, bacterial, you name it and she get's it. She recently just got over the stomach virus and she has had impetigo about three times.  She is still taking weekly injections of Enbrel and Methotrexate. We have actually been able to switch the Methotrexate by mouth so that has been helpful. We have tried the past two years to wean her off of the Methotrexate before Pre-school and then again before Kindergarten without success. Every time we get down to the lowest dose, she starts to flare. The picture below is her left knee in a flare when we tried to wean her the first time. We had to start a round of oral steroids and then increase her Methotrexate again. It has now been over a year since we last tried and everything has been going great. We go back to visit her Rheumatologist in a few weeks so I am anxious to see what she wants to do.
 Ayla is getting older now, she realizes it is not normal to get injections every week and she sometimes asks me "why" and my answer is always the same, " Because you are special and God made you this way, he knew you would be able to deal with this where as other children might not be able to as well as you." I tell her that she was born this way you know like the Lady Gaga song, "Baby I was born this way" and then we start singing and dancing!  She just smiles and is happy with that. We have also just learned recently that her "Bunny" the one she has had since she was a baby and sleeps with every night has "artheritis" I talk to her all the time about how important it is to raise awareness and participate in the Arthritis walk, the Jingle Bell Run etc so that one day we might find a cure for this disease. She sometimes says, "Now what's a cure again", lol, and then I explain it to her...again! She prays every night that her Arthritis will go away for all of the children that have it and that she will not have to wear glasses anymore, lol.  We are so  blessed, she is a God loving child and is always praying for someone or something. Thank you Jesus for this special child!!!

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