Tuesday, June 21, 2011
It has been a while since my last check-in. We have very busy running to the hospital every week for Jenna's treatments. Things are getting a bit better, I say that with such hesitation as I hold my breath LOL. Jenna seems to responding well to the new protocol and we are happy that things have been "good" for the past few months. Don't get me wrong we are not out of the woods yet as the fire is at a slow burn. Her labs are still elevated and are being watched. Since the Doctor added the Cyclosporine her panniculities spots have looked a bit better. As I watch her get older I can't help but be so angry that this disease has taken her childhood from her. She has been sick for as long as she can remember. She is not the same "little girl" that was diagnosed all those years ago. She is still getting the IV Solumedrol & IVIG but is on no oral steroids!!! She was able to attend Camp Boggy Creek again this summer so that has been a total boost emotionally for her. After being on Home bound school for her 6th grade year it will be a week that is so needed for her mentally. I miss her every minute that she is gone, but I know that she is in the greatest of care at camp. I have not made a decision about seeing another Doctor yet, I am going to wait until we see where she is at the beginning of July. It is just so much to "start over" with a new Doc and having to go through all the info from the past 7 years...it is just too much. I have tried very hard to have a positive attitude through this long journey, but there have been those days that I felt like giving up. This has been a crazy roller coaster ride and when I look in my daughters eyes it is because of her that I keep going with purpose through all the dark days. I pray that there will someday be a cure for JM so that no other child has to suffer. I have grown so much not only as a Mother, but as a human being. I hope that I can be half the person that both of my girls are. I think that when a child has an illness it changes them some how. It makes them softer, it makes them notice things that so many of us take for granted. It makes them process things differently. They are gentle souls that have touched me in a way that no words can really describe. My wish for this summer is that we can continue to show some improvement and that my Jenna will be healthy enough to be back in school full-time come Aug. I will keep you all posted on her progress and how things are.