December 2007 Archives

Last night I had the honor of going out with three women who two years ago I didn't even know but have since become a very important part of my life. Their friendship and understanding has helped me out in so many ways and I truly am so blessed to have been able to meet them, which without Simon would not have been possible. I often marvel at the fact that three complete strangers could come to my aid and help me to do whatever it takes to keep my family going and grounded and making it through the daily grind with all that has gone on in our family. I truly appreciate all three of them and I could never find the words, or the actions to let them know how their conversations with me and their love for my children and family have truly enhanced mine and my families everyday life. It truly is a blessing to have such good people, good friends and I am overwhelmed with joy because of them. Today our NEMO group was contacted by a family that must have just been diagnosed with NEMO. An e mail was sent to the group that had fear, anxiety in it and my heart really sank at the one line request "can someone please tell me something about nemo". It depicts the whole state of confusion you are thrown into without any knowledge or understandable terms how and why your son could have such a life threatening disease and how are you possibly going to get through it. It makes me sad for the family and for the boy who is going to have to go through the pain, time and emotion that is spent trying desperately to cure your son , for the countless hours you spend worrying about how this will affect your son, his siblings, your marriage, your finances your life and what can you immediately do about it. I so wish we could take that fear away from people and be at a point where we can just say "don't worry, it will be okay and it won't be too much to bear, we all are here and you will be fine". Truth is so little is still known about NEMO and so few of the NEMO patients have actually been transplanted and are no more that 1-3 years post transplant to really be able to reassure anyone that it will be okay, for the duration of a long, healthy life. What I do know is that every family in our circle is amazing and has undergone so much but still, and most importantly, does whatever they can to reach out to each newly diagnosed family and say we are here, we understand and let our support help you. At least we can do that. We all struggle with daily issues, but we all also reach out to doctors and research groups and other families to compare, and take notes and to try desperately to figure out our sons disease so that we too can make a huge difference in their life and the lives of others. Our sons pioneer the way to make a difference and all of us are doing our best to make that difference significant for all life sake. If you can find a way to help, please do.

Today Simon and I took an unexpected trip to the hospital because his skin is so bothersome and I was worried about infection. I was reassured it is not infected and we have switched to a stronger steroid crème to see if that gives any relief. They also prescribe adarax, like benedryl, for the itching but it really knocks Simon out and I hate to have him droopy all the time. Simon continues to be stable but his skin is out of control. Itching him and waking him every night with crazy scratching to the point he is making himself bleed. His appetite is less than it should be and I have seen his weight drop a bit. To the outsider, he appears fine, great, but the struggle to keep him nourished and resting and unannoyed from his skin plight goes on everyday. I will visit stem cell on Monday. They wanted to do another does of remicaid, I will push to wait. We will see. He had his first real play date with a friend which he enjoyed so much and after that Isabel came down with 103 fever and the boy was throwing up a few days later so I have to remind myself that all is a balance and that if we choose not to live in a bubble, which we try to do, these things happen and for Gods sake we must deal with them and try very hard not to let things go spinning out of control but to benefit from the time we share with friends and family and remain cautious but livable. Please pray for no infections and healing for Simons skin. I also ask that you pray for Samuel and Margo to get past the humps and to move forward for complete healing. God Bless and thanks for sticking with us. Love Tracy