Prayers are Asked of You Today
Today I want to wish Jack a Happy 5th Birthday. We lost our dear friend Jack back in March and today he would have been 5. We know Jack continues to watch over us and to help our sons get through this process of curing our NEMO. May his family feel the love of all of us who care so much for them and want to honor Jack today. Simon is sporting his orange tank top and blue shorts and for his nap story we read finding Nemo. Charolette asked that we all wear blue and orange to honor jack and send a photo so I will do that and check out his webpage for their thoughts today. Cure4Jack.org
Simon continues to have a stomach issue. It seemed at times over the weekend he was doing better but no, as of last night he vomitted up his feeds again and has had just liquid coming from the other end. I am now on a 24 hour clear liquid diet with him and he is heading down to see Dr. Corhan our GI specialist tomorrow to discuss the possiblity of another scope. If I said I was doing okay I would not be telling the truth. I cannot even begin to explain to anyone what this feels like and come close to how it actually pains my heart everyday. I thought we had mastered this part of his problem. Only two months ago we had solid stools and our eating had picked up. Now we are back to the same place only seeming worse. As I watch his already tiny frame get smaller I wonder how to get through it all. I can't help but wonder if this has anything to do with dropping the cyclosporine levels. It is the immune suppressant. He seemed better at higher levels of it. Its sad and stinks because it is something we have to get him off of. I think the last two weeks have been emotional with school starting, me feeling a bit hard on myself for our situation and not being able to be there like I really want to for all 3 of my kids. I'm sure not getting any sleep helps the situation at all. I don't know if this is just something we have to live with or if it will get better. I talked with another NEMO mom today and she too struggles with all the emotions and daily grind of it all. The not eating and GI issues and the isolation and lack of socialization. It is so very hard to have to deal with and see no light. Simon still is your typical 2 year old with his spirit and love for life but he feels crappy and isn't resting or eating so while we are thankful for his wonderful spirit it is disheartening to be back at this same spot 280 days out of transplant number 2. I want it all to mend so we can move forward and deal with ED issues. Please tonight before you lay down to rest, please pray hard for my baby that he can heal from this virus and heal from this transplant and let his new NEMO start to kick in and work so our lives can move forward. Put your heart into it as I need to feel the love Praise be to God. Thank you. Tracy
Simon continues to have a stomach issue. It seemed at times over the weekend he was doing better but no, as of last night he vomitted up his feeds again and has had just liquid coming from the other end. I am now on a 24 hour clear liquid diet with him and he is heading down to see Dr. Corhan our GI specialist tomorrow to discuss the possiblity of another scope. If I said I was doing okay I would not be telling the truth. I cannot even begin to explain to anyone what this feels like and come close to how it actually pains my heart everyday. I thought we had mastered this part of his problem. Only two months ago we had solid stools and our eating had picked up. Now we are back to the same place only seeming worse. As I watch his already tiny frame get smaller I wonder how to get through it all. I can't help but wonder if this has anything to do with dropping the cyclosporine levels. It is the immune suppressant. He seemed better at higher levels of it. Its sad and stinks because it is something we have to get him off of. I think the last two weeks have been emotional with school starting, me feeling a bit hard on myself for our situation and not being able to be there like I really want to for all 3 of my kids. I'm sure not getting any sleep helps the situation at all. I don't know if this is just something we have to live with or if it will get better. I talked with another NEMO mom today and she too struggles with all the emotions and daily grind of it all. The not eating and GI issues and the isolation and lack of socialization. It is so very hard to have to deal with and see no light. Simon still is your typical 2 year old with his spirit and love for life but he feels crappy and isn't resting or eating so while we are thankful for his wonderful spirit it is disheartening to be back at this same spot 280 days out of transplant number 2. I want it all to mend so we can move forward and deal with ED issues. Please tonight before you lay down to rest, please pray hard for my baby that he can heal from this virus and heal from this transplant and let his new NEMO start to kick in and work so our lives can move forward. Put your heart into it as I need to feel the love Praise be to God. Thank you. Tracy
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