Prayers are Healing
Things are much improved today. After only two days after the remicaid we have had only 3 stools today and the last one this evening was almost formed. Amazing really. We only wish remicaid didn't come with such a potential scary tract record. Please continue to pray he can continue on this medicine without incident or harm to him. It will be a long process before he can stop it and will come in 2, 4 and 6-8 week intervals. He is in good spirits and to the common bystander they would observe that Simon is as healthy as a horse. Someday we hope this to be true. Yesterday he decided that things were not exciting enough and while trying to nap he ripped his g-tube out of his stomach ballon that holds it in and all. I went in his room to see all the commotion only to find him sitting on the bed with it laying next to him and the hole in his stomach oozing vomitting smelling fluid. I panicked a bit, shoved it back in taped it down, called the hospital, ran to the school to pick up the girls and headed downtown. Thanks for keeping me on my toes son. Needless to say they taught me how to reinsert it if he does it again, which I am watching him to try and prevent that.
He had a blast at t-ball tonight. It is always so amazing to us and all the people who see him weekly or meet him for the first time how well he verbalizes things for a 2 1/2 year old and how his imagination is so vivid with playing and making up games for the other kids to play with him. He really is a magnet who attracts everyone to him with his explosive and dynamic personality. Its wonderful to witness.
Lastly, but not by a long shot the last piece of news I just received this evening. VNTRS......steady at 93% overall. What is most happy about these are that the t-cells are at 99% donor. That is very important in immunization building. No b cells, also important but steroids eat those up so once we get him off the steroids we hope to see them come back full force all marrianas.
We will post when immunization titers come back and we are due back down at clinic next wed. for another iv infusion for prevention of pneunomia. Until then, pray for complete healing without further harm and for his immune system to work and keep him protected now on the remicaid and that his gi system continues healing. Thank you so much for the prayers. They are healing. God Bless Love Tracy and David
He had a blast at t-ball tonight. It is always so amazing to us and all the people who see him weekly or meet him for the first time how well he verbalizes things for a 2 1/2 year old and how his imagination is so vivid with playing and making up games for the other kids to play with him. He really is a magnet who attracts everyone to him with his explosive and dynamic personality. Its wonderful to witness.
Lastly, but not by a long shot the last piece of news I just received this evening. VNTRS......steady at 93% overall. What is most happy about these are that the t-cells are at 99% donor. That is very important in immunization building. No b cells, also important but steroids eat those up so once we get him off the steroids we hope to see them come back full force all marrianas.
We will post when immunization titers come back and we are due back down at clinic next wed. for another iv infusion for prevention of pneunomia. Until then, pray for complete healing without further harm and for his immune system to work and keep him protected now on the remicaid and that his gi system continues healing. Thank you so much for the prayers. They are healing. God Bless Love Tracy and David
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