June 2008 Archives
Well its been almost 4 weeks since our second dose of remicaid. I wish I could say all things are still great but simon started to show signs of the same cycle almost a week ago. His appetitie dropped and he has had increased stool that is now liquid. He has been gagging and vomitted this morning. Its really a hard reality to know that for whatever reason his system is overproducing something that sets all of this off. We talked last week about the fact that he has not grown in height or weight at all this year and what to do about it. Because he is not retaining alot of what he takes in and hes much more active its becoming a challenge to keep up with his calories. I find myself putting more formula through his g-tube. We return monday for another dose of remicaid. Its a bit disappointing to me to be honest. I really was hoping since he seemed to respond to some degree to the immunizations he first received, and has received his second round of 2 of them, that his body would be attempting to heal this GI stuff. Noone knows what is to come with all of this and that is a hard reality.
He is registered to start pre-k 3 in the fall through early childhood so we can only hope and pray that he will be able to attend that and grow with a peer group to manage how to be around other kids more and to make some new friends. We think he will love it. At any rate I ask for prayers that the remicaid continue to improve simons gi issues to a point where he won't be so dependant on it and for a special prayer for my aunt Donna who is not well in the hospital. Please keep us all in your prayers. Thanks and God Bless. Tracy and David
He is registered to start pre-k 3 in the fall through early childhood so we can only hope and pray that he will be able to attend that and grow with a peer group to manage how to be around other kids more and to make some new friends. We think he will love it. At any rate I ask for prayers that the remicaid continue to improve simons gi issues to a point where he won't be so dependant on it and for a special prayer for my aunt Donna who is not well in the hospital. Please keep us all in your prayers. Thanks and God Bless. Tracy and David
Our little superhero. Well its been a bang to the summer here. Simon is very into the water of the hot days and its really hard now at his age to keep him out of sprinkers, pools and the like. I have a hard time watching him in the water as my fear for illness from the water is still weighted but its also hard at almost 3 to not let him be a boy. And all boy he is. We had a impromptu pool, water gun, slide splash bbq with our neighbors which was loads of fun for all the kids and adults too. Simon loved playing with the girls and a few other boys and being in a pool. We got home at 9 with baths to have and calming to engage in but managed to get all settled by 9:30. Simon and the girls had a blast. With our first week of summer underway we have had a few issues and Marriana almost broke her nose and jaw falling off a piece of playground equipment after t-ball last night but she is a trooper and ok, very bruised but handling it like the amazing child she is. So I am ready for next week to be calmer.
Simon is doing ok. He is stable with the steroids and Ihope to drop them next time we are in clinic but I'm in no hurry as he is ok. Stool is ok with the remicaid and we hope to hold off on another dose for 3 more weeks or so. I had hoped he be a bit better than he is but hes much better than he was and loving life so I'm going with it. I have to let him have fun and that is what I hope to give him. Please continue to pray that all things improve and that he is able to take in all summer has to offer and be healthy and strong.
He was evaluated for preschool and is set up for two programs of which we have to choose so I hope he will be safe and I can let go for a couple hours a day as he is ready and totally sharp to learn more. I wish everyone could meet him, he is so amazing. Please keep praying for total recovery and healing of a new immune system and gi system that works without medicine. thank you. God Bless. Tracy and David.
Simon is doing ok. He is stable with the steroids and Ihope to drop them next time we are in clinic but I'm in no hurry as he is ok. Stool is ok with the remicaid and we hope to hold off on another dose for 3 more weeks or so. I had hoped he be a bit better than he is but hes much better than he was and loving life so I'm going with it. I have to let him have fun and that is what I hope to give him. Please continue to pray that all things improve and that he is able to take in all summer has to offer and be healthy and strong.
He was evaluated for preschool and is set up for two programs of which we have to choose so I hope he will be safe and I can let go for a couple hours a day as he is ready and totally sharp to learn more. I wish everyone could meet him, he is so amazing. Please keep praying for total recovery and healing of a new immune system and gi system that works without medicine. thank you. God Bless. Tracy and David.
