July 2008 Archives
Its been a topsy turvy week. Not so much because of Simon but he does seem to have some skin issues errupting. We stopped the steroids completely over a week ago and slowly bumps are appearing. I am wondering if the heat has anything to do with it but around his g-tube site it is dry, scaling and red with irritation. He is itching it alot. His stooling seems to go up and down with normal to watery for no apparent reason. I try to pinpoint something he ate that he usually doesn't but his diet doesn't change too much so it keeps me baffled. It is a major project to get decent calories in him daily and with the strong will of an almost 3 year old, some days I surrender to his will and live with the 700 calories he will take including tube feeds. We still have two weeks off before returning for pentamadine and will see how the stooling is at that point. We are hoping to keep him off another dose of remicaid for weeks beyond that.
We celebrated our daughters 6th birthday with a luau party with 18 girls and lots of grass skirts, leis, water limbo and lots of cupcakes. Simon was right in the midst of all the girls. I was even on radio disney the morning of their birthday doing a shout out to them from me and Dave which was really kinda fun. We have let simon venture into pool/hose water more and have been bathing him in tap water. I'm not sure if that is contributing to his skin or not. We do meet with the dermatologist next week to see what he thinks. We are moving along, enjoying the summer and hoping to spend some good quality time together all through august at various activities and fun outings.
I want to say too that I lost a very special person in my life on Saturday. My aunt who has been battling for the last 4 weeks left peacefully on saturday. She has been like a mom to me since I lost my mom 13 years ago and we are very sad to have her gone. Her presence will be strongly missed. I have lost 3 aunts total now in the last 2+ months and that leaves us now with no aunts in our family. If you can just say a peaceful prayer for them all to be up in heaven, reunited, sipping wine and laughing. I know my mom and aunt were close sisters and laughed to the point noone could understand them and we all would have a hard time figuring out what the joke was but laughed too because their laugh infected us. Remember your loved ones and how much they mean to you. If they are here let them know you care. I was lucky to spend hours with my aunt before she went into a drug comotose and able to sing to her and tell her how much she was loved but we all don't get that special moment. God Bless you all, keep praying, keep praying.
We celebrated our daughters 6th birthday with a luau party with 18 girls and lots of grass skirts, leis, water limbo and lots of cupcakes. Simon was right in the midst of all the girls. I was even on radio disney the morning of their birthday doing a shout out to them from me and Dave which was really kinda fun. We have let simon venture into pool/hose water more and have been bathing him in tap water. I'm not sure if that is contributing to his skin or not. We do meet with the dermatologist next week to see what he thinks. We are moving along, enjoying the summer and hoping to spend some good quality time together all through august at various activities and fun outings.
I want to say too that I lost a very special person in my life on Saturday. My aunt who has been battling for the last 4 weeks left peacefully on saturday. She has been like a mom to me since I lost my mom 13 years ago and we are very sad to have her gone. Her presence will be strongly missed. I have lost 3 aunts total now in the last 2+ months and that leaves us now with no aunts in our family. If you can just say a peaceful prayer for them all to be up in heaven, reunited, sipping wine and laughing. I know my mom and aunt were close sisters and laughed to the point noone could understand them and we all would have a hard time figuring out what the joke was but laughed too because their laugh infected us. Remember your loved ones and how much they mean to you. If they are here let them know you care. I was lucky to spend hours with my aunt before she went into a drug comotose and able to sing to her and tell her how much she was loved but we all don't get that special moment. God Bless you all, keep praying, keep praying.
