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February 1, 2003
2/1/04
Relief at last! It looks like our insurance woes are pretty muched taken care of. I hope I haven't spoken too soon.
Mic-key button
Sean had his g-tube taken out Monday and his mic-key button inserted. The skin around it healed and things look really good. We all love it and makes life more comfortable for Sean. He is happeir and not in soo much pain. He was upset about not having a g-tube, but is really happy with the button and all the freedom he has with it.
His feedings at night are up at 42ml per hour. He isn't having too many problems with reflux, but we could be fooled. We hope to get to 50 so we can do a bolus feed during the day. A bolus feed is a 12hr feed done in 3hrs. We shall see.
We were told Sean would fatten up right away, but has only gained 3lbs. I knew he wouldn't, but what do I know??! I am just a mom who knows Sean better than they do.. He was taking four cans of supplement a day and he didn't gain weight. Just maintained it. So he just gets 2 cans as his night feeding. How is he going to get fat on less??!?!
We see Sean's Pediatrician this Thursday and I have a million questions about the feedings, behaviors and school. I hope I can have a decent conversation without Sean trying to control the conversation with his behavior or his brothers fighting with each other or over books. I might have DH parents watch Daniel and Peter for me.
I have a hard time when people compliment me about taking care of Sean and his brothers. I have been referred to as a hero. I just don't see myself as that and feel really embarrassed about all the attention. I am just doing my job to my boys. I could never neglect any of them for any reason. Sean has special needs and needs me to fight for him and take care of him. I fight for each of my boys and take care of them in whatever and however they require. It is just the way I do things. My husband is the same way. We do it because the other way isn't an option. I don't do this for recognition or honor. I do this because I chose to be a parent and do my best at at meeting their needs. I just can not accept praise for doing my duty.. I love my duty as a mother. I love my boys and have a special bond with each of them. it isn't easy, but worth it.
The boys don't have school tomorrow and every Monday this month. I want to get a head start planning what to do. Can't go into too many crowds yet with Sean,but we have this beautiful garden nearby the boys love to visit and feed the fish and ducks. We haven't been in awhile, so it is time to go one Monday this month.
Have a wonderful week!
Don't forget to hug your children and let them know you love them very much and how important they are to you.
Shelly and Sean
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