Megan has been excessively sleepy the past couple of days. Automatically I am worried because I am reading into it. She also is having watery stools that could clear a stadium - another sign of sickness looming. I hate it!!! We are leaving tomorrow to go to Uncle Jimmy's wedding in New York and I am praying that I am just being nervous. I have been packing tonight and it is unbelievable how many things I have to take for Megan. A whole pharmacy with supplies, hearing aid supplies, feeding pump, peptamin cans.....Dafos, shoes to use with them because it is cold up there - shoes to use without them.....
Packing for James and Ryan took 10 minutes each comparred to a couple of hours in Megans room. I am really exhausted and have not eaten yet today - hardly had anything to drink either. I need to try to take better care of my eating but it seems like something always gets in the way. James asthma has flared with the polyn and I could not find the heavy duty inhaler - I put it somewhere safe and boy is it safe. Had to go to the doctor for him today to get a new one but that was after we were at All Childrens for 2 hours in the audiology dept for the results of Megs latest ABR done a couple of weeks ago and to have her hearing aids reprogramed, cleaned - a tune up I guess. We also are introducing sign. I think I asked Meg in sign if she wanted to eat Mommy instead of if she wants to eat. My brain is trying hard to hold onto the signs we are starting with but sometimes I cant even call the right childs name out so this should be interesting. Poor Megan is going to say very inappropriate things someday hopefully.
New York should be beautiful - leaves changing, cool weather. We are taking the kids to a real pumpkin patch. None of them have ever been but it was always one of my favorite things to do as a kid growing up. Long Island really is pretty. Sometimes I wish we were there for the seasons and also because the climate would be better for Megan. The heat just kills her. We have to stay in so much over the summer that it gets depressing to me. Also makes the summer so much fun for me with all of the kids home!!!!!!!!!!!!!!!!!!!!!!!!!!
I am going to put Meg, James and Ryan on top of the biggest pumpkin and take their picture. I will post it when we get home.
Oh! The girl scout troop emailed me today and want to name/dedicate their spring triathalon to Megan - last year it focused on girls getting strong. How fitting!!! They said they have been following Megan for a while and the troop wants to do this. I was really touched. I of course agreed and volunteered us to go to one of their meetings so they can meet her. Pat thought it was really special too. Kids are certainly amazing.
My friends children are so compassionate towards Megan. Anna, Niko and Sabrina just love her and oogle over her. Corbin and Connor are always kissing her and coaching her on to move her legs and make all kinds of noises at them. They enjoy her. Tyler and Maggie never pass by Megan without stopping to talk to her or rub her legs or something. All of her crying does not bother them either - they dont get annoyed, they want to help her!!!! Ryan told me after her birthday he wishes he had the disease so he could take all of her hurt. I told him that I didn't because I love each of them the way they are.
Have to go now - going to eat something. Maybe everything.