Today was a good day, Katie seemed to enjoy not going anywhere and relaxing. We worked on plants and she stayed focused on the reading and BrainPop video. I haven’t figured out the best place to use her Tobii yet, the dining tables don’t have outlets near them, but I’ll work it out next week. We hung out in the lounge and watched football and had a lovely Thanksgiving meal thanks to a gentleman who was watching the game with us. His family rented the hall at the hotel there were that many! Katelin wolfed down both helpings of potato salad and Mac n cheese, but I did get some turkey, lol.
I broke down and took Katelin back to the research doctors today, her behavior is so extreme. They did say other families have reported GI upset on the med so I’m to go up on her reflux med. Tonight I noticed there IS a bruise on the top of her right foot, so I’ll be giving Tylenol.
Two new things today…during Mr. Brown Can Moo, Katie KNOCKED on the bed when it said “he can go like a hand on a door, knock, knock!” And when she was ready to get out of the shower she said, “all done, now” The “now” is new :).
I did something kind of neat, I joined a grocery home delivery service. OMG! What a convenience AND money saver. Katelin HATES the grocery store and i just couldn’t see trying to work that out. It was amazing, they brought it right to my hotel room! And Minuteman Press in Centerville sent the Thank You cards I had made up for donors. They came out fantastic.
It appears that Katelin’s laxative is working VERY VERY well on smaller doses than usual, which led to an interesting experience while our laundry was drying, but HEY, the laundry dried enough by the time she was clean that I could put her in clean clothes, then throw in the new load. Trying to find the positive in a very messy situation!
And now here I am laying next to a sleeping girl. Her peaceful rhythmic breathing a lullaby and all I can think of is a very sick little girl in Boston and how much I hate Rett Syndrome and how much there needs to be a cure. This last week has sucked overall. Katelin has screamed, and hit and thrown food all over, and I thought it was brutal, so hard to bear, exhausting. But, it’s nothing compared to a sick child and what her family is going through. And it sends home the message that what we are doing is important, and not to give up, there are people counting on us to see it through. Please keep this little girl and all the girls who are suffering in your thoughts and send out positive thoughts and prayers to the families who love them, and hope for a cure.