Sunday, February 28, 2010
Today Megan went back in to the hyperbaric chamber with Pat for the first time in a long time. She was pretty smiley after it for a while and now she is sleeping - well - like a baby!!! It was the prettiest day here today. Sunny, cool and breezy. This time of the year through April is really nice. May it is already too hot for me. Unless of course I am at the beach and then bring it on - I can always jump in the water. We had a weekend of family time. Just Pat, myself, the boys and Megan. We went shopping yesterday afternoon for a few hours and then went to dinner together at Buca. Megan did good. She did decide to blow through her diaper 3/4 of the way through dinner which meant I was also wet...I have had worse things happen and it is nothing that James or Ryan have not done to me. Megan just does it still and much more frequently than they did. Still on the ketogenic diet. Seizures are up and down. The mucous and secretions are still very problematic and keeping the colonized bacteria at bay is tough. It is ready to jump on her at any moment. Doing nebs every 4 hours all day and night and doing Tobi nebs 2x day - 1 week on and 1 week off. We were ready to start capping her trach in preparation for a sleep study for decannulation prep but had to halt all of that until we can control this stuff. A vicious cycle. The cold and flu season really needs to end. That will help a bunch I am sure. I am really hoping that in April we can be done with this trach. April 1st will be one year she has it. Feb 19th was a year ago that she was intubated and the last time I heard her little voice. I really miss it. Watching videos of her with a voice really gets me. Have some paperwork to do as always once everyone is asleep. Have to fill out some admissions paperwork for James for high school next year. Tough choices. He wants to go to Tampa Catholic which is private. He tested and was accepted, but tuition is expensive and with Megan's needs it is really scary to assume that debt. What if we cant afford it or have to have him change schools? That would be worse. I want him to have the best high school experience he can. I did not really and wish I would have taken more from it when I could. Regret......His other choices are Tampa Bay Tech Architectural Program and King KAPS Program. Have to wait and hear from these two which are both public and free. He is also going to be going into braces very soon. Ryan got fitted for upper and lower retainers just a few days ago. Think I better go and fertilize the money tree growing in the backyard!!!!