SMA Conference 2011 + Disney World

Last year, if you remember, we ventured out with Jonas to Santa Clara, CA for the Annual Families of SMA conference. We had a WONDERFUL time. We went some place we'd never been before, met families we've only talked to online, learned some new things, and make some great memories with Jonas.

 

 At that conference they announced that the following year the conference was going to be hosted in Orlando, FL in the Walt Disney World Resort area. I told Whit then that we were doing it!! Even if I had to drive with Jonas across country by myself, we had to do it. Another motive to get there was my brother and family. They live only a couple hours away, bonus...two trips in one!! Then of course Whit was going to have to go for work and there was no way he was going to Disney World without us...so naturally we made it work. 

I'm not one to fret and worry about most things too much. However this trip was bringing me nerves. I've never flown with a baby and a baby with special needs at that, it wasn't the best weather to be heading to (hot and humid...and they weren't kidding), packing all that was needed, but being able to put it all in the least amount of bags as possible. My biggest fear was that something would happen that wouldn't allow us to make the trip. Our luck it almost did. We were in the hospital the morning our flight left.

Thursday, Maggie was a little more cranky than normal, but not enough that had me really worried. First thing I should have recognized was when I put her g-tube extension on, it made her cry. I thought about it, but you bump Maggie in the wrong way and she is going to cry. So I chalked it up to that and went on our day. We had PT, she did great. We played and ate, all happy with minimal complaining. Then, of course, the early evening she was miss cranky. I had been checking for fevers all day just to be safe. Nothing, but then I remembered her g-tube tenderness and finally took of the dressing to check it out. 

It did not look good. It was very red all around the site, tender to touch and very hard. I don't know much, but I knew that wasn't a good thing. We caught our awesome pediatrician just before they closed the phones for the day, ran over had him check it out, and he unfortunately sent us to the ER. 

Again just our luck!!! Bad. 

Long and short of it, we stayed until 10:00 in the ER. They determined it to be an infection of some sort and gave her IV antibiotics. Was sent to the Surgical Unit, our favorite!! Whit stayed the night with Maggie, while I went home and packed in the hopes that we could still make it to our flight. I wasn't going to let us not being ready the reason we didn't make it. 

Happy Ending...we were discharged at 11:00 Friday morning. Just enough time for us to have showers/baths, pack last minute things (oh and our washer decided it was time to take a break..good thing my mom's was nice and close), and make it to our 5:00 flight!

So with a new dose of antibiotics to add to our medicine list...we headed out on a great adventure!