cathcing everyone up:)

Wow, lots going on but only going to do a quick update. Disney started off with a morning trip the doc in a box for Drew. He also had an E-infection. A little late but never the less we hit the road. We were so excited to get away for a bit, we needed a break. The first day was ok but then we found out my FIL was in the hospital in renal failure. We toyed with idea of heading back but after talking about it, we thought for Drew we needed to all stay and there was not much we could do anyway. After a week and a half in the hospital he is home and doing much better. It was a crazy 2 weeks. Rylee did well the first day and that was it, she was pretty miserable. The food they had her on was not doing well with her system. Yet again we had to switch her. We saw neuro on that Friday and we were told to see Gastro again and then they would talk. Her weight is up a little and that's great. Since the conversion she has gained and hopefully with the right food she will continue. I know she is no where on the charts but I will be happy if she at least follows her own curve. Basically at this point we have to decide how much further we want to take this. Lot's for James and I to talk about. I'm a need to know person. We are busy getting ready for the holidays in between all the hospital visits, Dr's, therapy etc... I really want to get into the x-mas spirit it's just not always easy. As a kid I loved the time leading up to x-mas, now, It's after when I have time to sit and relax and enjoy it.

I know this is brief and I'm leaving large chunks of what's going on out but this is all I can write now.

Janet

Plans are a thing of the past. I have come to terms with this.

Ok, so I am very thankful that Thanksgiving went so well, and that's where it ended. When Rylee has surgery that reacquires a tube down her nose for whatever reason you can almost guarantee a runny nose and cough that has been known to turn into pneumonia. Saturday morning when she woke up I just knew that once again we were going to go down this road. Of course this is also the day I'm having a holiday open house for Mary Kay. I quickly call her peds office and they call in a script for albuterol and we start nebulizer treatments. Can this girl catch a break????? NO!!!! We have been having problems with her port site for quite some time now but Monday night was awful. I went to the gym for the first time in forever and when I got home James told me she had been screaming the entire time. She cried from 6:30 at night to 8am the next morning. Now, I think it's the tube because she is trying to pull at it and just plane miserable with it. I call the peds office again to see if they can order a KUB but got no phone call back(that will not happen again, Dr Jones and I had words about it.) I then called Dr. W up in St.Pete they called the order into health park and off we went. The KUB came back fine but she was still miserable and holding her site area. We were told to either get into the ped right away or we would have to go up there to be admitted for test. I called the peds office back and demanded to be seen. We were seen at 6:45 at night and did not get out until 9:30. Turns out she had a raging ear infection. Dr. Jones told us she won the prize for the worst one he has seen. Poor thing was pulling at her tube because she was in so much pain. Well pulling at it irritated it so badly that until today she would not let us get to it to feed her, not good. We are loading her up on calories now. Of course this week is busy for us. I hardly ever make plans in advance anymore. It's just to hard with Rylee. Well Monday I had two facials to give, Wednesday an open house and conference, Thursday James and were so suppose to have us time and go to a Jason Mraz concert in Tampa and pick up my new bike, so excited. Well, it's Thursday and I'm home while James is in Tampa. It was going to be hard to leave Rylee sick and my Mom ended up with an eye infection. I'm a little bummed but I totally never get my hopes up to do stuff anymore, it's just the way our life is now. I'm happy that James got to go with my Dad and thrilled that they will pick the bike up tomorrow. I may actually be able to ride a bike with Drew tomorrow. I have dreamed about this day.

Sunday we are suppose to leave for Disney so keep your fingers crossed for us. We are looking forward to 5 days of no Dr's or therapy, just enjoying the "happiest place on earth" Our week will end at the Neurologist office on our way home in St. Pete. Please wish us well, this is a very important apt. Hope everyone has a great and happy week. I will try and update from Disney but no promises.

Enjoy the holiday season. I don't mean go out and give 10,000 gifts but to enjoy the decorating, music, festivities, family, make memories because that's the best gift of all.

Janet