Sunday, September 13, 2009

Exactly what we needed:)

Yesterday was Drew's first soccer game of the season. He started off in goal. He did a great job. He is much more a defensive player then offensive. I see Daddy working with him in the goal in the near future. He will happily tell you no one scored the half he was in goal. It was pouring in the morning but the rain stopped in time for the game, thank God.

In the afternoon we went with the family and Stephanie to see Disney on Ice. My kids love anything Disney. I was a little worried about Rylee because when she's not feeling well things can go either way. They all loved it!! Watching their faces light up is priceless. Rylee kept saying "more ice" she didn't want it to end. She was clapping, laughing, sitting with all of us and in normal Rylee fashion feeding us. For 2 hours we had our girl back. I'm am beyond thrilled that we went. It made all of us so happy to see her like that, it has been a while. It was truly awesome and exactly what we needed. Drew was so excited when the cars characters came out. He loved it just as much as Rylee. Watching it through their eyes is so much fun.

Thursday, September 10, 2009

A little chat about God.

Ever since my leg was hurt everyone would ask us "how we got through it?" Now that Rylee is sick we are asked all the time if we believe in God?How do you get through everyday? Don't we hate God for doing this?

I'm going to answer to the best of my ability how we feel about God. First off I do not believe God gave this disease to Rylee. God does good things, not bad. I do believe God chose us to be her parents. For whatever reason he thought that we had enough love, faith and ability to handle this in the best way that we can. I believe that he is there for us everyday. I don't believe that we could wake up in the morning if we did not believe in him. There is a stronger power that allows us to live and get through everyday, and that is him. We love when people prayer for her. There is nothing more powerful then those prayers. Dr's, medicine, food are all important but without prayer and belief there is nothing. I'm in no way a holy roller. I just have faith and this faith, good family and friends it what keeps our heads above water.

Wednesday, September 9, 2009

Anything but this. It's time:(

I want to write about what an awesome wedding James and I were just in or, about seeing most of our friends and family or, about Drew wanting to play on the big hill.

Not here to write about that though. I'm going to give an update about Rylee and Mito. I hate that mito is progressive. I hate that it has progressed. I especially hate that there is no cure. For a while Rylee has been on a downward slope. I wasn't to worried. I know that's how this disease works. We have been through a "crash" before. After 6 weeks she started to come out of it. This time though, she is not coming out of it. While we were in NY it became quite apparent that she is not well and she is not getting better. She has not walked in 6 weeks, barley gets off my lap and now can't even eat through the tube. Her stomach has stopped moving, she is in a lot of pain. When we could get her hooked up the food was coming back out the opening in her stomach. My baby is not well:(

Yesterday I took her to ACH to have her tube re-placed. They weighed her and she has lost more weight. Dr. W said it's time, there is nothing else we can do. Time for the TPN. My heart sank. This is the one thing that I have not wanted to do. All along I thought I didn't want to do it because of all the side effects. There are lots, and none of them are good. What hit me yesterday is that more then the side effects I don't want to do it because after this there is no alternative. This is our alternative. As long as there is no TPN there is hope. What if this does not work???? The up side is she will gain weight. One of my concerns is that when they take the TPN out she would just lose the weight again. She will lose it which is why Dr. W told me the TPN won't be coming out. TPN's are not meant for long term feeds. We have no choice but to take the side effects as they come and keep her on this for as long as we can. We are sad, we are defeated, we are in love with this precious baby girl and we will do whatever we have to. We are stronger then Mito and we will fight back.

The tube they put in yesterday is not working either. Monday Rylee will be admitted to put a central line in to start TPN.

Thank you to everyone for being there for us. We are so lucky to have a great friends and family.

I'm a bit of a daredevil

About Me

I'm a Mom of two wonderful children, Andrew(4) and Rylee(1). My husband and I are originally from NY and moved to FL 6 years ago. I love it here and won't move back but this is where I live my home will always be in NY. When I die someone better fly my ass back there to bury me. I love hanging outside with the kiddos, sports, working out and taking pictures.