Heart in the clouds

I just downloaded this layout and although it does not look perfect, the name of the layout is Heart in The Clouds, PERFECT!!!

Displaced

Displaced is what I feel coming back here. I left here to go to caringbridge because I felt I was dishonoring Drew by writing most of my blog post about Rylee. Now, Caringbridge is not the right place either. None of this feels right. A lot of what I write will about the journey of life into death and what I'm going through but I will also write about Drew and what our family is up to. Thank you for following us and for all your support and prayers, they are what keeps us going each day.

One foot, in front of the other.

Not sure how much I have to give, not sure this will make any sense but here's what I have. We ended up in the hospital longer then we thought. Our 3 day stay turned into 7 and half days, yes, I count that half day, and so would you if you lived through it. Most everyone knows how Rylee loathes the hospital and Dr's. We spend many hours walking the halls, I mean MANY!! Everyone knows us. The TPN is in and as of right now we are trying to regulate her levels. So far her weight has not really changed, still not walking and she is just plain miserable. I miss her smile, laughter, spark, I ache for it. I fear that I will never see it again. The other night I found myself going through pictures trying to remember the last time I saw it. I can't even remember anymore. I cringe everyday that she cries in pain "mama owie mama hurt" One foot, in front of the other, that's all I can think about. She spends 20 hours a day hooked to a machine and 6 of those hours she is hooked to two machines. She has a tube out of her chest and stomach. Right now it's all a lot of work. Taking care of this is so much different then the GJ-tube. I know that we will settle into a routine, and soon it will feel like it's nothing but, right now we are not there yet, one foot, in front of the other.

Thank you to everyone who has been there for us:) We have gained many friends, we have lost some who we thought we were very close to us. It's amazing how many people change in your darkest hour. Those who should be there are no where to be found(if your are reading this it's probably not you so don't be hurt by this.) Thank you to our friends who have been putting food on our table every night since we have been home, for picking Drew up for school and asking for playdates with him. You all have made our lives so much easier. Thank you for just doing it because we all know how bad I am at asking for help. Thank you to the 3 south nurses, you are amazing. Love that we have had the same nurses for 2 years. Thank you to our amazing Dr's who have not given up.

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.

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.

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.

It's a kindergarten world.

Drew started kindergarten this past Monday. How has five years gone by so fast?? He loves it!! I did not shed a tear. How could I cry when he was so happy. That does not bring tears to my eyes it bring smiles to my face and heart. His teacher seems really nice and we all like her a lot. I hope the rest of the year goes as great as the first week. I only hope they improve parent pick line, it's insane. We are thinking about the bus but it does not really help us out. Our major issue is Rylee's schedule. If she were a healthy normal child I would just suck it up. We will decide in the next few weeks what we will do. If the bus stop was at our entrance and not the first, all would be fine. Since it's at the first, I would still have to take Rylee with me. The bus also gets here way to late to get her down for her nap. We have a few friends who have offered to pick Drew up for us. I will see how this week goes and make a decision when we get back from NY. All in all a wonderful start to a new school year.