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.

Here we are 2 weeks post op.

The first week and a half was rough, really rough. Rylee cried almost all day and would only let me hold her. Her hands and feet were so black and blue from all the IV attempts, her back sore and both legs, poor thing was miserable. I'm happy to say that we are now pretty happy and content but she still won't get down, walk or go to many people. She is petrified of everyone. Anyone she does not know that is around her brings on a crying jag. Oh I how wish she was not so scared of people. Everyone to her is a monster. I hear Mom's say all the time to their kids that "Monsters are not real", "it was just a bad dream." Monsters are real to her, they are the entire medical field and them some. Sad, truly sad that she is this scared, heartbreaking. We have a week full of apts this week. We are taking a break from speech therapy. Rylee hates it, once again it scares her. The therapist feels at this point we are not getting anywhere because she just shuts down. We agreed to end our 2 sessions a week and re-evaluate in 6 months. I am happy with the progress that she has made in the last year though. She has gone from a 0-3 month level to a 20 month level and she is 30 months. Still behind but not nearly as severe as before. Today we had PT. The physical therapist will only being seeing her once a month. She won't let her touch her so we are limited in what we do and that is my field so we will work together to come up with an at home plan. We were given a walker for Rylee today. This brings me so much sadness. I will do whatever we need to help her and if this is what she needs I'm fine with it. I hate that I am now looking at another visible reminder that our daughter is sick. This is not going away. The trick is to get her to use it, ha should be fun. We also had neuro apt on Monday and we have started her seizure meds. James and I just could not come to a decision on what to do. We decided to start the meds see how it goes. If she does not improve very much then they will admit her into ACH and have EEG study done. It has been total craziness.

This weekend we are going to take Drew to Disney and leave Rylee with my Mom. It's really hard to leave her but Drew needs us too. This has all been so hard on him. A little Mommy and Daddy only time should be great for him. He starts School on Monday. He is so excited. How did my boy become old enough for kinder???

No matter what Life is Good and we know that so we live it to the fullest:)

I want to thank my family and friends for all their help these past two weeks. From watching Drew, cooking us dinner, taking Drew to camp for me you all are awesome. Thank you so much!!

Gone and Back, thank God!

Last Tuesday we left for GA to continue our quest of trying to completely figure out what's going on with Rylee and to figure out if there is anything we can do now for the Mito. We knew this was going to be a rough trip and it was. Wednesday was apt after apt and they did not go well. The first apt was with anesthesia which was suppose to be quick. That turned into an ordeal and a half and Rylee lost it. Rylee has a lot of issues with anesthesia and they all decided that they needed EKG's Echo's and a slew of other things. Rylee was a screaming lunatic. She hates the entire medical profession and these people and hospital were all new. This apt made us late for the next apt. Not a big deal though because the next apt she down right refused to do. I knew that she probably wouldn't do it from pictures on another persons blog that had been to Dr. Shoffner already. They put this big tube with a blanket all around you. Rylee wouldn't even let them get it down. Every time they tried Rylee would put out outstretched hands. After a few attempts and a balistic child they called it quits. Next up the wizard the wonderful wizard of OZ. Dr.Shoffner was next up. I was well prepared for his type. I had talked to Amber about her visit, Dr. Warren is no different and I worked in the medical field. He was much better then I expected and Rylee was much worse. She was pulling her hair out, my hair out, throwing things, screaming and hitting. Dr. Shoffner dealt with her great. He knew it was a long day and that this was only because she was so upset. He had to stand across the room and leave the door open and every once in a while she would give us a moment of peace. I knew that Dr. Shoffner would not be giving us many answers. He likes to run all of his test first. That means 3 more months of waiting. He said that there is definitely something else going on because her weight is so low even for mito. With the gj-tube and all the calories she gets she should weigh a lot more then 13pds 11 ounces and be longer then 28 inches at 2 and a half. We discussed the TPN and he wasn't really excited about it. He said that she would probably gain adipose tissue but not muscle and skeletal growth which is what we really need. Fat tissue would hurt her not help her. Thursday was surgery day. At first we thought we were staying over night because of the anesthesia. Last minute they decided to change how they were going to do things and that we would be able to go back to the hotel, woohoo:) Everything went well. Poor Rylee is miserable though. They had an awful time getting an IV and blood so 10 attempts later, 2 bruised and swollen feet, 2 bruised and swollen hands they were able to get one in. They could get the blood from where the IV was so they had to get it from the femoral artery on the non-surgical leg. The lumbar puncture took 2 times before they were able to get. All of this equals one sore miserable child:( It's so hard to see her like this but, I know it will pass. As everything else we are going through one day at a time. The only good thing about waiting 3 more months is we get a little break from the medical world for a bit.