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.

First Road trip of the summer season was to SC.

I love me some travel:) Last year on the way back from our NY road trip we stopped at my Aunt and Uncles. Drew has been asking to go back ever since. We left on a Sunday and stayed until Thursday and then headed to Seaworld. We had a great time visititing, wine, ice cream, butterflies, beach, horse riding, Sue and Pauls( they are the sweetest people and their house is heaven to me,) golf cart rides, corvette rides and just plain ol hanging out. Uncle Frank is happy to have his TV back:) He's not much for Noggin or sprouts. He is more of the fall asleep in the chair with the remote type guy. Don't you dare try and touch the remote while he is sleeping. He is so much my grandfather it's scary, love him. A good time was had by all. Thursday we headed to Seaworld. Rylee loves fish, dolphins and whales. Perfect place for her and Drew had not been in a while. Both kids were happy as clams. In the words of Rylee " I want more" "I wanna go back see dolpin" It's fun seeing her show interest in something. Drew was so happy that his friend Bryce who had been at Disney met us for the day. I love that we are doing more this summer. After our road trip last year Rylee ended up in the hospital for the rest of the summer, not fun. I feel like we are doing so much lately, it has been so long since we have done all these things. As soon as I think we are adjusting Rylee has a few bad days. It is so hard for her to keep up. I'm working on my balancing skills. Fun with down time for her:)

The best news of the trip was Dr. Shoffners office called while we were away. We were not sure if he was going to see her since all he does is diagnose and she has been already. He agreed to see us because the report is requesting more tissue. We leave the first week of August.

WOW!!!

The last blog update caused a little bit of an uproar. Let me start by saying that I don't write anything that is geared towards people who I know read this so please don't take offense. This blog sometimes is a way for me to vent and let it all out. By the time you read this, I'm usually over what I wrote about. I don't mind people asking me about Rylee, please do. I have no idea what the response will be but, whatever it is that's where I'm at that day so don't hold it against me:) Are you happy Mom???????

On to other stuff. It has been such a fun summer so far. We have spent time with our friends who we don't get to see as much during the school year. Drew is loving just hanging out everyday. It is a little rough for Rylee. She needs a lot of sleep but we are doing the best we can and so far not so bad. Tuesday Rylee had an apt with Dr. W. She lost a little bit of weight:( and her site need to be cauterized, yuck. The great debate of putting a TPN in is full force. I'm so torn about this:( Time will tell as to what we do. This will be one of the hardest decisions we will have to make to date. Drew got to stay at my parents while we went to the Dr's. He loves playing golf in Papa's golf course and playing ball on Papa's ball field. So nice for him to get to do what he wants and be the hot shot. This lead into 4th of July weekend. Our friends texted us about going to see fireworks at miromar last minute and I decided to pack the kids and go. I knew this would be difficult with Rylee and the tube but James and I made it work and Drew had a blast with Jason. Thanks Leah for the invite. I know we can't always go to things but are thankful for the invites. My fav was Lucinda's rocking head piece. On the 4th we went to the Sanibel for a bike ride then on the beach for a few hours. When we got home it was a quick swim in the pool, BBQ and packing. Today we left for Hilton Head to see my Aunt and Uncle. We made it here safe and sound and are looking forward to spend a few days with them. Drew has already hit Uncle Frank up for a golf cart ride.

My FIL in back in the hossy wishing him well and hope that sometime in the near future he can finally get better:) and my MIL can get some much deserved peace!!!!!!!!!!!!!!