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.

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!!!!!!!!!!!!!!

Judge Dread.

Tonight I was talking to a friend who said she had heard that everything was not "fine." She was a little upset that I told her things were fine when they were not. It is the dreaded question of "How is Rylee??" We are judged relentlessly on the answer to this question. Truth be told, I don't know what the right answer is. I sense that people don't really want the truth or don't really want a long drawn out answer. I have blogged about this before. There are times that I just don't want to get into it and there are times that people are asking out of politeness. At these times I say things are "fine" or "we take it one day at a time" because I really don't know what to say. Here's the deal, nothing is fine, nothing will ever be fine again. We hardly ever have a full day where things are great or even fine, that's the real truth. We are trying, and doing the best we can. Sometimes we are barely staying above water and others we don't tread as hard but hardly ever have a day that is truly fine. I refuse to accept this is our "new" normal and most days are not fine. There it is out in writing for everyone to see. This was not an easy post for me but this is where we are at. This does not mean we don't have fun because we do, we make the best of what we have to deal but if everyone knew the real truth about what life is like you would probably run for the hills. It's the little things that keep us going. In a way I am thankful that we understand to appreciate the small things and not take those things that people over look everyday for granted. Life is not that bad and I wish everyone could see that. Step back and enjoy what you have.

Pre-K Graduation for Drew

Wow is all I have to say. I remember sitting at gymboree with Drew when he was only 6 months old and everyone talking about being on a "list" It was insane!!! It was almost to the point where we considered moving somewhere that did not have "list" for nursery school and school choice or having to change your religion to get into places. I am proud to say we made it through both. I honestly can say we could not be happier with our decision to send Drew Temple Judea. For us, and I know there will be people to debate this, Temple Judea is by far one of the best Pre-schools here. Everyone knows our saga and in the midst of life changing events they were there for Drew in every way that he needed. I could be at a hospital 2 hours away and not worry one bit about the care he was getting there. They went above and beyond anything that I would have ever expected. If you live around or near Fort Myers I highly recommend this school. They will love your child as if they were their own, they will except your child no matter what their limitations may be, your child will be safe in more ways then you could imagine. We are sad that our time with Drew there as come to an end and pray that Rylee will be able to attend in the fall. There is NO where else that I would send her.

Janet

Late is always better then never, Jamaica.

Jamaica feels like a lifetime ago but that's where I left off and promised I would go back. First I want to start off by saying we had a great time. With that said, I will do my best to try and explain all that happened with out the intent of making it sound negative. We needed this week, we needed no Dr's, therapy and the constant reminder of our daily life. It was a wonderful week. It was so amazing and sad at the same time to see Drew so carefree and happy. At one moment during the trip I started to tear up because the realization hit me that I have not seen Drew so happy and free since Rylee was born. He was just having good old fashion fun. I ache for him to have that life everyday again. I love that he was able to have it again for a few days. There were a group of young guys that included him in their daily volleyball game. I don't think those guys realized the impact of what they were doing. I wish they knew, and thank them for allowing Drew to feel like "one of the boys" Now on to Rylee. Rylee was not having a great few weeks. She had a really rough six weeks. It was flat out awful, no sugar coating it. Our trip was at the end of the really bad stretch. She was not great but at least not at her worst. She never went in the water the entire time. However, she LOVED to feed the fish. I wish she was feeling better. I know this is going to sound crazy but until this trip I never thought that we had a child with "special needs" I know, totally crazy but I didn't. I now do, and things are forever changed. We had to get all the clearances to travel with all her supplies, not an easy task. I was pleasantly surprised when all went very smoothly. You all know that us and smooth don't usually go together so I of course am waiting for the ball to drop. It dropped and exploded the next day when her tube broke. I mean almost beyond repair. We had to call the emergency line at ACH and have them call Jamaica. Our options were very limited. We could pack it up and go home one day into our trip, take her to the Jamaican hospital or feed her with the G-tube. We opted to feed her with the G-tube. Not the smartest idea. The tube was to thick and heavy for her and she was in severe pain and started to bleed pretty bad out of the opening in her stomach. This was not going to work. Thank God we know the people there and they went out and bought us multiple types of glue. James was able to fix it well enough until we got home. We love this place and had a great time. We can not thank Lucio and Pinky enough. If I could only figure out way to let them know what it means to us to be able to get away from it all.

I needed to know and now we do.

This has been a long journey that I wish had a different outcome. Monday Rylee was diagnosed with Mitochondrial Myopathy her biopsy came back positive. Part of me is relieved that the testing and wondering is over. The other part of me is heartbroken, there is no cure. Those are hard words to swallow. We have started her on coQ10 and carnitine. There is no proof that either of these does anything. Hopefully it will slow the progression of the disease. We also learned that the non-breathing episodes are probably seizures. We have to decide if we want to go back in to do more EEG's in a sleep lab to determine if these are also happening at night time. For two years I have been holding out hope that she will start to gain weight and things will turn around and this would just be a distant memory. Those feelings got me through the day. Now I feel as if that is gone. None of this is easy. Please pray for our family. Sorry this is so short but this is all I have to give right now. I hope to come back and update more in the coming weeks. I will definitely update about Jamaica later in the week.

Spectacular Tuesday

Another Sunday and here I am. I'm pretty happy with myself that I have been sticking to my Sunday morning blogging updates. The days have been long lately. Rylee is not a happy camper. Thank God for Tuesday, she had an amazing day. We started the morning off in therapy. I decided to bring Drew with us since it's before school. They both loved it. Rylee spoke the most with Drew there then she has in the last 8 months combined. After therapy it was off to drop Drew off at school and take Rylee to Mommy and Me. We usually just barely make it through Mommy and Me but this time she was laughing like crazy, singing, cooking, painting and best of all loving it. Oh, and dare I forget that we went through therapy and class with out the beloved paci. I was one happy Mama. The entire day was filled with happiness. For a moment I forgot what all the other days are like. I needed Tuesday more then I can express. So this week, I am thankful for Tuesday. For this week we were Tuesday people.



On another high note my FIL came home. I hope and pray that they keep everything in check.



As for the rest of the week, it was not our worst but not our best either. Rylee has had 4 not breathing episodes. These are heart stopping gut wrenching moments. I fear that one day I won't be able to get her to breathe again or that it will happen in her sleep. At least James was with me 2 out of the 4 times. I'm usually alone when it happens.



I have spent a good part of the week on the phone trying to square away our travel plans. Traveling with medical equipment and liquids requires a lot of Clarence from the airlines and TSA. I have crossed all my T's and dotted all my I's. Hoping we get through security and on the plane with no problems. It would be so nice to fly once with out any issues. I always have issues because of my leg. With all the metal in there and the fact that I can't bend it takes a lot of explaining.



Swine Flue,I was mildly concerned about this as we are going on a plane. I have been told by all of our Dr's that we should still go but to take precautions. The media tends to blow things out of proportion. I wonder how many cases we have already had of the swine flu this year but didn't know it because they were not testing for it?????????



Drew's getting closer and closer to the end of Pre-K. It is crazy that he goes to K next year. He has a had pretty good week. Friday we had a play date with some friends from school and he had a blast. Yesterday was his last soccer game of the season. I'm not sure if he will play next season or not. He really wants to do baseball. I hate for him to drop out but his passion is really baseball and he is good at it. If I wait any longer to put him in it then he will fall so far behind the other kids.



Oh well, I hear "Mama" "Momeeeeeeeeee" through the monitor. Hope everyone has a great week.

Week in Review

It seems that I get here Sunday mornings to write. James is at work and the kids are still sleeping, perfect time. This will hopefully be quick because I need to get us all ready for the beach in a few. Love the beach, it's one of my happy places.

It will be no surprise to anyone when I say I could have done without this week. Rylee has not been feeling well at all. Everyday has been pretty much miserable since we went to wannado city. I love her, and feel so awful for her but at the same time it's so hard for me too. Almost everyday of just crying all day or just wanting to be held. I feel like the worst Mom. I want to be there for her but sometimes I just want to scream ENOUGH. Enough for her and enough for me. How awful of me to feel that way. Usually she has about 3 bad days then a few good and I deal much better. This time for the exception of one good day and a few various hours it has been weeks. I hope we turn the corner soon. I just want her to be able to feel good and have fun. I just want her to be two.

On Monday James Dad was taken to the hospital and ended up in the ICU. Not sure who knows what so I won't get into here but he has been pretty sick. Yesterday he finally looked better, hoping that continues. The only good thing about him getting sick is that Drew gets to see Uncle John. He does not get to see him often. On Friday John decided to stay and surprise Drew and go to shabat. Drew really needed this. Things are so hard for him and this was all about him and he knew it. John and I don't aw lays agree on things in life but I thank him for doing this.

Thursday we found out that not only is the insurance company no longer going to pay for Rylee's tube or food but they now denied her for therapy. I can't even get into how angry I am. We are appealing it so please pray for us that we will win.

Thursday night was bunco night, Thank God. Love bunco night talking, games, drinking, eating what more could I ask for. I really needed to get out and hang with the girls, thanks everyone for a great night.

I hate being Debbie the Downer but no matter where I go or what I do, I talk about Rylee. I know people are not interested and are over it. It's really hard to not talk about something that is so much a part of your life. I get that other peoples lives are filled with many other things and are tired of hearing about it. The next time someone makes a comment about our lives or not wanting to talk to us because of our situation don't make it so I can hear it, thanks. All you have to do is remove yourself from our lives, you won't be the first. Sorry to vent here but it is what it is.

Now on to happier things. I need to go so I can get ready for the beach. Love spending time with the family. I thank God everyday that my kids have a love for the beach like their Mama:)

Sweet Babies

Two post in a day, that's a lot for me. During our vacation I took pictures of the kids sleeping. Love pics of sleeping children. No matter how bad the day has been, they always look like angels at night. For the longest time Drew just slept with his hand sticking out of the blanket. Like father like son. Rylee has the plethora of pacis surrounding her, likes 3 south nurses, love you gals. Remember I'm coming to you when it's time to break this habit. The cord coming out of Rylee is her feeding tube. The best and worst thing. She knows how to get it a part and how to turn the machine off. This truly makes life really difficult. On the other hand when she does not play with it, it gives her the much needed calories.

Staycation!!

Spring Break started last Thursday and it has been non-stop since then. Thank God most of it has been fun. We did some day trips and one overnight trip. I also took Drew out of school one day to go to Wannado city, thanks Leah, Lucinda and Terra. This was their birthday present to Drew, what a great idea. It's the coolest place!! The kids have to go to work to earn money, they can be firemen, dentist, police, EMS, Vet, Publix worker, Chocolate maker and the list goes on. I decided to only stay until 2. Rylee was with us and would not have made it much longer plus we were having issues with her tube that day, again. Since it was a year pass I didn't feel the need to make the day jam packed because we will be back this summer. The best part is when they work they earn money to go to the movies, get their nails done, go on rides etc.... Lots of fun and highly suggest it:)

Thursday was the day spring break really started for us and we started the morning off at Monkey Playhouse and the afternoon at Naples visiting with Karen Devine and fam. We had a great time. The kids went swimming, on an Easter egg hunt and of course a pinata. This was also a birthday party for one of their friends. Fun was had by all.

This was also the day that we also got awful news. Our insurance company dropped Rylee's diagnosis and will no longer cover her tube stuff or food. James and I were irate, hurt, in despair, literally sick over it. We are fighting it with everything we have but it looks to be a losing battle. Please Pray that things turn around.

Friday started off with more bad news( nothing to do with Rylee) something to do with a family friend in NY. I won't write about it out of respect for them but it hit home for our family. I know that you read the blog and just want you to know that you are in our prayers and we love you. God will give you the strength to get through this.

Now on to the happy part of the day. James stayed home with Rylee to give her a break and I took Drew and his friend Hailey to captiva to see Jeannine, George and their family. I always have a great time visiting with them and miss Jeannine so much. I'm thankful that they come down here twice a year and I get to see them. The kids had so much fun playing in the water and sand.

Saturday we packed up all the bikes and headed to Ding Darling for a bike ride. Not everyone had a great time because the first 3 miles was on gravel and it was hard, not to mention the rocks flying at me of off cars, thanks Sean for trying to cover me. I had a great time, could have done with out the gravel but other then that it was a great ride. The kids were in the trailer and loved it too. Only major downside was that with the gravel the trailer bumped around a lot and the straps must have rubbed against Rylee's tube and irritated the crap out of it. The next 4 days sucked for her. I almost ran her into the ER Monday night.

Sunday was Easter!!! It was a nice relaxing day. James works on Sundays so he is never home for when the Easter Bunny comes:( The kids had so much fun getting their baskets. Rylee napped and drew and I just hung out. My parents got here around 2 and everyone else got here around 4. Every year the Easter Bunny comes back after nap and leaves eggs all around our yard. Drew and Stephanie have gone on an Easter Egg hunt every year together since they were born. It was so great to have Natalie and Rylee tagging along this year. After the hunt the Tedds had dinner here with us. All we did was BBQ. It was layed back, relaxing and fun.

Monday we had to go to Tampa to pick up some food for Rylee so we decided to go to Lowery park zoo since the passes my Mother got us would run out at the end of the month. We love this zoo, perfect for the kids. Rylee got so excited to feed the fish and goats. Drew had is normal fun of riding the camel, feeding the giraffe, goats, fish and riding the horse. My parents left to go home and Robyn and I went to the hotel with the kids for a quick nap and and dip in the really cool kids pool. I was worried about the hotel room because my kids always have their own room. It went surprisingly well.

Tuesday we were suppose to go to Busch Gardens, Robyn had bought passes for Drew and I for our birthdays. We woke up to pooring rain, thundering and lightening. Not a good day for BG's. Go figure, it has not rained in FL for months. Time for plan B, aquarium and Friendly's. We have no Friendly's around here so we took Drew to one off 75 on the way home. It all worked out fine since Rylee was miserable from her tube.

Wednesday we went Tumblin Tot's to burn off some energy. It's an indoor gymnastics place and the kids get to run around like nut balls.

Thursday was a little bit of a messed up day. We were suppose to have a playdate that got CX'd. This made for a somewhat long morning. We had to stay home because we finally hired a cleaning person. I guess I realize after two years that Roxanne is not coming back:( I have put it off long enough. I hate having a cleaning person, for whatever reason it makes me feel weird. I should be able to do it. I pride myself in the fact that I have been doing it for two years with a sick child, two bad legs, bad back and one bad hip. I know so many people who don't have half those issues and still have a cleaning person. No offense to those people they do what works best for them but I'm just happy that I did do it. Unfortunately with all of Rylee's apts and my recent leg injury it has become increasingly difficult to do the major things. The jury is still out if I will keep her or not. I don't know if I was not totally happy with her job or if it was just because she's not Roxanne. I will give her a few more trys before I figure that one out.

Friday James had Daddy time with Rylee and Drew, my Mom and I met Rhoda, Amber and Mattie at the beach. They had a great time. I love that we live so close to the beaches.

Saturday is soccer day. Drew played a great game. He just needs more confidence.

That brings us today, last day off. We are going to shell point. They have a great 2 mile walk along the water. We always see tons of dolphins and manatees. I can't wait, love going there and it has been a long time, probably close to a year.

Tomorrow back to school. Had a blast, wonder what the summer will bring.

Super Duper Trooper.

Last Monday Rylee had a muscle biopsy and a larynoscopy. We had to be there by 7:30 and surgery was delayed for a few hours. Not Good!!!! That means a few extra hours of trying to keep her happy, eek. Thankfully everyone knows us and knows how she is and trys really hard to make it as comfortable as possible. After a while of crankiness she gave up and just layed on me. I love those moments when she just lets go and is all lovey on me. Finally we were taken back and I had to hand her over. One of the hardest things a parent will have to do. Giving her to someone I don't really know trusting that they will return her to me just fine, so hard. Off to family waiting I went. I sat there just pondering how we got to where we are and wondering how we will ever get out. Rylee has been through so much and I just want a happy ending. She came out of surgery ok. We had to spend the night because she always has some sort of reaction afterwards. All in all she did well. The incision is a little bigger then I expected and she wouldn't walk the rest of the week but all in all not so bad. Now we just wait! Ha, I'm so not good at waiting, not a patient person. This will be a test for me. It amazes me how Rylee takes the punches and keeps going. She is a fighter and I admire and adore her for it.

The story of our lives!

Two weeks after Disney we had Drew's birthday party. All year long we have been hearing about how he wanted a pony at his party giving rides. The entire party was based around the damn pony and the party had to be changed do to a schedule conflict and we had to find a new Pony. I was so happy that we had one coming and not only would there be a pony but goats, ferrets and bunnies to pet too. I totally go over board for Drew's birthday because of everything else going on. This is all about him. Pony is suppose to arrive at 12:30 well 12:30 comes and goes, 1:00 comes and goes. James and I are furious and we have one very upset little boy. We are frantically calling with no answer, are you freakin kidding me!!! Finally the guy calls and he is in the hospital. They were in an accident on the way here and the driver was in the hospital and the pony is DEAD!!!! No, really this not a lie, although it did cross our minds but we requested the accident report. This is just how our life rolls. If it's crazy and nuts it happens to us. Oh well it adds color to our life. After a few meltdowns and "I hate my birhtday party" moments all was fine. I felt awful for Drew though. I just wanted him to have this for him and it be perfect.

ACH, Disney, My Baby is 5, ACH.

As you can tell by the title I am lumping a lot together. Before I get into the medical Jargon, MY BABY IS 5!!!!!!!! Oh my!! Birthdays are always a big deal in my family but this years birthdays were especially big. With everything that has happened we really try to make Drew's birthday extra special. One of his favorite places in the whole world is Disney. This boy has a love for Mickey. We left Thursday and stayed until his birthday on Monday. On Friday we went to Blizzard Beach it was a free promotional thing and we figured we would use it since we have never been, both kids including us loved it, great for kids. The entire weekend was about Drew and what he wanted to do. We all had a blast. Monday on his birthday he got a birthday pin and giftcard for 63 dollars from Disney. Drew was in heaven. The boy loved to pick out whatever he wanted. Thank you Disney for doing the birthday promotion you literally made my sons day. This trip marked the end of our endless trips to Disney. One, we( the adults) are a little bored with it and two, Drew starts school next year, so we can't just take him out whenever. It was a wonderful weekend, so happy we went. When we got home we celebrated with just us. A little different from the norm but most of the fam was with us in Disney and we were all tired. Wednesday I made cupcakes for school, yum. Next weekend will be his birthday party. I was going to do a carnival theme party but the organization of it with everything else going on has somewhat gone out the window. I figure the kids won't really notice and there will still be pony rides, animals to pet, face painting, tatoos, popcorn machine, pinata ect.... enough to keep everyone happy.

On to the ACH portion of this post. After much discussion and many things that are happening with Rylee we are going to go forth with the muscle biopsy. I met with the surgeon on Tuesday and loved her. Most know how picky I am about Dr's, it is really hard to please me. I really was comfortable with her though. She will have it done on 3/23 so please pray for her and our family.

Janet

Choclolate!!!

Ok, so most everyone who lives in FL knows this, but my family and friends in NY don't. Rylee LOVES to walk around with food. We know that she can't eat it but she will hold onto food all day. The food of choice lately always seem to be something with chocolate in it. Most everyday I have chocolate on my face or clothes compliments of my daughter who thinks it's hilarious to decorate me. So if you pass me and I have food on me, now you know why. Of course, Drew only fuels this by finding more chocolate to give her because once again it's funny.

TWO!!!!

Ok, so not going to promise more post or apologize for not posting. Sometimes I find it easy to come here and others find it really hard to write. So, I will be here when I can and disappear when I want to. I guess that's the perks of it being my blog. I really wish I would write more, we will see.

I can not believe Rylee is two but on Feb 5th she was. A day of mixed emotions for me. Oh, how I am so grateful that she is two and she is here. Of course you can sense the big "BUT." I can't help but be a little sad and cheated. I feel like we have missed out on so many things. Nothing has gone as it should, and we will never get those days back. On the other hand, she is TWO!!! I posted a status update on facebook a day before her birthday that I was sad. Of course I got all the replies of "just be happy that she is here." God help me I am beyond grateful, but in all this craziness It is only natural for our family to be sad. I don't express many of those moments so when I do I need to be able to just have them. It in no way means I take for granted that she was here for her second birthday. I was so sad that my beautiful baby girl could not eat her cake. This child loves food. I want to sing happy birthday cut her a piece and happily clean up the mess. As you all know this would not happen. I am sad that two years later we are in no better a situation then we were when she was first taken to ACH at 5 weeks old. I'm just plane sad that my child does not know a life with out Dr's, therapy, hospital stays and tubes being put in and out of her, that she spends about 18 hours a say hooked up to a pole. For that moment I just needed to be able to feel the way I did.

Now I will tell you how great her birthday was. It was quiet and small and perfect. Her brother opened her presents because she could care less and we did have cupcakes and she did awesome with it. She was of course a little upset but on a whole not bad at all. We had a party for her that Saturday. I will not write about all the medical drama that was going on I will save that for hopefully another post. Due to everything happening we were not sure how she would do. All in all she did really well. We could not put her down the entire day but that was ok because she was happy. We were happy to be holding her. For the situation we could not have asked for a better day. Thank you to all of you who were here to help us celebrate. Hopefully this year will bring many happy moments but we will also allow the sad ones.

Janet

Reflecting

Ok, so I know I owe updates but for whatever reason I just have not been able to come here and write. I will give a brief update as to what happened to us the at the beginning of the New Year, then I will hopefully come back to do all the post I wanted to but never did. This post will mostly be about this past year.

New Year's eve Rylee's pump started to beep saying "No Flow" now this happens and usually there is a kink some where, we could find none. James and I just kept playing with it trying to get it to work, it was a no go. We had to turn the pump off, that means no food. The next night we looked at everything and all looked fine so we hooked her up and left the room. Once again "No FLow" now are stumped. It looked as if there was a leak so we switched the tube, still not any better. I was so upset because this means she is getting nothing. For the first time I called the emergency line, never do this not even when she stops breathing. We were told to that basically she would need to have the tube done again. We tried a few things at home to help but nothing worked. Tuesday we had to take her back in to get another removal replacement. She went 5 days with almost no food. You know what that means, weight loss:( All seems ok for now, still having a few issues with it and I hope we get those figured out.

Ok, on to the real reason for this post. We have been sent many " wishing you a better 2009 messages" Now I appreciate these wishes and know they come from the best of intentions and I also hope we have a better year. Here is the thing though somewhere in all this craziness people forget the good times. 2008 had good times for us too. I have learned that you need to make lemonade out of lemons. There is no denying that we have it rough,to be honest I think I have had it rough since I was 16( most of you know the history.)Life is what you make of it. I can sit here and decide to crawl up in a ball or I can say "ok this is our lives and it sucks but that does not mean we can't have good times." Sink or swim is my motto and for as long as I live I will choose to swim as hard as I can no matter how tough the current can get. I want the happy memories too. The only way to have those is to make them. I love when people call me to complain about their lives and somewhere in the conversation I always here " your the last person I should complain too" No, call me I am here for you. I rarely listen to people and think their problem is not just as big as mine. At that moment in their life it is the worst thing that they can imagine. Call me, it takes my mind off of our lives. I wish so many things for 2009 and I know not all of them will happen but I will be thankful for what ever we are given. This year will start off much as the same as last year but I promise you for all the bad there will be good. We are blessed in so many ways I want to remember those times. So, thank you for the wishes, I just don't want to lose sight that our family laughs as well as cry's.