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.

cathcing everyone up:)

Wow, lots going on but only going to do a quick update. Disney started off with a morning trip the doc in a box for Drew. He also had an E-infection. A little late but never the less we hit the road. We were so excited to get away for a bit, we needed a break. The first day was ok but then we found out my FIL was in the hospital in renal failure. We toyed with idea of heading back but after talking about it, we thought for Drew we needed to all stay and there was not much we could do anyway. After a week and a half in the hospital he is home and doing much better. It was a crazy 2 weeks. Rylee did well the first day and that was it, she was pretty miserable. The food they had her on was not doing well with her system. Yet again we had to switch her. We saw neuro on that Friday and we were told to see Gastro again and then they would talk. Her weight is up a little and that's great. Since the conversion she has gained and hopefully with the right food she will continue. I know she is no where on the charts but I will be happy if she at least follows her own curve. Basically at this point we have to decide how much further we want to take this. Lot's for James and I to talk about. I'm a need to know person. We are busy getting ready for the holidays in between all the hospital visits, Dr's, therapy etc... I really want to get into the x-mas spirit it's just not always easy. As a kid I loved the time leading up to x-mas, now, It's after when I have time to sit and relax and enjoy it.

I know this is brief and I'm leaving large chunks of what's going on out but this is all I can write now.

Janet

Plans are a thing of the past. I have come to terms with this.

Ok, so I am very thankful that Thanksgiving went so well, and that's where it ended. When Rylee has surgery that reacquires a tube down her nose for whatever reason you can almost guarantee a runny nose and cough that has been known to turn into pneumonia. Saturday morning when she woke up I just knew that once again we were going to go down this road. Of course this is also the day I'm having a holiday open house for Mary Kay. I quickly call her peds office and they call in a script for albuterol and we start nebulizer treatments. Can this girl catch a break????? NO!!!! We have been having problems with her port site for quite some time now but Monday night was awful. I went to the gym for the first time in forever and when I got home James told me she had been screaming the entire time. She cried from 6:30 at night to 8am the next morning. Now, I think it's the tube because she is trying to pull at it and just plane miserable with it. I call the peds office again to see if they can order a KUB but got no phone call back(that will not happen again, Dr Jones and I had words about it.) I then called Dr. W up in St.Pete they called the order into health park and off we went. The KUB came back fine but she was still miserable and holding her site area. We were told to either get into the ped right away or we would have to go up there to be admitted for test. I called the peds office back and demanded to be seen. We were seen at 6:45 at night and did not get out until 9:30. Turns out she had a raging ear infection. Dr. Jones told us she won the prize for the worst one he has seen. Poor thing was pulling at her tube because she was in so much pain. Well pulling at it irritated it so badly that until today she would not let us get to it to feed her, not good. We are loading her up on calories now. Of course this week is busy for us. I hardly ever make plans in advance anymore. It's just to hard with Rylee. Well Monday I had two facials to give, Wednesday an open house and conference, Thursday James and were so suppose to have us time and go to a Jason Mraz concert in Tampa and pick up my new bike, so excited. Well, it's Thursday and I'm home while James is in Tampa. It was going to be hard to leave Rylee sick and my Mom ended up with an eye infection. I'm a little bummed but I totally never get my hopes up to do stuff anymore, it's just the way our life is now. I'm happy that James got to go with my Dad and thrilled that they will pick the bike up tomorrow. I may actually be able to ride a bike with Drew tomorrow. I have dreamed about this day.

Sunday we are suppose to leave for Disney so keep your fingers crossed for us. We are looking forward to 5 days of no Dr's or therapy, just enjoying the "happiest place on earth" Our week will end at the Neurologist office on our way home in St. Pete. Please wish us well, this is a very important apt. Hope everyone has a great and happy week. I will try and update from Disney but no promises.

Enjoy the holiday season. I don't mean go out and give 10,000 gifts but to enjoy the decorating, music, festivities, family, make memories because that's the best gift of all.

Janet

Thanksgiving:)

Ok, so it's really hard to put this day into words. Thanksgiving means more to us now then it has in the past. I know it shouldn't, and we should never have taken anything for granted but lets face it, we all do, I still do. I wanted to spend this day with family. I wanted everyone to sit and watch my kids play, yes kids. Not just one but 2, our beautiful, loving, full of energy son and our strong willed pint size 21 month old who is here. She, is here:) It has been a long hard road but on this day we were just us hanging out loving life. We were so lucky to have had my Aunt and Uncle come into town. Drew was beyond stoked that they were coming, very cute. I really wanted this day to be upbeat but while we were all siting to eat, it dawned on me that she may never have a Holiday meal with us. How awful for her to have to watch us and never be able to eat with us. I can't fathom that. I don't want her to have to live that way. I tried not to think about it but it was with me the rest of the night. I also realized I can't change it so I needed to be thankful for their, laughter, smiles, tears, tantrums, attitudes. You see most people complain about the bad days. Don't get me wrong, I do to but I also remind myself that all of it makes my children who they are and they are pretty special people. Love your family, hug them a little more, kiss them more, tell them you love them more. Don't take the small things for granted because no one knows what tomorrow will bring. The day did not go as I planed in a few different ways but we were all here together and that's all that matters. I love my family and was so happy to spend the day with them even if Drew spent the entire day in his PJ's. Like father like son:)

Thank you to everyone who stopped by to see us. No words were needed but we know why you were here. For all the people that called, thank you. I'm sorry we did not answer the phone but we decided that we didn't want to waste the day talking on the phone and not being present with our family. Your thoughts, prayers and love were much appreciated.

Keeping you up to date:) Or at least I'm trying to.

Friday went well but Rylee is miserable. I know this will pass but for now it's no fun. I'm so tired of her always feeling like crap. James and I were talking about it this weekend and what's the worst part for us is that we feel like she probably has never had a day where she feels great. How awful that at 21 months old she has never not been sick. Please don't take things for granted especially this time of year. Cherish what you have, we do, and look what our lives are like. She now has a GJ tube with a tube going to her stomach to vent her when she starts to vomit. We talked about the whole swallowing issue. The thought is that it's a mitochondrial disease. We will know more when we see the neurologist. I guess if it was something simple or a gastro issue she would get better not worse. It usually becomes a neuro issue when there are signs and symptoms that worsen as they are in her case. She will most likely have to have a muscle biopsy, NOT FUN!!!!! I really don't want to have to do this, it is painful!! So this is where we are at. She probably won't be able to ever eat by mouth, not sure how I feel about this yet besides crushed. Drew went with us this time and he was so happy. It was comforting for him to be with us.

While we were away my Mom cleaned our house from top to bottom, THANK YOU!!! We lost
the best cleaning person/friend ever just about 2 years ago and have not been able to find anyone we are comfortable with since. We finally hired someone because there is no way I can do everything with 2 bad legs and she canceled, we miss Roxanne.

Have a great week everyone,
Janet

All over the place.

This post will be a little bit about everything.

So Sunday Mom moved in with us for a bit. This is hard for me. I love my Mom, love that she is here to help but I hate that kind of help. It's not a personal thing at all. If my Mom just moved in for no reason I would be fine. The deal is she moved in because once again my life is turned upside down due to my leg or should I say both of my legs. You don't go through what I go through with my leg with out any emotional scarring. Don't get me wrong, I have a GREAT life but this event in my life changed me. For the most part it changed me for the good but it also left it's negative mark. I don't want to need people. I needed people for so long. When I can't walk, drive, be independent it brings me back to a place that I don't want to go. I hope to be driving in the next few days. With all of this said I do appreciate what everyone has done. So James thanks for loving me through everything, Mom for giving up your life to help with mine. I love you and appreciate everything you do for us. Sean and Dad for just being there. Andy and Sean for dealing with cars. Andy you have no idea how hard it was to call you and ask for help, thanks. To everyone who offers to help and I say "no we are ok" thanks for the offer. Sometimes the offer means more then the action of doing something. I will know in the next few weeks what will happen with my leg.

Outside of that stuff it has been a pretty good week. We spent the entire week at home. No Tampa for us this week. It was a welcome break for all. I got to chaperone Drew's class trip. He was so excited. He had one the week before and I had to cancel on him to be with Rylee. Rylee was ok this week as long as I held her, she was not feeling to well. We spent Saturday morning with the Andersen's and then went to Jason's party. Rylee was having a much better day and had fun most of the day. She even let my MIL hold her briefly. Both kids had a great day. I was going to go out to dinner with Robyn and her Dad and James was going to put the kids to bed but Drew was not to thrilled, he wanted me home. I decided as a nice treat for him I would ask him if he wanted to join us. He was thrilled, it made his day. It was something special for him and I.

Rylee will be having a procedure done on Friday so we will head up to Tampa on Thursday. I have a good feeling about this so please pray for her. I know she will always be sick. I just want to be at a spot where are managing everything and not always going in and out of ACH.

Hope everyone one is well,
Janet