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.

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.