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.