Wednesday, May 20, 2009

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.

Sunday, May 3, 2009

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.

I'm a bit of a daredevil

About Me

I'm a Mom of two wonderful children, Andrew(4) and Rylee(1). My husband and I are originally from NY and moved to FL 6 years ago. I love it here and won't move back but this is where I live my home will always be in NY. When I die someone better fly my ass back there to bury me. I love hanging outside with the kiddos, sports, working out and taking pictures.