Friday, December 17, 2004
HAPPY BIRTHDAY TO MY PRINCESS Roo!!!!!!!!!!!!!!!!!! I can't believe that Roo is 1 today. When she was born I had no clue the journey we were about to begin. I had no clue that in this last year Roo would help me to heal family relationships, teach me how strong I can be, bring Tinker's Dad back into her life, and touch everyone that meets her. I have learned so much from this little girl of mine, so much about life. I cherish everyday I have with her. I don't think that I will ever be able to truly accept everything that has happened to her. Bu,t I believe that I am ready to live again for my children, to give Roo much love and happiness everyday as she gives to those around her. All of my friends just absolutely fell in love with her last week. Every minute of the day someone was holding her and she just loved it. I know you all are waiting for details, I'm just so busy living again.
Her appt was awesome we go back on Jan 3 for testing. They are going to do the skin biopsy again, evoked potential testing on her eyes, eeg, mri, gi, pulmo, cardio, another swallowing study, we are gonna be busy. The doctor at the clinic put his initial diagnosis as Metabolic encephalopathy, mental retardation, failure to thrive, and short stature. Roo has not really grown since she was 8 months old. Her head circumference is the same, her weight up and down if we could hit 17 lbs and keep going I would be a happy mommy!, and her length has been the same for 4 months. I told the doctor, I know she is the way she is, but I would like a diagnosis to at least have something to go by. He said that there is a 30% chance we may not find one. He will go as far as I want to go in looking. He confirmed what I already knew about this being progressive. He would like to try the mito cocktail or something like that but he wants to do his testing 1st. I told him I was moving up in Feb. and was surprised when he said that the testing can't wait till then. So, we are on a better path, still not a great one, but better!
Roo has been doing OK, she has another ear infection she needs tubes. Her breathing is awful and I'm so sick and tired of bringing her to the doctor and them telling me its because she has no productive cough and that's just the way it is. I mean there's got be something I can do to get that crap out her throat and chest. I have been doing chest pt that her therapist taught me, I can move some of it but not always. I'm doing breathing treatments and just praying it gets better.
She's also been having trouble pooping lately. It seems like she is just not strong enough to push it out, poor thing. She just tries so hard and nothing so me and mostly her dad have been helping her out. I tried some mineral oil to see if that would help and after 3 days still nothing so we'll see. After being in Ohio last week, around my family and friends, I feel a great sense of peace. I know that whatever happens I will be OK, that my girls and I are surrounded by love, and Roo's life will change people and touch them. It's awesome just to watch my friends hold her, I can see in their eyes the love, and how she just literally melts their heart.
updated: Roo did touch so many lives and change people. I am forever grateful for what she gave here on earth. Blue Bells' 1st gym meet was on the 18th last year, this year the championships are on the 18th. I met a Mom and little girl last year at Blue's 1st gym meet. The little baby girl had Mito, what are the odds, I like to believe that many of Blue's meets are on the 18th to remind us that Roo is still with us and proud of the both of us. For the Mom I am able to be despite her loss, for the wonderful, amazing, shining, girl Blue is, despite having watched Roo die a slow death. She would be 5 now, I'm sure fighting with Tinker over my affection and attention, Blue being annoyed by both her little sissies, God chose this path that we all walk. I step back in wonder everyday at how much Tinker and Blue's bond has grown. How Blue has let go of her anger towards Tinker, because she is not Roo, how they both have flourished and grown. I miss Roo so much, I know Blue misses her too, each day the both of us live to honor her and her memory, understanding each other more then most Mother's and daughter's can........We may not talk about Roo much to the people around us, We may act like life has moved on, truth is we don't need to express through words anymore, those around us know how much we have suffered, how much we have fought to come back and learn how to live without Roo and through her memory, how lucky are we, that through a wink, smile, hug, or encouraging words, we know that everyone around us that loves us deeply, also carries our sweet Roo in their hearts.....