Tuesday, August 17, 2010



Yup, today we celebrate my 3rd birthday. Who knew that time would go so fast, and that my life would be filled with ongoing adventure and drama! It has been quite a journey, facing Death straight to his face and fighting the SMA monster in so many battles! I have not lost faith, and I know that many years lie ahead of me. There are so many things I have to do! And I will do them. God is always at my side, and I am surrounding by an entourage that would take a bullet for me anytime. I am happy and grateful, and humbled by so much love!

To everyone who has been there for me in body and in spirit: Thank you!


Saturday, August 14, 2010


For all if those we lost to SMA and those still fighting:

Hope never ends...

We will find a cure!


Thursday, August 12, 2010


CELEBRATE DEEDEE's 3rd BIRTHDAY!!! Family and friends may join us as usual, through video-chat. Go to my BIRTHDAY CHATROOM and enter the password (bday). You can just enter a nickname (blank on the right side)and then select go.

My birthday is in August 17th, but we are doing this chat on Sunday 15th so all the people that love me so much may actually be able to see me (I know most people work on weekdays). So... No excuses! If you are in our area, you may pass by. If you are back at home, the family gathering will be at Auntie's Place as usual.


Wednesday, August 4, 2010


In just 13 days I will turn 3 YEARS OLD! Imagine my excitement! This marks some changes in my lifestyle, you know? I will stop receiving services from Early Intervention, and thus I will definitively miss my therapists Pat, Ellen, Maya, Jaimie and Tracy (I love you guys, and I hope you all keep in touch!). This means I will begin my school years attending Pre-Kinder being homebound. I still have to meet who will be my teacher, and I just know that beginning September I will have a teacher from Monday to Friday for two hours… and new therapists for PT, OT and ST (that should prove interesting). So, this birthdate will bring many gifts of change and challenge!

During July everyone has been going crazy in the house, thanks to the little banshee that arrived on June. Mommy has been more patient than me, I tell you! Daddy has handled the little one, my respiratory therapies, training the new nurses, and taking training as he got a new job (yay for Daddy!). Mommy just passed her latest class, and now prepares to tackle the dreaded concentration courses (what a bookworm!).

August has been “getting back on track” month for me. I just got an eye doctor date today, just so he would check my eye, making sure it is ok. Funny thing is that medication did not help, but the wise advise of an SMA parent had the simple answer: My eyes were extremely dry thus creating the styes and so she suggested an over the counter eye gel that did the job just right (GenTeal gel). Next week I’ll have an MRI, chest X-ray and a hand X-ray so I have things to show and ask for answers when I go to the SMA Clinic in September and see the neurologist, endocrinologist, pulmonologist, nutritionist, and dermatologist. By the end of month I should see the rehab technologies expert at her NJ office, to see if my wheelchair and stander issues are solved. It is a busy month, and September already looks very full from my perspective… So, no more boredom!

I’ve been feeling cranky and blue for so many reasons! Starting with the new brat, then getting used to new faces, then coping with old faces… then handling people that doesn’t get it when it comes to me and my illness… All is very stressful and unnerving, but I know that whatever goes on Mommy and Daddy and my entourage do everything for me. After all, it’s all about me, right? But besides my high ego, know that I appreciate all you do for me, and all you stress for me. I know things are not as easy as they look before me. I love you all!

God: Keep all of our lives in your hands, cradle us so our troubles are soothed and grant us wisdom, courage and will to go on no matter what. Guide us, and bring into our lives just what we need. Protect us, and help us… Thank you for granting me another year in the lives of those who love me. Thank you for allowing me to teach many lessons to those that listen to me with an open heart. Thank you for so much beauty and happiness around me, for I walk in beauty every day with my family. Thank you for the gifts of happiness, peace, and above all… LOVE.

Don't miss my birthday! It is in August 17, but we will probably celebrate it on Sunday, August 15. Keep tuned to this blog for more details about it! From what I hear, it will be super!