Friday, December 26, 2008


Click to play Deedee's 2nd Xmas
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Here's what went on in "Nochebuena" and in Xmas day... Enjoy! :)

Wednesday, December 24, 2008

Finally Bathing... in the Bath!

Click to play DeeVas Bath Chair Blues
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Yes, last week our Deeva FINALLY got her bathing chair. After a quest to get a long hose showerhead, she finally got her first official bath... in the bathtub! Yay! Here is a slideshow about it... Enjoy! :)

And if you were wondering about DeeVa's teeth... Well, not only she has two front teeth... She got a whole bunch! 6 in total! Watch them LIVE here:

So what else is going on? DeeVa also got a visit today from the bed people, so now a nice position bed with "trendelemberg" features will be ordered and should arrive in a few weeks. That will help a lot in Deeva's respiratory treatment (and in matters of helping caregivers control backaches!). After the scheduled visit in Jan to Children's Specialized we expect to get a new stroller by March, and a stander to help with her physical therapy.

Many people have been generous with DeeVA, giving her some Xmas "stuffers". Thank you all, nurses, people from Early Intervention, SMA families, friends, and family! DeeVa is very excited to get her first official "Santa" visit. Last year she got many blessings, among them the gift of being alive (our Xmas miracle) and this year she finally got to see a tree with pretty lights, Xmas cards and so much people sending their love to her. She knows what is the true meaning of Xmas alright! We miss everyone from the island, but we know that we will go back sooner than everyone expects. You know how it is when you wish upon a star!

So... We would like to remind you all to take a moment this afternoon and remember and live within yourselves the greatest miracle of them all: The birth of Baby Jesus. Yes, it is not today for real, yes it all has been changed and commercialized... But just dismiss those thoughts and keep focus on how innocent things used to be... There are still good people in this world. There is still hope. And the Spirit of Xmas is alive in those who are righteous, courageous and good. Believe, Wish, Dream, and really Live.


Thursday, December 18, 2008

Sweet Sixteen Months... And getting closer to Santa's visit!

Just 7 more days! Yay! I'm so excited! Two days ago it actually starting snowing! Yup, soft white blanket over the cars and building outside. It was not too much, it all melted away quite fast, but it was exciting enough! At least for me, you know... I am a baby of a sunny summer-all-year-long island! LOL

How have I been these last few days? A bit fussy, you may say... My two fron teeth are here! And so are the pain and the fever they bring! And two more are on the way, at their sides... It's never-ending pain! I just wanna be left alone, with my She-Ra and Ariel movies and a continuous feed (food, always the important factor).

It has been so much FUN getting the mail! We have been receiving so many Xmas cards from the other SMA families! We are putting up the cards in the main door, which Mommy had wrapped up in golden paper with small Santa decors ( I guess Mommy misses her office at work, since she decorated around here as she used to do in her workplace!). The door looks so nice! There is a plush Santa face in the middle, and all the cards around it. I like staring at them all, its all colorful and happy.

Just like my Xmas tree. Yes, it had to be kept in small scale... but it looks so pretty in the dark. I like lights, colored lights. they are fun to watch. The small tree has a pine scent. Yup, Mommys trademark of putting one of those car odorizers scented in pine in the tree keeps going! Well, at least we can smell something! :P

This past two weeks I've met four new nurses. One of them is just like Mary Poppins, with such a cheery disposition! That one is a keeper. She talks to me, reads to me, is trying to teach me new words and is so happy at all times! Just the right attitude to be around me. I want happy people! It's all about me! Me! Me!

Still... I wish I had only three stable nurses. This coming and going gets so tiresome... And it disrupts what Mommy and Daddy have to do... Mommy's last day of school is Saturday. These past two weeks she's been chained to the computer, making her big project work.

And Daddy, well, he passed the test last Tuesday, and now has the ID and Certificate as a CNA! For all humans that don't know, that's a Certified Nurse Aide/Assistant, a certificate issued by the State of NJ. He finished that state program, after 4 months of constant sacrifices. YAY!!!! I'm so proud of you, Daddy! One step closer to our family goals! Now, after the RN (registered Nurse) degree... We believe in you!

I'm a bit sad as so many SMA kids are in the hospital. Cornelius reminds me of me months ago... and Shira got RSV. Many others with flu or just feeling ill. I keep all of them in my prayers, as I know God is good and protects all of us. He never stops keeping me safe, and he stands by every one of those kids, and their mommies and daddies. May God grant you all the gifts of healing and family togetherness and peace this Xmas, and always!

I miss my grannies and my great-granny. I miss my 8 kitties, my home, my godparents... I miss humid weather, sun, sweating... I miss the breeze at my home, the silence of the nights, the birdie that use to wake Mommy everyday at 4am... I miss my family. I miss my friends. I also pray to God that we can all be back home soon. There is no place like home.

Bittersweet Xmas... But I am grateful for so many blessings and so much love that has followed me wherever I go! So many people fighting for me, so many helping hands!

One year after the respiratory arrest that landed me in the hospital, here I am. A beautiful big baby that didn't gave up. A beautiful baby that God protected from the beginning. Who would have guessed that I would trigger so much devotion, so much faith? Thanks to me those who love me have witnessed that yes, there is good in the world. Thanks to me my parents are boldly going where others have not gone before! And my life is just beginning, at my sweet sixteen months!

This is only the beginning!