Tuesday, June 23, 2009


Summer is here, and I am really enjoying it. I can't get out to the living room as often as I would because it is a bit hot for me (yes, anything beyond 85 is hot for me, I am a heated oven like Daddy). Nevertheless, I manage to stay in my crib being placed in different positions thanks to pillows and wedges.

Between Mommy and Daddy's creativity and the nurses's follow up I have been getting some new skills! Yup. Now I am listening to the Wonder pets in Spanish. Wow, it took Mommy forever to figure that one out... Las Mascotas Maravilla sound really weird... It uses Spanish from Chile... but it is cool. After all, I have to learn to speak my main language!

So, it is intensive learning drills with the Spanish Wonder Pets, and then the Spanish animals flash cards, and the Spanish clothing flash cards. They even got me an English-Spanish pictionay! Come on, people, get a grip! I'm not even two years old!

I have also been hanging around... literally. Everyday they hang my right arm, then my left arm. I know, the main idea is to get me to move something. sometimes I do, sometimes think about it... All in all I like this hanging business. I get to practice with the MicroLight Switch and my butterfly and my smashing monkey.

Last week I was a rocking success with my pink hair. I gotta give the look a break, so this week I'm into being a pineapple. I like to have my hair as if it were exploding. Just keeping things fun!

Last Sunday was Father's Day. Mommy prepared a special dinner for Daddy, and we all got to be in the comfy big bed while watching my show. Wow, that was a delight! I love the big bed! And all the cushions! And the A/C and all things hanging in the ceiling! It is a whole new world that I love to revisit from time to time... Erm, well, I could stay here if they stay in my crib, no problem!:)

Today the technology lady from early Intervention passed by to give Mommy some information about eye controlled switches, and to take the mouse so it is converted (for later computer use). When the wheelchair arrives (hopefully soon) then Mommy will go full throttle on exploring those...

The Speech Therapist is scheduled for tomorrow, and I hoe to see my PT and my OT soon. This week won't have too much hassles. And so far, I am doing great. NurseMesheila noted that I was dripping too thin because of the humidifier... It had not occurred to us we actually began using it in full winter, because of the cold, and with this hot climate that is not necessary. So now my numbers are more like they used to... not perfect but getting there!

And so, that has been my latest adventures. No big dramas, and everything flowing smoothly... I love it when a plan comes together! God always takes care of me, sooner or later He shows off! :)

A big prayer for all those sick kids, for the ones that earned their wings, and for all of those who have no home. May God look over all of them as well. Amen!

Sunday, June 14, 2009


So, here I am, in the living room, thinking "Hey, I have a BIG idea... What if I could have a taste of divalicious funkyness?". And using my psychic powers, I compelled Mommy to do something to my hair... Who knew? Now we actually match. Well, Mommy's hair is red, and mine has pink, but you get the idea. Am I fabulous or what?

This past week went away REALLY fast. I don't know what's going on... Well, among all things... I've been reinforced into Spanish as mommy is reading my flash cards almost everyday. She wants me to be as bilingual as she is... She keeps saying "spanish is for poetry". So, nurses teach me English, and she teaches Spanish. Do I have a words salad in my brain? You bet! Animals here, animals there... In the farm or at el Morro.

The week had no newsflash. It was all quiet and nice. Some hot days made me have to stay in my room, but then the coldest days allows me out. This week no therapist passed by. I've been doing well, and the main focus of the week has been putting my arms in the custom swing that daddy built, to help me enhance some arm/hand movements. The weekdays are great with the nurses that are coming Mon-Fri. I guess that's why days are flying: I'm having too much fun.

I've been chilling in the weekend. AuntieVangie sent me some cool stuff, and everything fits just right! I feel like a "fashionista" lately, wearing all these pretty dresses. Love this hearts dress, cool and comfy. We are all so happy, as we got news about the electric bed. It got approved. Now to wait for it. Hopefully will be here before Christmas! :P

I'm asking God to help so many kids that are not so lucky as I am, kids that are waiting for a family. So many are nameless, but others have names: Paul, Julianna, Christopher and Ariel. Special needs kids are often abandoned... It is very sad. They need love too, and so many people forget about them... Well, I don't. I pray to God that someday there won't be any abandoned kids left alone in nursing homes.

I also pray that the cure for SMA is found soon, so many angels can actually stay here on Earth, and grow up giving so much needed love to everyone. I know prayers are powerful... That's why I am alive. Let's pray for health and happiness, and for peace.

A new day, a new chance to truly live. And to share love.


Friday, June 5, 2009


This was an easy, breezy, beautiful week.

I went to the Technology Center to try out a stander. Woah! I was put in an almost-standing position, and surprised everyone with how tall I am! Yup, 3 feet tall. I loved it. The trial stander was too big for me, but the purpose as a trial was fulfilled. It will not be the brand I get, as they decided there was no point to having a stander that goes into sitting position. The thought behind that is that I’ll get sitting trials when I get my wheelchair, plus it will make it more feasible for insurance to cover (that vendor is REALLY getting on our nerves… each time he opens his mouth it’s just offensive). Anyway… So, it was all settled, and they will send for a Buffalo stander. Hopefully it will be approved and will arrive by Christmas…

On Tuesday, Pat passed by and we did some of the old exercises (always checking and trialing my developmental skills). This time I decided to cooperate, so she was very happy with what I can do. There, I made another fan happy. Yes, I select with my eyes. Yes, when you say a word and give me a choice of flash cards I know which one is which especially if it is an animal card (I love animals). Yes, I use my big fat thumb when I want to with the switch… it is just difficult to know what I’m doing if I don’t see it and it takes perseverance and overcoming my getting bored and annoyed to actually find a position that may work for less than 5 minutes… And yes, I love it when people read me books and show me the pictures (especially when it’s mommy or daddy… they are silly! They do this teamwork when reading… moving plush dolls and puppets and making me feel so happy and so loved).

On Wednesday the family psychologist was updated with all the plans and what’s been going on, especially about my progresses and the frustrations of waiting for my equipment so I can actually go ahead and make progress. Yes… the waiting game is so unnerving and tiresome! Everything is wait… The bed is in process for approval, the wheelchair is in process for approval… The stander ditto… We are crossing our fingers on all that, so I finally get what I need. My crib is getting too small for me (I’m a giant baby!) and the stroller that another family lent me is beginning to be too tight/small for me (so I always look like I’m hovering on it!)… Yes, I actually need my wheelchair ASAP. I wanna be able to at least visit a boardwalk or a zoo or the aquarium… An outing besides going to doctor appointments would actually be so nice!

On Thursday PT-Ellen passed by, and we did the mandatory exercises again. We read a book, used my fingers/thumb, and fall asleep… Sorry! I was fussy all day long, and mommy was thinking I might be getting a bit sick. At night I was well, but did not want to get to sleep… not even while watching Fantasia! I wanted to p-a-r-t-y!!! Yup, you got it right! I even started doing strange sounds with my mask. Well, mommy and daddy put an end to the fun, they changed the mask’s position and even the vent to make sure that everything was fine… Geesh, I was just having fun! Well… Back to being bored, I finally fall asleep… early in the morning…

Friday has been a bit of a hassle. I had a bit of fever in the morning, but NurseMisheila took care of it. The afternoon has been a breeze, watching Tinkerbell and being just chilling in the crib. Since I am not feeling so fabulous I’ll stay in my room today. No biggie, A/C and pillows and food and Tink… I’m all set!

God: Thank you for so many blessings! Thank you for helping mommy and daddy cope with so many things! Thanks for sending my way these new people who are caring so much about me! Thank you for keeping me strong and smiling! You have blessed me in so many ways! Let me do Your will, and show everyone that You are there and that You make Miracles happen Everyday! Protect and heal all kids that need you, above all those who have no one to care for them. Amen.