In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Sunday, April 20, 2008
FINALLY in my new HOME!
Almost a whole week has passed since I got out of the hospital, so many exciting things! Let’s see… Hmmm… Well, here goes what my memory allows me to recall (I’m reaching my nap-time!):
MONDAY
Early in the morning I was all dressed up and ready to go! Everyone passed by to check on me, saying goodbye and see you soon. I was placed in the carseat… To be taken back to bed as it needed much adjustment! The RT found a way to make it right, and so back to the carseat… I was showing off with my high oxygenation numbers (I really wanted to get out of the hospital, no offense but I am so tired of so much probing and poking!), When we reached the elevator the reality of it all hit me: I was REALLY going home! So for a moment the shock made me panic and lower my numbers… but only for a moment. I regained my strenght and will to go on, and gave the signal to go on… (Yup, hit the 100 again). So, Mommy rushed me to the grandfather’s car, setting me up in there was a bit of a hassle but was done properly… And off we went!
I had forgotten how a car ride was… I looked around but could not see much, the mask was obstructing the view sideways… And I was focusing on not letting the cold get the best of me… Geesh! Brain-freeze! That’s what hit me while getting in and out of the car! How different from my hometown!
Well, we reached our destination, a strange place in a strange land. This time I was taken out with the carseat and Mommy got all the equipment on her. The crew moved fast. Sooner than I expected I was placed in a bed… Gosh! My own crib! Wow! After all this months I FINALLY have my own crib! (Yup, they never got one for me, the plan was to simply use the play-yard and then get a twin bed… How lame!). I was so excited! As the night arrived the crib came alive with sounds and colors… My own Aquarium! A swimming fishy that bubbles! I was enthralled! I loved that fishy!
Reaching almost midnight the health session was done, and after such an exhausting day I gave up and fall asleep without complaint. Not much to think about… I felt safe. I felt cozy. I felt loved… Yup, I had finally gone home.
TUESDAY
Early in the morning Daddy went to the WIC but couldn’t do much as he needed a letter from Mommy giving him consent to do everything… So…Daddy had the Bob the Builder complex, and finished building up my changing table/drawer thinguie. Mommy figured out in writing what should be my daily routine, and by now handles the feeding pump to perfection! Very important, it’s all about the food!
Daddy brought home some batteries that Mommy had requested for a thinguie for my crib. They put it up, and oh my! It has three flying chicks, and music, and lights up bringing stars to the ceiling! That was fun! I love all these new stuff around me! But most importantly, I love my favorite minions... Having them around me beats anything else, it is always an adventure!
WEDNESDAY
The date for Medicaid was today, so Daddy went on to the appointment and then to the WIC to make sure I got everything filled up. In the afternoon Mommy and Daddy dared to take me off the crib and place me in the bouncer… I was not so thrilled about being seated, and after half an hour scared them hitting the eighties. Nothing that going back to the crib didn’t fix!
THURSDAY
Mommy tried the bouncer on me again… This time they kept is on laying position placing a pillow underneath. Sweet! I got to see Finding Nemo and Mary Poppins! Nothing like being really entertained!
During the afternoon Grandfather passed by, leaving some packages that people had sent me... Gosh! It was almost as what Mommy had told me that Christmas is! I got a bear that lights up at night in many colors! And a musical doggie like the octopus I had, and other bears and shoes and clothing! Yes! So much clothing! So many things! So much love! I am humbled!
FRIDAY
Mommy woke up early to put my feeding in place, then along came Daddy, and before I could actually complain they did that awful routine (I know, I know it’s for my own wellness… That’s what they always say!) and then Mommy prepared that thing mimicking the bath tube… and place me in! To my surprise there was no bottle over me pouring water, no-no… Now this thing is almost high-tech! It has an attached hose that goes to my seat, which is filled with water… And as you push a button water comes out… Just as in the big bathtube in the bathroom! Oh, my! That was fun! A bit scary, for I thought I would drown… Mommy and Daddy kept taking pictures of me, and making believe that I had a snorkel… Sheesh, people! Stop the imagination for a moment! Focus on drowning baby, please! Thank-u!
After the bath, Daddy went out to that wondrous place they call a mall… Mommy stayed with me, playing with me and putting some songs until I fall asleep. The furniture that was supposed to arrive… well, didn’t. During the afternoon one of the Millenium guys passed by to check things up making sure my equipment was working just fine. And at night we all gathered up in the living room, watching The Little Mermaid while Daddy setup the computer (the cable guy came during the day and put cable and dsl… whatever that means…).
SATURDAY
Mommy and Daddy spent the whole day at home, cleaning up the house, setting up the computer room… I demanded much attention, somehow I made my blood pressure go high all day long, so when the alarm sets off they would run to me… Yay! The power over my minions is breathtaking! The landlord passed by leaving a pest repellent for me… Ok, for the kitchen (but it is mainly for me… It’s all about me!). I didn’t wanted to go to sleep early, so I joined Mommy and Daddy in the Livingroom… Daddy put on Lion King. To my dismay, the movie is quite ruined (yup, we played it THAT many times back at the hospital in San Juan). It was so bad, the trying to fix it show… that I dozed off… BORING!!!
SUNDAY
Well, it has been a lazy day. Mommy & Daddy FINALLY put up the so-called “ border” in my room… Half of it features the Princesses, and the other half features Tink. Yup, the halfAriel/halfTink nursery prevailed over all other ideas… Although Nemo and his friends are there… Geesh! Call it a Disneyana mania room! But guys, how about adding Simba and the others from Lion King? I also like Lion King, you know?
Anyway… Mommy taped a pinwheel that Daddy brought the other day (and which I had ignored up until now) to my crib. Yeah, she put it so that the air from my mask would make it spin. How clever! I guess she thought that would amuse me… Well, guess what? It did! And it made me sleepy too… So… Signing off to Neverland to meet Tink in person! But don’t stay away for long! I love visits!
I give thanks to God for granting me the wish of staying with Mommy and Daddy. They would be lost without me, you know? I give thanks becuse I face ech day and night feeling safe, feeling loved... I matter. My minions love me dearly, and I know that they would give their lives, willingly, for me. I thank God for the oportunity to get to know them, to share the good and the bad... And I thank God for all the people that has come to my aid, that has brought hope and beauty to my life. This could have been the end, but God turned it all into a beginning. I cannot give thanks enough... I go to sleep being certain that Mommy and Daddy guard me, that Angels guard me, and that God guards me. Everything is allright.
10-4
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