In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Thursday, June 30, 2011
Summer Camp at the Newark Museum
Wow! I am so excited! Mommy and Daddy are making arrangements so I can go to the Newark Museum Summer Camp! I'll go for certain during the weekdays afternoons, and maybe on Thusday and Friday mornings. The program takes weekly themes for 6 weeks, and I am certain it will be quite a Globalization Experience! Mommy and NurseMasheila will be with me of course, to ensure my safety. I went today to meet the camp staff that will deal with my group, and they all seem so happy and nice! I expect good things to happen in the next few weeks! What a birthday present! It is all VERY exciting!
The themes that they will cover are:
India, The Spice of Life
Africa, Celebrate Contrast
Tibet, Serenity Now
Cuba, Island in the Sun
North America, Trail Blazing
Ancient Egypt, History's Mysteries
This all will begin on Tuesday July 5th, ending August 12th.
Mommy and Daddy launched a small fundraising campaign for this purpose, and some people have really demonstrated their support. Thank you all (you know who you are!). I am so happy that this will come true, and I look forward to learn, do arts & crafts, and make you all proud!
Summer is the right time for me to shine the brightest as it is the only time during the year that I can go out because of the weather. Fall, Winter and Spring are bad for me, but in Summer I can actually get out of the house and enjoy life! I know Mommy and Daddy worry about me, and it means a lot to me that they are also trying to help me do the things I want to do.
The other good news is that for Summer school I will have Mr.Farina back! I'm also very happy about it! He is such an outstanding teacher! This Summer will definitively rock!
Yesterday we had a second "pool party" in my living room. Some people may think my parents are crazy, but me... bring on the piƱa colada and the 80s music! I really enjoy being in the water, moving my arms and legs, with Mommy and Daddy fussing over me, and watching my favorite shows. It's all very relaxing!
I really can't complain. I am surrounded by love and so many blessings! God has so many purposes for me, and He acts through me every day, from the time I wake up to the time I fall asleep... and then He watches over my dreams. My little steps are big steps thanks to Him!
~
Friday, June 24, 2011
Return to Turtleback Zoo
I had a blast at the Zoo on Monday (after Father's Day)! When we arrived it was really hot, and I was not happy at all, but Daddy saved the day getting me sunscreen. Here are some pictures from my trip. And the video, at the end. Enjoy!
Getting into the train ride both cool me down and was fun, fun, fun! I rode by myself at the front of the train! Yup, this was my first train ride! Whoohoo!!!
Nurse Mashaela watched from behind me... Me, I was ready for action! Loved the lake and the tunnel!
Mommy and Daddy and Kali sat behind me, right after my trusty nurse Mashaela. Kali was quiet, so apparently she was entertained as well.
We went to an acuarium exhibit, and saw some fishies and Nemo and Dori... Not for long, though... A swarm of kids arrived and I had to run away fast!
The red thinguies that look like lobsters but are not... I love how they move around!Still, it was fun. I always love to watch my fishies (and fishies cousins)!
Mommy turns my head left right left right... Getting blurry! Nah, I know she is just making sure I can see it all. Love you, Mommy!
I see big, big teeth and a not so friendly grin... Num-Num-Num... Crockey!
Kali and me got fed just while we watched the white wolf through the looking glass... Way cool!
Just coming out from the bear's house (literally), and heading towards the bisons!
Getting into the carrousel ride. I've heard it is fun... so I tried it...
Hmmm... Round and round and round we go... Fun... for a while...
Now here I am just riding in a swan... Was fun at first, but got a bit dizzy...
My sister, doing what she does best... Maybe she just got dizzy while watching me... I definitively did not love the carrousel.
After such a long walk we were all quite exhausted! I was definitively ready for a nap! My sis... well, she screamed for a while but then gave in and sleep too.
Here's the video of my trip:
All in all it was a cool trip. My favorite part was the train... would have stayed there just going around, but there were too many kids and I had to comply... Maybe next time... in a cooler season (the sun was just too much!). Happy Father's Day Daddy!!!
~
Getting into the train ride both cool me down and was fun, fun, fun! I rode by myself at the front of the train! Yup, this was my first train ride! Whoohoo!!!
Nurse Mashaela watched from behind me... Me, I was ready for action! Loved the lake and the tunnel!
Mommy and Daddy and Kali sat behind me, right after my trusty nurse Mashaela. Kali was quiet, so apparently she was entertained as well.
We went to an acuarium exhibit, and saw some fishies and Nemo and Dori... Not for long, though... A swarm of kids arrived and I had to run away fast!
The red thinguies that look like lobsters but are not... I love how they move around!Still, it was fun. I always love to watch my fishies (and fishies cousins)!
Mommy turns my head left right left right... Getting blurry! Nah, I know she is just making sure I can see it all. Love you, Mommy!
I see big, big teeth and a not so friendly grin... Num-Num-Num... Crockey!
Kali and me got fed just while we watched the white wolf through the looking glass... Way cool!
Just coming out from the bear's house (literally), and heading towards the bisons!
Getting into the carrousel ride. I've heard it is fun... so I tried it...
Hmmm... Round and round and round we go... Fun... for a while...
Now here I am just riding in a swan... Was fun at first, but got a bit dizzy...
My sister, doing what she does best... Maybe she just got dizzy while watching me... I definitively did not love the carrousel.
After such a long walk we were all quite exhausted! I was definitively ready for a nap! My sis... well, she screamed for a while but then gave in and sleep too.
Here's the video of my trip:
All in all it was a cool trip. My favorite part was the train... would have stayed there just going around, but there were too many kids and I had to comply... Maybe next time... in a cooler season (the sun was just too much!). Happy Father's Day Daddy!!!
~
Tuesday, June 21, 2011
Father's Day Weekend
FRIDAY: IN MY STANDER
Nothing out of the ordinary, just me looking amazing as usual. I am staying standing at 55 degrees for 2 to 3 hours... No sleeping!
SATURDAY & SUNDAY: CELEBRATING DADDY IN MY POOL
Well, they say Puertoricans are ingenious especially when it comes to partying. There's a saying that we'll put up an A/C in the middle of the Earth if we were to live there... So it should be no wonder that if we cannot go to the beach a home pool is a no nonsense choice. And I tell you, I love moving my arms and legs in my pool!
MONDAY: TURTLEBACK ZOO
I had no class today, so my parental units decided to take me out on a trip. Wow, after two years and a half I have returned to the Zoo! The peacocks still chased Mommy, and this time I had two firsts: I took my 1st train trip, and I took my 1st carrousel spin! I almost get my 1st sunburn too, but Daddy took measures after the initial scare and my skin is intact. One thing is certain, I really hate noisy shrieking kids, and going around under the sun (gotta love controlled environment and cool days). Our picture camera finally expired... so these pictures are not great... But the videos to come will say it all much better (stay tuned).
Summing things up, this weekend was AWESOME! I did so many fun things I am definitively beat! I wish we could party like this every day! Even being around my baby sister Kali was fun! Hey, I can get used to this lifestyle! (Hint, hint!) By the way: HAPPY FATHER'S DAY, DADDY! YOU ARE THE BEST!
God: Thank you for allowing me to create more happy precious memories. Thank you for surrounding me with love!
~
Friday, June 17, 2011
Projects and tune ups
This week I kept on completing projects with my teacher. My favorite was the pinwheel project. Love the colors! It is so... me! Besides this, it was a drama-less week. I got all my therapies, I used my Tobii, I finally got a subscription to two cool activities sites (that should keep me entertained): NickJr Boost and the Disney Digital Books. Both do different stuff, one is all games and the other a nice book collection. Found some sites to help me learn to read, and will be visiting as much as possible... Gotta learn to read! After that, then the sky is truly the limit!
With all the activities I am getting quite tired... I'm napping regularly between nurse shifts! But I deserve it, I'm doing a lot. I've been standing with my stander at 55 degrees for 2 to 3 hours, keeping my stats with oxigenation above 96 and heart rate below 120. Is that cool or what?! I've also been enjoying watching old cartoons (Pete's Dragon, Dumbo, Lady & the Tramp, Sword in the Stone...) and I really have to say I like them a lot. I've been happier than average this whole week with all the new stuff happening around me! God truly looks out for me, and takes care of me in every way. Life is good!
~
Saturday, June 11, 2011
Wednesday, June 8, 2011
Stuff, Dr.Bach, and Summer!
Well, I tried out the Trilogy ventilator and it was not a good fit for me, so it is back to the LTV. The RT switched me to a newer version, though, the LTV 1150. Mom read something about a LTV with integrated pulse ox, and they are on the lookout for its wherabouts. It's good to know I always have such a great company taking care of whatever I need.
Visited Dr.Bach on Monday. My vent settings were changed. Now I have deeper breaths, so my lungs keep on growing, and the respiratory therapy was changed to 3 times a day (used to be twice). Besides that, everything else is the same and I am doing great. Ever since the settings were changed my saturation numbers have been quite high (99-100). Yay!
The sun is finally here to stay (at least for the next 3 months)... I am looking forward to finishing the school year and getting into Summer so I study 3 days a week and get to go out for the other two. It will be a nice change, and I will get to get re-aquainted with sea creatures and the like. If this place had better climate things would be perfect! But at least we get three months of perfect. I am grateful for that! I am also giving some thought to looking for Make A Wish and deciding what to do with my wish... maybe for October or for Christmas!
These next months promise to be exciting. Father's day is around the corner. Then, my sister will celebrate her first birthday in June 23rd. July brings on full featured Summer school and some field trips... And August brings on my 4th birthday! I hear that my Godfather may make it here to celebrate me! I certainly hope so! I'm tired of the same faces all the time!
A new nurse joined my crew for the weekends. She is like a sprite, with a very cheery disposition. I hope she gets to stay. She is fun. By now I am very happy with my crew. I hope things get better now! Fingers crossed to that!
I heard Mommy and Daddy are going nuts with the new medical insurance changes. Now I cannot keep on with straight Medicaid as they are changing everyone to HMOs. I hope they can sort out which HMO is best for me... And I hope that I get to keep on getting my normal services and maintenance equipment. There must always be drama, right?
Well... That's the newest news. Keep tuned...
God: Thank you for all your blessings. Thanks for being there helping all kids that have been sick, or at OR like my friend Sophia. Thanks for such lovely days, and for surrounding me with just the right people. Thanks for my family and my friends, and for so many strangers that do things for me! I keep on being humbled by Your kindness, and Your Love. Hold me in Your arms always, God! Amen.
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