DEIRDRE MEDINA's DIARY: A LITTLE MAGE in the FAMILY

First Month of the Year

2012-01-22T15:59:00.000-08:00

This year began with me at the four star hotel, then a big welcome home followed by the Three Wise Kings leaving me many presents under our Christmas tree! Not a bad start at all, considering that usually this time of the year I am in deep fear of getting beyond sick because of extreme crazy weather. This year the snow took its time to arrive, and the cold behaved until last week… My adventures have been mild, but not uneventful.

The first weekend of the year began with news that I would not have my private OT until some paperwork gets done… This is because now each time you get to the hospital then services stop. When you get out, services must be restarted (noticed not renewed), so I need a prescription so an evaluation nurse comes out to see me so she can give the go to my OT services… This is a process that is new to us, and that no one had bothered to let us know. So… I did not have my private OT then, and it’s been two weeks since that… Paperwork is still stuck somewhere. The funny thing is Mommy received the insurance service approval on Friday, and it had the 4 sessions for this month. Things that makes you go hmmm… Hopefully the private OT thinguie will be solved so it all is restarted by February’s beginning.

Talking about OTs… Vacation from school ended, and services from my school PT, SLP and OT are back. The new OT has helped me complete some crafts and has set some goals that run towards my being more independent and proactive in my own personal care. Whoa! Now, that sounds like mayor goals! I am very excited to see how the goals will come true. The most immediate thing is getting me to control my index and thumb fingers enough to get to open a toothpaste cap. May seem like such a simple thing to many people, but that is something that would mean so much in matters of the things I can do by myself. I look forward to work towards this big goal. Imagine, I’ll be able to help my morning and afternoon nurse with my own oral care! That would be way cool!

My SLP is drilling me with the communication screens… Talk about killing me with kindness! Well, not so kind… I understand why he gets so pushy, but the screens (and what I am asked to do) bore me so much! I know what they have… And I use it all when it suits me. I don’t like being asked twice for things, and I don’t like yes or no questions. I am trying to go along with it, but it is all very draining. At least the last couple of sessions integrated playing with my favorite Kai-Lan toys. I’m trying to lighten up… and get over it. I know how frustrated people get when they don’t understand what I want… I just wish they paid more attention to the details about me, so they would see I am not that complicated. I just get bored easily. Mommy added some daily choices so I can go beyond the main screen to the things I want or need. That should make it easier on me… it is much better to say exactly what toy, movie or game I want. I missed that. We’ll just use the simple task screens for the sessions, to keep them focused. I’m more open to this plan… My love for the Tobii is renewed. I will do my best to answer “on demand” even if I hate it… I pinky promise…

My PT has been coming as usual, exercising and ranging my whole body. Arms move, legs move… She makes me push and move my feet and toes. She makes me move my hands and arms, and is training my fingers to thumb-wrestle. I did not see the point of that in the beginning, but after using the joystick for the power wheelchair demo I have a good idea of where she is heading. My thumb and index fingers are moving and wiggling like crazy! And I am controlling much better whenever I make selections with my proximity switch (especially when it is positioned so I see the activation light… I gotta have my feedback).

On Monday the 9th I had an appointment for evaluation to use the Motomed Gracile PT machine. We went to Children’s Specialized for that, and although we are not happy about the Rehab people, this PT from the upper level was outstanding with me (her name is Sarah). She was not afraid of moving me or touch me, and assessed every inch of my body. I was pretty excited about it all, but did not expect to try the machine that day. I guess that when I heard that I was going to try it I kinda got a bit over the edge. Seems I aspirated and it all caused one of my typical RT episode scenes (which are common to me and my parents, but can scare the beejizes out of anyone else watching)... So, after the episode I had to stay reclined and go home, Mommy & Daddy would not put me high in the wheelchair after such a thing, and I needed to be coughalated and nebulized as soon as possible. So… there went the chance to try the Motomed before the snow and cold weather hit strongly. I knew that going to try something after being a whole week in the hospital was not a good idea, but oh well… “Foolish Hobbits”… We’ll return by May… hopefully… And that story shall continue…

The rest of the week was uneventful in matters of going out. I had a GI appointment but it was changed as snow showers were expected. My numbers (oxygenation and heart rate) have been a bit erratic and variable just as the weather and Mommy. All in all I have been well enough to complete my school projects (especially DeedeeLand, my personal version of CandyLand) and to get deep into the alphabet and the numbers and books and Martin Luther King, Jr. Mommy and Daddy got in contact with the social worker from our housing and will try to get a bigger apartment so I can have the mandatory space I need and my sister can get her own space (sardine living is not recommended at all). And my EIP meeting was cancelled as everyone had something better to do… I mean, everyone was tied up with something. It was rescheduled for next week…
Bear with my sense of humor.

The collar and headrest saga continues… Now, the seating company seems to have misplaced or lost the order… Apparently it arrived, but no one has found it. If I were not a nice girl I would say something naughty, but I won’t hinder my chances with Santa for next Christmas. On happier news, the ATP from that company and the guy from Permobil should come see me next Thursday for another power wheelchair assessment. Please cross fingers so no weird episode happens and spoils the assessment!

Mommy also contacted our new Department of Education case manager (the social worker) asking for ATP assessment. It came to her attention that I should be assessed by an ATP twice a month and that has not happened since classes began (all this time). Mommy also contacted Advancing Opportunities to see if they can assist me with that… A new saga has begun… Perhaps this will also take care of the video-conference I should be doing with the school…

Mommy contacted the creator of the exoskeleton for arms movement. He required a video of me seated in my wheelchair and moving/ranging my arms to see their flexibility. So, that video is also a next step to see if I could be a candidate for using the WREX from Jaeco Orthopedics. Cool stuff that could help me do a bit more of daily normal stuff… on my own. With my being sick I have not been able to show my ability yet, but hopefully next week I’ll be able to finally do it and send it to him.

Last but not least, Mommy submitted a request for Make A Wish, New Jersey chapter. I am all for Mulan and Pocahontas (my heroes, my strong ladies!), so I have high hopes for all that THAT could bring!

Is my life exciting, or what?

GOD: Thank you for everything You do for me. Let me be an instrument of Your Peace and of Your Love. Do with my life as You will, I trust the big plan that You have for me. Thank you for surrounding me with just the right people and for keeping me alive and well. Help me soar, and help me help others soar. Amen.

Happy Three Kings Day!

2012-01-06T20:00:00.000-08:00

Feliz Dia de Reyes! I celebrated this very special Hispanic tradition at home. Yes, I spent 5 days at PICU but thanks to so many prayers and proactive actions I was sent home early in the week. On Monday I got a special visit, Pastor Bill and a missionary also named Bill. They had tried to see me at home, but found just Mommy getting ready to come to the hospital. It was nice to have a visitor... All these years I've never had a visitor (besides my first hospital stay here, when I met Ethan and Emily). They brought me two books, which I devoured. On Tuesday Nurse Mashaela came to see me, staying for a while so I got to laugh a bit with her silliness. After she went away, Nurse Marie also came to visit me, and she got me two balloons! I was so excited about them! She got just in time to see me get ready to go home. It was cool to roll around the hospital with the balloons on my hands. Mommy was very concerned about the time we went home (6:00pm) as the temperature was hovering on 17 degrees... I was wrapped up like a burrito, rolled into the van, and then hurried home. I had a quiet night, and as soon as next day I was up for my respiratory therapy, school class, and even occupational therapy. Everyone was praising me for my focused attention and happy disposition. Yes, I missed this all very much.

I have been in special respiratory therapies mode to make certain that I don't get sick again. Nebulizers each 8 hours using Duoneb, along with CPT and cough assist. Today I went to see my pediatrician for my second shot of Synagis. Everyone was relieved that the day was warmer (around the 50's), so I went to my appointment, and then went home without any other events. In this case no news is good news.

As I arrived home, I noticed that the water bowl and the rice that I left last night for the camels of the Three Kings were almost empty! I thought they would not eat the rice, but I guess they were that hungry! At first glance I saw no gifts, but then as Mommy turned on the light I noticed a blue sack almost hidden between the sofa and the tree... It was filled with gifts for Kali and me! That was awesome! Kali did not waste time and immediately grabbed two gifts (never mind that one was mine), doing a happy Ewok dance of her own.

I guess that I got so excited that I almost choked myself. I had to go into my bedroom for safety, but Mommy and Daddy brought everything to my bed so I could open my presents. I was upset as I wanted to stay in the living room to open gifts with my sister... But then I say she was already in my room, just playing with some cars and paying attention to what I was doing... Seems that I am the biggest entertainment she has... Sometimes THAT makes me wonder... I calmed down, and the gifts reveal began!

This definitively made my day! Jewelry, silly warm socks, t-shirts, table games (family game nights, hint hint), Squinkies (this time Beauty & the Beast for expanding my collection), pop-up books (yay!), coloring books with stickers, singing Jasmine (wow and gasp, very cute), my very own remote control solar system (I think Santa and the Kings had something in mind... Santa brought me a video of a field trip to the planets, and now I get this... Hmmm), a Kailan bubble blower (I'm wary of bubbles but love the dragon), and a talking Kailan (these last two adapted so I can play with them on my own! And the talking Kailan... Hypnotized! Mesmerized! This deserved an awesome! Loved her so much I coulnd't stop playing with her until more than half an hour, and only because I had not watched TV for the whole day!!!).

Wow! So many cool things, all to keep me quite entertained for a long time! I had caution with the bubble blower, and I discovered that I could use it to play with my sister... I trigger it, blow... and she catches the bubbles. It works perfectly (that way she stays away from my mask). Mommy mentioned adapting the solar system's control so I can use it with my switches... Whatever, I know I will love watching it spin. Thanks to my godmother for that one! I promise I'll share it with Kali! And thanks to my Grandma Millie, especially for the bling and the bed covers she made for me.

Mommy noted that she got a note from the Tree Kings saying some special Bible videos were on the way, along with some switches for my adapted stuff. They were in such a hurry, and misplaced them in another sack a bit far from us. They said they'll deliver the missing stuff soon, to have patience and hope. They said they will probably mail things... taking the camels on such long walks too soon may dehydrate them. I didn't get upset at that. I used everything with my proximity switch, and played with everything else. I watched Dora's Three Kings Day special twice. I am happy with everything I have, but most of all I am happy I am home.

Being in the hospital made me re-evaluate all things that surrounds me... so many things that not many people have. I have a family that will do anything for me, anything to make sure I am well and healthy and comfortable and happy and divalicious. Yes, it is annoying how Mommy messes with my hair in the mornings... but I really missed it... It is a drag to get up early for the mandatory respiratory therapy, but it is what has kept me well and alive and strong for so long. My classes are demanding, but thanks to them I have learned discipline and how to be focused. My therapists keep me awake when I want to rest, but show me the value of perseverance and being steadfast. Strangers show me the value of what really matters, being open and friendly and helping expecting nothing in return...

I have many things to be grateful for. God has surrounded me with just the right people to help me reach goals and dreams, and to help me complete the big master plan that He has written about my life. I get mad, I throw tantrums... but I do acknowledge what is important is invicible to the eyes, and I know that in the end no matter what you do Love is the way. May this new year bring many blessings to my life... change towards something better, change towards certainty and bliss, change towards growth and amazement.

Thank you God for the miracle of life, for family and friends. Keep on carrying me in Your arms whenever I need You, keep on smiling whenever I do the right thing. Grant healing and happiness to so many that are sick and in despair right now. Grant us all peace, serenity, courage, and wisdom. Amen

OUR THREE KINGS DAY VIDEO:

Day 4 at the Hospital

2012-01-02T08:53:00.000-08:00

Still getting respiratory treatments/therapy every 4 hours. Medicines will be decreased to every 8 hours as I was fairly stable yesterday afternoon and night (these are the nebulizer stuff: albuterol, mucomyst). Feeling very tired, but putting up a good face. I hope I can be home for 3 Kings Day, but it all depends on how fast I can recover & heal. I miss being home so much!

My little sister makes mommy's and daddy's shift change quite noisy. At least she could stay around as there are not many kids at PICU, just 3 more. It was sad not spending New Year's Eve with my whole family... Mommy stayed the night. For the sake of safety, daddy stayed at home with my sister. Legend says that he slept through the night... I am glad that even if things have been rough good news and hope are around always. God keeps surrounding me with His Love and the love of so many people! I foresee this new year will be one of wonder, and even greater miracles.

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. JEREMIAH 29:11

In The Hospital

2011-12-30T15:12:00.001-08:00

Since I've been sick for 10 days and the antibiotic that my doctor prescribed didn't make me better, Daddy took me to the emergency room today. There they took X-ray, blood samples and sputum sample,and the outcome was that my left lung has something. It was not clear if it is a ball of mucus in the lower part, or if I had atelestasia in there (partial lung collapse). So, without much thought, I was admitted to PICU.

I am at UMDNJ Hospital as usual, Level G room 416 (well, it has been more than 2 years since my last visit but the doctors and most staff are the same... even got same room). I guess this year's end will take place in the big hotel... I hope that I can be home soon. I don't like being separated from all my family... I'm even missing my little sis Kali... May this lung heal so I can get back on track with my normal life!

Our Night Before Christmas

2011-12-27T00:36:00.000-08:00

Merry Christmas!

2011-12-26T21:16:00.001-08:00

This has been quite a week! I have been sick since last Monday, so Mommy and Daddy have been running the house like a hospital. Daddy has been staying up all night at my side, making sure that I get my medicines and nebulizing me and doing CPT and coughs as necessary. It was rough... I almost made it to the hospital... But, prayers and diligence did the trick, and I really thank God for allowing me to spend another Christmas at home with my beloved family. I am still under antibiotics, and getting my respiratory therapy and care as needed, but it is not as bad as I have been before (knock on wood). On Friday morning I had a visit from the Tooth Fairy! I lost my tooth, literally... but she accepted the card I made! There is always a silver lining in dark clouds.

The night before Christmas was filled with diligent vigilance from Daddy. My new friends from the nearby church visited me and made my night special. I also watched Santa's video, where he made sure to let me know he was going to visit me. I wanted to see him again, but I fall asleep... I guess the Aquarium memory will do (along with his video email!). I am just glad I made it to the good list.

So... The big day arrived. After my mandatory routine, and getting all glammed up, Daddy took me to the living room so I could see myself what went on. Wow! I could not believe my eyes! Santa brought many gifts, sent by so many people who love me so much! Here is a picture of me under the Christmas tree...
I was so overwhelmed! I did not expect so much!

So you can guess that we all had a very special day. My sister Kali had a blast, and Mommy and Daddy fussed with us until we fell asleep... What a day! But don't just take my word for it, check out the pictures. Enjoy!

Staring at the camera just to make Mommy happy
My sister Kali ready for Christmas (and for opening gifts!)

Mommy prepared this yummy ham! I only tasted the syrup, but Daddy was very happy with it!

A Flying Froggy game to play with Mom & Dad!
Shape thinguies to cut play doug and real dough!

Wonder Pets! And a Squinkies video game! From Kat & Kev
Divalicious hair stuff from Auntie Edni!

And nail stuff to match all my outfits!
A movie "Field Trip to the Planets". I foresee some planetary action in my future...

Animal Crafts from OT Roze!
Giggly Kailan! This on is bigger than my old Kailan! I really love that she is wearing purple (my favorite color!)

Crayola Princesses Coloring pad, from OT Gail!
Hugging Cow from Nurse Marie! This is perfect for my wheelchair (so my hands are comfy and in place)
There was an Old Lady who Swallowed a Fly! Pop-up book. I love this story, it's so silly!
T'was the Night Before Xmas! This is a gorgeous Pop-up book!
Wide-mouthed Frog pop-up book!
Clothing from my Auntie Edni

Pocahontas arts & crafts, from my OT Roze!

Clothing from Granny & Great Granny

Squinkies!

From my Godfather Steve, Singing Rapunzel! Awesome!
Playing my singing Rapunzel! I can do this on my own, LOVE it!
Singing Mulan! Now THIS was absolutely AWESOME! Mulan is my favorite princess, along with Pocahontas.

Singing Pocahontas! I am floored!
Me & Mommy

With my family
Looking Gorgeous!

Sleeping after my dolls were placed at my side

Squinkies stuff

Surrounded by my stuff...

And more stuff...

And more stuff

My sister sleeping with her favorite people

And so a perfect Christmas Day ends... And I am so grateful for so many things that I received, in special the big blessing of being loved, and being here. So many people take for granted every breath they take here in Earth... I don't. And I know that my family don't. And I am glad that everyone that cares for me don't. I am very lucky to feel love every second, to witness love every time I blink. God has been good to me, giving me a family that is so special and with whom I know I can soar. Baby Jesus is born among us every year, and we celebrate Him as He is the Greatest Miracle of All, the greatest gift of Love.

GOD:
Thank you for my family, for they are always there when I need them and they are always there to be silly with me and patient with me as well... I know I m not easy, I try to get a hold on my tantrums and I always want to get things my way... I am really trying to be better... I know everyone around me love me and want the best for me. Thank you for keeping the right people around me. Thank you for a loving home, and for taking care of all my needs. Thank you for carrying me through the hard times, for sending your angels to help me when I am ill or in need of good advise... Thank you for so many blessings, especially the gift of life. May I be able to express my love for You so You are proud of me. Make of me an instrument of Your peace and of Your will. May I touch lives and change them forever, in Your name. May I live for You, forever.

I only have one special request. May all who need You find You, and may they find not what they want but what they need. I know You always have a big plan... bigger than anything we can understand... a perfect plan. I trust You. Carry all of us in your hands... And forgive all our silliness... Amen.

Merry Christmas! And a Happy New Year!

Them Bones

2011-12-17T22:49:00.001-08:00

Letter from Santa!

2011-12-16T09:10:00.000-08:00

Meeting Scuba Santa at the Acuarium!

2011-12-14T13:15:00.001-08:00

On Tuesday, we made it to the Adventure Aquarium at Camden, and we all had a blast! Since I would not have class on Tuesday, we made the perfect comeback after two years! And the bonus was that I got to meet Santa! Can you believe this? That was awesome! He was scuba diving with an elf in the shark tank! Talk about being a daredevil! This is a day I will never forget! Here is the pictography, so you all can share my day! Enjoy!

Entering the coral reef

Life beneath a "mangle" (how much I miss home...)

Tropical fishies

Animals in the mangrove

Shark maws

School of fishies

Another coral reef shot

Willie the Alligator (16 feet long, 550 pounds)

Me touching a starfish

Me and Daddy

Santa saying hi to us!

Santa and Elf scuba diving

Kali enjoys the show

The shark tank theater

Santa's chair

With Rudolph the Red Nosed Reindeer (who happens to be very polite!)

Birds...

Two troublesome hippos

Kali loved the hippo's fishies

The sea is an immense dessert where man is never alone

Kali stalking more fishies

Jellyfishes

Mommy and Kali in awe

Shark ate Kali and Daddy...

Family at the shark tunnel

Daddy enjoying the sharks

Friendly sharks crossing

Kali ate food...

Me with Mommy while eating my lunch

Kali is done... Time to go home.

It was cold... But what a beautiful day!

Nurse Mashaelia smiling and ready to suction!

Philly in the back

Me, traveling in style! And more wrapped than a burrito!

Xmas Breezes

2011-12-12T19:54:00.000-08:00

Christmas is here, and you can feel the ambience shifting from hurried gloomy to laughing nothings and glee. Not that I am complaining... in the middle of so much chaos and daily mayhem is good to see that something can be strong enough to make people lighten up at least for a while.

Last week I had my synagis shot and pneumonia shot. Hopefully that will help me avoid the dreaded RSV and sicknesses that go along with Winter season for so many kids... and that can be fatal to kids with my condition. Some of my peers have been sending many messages regarding how to ward off these, prevention being the number one concern among the SMA community. It is something not to be taken lightly... a simple cold can kill us. I understand how serious things are, and so I try my best to stay away from the cooties. By now I only have two constant nurses, and my three constant therapists. All know the rigors of the privilege to be in my presence!

I am happy to announce that I finally have an official OT from the Department of Education. She did the meet and greet on Friday and we really expect big things out of her as she comes in blooming with ideas and perspectives. If this works out I will really be able to say I have the perfect team that will make me soar. Right now I have excellence at my side: my teacher, my PT, and my SLP. I'm looking forward to fun and even more growth. I am also happy to announce that I was finally approved a new headrest and collar. After almost two years of so much struggle, I hope that before the end of the year I can finally have the proper upper support that I need. Mommy got the call on Thursday afternoon. One battle down... Many others on the list, but at least I'll take a moment to do a happy dance over a sombrero. Yay!

During the past week I've also been visited by some new friends from a nearby church. The leading pastor passed by as they held an activity on Saturday and they were inviting families from the community. So, they knocked in our door and then they met me. Last Saturday they passed by with one of the activity's photographers so I could be part of the whole thing from home. I really appreciated all the attention, and all the good vibes. So many people pray for me! And so many people help me, one way or another... God keeps on holding me tight, looking out for me and my family.

Today I did not have class so I enjoyed the day revisiting Nemo and Ariel. I'm happy and I am wary of all the special things happening around me. Mommy keeps on being busy writing and calling people, and Daddy keeps on with orientations and straightening out paperwork. I don't understand much of what they do, but I now it gets tough and all they do they do for my sister Kali and for me. And as long as we are all together, everything is just fine.

So... With pasteles (my RT brought some for Mommy and Daddy), some pumpkin creations and plenty of Christmas music from my little island (Mommy is a sucker for the Tuna de Cayey group) I can definitively say I look forward to a week of adventure, preparation and expectation for Santa's visit, New Year's eve, and then for the Three Kings day. One of the best things of being Puertorrican is that our Christmas last until mid January! We always have so many reasons to celebrate! Me, I celebrate because I am alive and I know my dreams will come true... Mommy always tells me there's nothing I can't do. And I know she tells the truth. I have faith and belief on my side, and the right people around me.

GOD: I think always of all the kids that I know that are in the hospital, fighting for their lives! Thank you for allowing Mary to go back home, please help MJ so she can finally beat up all her cooties, and help fix Gabbie's heart so it gets strong and she can go home too. Thanks for making Ally and Stella better. Today I also ask You to give baby Sophie big kisses for me, so she keeps smiling up there in heaven. Thank you for surrounding me with love, for protecting me and my family, and for always making Your presence known in so many ways. Amen.

My Wishlists for Christmas Gifts

2011-12-05T01:19:00.000-08:00

Yay! It's that time of the year, again! And I know Santa is checking up his list... I'm trying to make his life easier (and that of family and friends) by suggesting fun stuff that I like, and fun stuff my little sister would like. Fun stuff is found on wish lists in Amazon (listed below). This is all books, toys and dvd's.

Click on the link to reach the Wishlists:

Toys for Deedee in Amazon.com
Books for me and my sister
DVDs for me and my sister
Toys for my little sister Kali in Amazon.com

I am all about Kailan, Disney Princesses (especially Mulan, Pocahontas, Rapunzel & Belle), Disney Fairies, and arts & crafts (sequins, mosaics, beads). I love pop-up books with passion! And I am a girly-girl with attitude. Love purple, black and shocking pink... and razzle dazzle. Size 6 in clothing, 10 in shoes.

My sister loves Pocoyo, Blues Clues, Bubble Guppies and Yo Gabba Gabba. Loves orange and bright pink. Size 2T-3T in clothing, 6 in shoes.

If you want to help me with the really expensive stuff that I need for my daily care & quality of life, go to the Help Us section of this blog. It may not be fun stuff, but I do need what is listed there...

Have fun, Santa!

:)

Thanksgiving

2011-11-27T14:49:00.000-08:00

This year we had a cozy Thanksgiving day. Mommy and Daddy prepared a cherry chocolate cheesecake and a Virginia ham with Mommy's special family heirloom recipe. From what I could smell, it was all very yummy! I just got a taste of the cherries, but it is all ok. Surviving the Tiny Terror (my little sister who has a knack for taking off my mask) is priceless.

It was a great day that ran smoothly. I spent the time watching Bubble Guppies and Pocoyo with the whole family. Mommy put up the Christmas tree and Daddy watched Kali so she would leave me alone... Sometimes too much love can really hurt!

Mommy kept on hovering over me, finishing my nails and fussing with my hair. I have to admit that I like this shimmering hairband very much. Always a diva!

My sister was very inspired by the songs about bones, and so she started joining the beat with her drum... I just wanted a bit of quiet, but... I guess that will happen when I go to my haven... I'm trying my best to be patient and follow the Golden Rule here... Bear with me!

So... Food, music, kiddie shows and much love within my small family... No complaints. I have been blessed in so many ways! I am happy. How I couldn't be? I'm surrounded by love.

God: Keep on taking care of us all. Thank you for Your blessings and for Your love. Amen!

Disney on Ice

2011-11-22T22:12:00.001-08:00

Last Saturday I went to Disney on Ice with Mommy, Daddy, Kali and Nurse Marie. It was fun! I loved the trip, the princesses stories(of the three stories Tangled is my favorite, and to see her flying and doing so many amazing things was priceless), and the ending. Wow! Fireworks! I've seen fireworks on TV but never in person! They performed Princess & the Frog, Cinderella and Tangled. The first two were ok, but not thrilling. Now, Tangled was really magical. The flying hair, the flying act, the flying lanterns... Wow! I really hope we get to do more stuff like this, being careful of course.

Here's a peak of us during the intermission.

It is a short movie... Mommy forgot to take pictures, and Daddy has to shake less when using the cam. :P But the important thing is we had fun as a family! Yay! Another silver lining in the middle of our chaotic life.

My Sequined Art Project: How I do it

2011-11-15T20:53:00.000-08:00

Some people wonder how I do my sequined projects... Here's a glimpse at what goes on "during" the making of sequined, mosaics, or any art project requiring little things to glue. Notice Mommy maneuvering my hands, obeying my mental commands!

Playing Bunny Videogame With Proximity Switch

2011-11-15T20:51:00.000-08:00

This is one of my favorite video-games. It is called Tossing Carrots. Here you can see how I use my proximity switch while playing. Enjoy!

Permobile: 1st Trial Power Wheelchair

2011-11-15T20:45:00.000-08:00

I went to the SMA Clinic today, and tried the Permobile powered wheelchair. I loved it! Here's what happenned...

Museum, Tooth Fairy & Some Suspense

2011-11-15T12:24:00.000-08:00

Wow! Middle of the month... And it all has been crazy. Nurses don't want to come to my house thanks to our location, my insurance messing up an x-ray plea among other things, shots to keep me healthy, museum visit, and even a visit from the Tooth Fairy! Never a dull moment.

Let's start with the good and positive. Last week I went to the Newark Museum last Wednesday and saw the Seven Wonders movie. That was awesome! I loved the graphics and the details... but I especially loved the Space Seven Wonders. It felt as if I could touch the galaxies! And I love space so much! I just don't get tired of it. Before the movie I revisited the Tibet exhibit, and after the movie we explored the Science exhibit. My sister was intrigued by everything, quiet and being attentive. Mommy and Daddy paced themselves, and we all had fun. I love the museum. I wish I could come more often... This bad weather jinxes everything!

On Friday, I went to get an x-ray so my pulmo could check things up from inside out. Well... The trip was fun, as we all had to battle the wind gusts and then some... We arrived and I could not get the x-ray as now I need a referral for this... The new rules to get stuff are beyond tight with the insurance that I was forced into, and Mommy is getting tired of so much fighting for the basics that I used to get without any problems... So we all forgot about it and headed home as the day's weather was bad and the tempers worst.

During the weekend Mommy arranged some videos for me to watch, and I love them! There's a bunch of people reading books in You Tube, and they show the books and pages while they do so. I definitively enjoyed that, some reminded me of my friend Roxy. I love books. I hope Mommy takes a cue from that, too... It would be nice to have her "on demand" whenever I want to listen to her telling me a story. Hint, hint Mommy! She also meshed the old ABC videos with concepts and songs... really smart Mommy, like I was not going to notice that double agenda of yours! Hmmph!

It was the Witching Hour between Sunday and Monday when Daddy discovered something in my mouth! Actually, something getting loose in my mouth... He called for Mommy and after a small pull that I barely felt it was completely out! My first baby tooth to fall! OMG! I am getting so old! Daddy told me that the Tooth Fairy would visit me... I was so nervous! What do you wear for such an event? Then he told me I had to be asleep, with the tooth under my pillow, and then in the morning I would get a present in exchange for the tooth. And so I woke up very excited on Monday, to find out my little tooth was still there, along with $5 and a little note "For your scrapbook". Awww... How did she knew?

On Monday I also got an unexpected gift, my PT brought me a bed table. Yes! Now I can watch my movies, videos, or play video games without straining my neck! And now I have a place to play some table games too. It definitively makes things more easy, and my legs are no longer crunched between pillows, princess table, books and boxes. Oh, the sweet comfy simple pleasures in life!

And with that good thing came a bad call, something about insurance denying the headrest, collar and stroller for me... because I already have seating alternatives at home. Mommy got so angry! Me, I had to laugh at that... sitting alternatives... Well, I have my wheelchair with the wrong headrest for me that leaves my neck crooked... and the collar that floats around my thin neck (big safety placebo)... Oh, I also have the sofa and the mat in the floor... both very ergonomic you know. And I always have my bad and its thousand positions...

Sigh... Apparently the guy that came over to evaluate me saw a stroller (my baby sister's) and thought it was mine just because it is Pepto pink and black like my wheelchair... Mommy straightened the details, and hopefully things will go back in track... Can you believe that just a year ago, this same month, Mommy was arguing with a PT about the headrest and the collar... same ones... Can you believe that everyone keeps dodging the ball on the things that are very wrong with my manual wheelchair... a fact that has been ongoing for almost 3 years? So many visits to PTs... so many evaluations, so many "sending the wheelchair for update"... Ugh! We are all done with it. By now, I don't care much about the stroller, just FIX MY FRIGGIN WHEELCHAIR SO I CAN USE IT SAFELY! Headrest and collar, please? THANK YOU!

There, had to get that off my chest. People, I just don't want to break my neck, and I want to have safety while being transported in a vehicle and while I am in my wheelchair. The stroller... is an emergency needful thing, not luxury. If I don't have my wheelchair because it is in repairs (like so many times before... and it takes weeks for it to come back), then where in blazes am I supposed to be seated? You know, the bed gets tiresome after so many hours (make it years) laying on it! It is really frustrating for all of us... Mommy just hopes that we get rid off the manual wheelchair blues and my next needful thing, the power wheelchair a.k.a freedom a.k.a new legs for me, comes with everything I need so it is one less battle... within the war to actually get the power wheelchair.

Today I got ready to go to the SMA clinic and have my yearly checkup. Hopefully, the added meeting with PT and Permobile guy will be a positive one. I am really looking forward to that! Daddy has a cheat sheet to ask the right questions, and a videocam to bring home the evidence... Mommy just doesn't give him a break! Well... Wish me luck!

God: This time I give you thanks for true love. Many people go through life without knowing what that is... I live within the boundaries of true love, because of You. Thank you for such a precious gift. Amen.

VIDEO ABOUT MY DONATED VAN:
Here's a video of the donated van, so you guys can see what I got. Daddy filmed this just before my first official outing on it! It took a whole month to get the paperwork together, and then wait for me to be completely healthy... and then wait for the weather to be ok... It was definitively worth the wait!

Princess for A Day

2011-11-01T15:41:00.001-07:00

Who said Halloween had to be over? Well, I knew Mr. Farina will keep on telling me some Halloween stories, so I dressed up accordingly.

To everyone's surprise, I decided to be a princess. I know, that thought is weird enough, but princesses can be tough too. Looking pretty, being tough... sounds like me! Daddy glammed me up with some of the bling that I wear on special occasions: The D necklace that my friend Pat gave me for my birthday, the bracelets that my friends from the pediatrician's office gave me, the dolphins bracelet that Mashaela gave me as a birthday present... Everything was perfect!

I had the dress, and the accessories, and I was happy with that. My teacher arrived and we had fun reading some stuff... To my surprise, Daddy went out in the morning and arrived with this beautiful crown. Gotta love Daddy, he is the best! That was definitively the finishing touch!

So... Crowned and ready to charm the world, this princess decided she deserved a nice movie marathon as a reward for her flawless school action!

Carry on!

HAPPY HALLOWEEN!

2011-10-31T08:33:00.000-07:00

This year I am channeling Pocahontas, from my head to my toes. Halloween has been great this year! I've got some treats and I didn't have to go out in the snow! Oh yes, there is snow... There was a snow storm two days ago... The gods must be crazy, huh? Anyway, my teacher got me these awesome glow in the dark thinguies and a spooky ghost! Way cool! And my PT got me some Tink and Ariel stuff as gifts. I am having a blast! And as you can see, I am all dressed up as one of the most far-out princesses. Pocahontas is the best! I love her so! And I hear rumors that maybe Daddy will also play chief of the tribe latter on! We'll see what Mommy comes up with for her and the Tiny Terror... It's all about surprises!

These past days have been spooky. I guess we are all into the Halloween vibe... Not! Well, I've been okay, doing what I do... I discovered this video game on Internet and I am so hooked on it! It's called Turtle Crossing, and I have to make a tribal guy cross a river by jumping into turtles... I love it. I've been using my proximity switch to play it, and there has been no frustrations whatsoever (well, a bit while I find the right position but then it is all well). So now I have a balance between movies and games. There are other games, but nothing compare to the tribal guy... I go nuts for the music.

Well, besides that positive fact, the days have been spooky as I've been without my day nurse for the whole past week. No word whatsoever about what's been going on... It just seems that whenever I get attached to someone they vanish. And it seems only Mommy and Daddy and the Tiny Terror are the people immune to that spell. I never get answers, it is just what happens. And it sucks. Plain and simple, it sucks. It is very early in my life to actually try to connect the dots and understand the reasons... Really, too early. I don't understand. I keep getting hurt. People just vanish and don't think at all about how I feel. People don't even say a proper goodbye. I don't even know is it me... Why the people that makes such a big difference in my life are the ones that suddenly go away without a trace?

I am sad. I miss the people I love. Life has never been easy for me... But I know I will go on. Life goes on. There is good, and there is bad... People come in and teach lessons. They think too fast or move too fast and they do not see the important things in life... People no longer take the time to make a real friend. They trust everything that they can touch and that brings them what they want... yet they forget that what they need is mostly invisible to the eyes. I see what is wrong... I see hearts that are damaged, and need much love to recover. But they don't let themselves be healed. I see all this and it makes me sad...

I may not know much, but I know that there is something about the Golden rule that is very true as well as there is something about love and kindness that is priceless. People are fast to live life and judge and make big deals out of nothing... I look into people's eyes and I see enduring pain. I am laying in a bed, unable to move... yet I am free. When I look into people's eyes I see frozen lives, frozen hearts. It is sad. It makes me sad... I reach out but they never see me... And they keep going away.

I go deep into my thoughts, and I find peace. I don't have much, and for many people I don't do much... but I have a high regard of myself. I try to live every day following the Golden rule. I try to make my parents smile, as well as I try to make my teacher smile... my therapists... even my kitty. I hope that I also make God smile.

I am blessed. I am loved by my family and my friends. I know that somehow I make a difference and I will not be forgotten. It hurts whenever someone I love goes away, but I know that somehow I changed them forever. If little me can be a fighter and smile, so can they. That may be the gift that I give them.

So... The past days have been all about me: My feelings, my education, my assistive devices, my needs, my wants, my people, my services... Mommy and Daddy make such big fusses about everything. Life is so simple: Just love. Without expiration dates. Make someone happy... and then you will be happy too.

God: Take good care of everyone that has known me. Keep them close to Your heart and protect them always. Keep on blessing me and my family. Thank you for the few good people who never give up when it comes to me. I am deeply grateful, and always humbled. Please look out for Brianna, MJ, Tabs, Lucy, Ally and Mary, and so many other kids that are sick or have gone under the knife. Grant them health. Carry them in Your arms. Amen.

Autumn Rolls In!

2011-10-10T16:58:00.001-07:00

I am amazed at the things good people can do. September was quite an eventful month... and I definitively learned that it does pay to be good. Bad things happen and we all wonder why, but even more good things happen at the same time... It's just that the good things are left unspoken, and only the bad things get voiced. This is so wrong! I was so sad and shocked that my van was stolen, but then someone comes in and gives us something better and more useful. I am happy that now I can have more choices in where to go as I have a secure transport and secure accessibility and safety. I have not been able to go on a first trip yet, as my parents have been handling the paperwork for the van's plates and insurance. Still, I know it is a matter of days for me to have that first trip in my new van! I can bet my first trip will have something to do with visiting either the Museum or the Zoo. And then I hope we can make the trip to visit Mr. Bussani and Mr.Zarba (my new friends from Bussani Mobility who donated the van)!

It's been exciting. Mommy has been taking care of all my affairs, making phone calls and setting words into actions. I need a new headrest and collar so my wheelchair is actually safe (gosh, I feel I sound like a broken record whenever I mention that... Yes people, the headrest and the collar is a still going issue). At least now both are in process. CMC Seating & Homecare is in charge of that, and they promised to flag these as urgent. Hopefully we'll have better luck now! This time I should get a Savant Headrest and a Headmaster Collar. I expect them to be my right fit. I know that with the Savant headrest I will have my head completely secured when traveling in the van (which definitively makes me happier). Also, a stroller is in works as well by the same company. My PT has pointed out the importance of a stroller as a backup for the wheelchair (in case it gets damaged) as well as since the wheelchair cannot go into just any terrain. I am aiming for a EasyS stroller. Fingers crossed on that matter.

Besides these items, I should be getting power chair evaluation and trials very soon. Mommy contacted vendors from Permobile and Invacare. The tech guy from CMC said he'll contact them as well to see if things could speed up. Since I have an appointment to see my medical team at the SMA Clinic in mid November, mommy contacted the Permobile guy and he will be available that day at the clinic to do my evaluation. I'm happy the first step towards real mobility and freedom has finally been scheduled! I mean, let's face it, for me time is the most precious of things and I was supposed to have a trial for power wheelchair last year! I've heard so many excuses about it! I will go on from a blank page so I only have positive things to discuss. Mommy's new motto is: “No complaining, just take action”.

I am a bit disappointed at my overall services. Now from my two nursing agencies I am down to one only. The good news is that at least now they do have another nurse besides my Teddy (Masheila). So now it is all about my Teddy and new Marie. Still, I miss my Russian connection and my crazy Texan a lot. What can I say, you are responsible for what you domesticate (said The Little Prince). I have heard so much about the area where I live being dangerous at night, and about how some people are not comfortable with my daily care. I understand so much more than people credit me for... Yes, the area is dangerous and Mommy is very unnerved by it... but we all just have to hold on and believe things will get better. We won't live here forever. Somehow, someday, we will go move to a safe house with a small backyard with roses and sunflowers... And who knows, maybe I'll be able to have a small butterfly house and we will all be able to bring mommy's cats to live with us (Mommy has 8 cats back at home in Puerto Rico, and she misses them so much)!

And about my daily care... (Sight) When will people understand that I am alive thanks to that care that they dread? It was not something mommy and daddy made up, it is something Dr. Bach created, put to practice, and it is something that works for me. I follow NIV, non-invasive care using bipap ventilator. It has its perks and its hindrances, but it is all following doctors orders. If something endangered me, Mommy and Daddy would not approve of it. I know some things are scary for whoever does not understand all the processes, but I am not scared of it. It saved my life 4 years ago. It continues to help me be healthy. And when I an sick, NIV is difficult but it works in time... with patience and diligence. My care seems easy at first glance, and I seem to be so strong and well... but I am fragile and in order for me to thrive in life I do have to go through my routines in sickness and in health, no exceptions.

I am deeply sad that I give my heart to all who get to know me, and then it gets broken each time someone departs reason or no reason. It all makes me tougher, and wiser... It all makes me appreciate those that love me so much even more! I constantly see people coming and going... I wish I had friends coming here to see me and talk to me and joke with me just because they felt like it. But... I understand. I love. With time you just learn to smile when you look at the stars because in a far away planet you know there is someone that you domesticated... hidden, far away... but there. And I know that if I feel that way, they must feel the same way about me... They must smile when they think of me. See? I understand much more than people think.

October arrived, and I'm so excited at everything my teacher, Mr. Farina, has been completing with me! Love these projects. I love dissecting the sunflower, writing my name with beans, the countdown for Halloween, the pumpkin project, the monthly calendar (of course)... We have been quite busy! I can't complain from my school time. My PT and my SLP are excellent. I just hope that they get to finally send an OT so I can get to complete more of my goals. I had also heard at the end of Summer that I was going to do some Skyping with the school, video-conferencing with the kids at the PK classroom over there... I was quite hopeful for that. I don't know why that tech project has not begun if all was setup. Ah, public services and their hicups! I still keep my hopes up. Mommy has never let me down, and I know she'll make things happen like magic. She's a witch, you know?

I completed two more projects of my own. I created a razzle-dazzle sequin under the sea seascape complete with glitter and some googly eyes. I also completed a bat to hang from my bed. I guess the legacy from the Camp at the Museum is that now I am more crafty!

I also got my last vaccine shots... Dr. V says my next vaccines should be when I turn 11. I also got my flu shots. Dr.V is not too convinced I'll get the Synagis shot, but they are waiting on insurance to see what happens. I have a dentist appointment next week. I gotta try to make all visits before our complete outings shutdown (when cold weather comes in and snow stops us until Spring). Sinus pressure is beginning... as usual. I just hope Autumn stays a bit longer, not just two more weeks!

So... That's all folks! I had action, drama, suspense... Many things running, many things to do, much love to keep giving. Life is a constant gift, a constant miracle. God is definitively the Master Artist!

I've Got A Van!

2011-09-26T17:41:00.001-07:00

Wow! This is AMAZING! There are no other words to describe what happened today! There were many phone calls, I heard something about going out (and of course I thought "yeah, right")... And then I saw the WPIX van, and the Help Me Howard crew! Right here in our parking lot! And they were not alone, they came with our new friends from Bussani Mobility Team... They all surprised me with an adapted van!

I could not believe my eyes! Flashes from everything that we went through in our old van cluttered my head, but then I saw that someone was inside the van... And as he demonstrated how I could simply wheel my way down easily sliding out I almost screamed with joy! No more drama about the wheelchair being loose inside, or jumping in the back of the van in a carrier (true story when we were towed back at the Museum... we thought the window would not make it!). And no worrying about the snow! And the ramp... it is attached, and it is powered! I smized with my eyes as I saw a burgundy bundle of opportunities right there in front of me! All this for me! I mean, all this for my family! I see that what I read every night, about being kind and following the Golden Rule, and about the good things that happen after many hardships is true! Each day I am more humbled and more amazed with all the miracles that happen around me. All that, plus now I'm a local celebrity too!

Here's what happened, as it was broadcasted in the WPIX NY news at 5:00pm in the section Howard's Helpers. You can't miss me getting my van's keys!

So, even if I am at the beginning of carefully monitored outings and the soon to come mandatory lockdown that SMA kids get when Fall arrives and lasts until Spring decides to melt away the snow, I know that I will get to experience new adventures as I have not experienced them before. I just know that the Holidays are going to be even more special this year! All thanks to Mr. Bussani, and the good people that gave their time to help me... and my family. And of course, thanks to Howard!

And a note to God: You always go beyond and above for me. Thank you for taking care of things when my parental units reach the end of their rope. You are truly the friend that never fails.

"Do not withhold your mercy from me, O LORD; may your love and your truth always protect me."
Psalm 40:11

Help Me Soar!

2011-09-18T14:54:00.000-07:00

Mommy created this account so people who want to help me get some cool but expensive stuff can make donations at will. It is through FundRazr, and using Paypal.

This is the button to get there. Here goes:

Help Me Howard Spreading The Word!

2011-09-18T14:01:00.001-07:00

Last Thursday was quite eventful! Howard Thompson, who has a segment on WPIX called Help Me Howard (and is quite a local celebrity) came to visit me! He interviewed Mommy and Daddy about my stolen van and about me. That was so cool! On Friday night I was the theme of his segment, and he asked his helpers to help me! Hopefully someone will be moved to do so. I'm happy that at least someone tried getting our voice out. It may be really hard to get another van... and even harder to equip it again with everything it had, but at least I feel my family didn't went down without a fight.

Here's Friday's segment:

Howard also wrote in his blog about it all. Check it out:
Help Me Howard's Blog

So... I am crossing fingers that yet another miracle happens in our lives! Because yes, bad things have happened to us, but the miracles are daily.

Family

2011-09-16T22:52:00.000-07:00

Just me, and Mommy, and Daddy, and my sister Kalisto. Always together, through thick and thin! And I wouldn't have it any other way.

Mosaic Project Finished!

2011-09-13T16:35:00.001-07:00

My godfather bought me a kit for doing a mosaic, but since I was sick I had not been able to tackle that project... until today! I actually began yesterday, but was too tired to go beyond just doing the body of the butterfly. Today I finished the butterfly, the snail, the bumblebee and the worm. Looks awesome, yay!

It was a bit hard to get the right angle so Mommy could help me maneuver my hands to catch all the little colored foam pieces... We mastered the art of mosaic! We applied glue dots on the specific areas, that was fairly easy. We tried using a tweezers to grasp the little squares but that was quite frustrating... In the end, we used a pencil. We would pat the eraser in a bit of glue, then "fish" the mosaic piece. Great idea! Painless, fast, and fun!

Here you can see the unfinished piece... the bad light doesn't help (I don't get how Mommy stands that yellowish light). See how it all started to take shape? I confess I was skeptic, but the background music helped me concentrate on the task before me. Mommy was surprised at how I was paying attention. Of course I peaked every now and then to see if the TV would play a show I like... but I did focus on the project and I was eager to finish it completely.

So... Here's the final outcome. After doing this craft, Daddy took me back to my bed and Mommy placed my art work in an orange background. It really pops! I love bright colors! And I definitively love how this turned out.

I'm still waiting for my classes to begin. At least I know my teacher will be back... I just don't know when. My SLP called and should be back by the end of the month. My PT will also be back, and a new OT will begin somewhere in time. I'm just glad I have some projects to complete... Now that I'm warming my engines, I should go on to do a sparkly sequin project that my Godfather also got for me. And then, to the big project: The Solar System! Mommy got me a Solar System for my birthday so I could paint it and hang it over my bed, but I was too sick to even bother looking at anything... I am glad I am back in action!

It's good I have things to take my mind off the stolen car event... No use on dwelling about the bad stuff, I know good stuff should happen to me especially if I keep on being positive. I may not get what I want, but I always get what I need. Amen to that!

My Car Was Stolen!

2011-09-12T09:56:00.000-07:00

I had no idea of what was going on last night when Mommy and Daddy were going crazy making phone calls... Today I just heard the news as they were talking to my nurse... Our car, MY CAR, was stolen! It's incredible, unbelievable! The car was parked just in our designated parking, behind the apartment. No one saw anything... And mind you, I say it is my car because the reason my parents got it was to be able to take me out in selected safe rides.

They had bought the mini van, a white used 2000 Caravan, they got the U-Haul and a wheelchair carrier... Inside the van was my safety seat-belt ties which are expensive as they are special ties (I cannot be seated so I must travel laying down, these special ties go holding my body in place)... Also inside the van was my sister's stroller, my sister's car seat, two of her favorite toys and the brand new emergency battery charger. All the stuff inside ads up to $1,500. The van was $2,3000.

My parents had moved heaven and earth, saving a lot, to get the van and get it fixed so I could ride safely. It was my van by all means... I feel so bad I just want to cry. They just got the van 5 months ago, at the end of Spring. I went to the Museum's camp thanks to having it... This is so crazy! It was obvious the van belonged to someone with special needs... The handicap sign was in front, hanging from the mirror. The wheelchair carrier was on the back, joined to the U-haul. Everyone in the street saw us coming and going for 6 weeks... Everyone knew who I was. I feel so sad beyond words. So much sacrifice, and this happens!

My parents mentioned the car had no theft insurance as it was pricey, so it is all a loss. If the police find it, then we have to pay for a tow... money that we don't have. This is so messed up! How can people be so evil, specially in these days that so many natural disasters are going on and it is obvious we should be in the right mind of helping one another? I don't understand this... I really don't.

So... Now all that is left to do is see if the van turns up... But that is not likely. Who knows where it is...

God, I know things happen for a purpose... I don't understand why must we go through so many hardships in a row... but it is all in Your hands. I know You must have a bigger plan... I know in the end, good prevails. Keep blessing us with love and health, which is the most important thing of all. Amen.

Getting Better

2011-09-01T11:54:00.000-07:00

The very rough days are behind me... FINALLY! It has not been easy, but I am getting better. That is the trade-off of my SMA condition, any simple small cold takes two to three weeks to get off me. I was lucky that this was just that, a simple cold. I did not end up in the hospital thanks to my caregivers who by now know what to do and do everything fast and furiously!

Right now it is past midday and I am chillin' here in bed. I'm watching the BBC Planets series again (I watched all episodes last week and I loved it). Right now the first episode is ending... I love the planets. I know this may sound so old school, but I would love to be an astronaut! Space: The Final Frontier!

Anyway... Being sick has been too rough. What really makes me mad is that I could not spend all the time I wanted to spend with my Godfather... I was looking forward to him reading me some stories... Hmm... Maybe he can do just that through video-conference! Just like the e-message I got from Santa Claus, he could read to me that way! I am such a high-tech geek already! Hahaha... That will have to do, but I hope he comes back soon. Face-mail is better than any other kind of mail.

I'm always with Kailan and Ming Ming, and Thinga hangs around ready for emotional support (or actually for supporting my bi-pap cables, Thinga and the doggie are very good and handy for that purpose). My way of escaping it all is through my beloved shows... Thank goodness for Wonder Pets, Kailan and the Veggie Tales! They make all these discomforts and treatments much more bearable.

I have not been able to read much or do any projects. The respiratory therapies leave me quite tired... so it's either watch a TV show, a movie, a documentary, or sleep. At least I am definitively feeling better, so it has been two nights in a row that I sleep mostly well (I get interrupted for respiratory care anyway, but I barely realize it as I am in deep sleep). That is definitively good news. Rest is mandatory for recovery.

And I better recover within the next four days! School should start next week, and I don't want to miss a thing! I'm looking forward to many projects and artistic creations. I am eager to apply all I learned through Summer and to learn much more! I'm crossing fingers so the cooties go away as fast as they came!

GOD: Thank you for taking care of me always, and for guiding my caregivers and doctors so I get well soon. I know I must have patience, and I know that I have to take each day one at a time. Protect me and all who are around me. Thank you for always providing for me. I cannot complain, You give me all that I need and You surround me with peace, and love. I ask you to take care of so many kids and families that right now are dealing with serious illnesses and situations... grant them all serenity, courage and wisdom. Carry us all in your arms. Amen!

My Turtle Tuck

2011-09-01T11:41:00.001-07:00

This is the turtle that I got as a birthday gift. I named him Turtle Tuck, in honor of Tuck from the Wonder Pets. It is very small, just two inches long.

It has a long neck! Most of the time it entertains himself taking his head inside the shelf, then outside, then inside. He's so funny!

He may be small but don't be fooled by its size! It has razor sharp nails! I felt him running in my hand and I definitively didn't like that. Too cold, wet and sharp for me. I rather watch him while he's inside his home.

Daddy says that Tuck can grow up to 11 inches if given appropriate habitat, food and love. I hope I get to watch him grow. It would be nice to get him a bigger place... I'm making plans to do so. He's a handsome turtle!

In a week and a half...

2011-08-30T12:35:00.000-07:00

Camp is over... now what? Well... I prepared myself for a spectacular experience! My birthday! And it came... My Godfather came from Florida, and we celebrated with those who care so much about me. There were many plans laid out for the next two weeks, as I wanted to do so much before classes started! Well... As the saying goes "Uno propone y Dios dispone" which translates to "one proposes and God disposes". All is summed up by three things: Earthquake, Hurricane Irene, and illness.

EARTHQUAKE
Well, nothing so big here in Newark but big in terms of it never trembles in NJ. It was all over the news, people were really scared... Big drama for a whole week. The good thing is that everyone got to revisit the what do do lists that prepares in case of a quake... The bad thing is that people got to extremes... I know that I was born in an island that shakes a lot. What we felt here was nothing compared to what my folks have experienced. In a way it is good that my folks know how it feels and what to do... but here the "natives" became headless chickens for a while.

HURRICANE
Hurricane Irene... Just by saying Hurricane should suffice. Here in NJ nothing mayor has strike since 1936... So... Coast and areas that could get flooded were evacuated, and it was mayor pandemonium. I got scared because of my specific need of constant power for my ventilator and pulse oximeter... But God kept me safe, and thanks to Him we didn't get flooded and lights were not out in our area. We know many people suffer many damages, many areas got super flooded and electric power is down right now in nearby cities... My parents say we were lucky Irene was Cat1 going into being a Tropical Storm and taking to land... They say it could have been beyond dangerous for us if it had stayed Cat 2-3. I hear their tales of Hurricane Loiza, Georges, Hugo, Hortense... and it is all very scary. I am thankful and grateful that everyone we know is safe. God is good and merciful.

EVIL ILLNESS
Me being sick... Ugh! It all began a week ago with what seemed to be a stomach bug. I had a bit of bile coming up when my nurse suctioned, but after Pedialite and Tums my tummy got better and I had no reflux at all (which is my normal). Well, a day later I started to have a high fever, followed by high numbers in my oxigenation and heart rate. After that, it all has been awful! I've been fighting off this bug since last Wednesday, started antibiotics on Thursday, and even saw the Hurricane Irene come in and go during the weekend... And I am still sick. I know that for me a simple cold is a two to three week nightmare, but come on! Mommy and Daddy considered taking me to the hospital on Monday, but then I did so good during the day that the idea was put on hold.

Luis, the RT, came in on Monday afternoon, and after checking me up withdrew the possibility for pneumonia and just reinforced we should just keep up with what we are doing. So... I get respiratory treatment every four hours, and saline nebulizers before them. Plenty of percussion and CPT followed by cough assist and deep suction sessions. I get so beat after all that! But I know I need them, so I don't even complain as I usually do. Daddy got n touch with the doctor during the night to follow up on me. I'm still in close observation... My home is run like a hospital. I'm glad we've stayed, I get some real cat naps between the sessions.

By Thursday it will be the 7th day... on Sunday it should be the last day for antibiotic. I hope by then all this ickyness and crazy stats will finally subdue. I need to get ready for next week! I'm looking forward to the new school session. My favorite teacher should be back, and I'm looking forward to trying out the video-conference with the school. I hope things don't get shady... Mom and Dad are doing their best to try setting up all my services as I rightfully deserve.

Today my Godfather Steve goes back to Florida. I am so upset we could not hang out as we planned! I've been sick in bed more than a week, so all the projects we had planned went down the drain... I will try completing some by next week (like creating the solar system, and doing a mosaic picture... and a sequin art project...).

At least I got to hear him sing me the "Cheki Morena"! Now THAT was priceless! Don't worry Sti, I will complete them in your honor. And you better get ready to chat with me through video-conference too! Don't think that out of sight, out of mind. I may be a diva, but I have a heart too. And we all love you very much! You have not gone and I'm already missing you...

So... As you all can see, my life keeps on having quite some action, adventure, and drama! It is all as good as it can get.

GOD: Thank you for keeping me safe while all the chaos has happened around me. Thank you for blessing my life with people that really cares a lot for me. Thank you for protecting all of us through this bad weather, and for protecting so many families through the storm. Take care of everyone who needs you. Let no one go hungry or be without shelter or be alone... Thank you for carrying me in your arms always, sustaining me with your never-ending love. Help me overcome any obstacle, grant me strength, health and courage as always. Amen.

VIDEO OF STEVE's LAST DAY WITH US

MY 4th BIRTHDAY!

2011-08-20T00:00:00.000-07:00

This has been my birthday bash celebration week! I've been loving it! I do have to mention that the whole camp thing was a big birthday present. Besides that, the awesomeness of this week began on Monday with the arrival of my Godfather Steve! It's been 3 years since he last saw me in person, and that last time was not pretty (it was in the hospital back at home in Puerto Rico). Imagine his surprise when he saw how big I am! It's been fun having him around. He talks a lot, though... Would you let my nurses work? Sheesh!

Mommy worked on painting some Veggie Tales pirate decorations Monday and Tuesday, and almost had a heart attack when NurseInna made one fall into the floor with her gust-of-wind powers. That was hilarious (well, not for Mommy, but for us). I just know we had lots of laughs on Tuesday with the improvised pre-birthday gathering that was quite a happening. NurseInna came in to visit, brought Tiramisu cake for the local adults and two cute calm framed photographs she took herself. Our "green" acquaintances dropped by by mistake (also hilarious)... It was a full house so suddenly! Then the door kept ringing with people asking questions. It was all amusing.

Anyway, here are the decorations outcomes:

Here are Captain Sweetpea, Princess Laura and Larry, the Legendary Cucumber!

Here is a Pirate that don't do anything, Jr Asparagus, King Bob and Queen Blueberry!

A full size shot of the whole decor... These were big ones! Awesome!

The big day arrived on Wednesday 17th! I was ready and perfect with my colorful hairdo (thanks to Mashaela and her friend Peanut!). I stood in my stand, and rolled into the living room! This year the theme was Veggie Tales Pirates Who Don't Do Anything and a Princess. The top 10 countdown ran with its music for various times. I did not mind, I love the silly songs! The living room was filled with balloons with eyes (I'm guessing veggie people) and two murals with my main Veggie Tales friends.

The cake was so pretty! It was in purple, blue, pink and yellow with lemon filling. It had big flowers that were delicious! I got a little concerned when it's candles were lit as it looked like a small fire hazard... but I knew Mommy & Daddy would not let anything bad happen to me so I tried to relax.

My two grannies and my great-grannie were here through the phone, and so the candles were lit and I heard everyone singing the birthday song for me! I loved it! I made a big wish, but I'm not telling what it is... like Cinderella says, if you tell your wish/dream then it won't come true. I really want mine to happen!

After the cake there were presents. I absolutely loved turtle Tuck! I have my own pet! Feeling him in my hand was... weird... and wet... but I love him anyway. I hope he gets to grow big and bold. I also got some movies about animals, a planetary system craft project, a flower pot, and of course books about animals and their habitats! I also have a new scrapbook so I can put inside it all of my first preK projects so they do not get lost or damaged (I'll make Mr.Farina proud!).

I'm so happy I got so many good wishes from so many people! This was a very special birthday, each day I feel I am surrounded with much more love!

Now I have a few projects to complete before classes begin... I hope my Godfather can help me complete some. I'm definitively getting the crafty bug! I'm making a pirate ship with Mommy's help, but that's not done yet... I need some rest, after all I had quite a Summer!

Here's the video of our celebration:

Wish from Lynette:Viva la Deeva!!!

"Hey Deedee, it's a little after midnight and you have just turned four. That's an awesome number. You've earned your ranks among the big kids now. I remember not so long ago, we were all praying hard for you to make it to one and then two and then three. Each celebration though happy, was met with a little apprehension. Until one day we started realizing that God had a great and wise design and he meant for you to live life to the fullest and for us, who have been blesssed to meet you, to have the rare opportunity to witness a miracle.

As I said before, you have barely crossed the treshold from baby world to big kids and yet you have touched so many, earned love and respect, all while building excellent reputation as a big sister...believe me that is quite the responsibility!!!

Hmmm... since four is a magic number, we might as well make something of it. Somewhere I think I read that really cool kids actually get four wishes... so wish away sweetheart and surprise us with all you'll grow up to be."

Wishes from Angela & Heather:

GOD:
Thank you for allowing me to be happy and surrounded by love. I have much to praise you for... and much to give thanks for. You know my heart of hearts, and how grateful I am for the change You gave me to live. Help me do the best with all the talents I have, help me make a difference in each person that one way or another reaches me. Help me be an instrument of your love and peace. Grant me many years to come, and the courage and strength to face any challenge and prove that nothing is impossible as long as You bless me with your presence. Hold me tight in your arms, and protect all of those who need you. Amen.

Getting Ready for my 4th Birthday!

2011-08-16T09:46:00.001-07:00

This year the theme is Veggie Tales Pirates & Princesses. We won't be able to try telecommuting with PR, but we will get our main people by phone so they sing to me!

If you want to, send me video birthday wishes to my direct personal email:

deirdremedina@ymail.com

I want to actually see you all! I'm looking forward to seeing & enjoying your videos!

I am very blessed, and I know it. I recall that when I was 4 months old the doctors told Mommy & Daddy that I would not make it. But they did not give up hope, and they did everything they could to save my life. Many people helped, too, with so many sincere prayers! And guess what? Miracles happen all the time, you just have to really believe and keep a keen eye... Here I am, four years later!

I can do all things through Christ which strengtheneth me.Philippians 4:13

I know how SMA makes things difficult for me, but I keep on fighting because difficult does not mean impossible! I can do EVERYTHING in a different way. I will go on, fighting one day at a time. I know odds are against me, as I am one of those precious exceptions... but I don't want to become an SMA angel. I still have much to share with the world, much to create, much to learn, and much to teach to people too. I trust God will keep on acting through me, and that I will get to reach out to all those whom I can help.

The LORD is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths
of righteousness for his name's sake.
Yea, though I walk through the valley
of the shadow of death,
I will fear no evil:
for thou art with me;
thy rod and thy staff they comfort me.
Thou preparest a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.
Surely goodness and mercy shall follow me
all the days of my life:
and I will dwell in the house of the LORD for ever.
Psalm 23

And this year I also have a special treat: My Godfather flew from Florida to see me! Now, is he the epitome of awesomeness or what? I know he's preparing something out there in the living room... I hear he's helping Mommy. And NurseMashaela brought over a lady to do my hair! Wow! I'm getting all glammed up! I can't wait until tomorrow!

This year EVERYTHING have been very special. The kids at camp floored me with their kindness. It's like my celebration is going to continue for more than a week! God has been too kind to me. I am so humbled! And so happy!

~

6th Week at Camp: Egypt

2011-08-13T14:22:00.000-07:00

Well, this was the "last day of" week for my Summer schedule. First, this was my last week of Summer School. I got really upset at that, but I know that my favorite teacher will be back for the next school session that begins on September 6th. Then, it was my last week of Camp at the Newark Museum. This week the focus was on Egypt. Little did I knew that a small celebration was brewed in my honor! Oh, but I will say the details below. Right now, I just want to thank my Godfather, who sponsored this last week at camp. My camp weekly video is at the end, as usual.

Monday began as a lazy day that went on being fast and chaotic. I had my morning class, I went to camp, and I was overall in a good mood. My school teacher was proud of me as I paid attention to everything he showed me. At camp I learned what Egypt is, and I painted two pots (later on they will become an Egyptian jar). The kids were all rambunctious... What to do with the boys? I was thinking of tying them up as mommies... it is Egypt week after all... In the end I was so surprised that they actually went to sleep very exhausted! I was just glad I could finally take a nap.

On Tuesday my morning class went on swiftly... I heard the rumor that classes are coming to an end... That made me upset. I cried some, but then I was rushed to the museum so I could go to the Planetarium show. Well, at least that definitively put me in a good mood. I saw this show some weeks ago, Magic Sky, and I was eager to revisit everything I learned. Mr.Moon is so silly! Then we went into the Egyptian gallery and saw a mummy's sarcophagus and some jewelry, pictures, and statues. Mommy was in heaven, she loves anything Egyptian!

Wednesday was my last day of Summer School. During the morning Mr. Farina came in with a surprise! Since he cannot come next week to celebrate my birthday, he brought in a cupcake with a candle, and two big balloons! I loved the balloons! And I loved when he sang along with Mommy and NurseMashaela! All this attention is awesome! But then the news came in that he would not be around until next school session in Fall. I was so upset! What! Fall! That is so far away! Mommy tried to convince me that it's just two weeks... but I still think that it is just too much time. I miss my teacher already! In the afternoon I could not go to the Museum... Since the car broke down, it was being repaired. The suspense of what will happen was killing me! Imagine, I already knew I was an important character in the camp's play, I could not miss the performance! I managed to take a long nap in the afternoon, and when I woke up Mommy told me the good news: The car was repaired and ready to roll next day. I just know that at night I kept waking up with nightmares... maybe because of all the stress about the car and my teacher... Mommy calmed me down and slept with me for the night.

On Thursday I woke up late, everything was done late... My speech therapist arrived but had to wait until I was ready. Then I was in no mood to do anything... Hey, I had a bad night and then waking up early after so much missed sleep was not easy at all! At least I got to watch Lion King, which lifted my spirits. Then I got ready for camp. There was a group photo session when I arrived, and as they took the picture of me with everyone they all screamed Happy Birthday! Wow! That got my attention! I felt so happy! I even actually looked at the camera, "smizing" as hard as I could. After that, we went to the Auditorium to practice the play... it was hilarious. What to do with the kids... We girls do what we should, but boys will be boys... They kept running and chasing each other and not paying attention. I admit it is funny to watch, but I get worried... after all, I want it all to be perfect! When rehearsal ended we went up to the classroom. I finished painting my scarab and then had a small nap. When I woke up daddy made sure I had my food, and everyone got ready for snack and going home. I had to complete three projects: I had to paint my name in Egyptian, I had to do the head of the body-parts jar, and I had to help Mommy do my Isis tiara. As the song says, two out of three ain't bad... I painted the name ovals in purple and stamped my name on them. I also painted the animal head of the jar (Mommy did the head with clay, I am NOT touching that icky stuff again!). I fell asleep, so Mommy took care of my tiara. She followed my diva wishes: Sparkle, sparkle and more sparkle!

On Friday I arrived to the classroom and my peers were preparing for the play. The light was really bothering me, so Mommy put a hat on my face so I could calm down. She was also assaulted by the kids to paint their faces. It was a good thing that she remembered she still had the black makeup crayon... Everyone got Egyptian eyes! We got dressed up and ready to go! We went down to the Auditorium and it all began! We started the show as usual, and when our part ended... Oh, my! The kids had put together a birthday surprise for me! I looked around and saw them coming towards me bearing gifts, cards, and singing along with everyone in the theater! I felt so overwhelmed, and happy! I had no idea they would do that! Mommy came to me so she could let them know how I felt... Happy, of course! Duh! The show went on and at the end, the weekly slideshow was dedicated to me! Wow! They went to so much trouble to make me feel special, I was floored with so much love. When the slideshow was over we went to the special floor to break a piñata that was filled with goodies. And so was the end of it all. Here's the video for this week:

Many people wished me health and many birthdays to come! And saying goodbye was hard... I will miss Mrs.Melody and her art crafts, especially her creative hats! And I will definitively miss Elena, the twins, and Ronald. Each week one different kid joined us, and our class had no dull moments! I'll make sure I learn my planets and most stars, I plan to keep visiting the Planetarium through the year (that was my favorite activity, I enjoy stargazing so much!).

This ends my weekly summary about the camp and what I did there. These past 6 weeks have been the most amazing weeks of my life. I honestly did not thought I would be able to go somewhere and do what other kids do... Everyday I was reminded of how special and kind people can be, and how much I actually impact those around me. Everywhere I go I try to make people understand that I get things, that I really want to experience life, that I can do anything I set my mind into. Doing all this crafts with my own hands and learning about so many different cultures was fun... I feel I traveled the world! And I really hope I can do this again, next year. I made some friends and I want to keep seeing them! May God grant me that blessing as well.

So, I will be 4 years old in 4 days... I am so happy that many blessings keep coming into my life! I keep growing, and I keep amazing people. Most importantly, I keep being an instrument of God... So He works through me. And I would not have it any other way.

~

5th Week at Camp: Native Americans

2011-08-05T16:32:00.000-07:00

This was another busy week! Between summer school and summer camp and crazy therapies I barely have time to breathe! I'm happy about this, though. I never imagined I could do so much! There's nothing like the simple things in life... This week at the camp was sponsored by my godfather. I know I can always count on you, Uncle Sti! This week's theme was Native Americans Heritage. I learned a lot!

Monday began as a hectic day. NurseMashaela was sick, and everything ran late. At least my personal slaves pulled through and so I was ready for my class and for camp. At camp, this was supposed to be American Heritage or American History but in the end it was changed to Native American week. We started out dealing with clay... to make a pot... Ugh! Gosh, why me? I absolutely hated dealing with the clay. My hands got all reddish, my clothing got clay dust on it, even my neck pillow got clay! And the smell... Yup, I could smell it. No, I did not enjoy playing with clay. It is worst than play dough! While the kids napped I saw that the assistants were cutting out shapes from white sheets of paper... but I fell asleep to wake up and have a walk in the garden. Monday was a cozy, quiet day.

Tuesday was a galactic day. My school teacher brought some books and some videos about the Universe! That was so exciting! I love anything that has to do with the stars and with galaxies! He showed me this big book about the planets... I could not get enough of it. In the afternoon, I went to the Planetarium and guess what? The movie was about two kids exploring the planets! What a treat! I recalled everything Mr.Farina had said in the morning. Yes, it was all true. I went out of the Planetarium trying to figure out just how I could get int space. Mommy told me that now there are no more flights at least for a while... Ah! Maybe I can study hard and become an astronaut, and then I would go to space as I re-open the American space quest! We boricuas make the impossible a possibility. After the planets, we went for a short walk into the gallery. We went to the Native American gallery and explored their ceremonial clothing and many pots.

On Wedmesday my teacher brought another book, this one explaining everything about stars and galaxies. Now I know what is a black hole and small white dwarves, and I am very certain I know how the big dipper looks! And NurseMashaela came back! She was sick the past two days. I'm glad she's better. I missed her silliness. In the afternoon I went to camp but I could not stay. Two kids were very sick and I had to go home, just in case. I did not get sad, I used that time to have a very nice nap!

Thursday started out with my Speech Therapist early in the morning. He is very silly! This time he wanted me to make funny faces... Well, actually we made some faces that sent him messages about what I wanted to do and how I felt. I can tell anyone yes or no, but now I know I can say whatever and I don't know, and make a very important command: "Turn the page"! Well, it is important to me anyway... I love books, so... yes... this is very important! Anyway, back at the museum we try rehearsing the play for the end of the week, and we did some weaving with paper. I made a nice weaved rug with colorful pieces that my friend Marguerite gave me. It was difficult to cut the main big piece, but Mommy helped me and together we conquered the paper monster! I liked the outcome. We went to nap, and since I didn't felt like painting my pot or creating my tipee I had to take them home. At night, I did some stamping on my tipee and then Mommy helped me to paint some Native American images. I painted the pot red, so it would dry. I went to sleep with images of good glyphs on my head!

Today, I had a fun speech therapy session in the morning. Oddly enough, my therapist brought over a talking toy with details about... the planets! Coincidence? This has been a far-out week! My PT brought over a guy that measured me. Now they will try to keep fighting for a headrest and a stroller... and then for an appropriate wheelchair. He suggested the Solara... Hmm, talking about planets and me... In the afternoon there was no "serious" show so I went straight to my museum classroom. We all got our faces painted, and went on to the show! My group performed a Rattlesnake Dance. We spinned round and round and made sounds with maracas and jingles. That was so much fun! Each time I love the stage even more. From here to Hollywood!

Here's the video for this week's performance. Enjoy!

GOD: Thank you for allowing me to do so many things all these weeks. I know I am fragile, but I fear nothing as I walk under your shadow. Thank you for keeping me safe, and for allowing my new friends to heal fast! Please help everyone that needs You, as there is nothing impossible for you. This week I pray to you for the fast recovery of Kimmi... Help her, as you have helped me. May she be surrounded by love at all times, and may angels guard her always. Amen.

AUGUST is SMA AWARENESS MONTH! So, I got home and then realized that it was time to make a stand! And so I did!

MAKING A STAND!

This month is SMA Awareness Month. And for today, and every Friday of the month, I will stand with so many others for the SMA cause! Here I am, standing just as I arrived from my play. SMA is serious business. It is a killer that can touch any family. Join so many families to battle SMA by sharing awareness and helping to fund this cause. SMA is the #1 killer of babies, and is the reason why I cannot walk, sit, swallow, lift my limbs or hold my head. SMA creates massive muscle weakness, it is degenerative and it has no cure. I am an exception. I have beat the odds and doctor's predictions... But still, I need a cure.

I want to sit. I want to jump. I want to run. I want to talk. I want to breathe on my own. Help me beat SMA!

At the Firefighter's Museum

2011-07-30T12:05:00.000-07:00

I visited the Firefighter's museum right after the end of the 4th week at camp. Since I always loves to take a stroll through the garden of the museum, by now the garden is our mandatory stop. We were lucky to have a lady guard ask us if we wanted to go into the Firefighter's exhibit as it has an accessible ramp. Of course we said yes!

It was interesting to see so much historical stuff gathered in such a small place! And how the balance of old versus new is kept. One side has the old gallery, and the other side has a fire truck and an entrance to a kitchen and living room which mimics with clever effects a fire and what to do or not for safety. The interactive "show and tell" definitively grabbed my attention! I even got a bit spooked!

We were in love with the carriage... although we can imagine that it must have been really hard to actually fight fights effectively back then using this... There was a 911 memento that speaks for itself. Also many badges showcased in the wall... And a circular life net, which reminded me of Dumbo and when he was asked to jump to save his life... Ugh! I would be so scared and with vertigo if I had to do such a thing!

I enjoyed herself. Mommy asked me if I wanted to be a firefighter... I opened my eyes and said a big NO. That is just too dangerous! I am definitively not attracted to flames. I really admire firefighters... their job is really hard, and they do something very important. Saving a life is priceless. But the whole thing scares me so much!

Our visit was a completed mission, so we all gathered our stuff and went home. I was excited at everything we did, but also very tired... So I was glad I could catch some Z's.

Here's a video of our Firefighter Museum visit:

~

4th Week at Camp: CUBA

2011-07-30T10:58:00.000-07:00

This week went as a blink... My life is going so fast that it all seems a blur of memories! I discovered some facts about the Caribbean, the Taínos, Carey turtles, and the music with "sabor". I also went to a doctor's appointment, and had my usual schooling at home. This was a fast, happy week filled with excitement and drama. This week's camp at the museum was sponsored by my friends from Georgia (Kara & her family), and my friends from Tampa (Lynette and her dad). Thank you all, your kindness is making a big difference in my life!

On Monday I had my morning class and Mr.Farina was pleased with my attention and overall interest in all he did. I am really unwinding when it comes to books! I love books! In the afternoon I went to see my new endocrinologist. It was a funny trip... at the endocrinology clinic they wondered why in blazes I had been "dissected" because there is nothing wrong with me. They checked me up, agreed I have some pre-puberty traits but that so far nothing is wrong with me. They'll check up all the scans that had been done previously, and if they find anything unusual they will contact us back, but all they expect is nothing. So, the doctor say to not come back! I LOVE those words. I wish I could hear the same from everyone.

Tuesday I started my morning routine, had my class, and got ready for camp. I arrived to discover that this week would be all about Cuba and the Caribbean. The classroom was chaotic, the kids definitively were a bit too eager (or had too much sugar). I was glad when nap time came, my ears needed the rest! I painted a picture frame purple, and help cut a turtle shape. I also created a flower stem, it is supposed to be an orchid... later in the week we will do the pot for it. I also visited the Planetarium and watched the movie that they were showing that had Big Bird talking about the stars... I liked the movie. It mainly says that no matter where you are from on Earth, we all look at the same stars... By now I really REALLY know where the Big Dipper is. And I don't get tired of watching the night sky. I wish I was home so I could do this for real, not watching the sky through a movie projection...

Wednesday I had a great morning and was in high spirits to go to the camp. I really missed my friend Elena, she didn't come today. I completed another craft, putting seashells in the frame that I painted on Tuesday. The kids decorated the flower pot for the orchid but I did not want to do it, so I took it home. I spent the afternoon watching everyone and I wanted to leave a bit earlier to go to the garden. That green spot at the museum is really becoming my favorite place to be, I love the trees and chasing the squirrels. I've been observing how they are gathering nuts... Summer is here, but they don't stop their work of gathering food for Winter. We have much to learn from squirrels.

Thursday morning my speech therapist came in and we had an intensive session using the Tobii. Afterwards, NurseMashaela helped me complete the flower pot for my orchid, and then we went to camp. I left my orchid in its pot in the classroom's show & tell table. Everyone was gathered somewhere for rehearsal, but when I reached the place the rehearsal had been cancelled and it was back to the class... This week was very chaotic in every sense, but I didn't care. I love going everywhere. The teacher told me that they had visited the natural science exhibit in the morning to visit the cave, and so I went on to do it as well. I suspect caves was part of the whole Caribbean theme... Back at home we have very deep caves in Puerto Rico (and actually some of the longest underground caves/cavern complexes in the world!). I saw the cave and a short documentary, loved the glow-in-the-dark minerals, hated touching the fossils... And as a treat mommy took me to see some live bees! I love bees, Mr.Farina told me everything about bees, and watching them live and in their honeycomb was such a treat!

Friday morning I had another intensive session with the speech therapist, who seems to be very pleased with my progress. My physical therapist came, we tried a new headrest on the wheelchair but that was a big fail. I was so scared I would not even look to the sides! So... Another headrest will be tried later on... as usual... What to do... In the afternoon we went to the museum and watched the serious Cuba and Caribbean show. There was a live band! The music was awesome and lively, but I confess it tortured me a bit... I really dislike percussion instruments. They bother my ears a lot. For my class's show we went onstage and we shake some maracas! Mommy taped many maracas to my wheelchair, and so I ran all over the stage shaking my 8 maracas! I sounded like a hurricane! For the rest of the day I was Hurricane Deedee! After the show I wanted to go have my afternoon stroll in the garden, but as a treat I visited the Firefighter's museum. That was fun!

Here's the video for the show:

So, summing things up, I keep on learning and amazing everyone. I do make some things difficult when I want my way, but hey... that's why I am a diva, right? I'm glad about the whole museum experience. I have gotten to know new people, and the kids are hilarious. I just don't get tired of watching them. I may be quiet, but my brain is going thousands of miles per hour! So much to do before Fall arrives! So much to embrace and feel! I wish time would stop and let me be...

God: Thank you for keeping me healthy. Thank you for watching over me and allowing me to go and see the world! I know this is just a glimpse, but it is so much! I never imagined I could go beyond my little universe within four walls... I thought I would have to conquer the world always through a looking glass... Thank you, God, for being so good to me. Keep me in your arms, and keep everyone who surrounds me safe. Please give strength and courage to all who face so many hardships... Bring healing to all who are sick, and fill out everyone's heart with hope and Your love. Amen.

~

3rd Week at Camp: TIBET

2011-07-24T10:21:00.000-07:00

Wow! This was a very hectic week with action, adventure and drama. At home, the week was filled with activity and wonder. This week the theme at school was Amusement Parks! My teacher brought in some books, images, and created an interactive multimedia experience! I went into a ride through the Six Flags demos, and loved the Green Lantern experience! I don't know if I would REALLY get on it (it looked a bit high...) but the speed and the wind would be something!

My therapists came in and I am showing off how I select colors with my Tobii. I also make certain that the new SLP gets acquainted with my family by watching the slideshow. After he does, then we can do whatever he has on schedule. I was a bit disappointed that the PT did not have my new wheelchair headrest this week, but she made it certain that next week she will have it on Friday as the assistive technology guy will come with it.

At camp, I discovered Tibet. I found out where Tibet is, explored a Tibet exhibit at the museum, and created some Tibet-oriented crafts. I discovered the importance of tea, the traditional festival, Tibetan attire and colors (red, yellow and deep blue), and their spirituality through meditation. It was an "enlightened experience". This week was sponsored by my friends in Tampa: Lynnette and her father Antonio. Thank you guys! This was a virtual far away experience!

Monday was a laid back chaotic day. The theme established at school was amusement parks, since that's one of the places people like to go to when they are in vacation time. It all seems interesting... At camp, they began the Tibetan week explaining about Tibet's location, high in the mountains, the people, and their use of bells. When I arrived we went to a gallery walk and we explored a Tibetan tent, clothing, and teapots. While the kids napped, I painted a bell in copper color and the teacher's assistant gave me a briefing about what they discussed of Tibet in the morning. She read me a book, too. After that I just wanted to watch the kids and rest a bit. When I went home I fall asleep quite fast.

Tuesday was a day of running here and there. In the morning my class went on without any drama, but upon heading to the museum it was obvious we were late and we did not arrive on time so we missed the Planetarium... So we waited in the classroom until the class arrived. Turns out we would have missed it anyway because they went in earlier than usual, and they had also walked the gallery. I tried to start the day's project but I just settled for watching the other kids nap. I was mad and frustrated and cried for a bit... Mommy gave me the "big girl" speech again... and eventually I stopped. The new project is creating an offerings box, so I had to paint a box and decorate it, so then I can put something I really value inside. Tibetans leave these offerings at the temples. I was about to start painting but I changed my mind. I let Mommy know I wanted to do that at night. She scolded me for that, but I did not care. Besides, I prefer to watch what the other kids do... I can paint and decorate the box later when I'm alone in my room... And so I did. Nurse Carol did not come for the whole week, so Mommy helped me with the crafts. That was an added plus... I always treasure spending time with Mommy.

Wednesday was an interesting day... Something happened and everything got late during the morning. My nurse could not arrive, Daddy did the respiratory therapy and bathed me, my teacher had to wait a bit until that was all finished... But in the end the day was not so bad after all. We kept discussing rides at class, and I experienced some thrill rides through videos and demos. After that, Mommy and Daddy prepared Kali and me and we all went on to the museum. I stayed inside with Mommy while Daddy was outside the classroom with Kali (although he came in and out to check just in case). When I arrived I went to my Planetarium special appointment. That was a blast! I enjoy so much watching the stars! And I keep learning more about them! Mommy was just happy because she says the voice of the narrator was that guy, Ewan McGregor, and she loves him. That was a long show, and when I arrived to be with my classmates they were ready for a nap. I just watched over them, Daddy gave me food, and then Mommy read the Tibetan exploration book to me. That took care of my doubts about the costumes and I learned about the crops and animals they use for trade. Soon the day ended, and I went home. I had a long nap upon arrival! The heat outside has been unbearable! Mommy has not been able to take me for a stroll around the garden of the museum just because of it.

Thursday was a tiresome day. My new SLP came early and we worked on my use of the screens... Commands, commands, commands... When will people get I do what I want when I want? Well, after a bit of fooling around I comply to work some, and showed him I know how to use my colors screen. After that I took a small nap, and was ready to go to camp. Over there, we practiced our play in the Auditorium. I found out I would be the dragon! So my craft for the afternoon was to my dragon headpiece. I gave my nurse and mommy a small scare as my numbers went down because of a piece on my vent that broke... but I never feared with my team around nothing bad would happen to me. Nurse Mashaela found the piece in my bags, mommy made my numbers go back to normal with swift ambubag action. Since it was all hardware issues, I had no issues. Life goes on. After THAT show was over, I gathered all the stuff needed to complete my projects, waited a bit until nap time was over, and went home.

On Friday morning, my SLP came in early and gave mom a briefing on what we have done so far. I overheard that mommy may be adding some screens to my communication device soon... and that I will get to know verbs close and personal! My PT came in and we did our usual exercises. I got ready for action and headed to the museum. When we arrived we went straight to our classroom, but then discovered that two kids were sick, so we had a slight change of plans. Mommy took me down to the Auditorium and I enjoyed the "serious" Tibetan show while the kids upstairs finished some crafts and prepared for our show. Daddy and my sister Kali met me at the Auditorium, and all were very surprised at my keen interest in Tibetan music. While I watched the performance I was paying keen attention to the guy and his song... Nurse Mashaela found it funny and got sleepy in the way, but I loved the show. I didn't fall asleep at all! Some of the kids from another class got to know about me, and they will be praying so there is a cure for SMA soon! They want to see me standing and running! And you know what... I am happy with what I have, but my deepest secret wish is to stand and run too.

By 2:30 my classmates came down, I dressed up as the Rainbow Dragon and went on to meet the on stage. The power ramp was misbehaving a bit, but finally cooperated to let me through. I went on and met my peers on time. That was so cool! I crossed the stage side to side three times, and each time I crossed they would change positions... I think they were doing some yoga demonstrations for meditations... After the third stance, it was a wrap! I faced again the wrath of the power ramp (and won the battle), and went back to my favorite place in the back of the Auditorium (I can see everything very comfortably from there).

I kept on watching the whole show until the end. No sleep this time! I certainly loved the Tibetan theme. At the end of the show, we went up to see the exhibition of our artwork, but the hallway was completely packed. Since I could not go into the classroom because of my nemesis (germs) I had to stay in front of the Buffalo until my emissary brought back my crafts so I could take them home. With that, I said goodbye to everyone and went home.

So, the week ended and the weekend arrived. I am beat! A two-day weekend is not enough to gather strength! What were they thinking when they created weekends? Saturday went away in a blink, and now Sunday is almost over... At least I can't say I am sad or bored... I have met new friends, and I keep on experiencing the love of so much people! The biggest blessings are indeed the simplest things in life!

Next week I have an appointment with the new endocrinologist on Monday, and on Tuesday I'll be back on camp to learn about CUBA!

God: Thank you for taking care of me and of those who are around me. Thanks for so many good things! Grant me strength and courage, so I can go on as I have so far, and use me as You will. This time I ask you to take care of so many kids around the world that don't even have a mom or dad, and that fight for living on their own... Take care of them as you have taken care of me. Let them find shelter and food and love. Open the eyes and the hearts of so many to make it so... Amen.

2nd Week at Camp: AFRICA

2011-07-15T17:03:00.001-07:00

This week went so fast! I have a new therapist (he is Bruce, the SLP), and my teacher brought the beach to my house (this was beach week for my Summer classes). I replanted my bean plant and discovered that the worms I had inside it have babies! Now I have a worm family! I also played with rocks and seashells, and saw a lighthouse replica. Did you know that the aquarium that I made has real sand from Venezuela? That is awesome!

I tried the camp during a morning to have the whole day experience. That was a flop, too long in that wheelchair and much frustrating... The movement and dance class unnerved me but I tried my best to stay cool... Mommy had a long talk with me about it and I will be a big girl and not cry (I was that frustrated!). I focused on my crafts, and learned a lot about animals, tribal stuff, and I got in touch with my African ancestors. So, as you may have already guessed, this week's theme at the camp was AFRICA. This week was sponsored by my friends in Miami: Mariana, Ceci and Alexandra (codename Terroristas). Thank you, team! You rock!

DAY 1: TRIBAL MASK & RAIN MIMIC
Monday was a crazy day. My teacher had a suntan! I enjoyed hearing about his beach adventure, then reading about the beach and underwater animals. During the afternoon we went to the camp and the kids were playing and being silly. We colored an African mask, and with that the theme for this week was set. The mask had to be brown as it was to mimic wood, and later on we would decorate it with magic modeling clay! I like coloring, but I was tired and I fell asleep. So, I napped, and then Roxy read everyone the book about an elephant that fall in a well, and how some animals pulled and pulled and helped it come out of the hole. That was a nice story. She announced that this week we would do something with that tale... The afternoon went on smoothly, I painted the base of the rainmaker too, and then I arrived home to nap some more!

DAY 2: TRIBAL MASK & MANY TALES
I had class in the morning, so I was happy and ready to have fun outside. This time Daddy would take me and stay for a while, since Mommy was taking a driving test. I had high expectations of watching the movie at the Planetarium, but... we arrived late. And since Daddy did not know who to call, we missed that show. I was so, so mad! I cried and cried and cried! Mommy arrived, and I kept on crying. While the kids napped, Roxy came to read to me, but I was so mad that I just kept rolling my eyes and looking away. Mommy talked to me... serious business. She said that if I did not pay attention to Roxy the story would end and I would do nothing else for the day because I had no reason for being disrespectful. I thought she was just teasing me... So Roxy read, I looked away, Mommy asked her to stop and I was left without knowing how the book ended. I also cried myself to sleep. I should have known better, Mommy always means business... she has absolutely no tolerance for tantrums...

At night she gave me a serious talk: If I misbehaved one more time I would stop going to the camp. I promised to be a good girl, so I was granted one more chance. She says I am a big girl, and big girls respect everyone and follow the Golden rule. Mommy had brought home the tribal mask and some corn beads, so I helped her to complete my mask project before going to bed. I am not thrilled about sticky stuff... The magic clay was a pleasant surprise: Non-sticky! I loved it! It was fun to do the mask's nose.

DAY 3: TALES, PERFORMANCE PLAN & BEADED NECKLACE
The day began with quite a bang! My new SLP, Bruce, arrived at 9:00am. I put on a good face. I am trying my best to listen to Mommy's advises... Doing my best, being obedient, doing unto others..., being respectful, listening more... I am really trying. So, he arrived, then the old SLP arrived... Then my teacher and his supervisor arrived. What a full house! I must confess, all the attention put me in a good mood. The meet & greet went well, I showed them all that I can use the Tobii when I want to. I also heard a new OT is coming soon... Oh, gosh... My calendar is beyond full! So, I replanted my bean plant and I found that now I have a family of worms! The baby worms tickled my hand! That was so cute!

At the museum, I arrived in time for many tales. Roxy asked if I was going to be in the play, and I recalled I had said yes to Mommy. I was so apprehensive of that... last week I did not want to participate, but I said I would give it a try. I spent most of the afternoon listening to books. I especially enjoyed the Very Hungry Caterpillar, and the encore reading of the Elephant and the Well. Elena also help to read the story about a dolphin. When I arrived home I asked Nurse Carol to read to me some more stories. Each time I enjoy reading more and more!

DAY 4: ENERGY AND A RAINMAKER
Thursday was a long day! After my mandatory therapy we arrived late to the Museum... fist thing that went wrong... Since I had to have my feed, I had to stay stuck eating while the kids went out to a class in the Auditorium. When they came back it was time for the Science session. I liked the themes: Energy, water energy, wind energy, solar energy. This is all second nature to me, Mommy and Daddy talk a lot about it. The problem was that I got really upset as I could not run in place to generate heat like the others... That really got to me. I was so frustrated I got lobster red as I was so mad! But Mommy helped me understand that I shouldn't get upset. I may not be able to run in place, but I can outrun any of them in a race! Just wait until I get my power chair (yes, because with Mommy pushing I'll get nowhere... oh, sorry Mom! You know I love you!). So they performed an experiment with water, it moved a bottle that had straws. I took a straw out, then pushed it back in. When I saw the water falling and the bottle spinning I understood the concept... and I stopped being so upset. The kids then did the beaded necklaces and I helped one of them since I had already completed that project.

By midday I went with Mommy and Nurse Mashaela to the Garden, and we got a spot under the shade of a tree. We listened to the Jazz music, and I have to say that I like the piano but I dislike the cello and the drums. My friend Roxy was there, along with other friends. I had a good time enjoying nature... there was a blazing sun but a cool breeze. We came back inside to the Auditorium to do a rehearsal of the play. It was fun to use a power ramp! I am becoming a technology junkie by the second. I was not sure of what to expect, but I had the feeling that it was all going to be all right. We all had fun. We went back to our classroom and I fell asleep quite fast. By the time I woke up, the lights had just gone out (my peers were napping)... So I watched how Teacher Melody was creating our animal head hats, and I helped Roxy to paint my elephant hat. I went home too exhausted to even think!

DAY 5: THE ELEPHANT & THE WELL
During Friday morning things got quite hectic. SLP Bruce came and we had a session filled with me practicing concentrating on my targets (in the Tobii) and trying to find the best position for me. I was beat and had no time to catch my breath, my PT arrived just as he finished with me! This people won't give me a break! After she was gone, I helped Mommy to complete my tribal mask doing its earrings. Finally, I gave the rainmaker its final touches: a beaded tail and my hand prints in turquoise. Cool stuff.

I arrived at the museum and then began the quest to look for my group. I thought there would be a small rehearsal, but no... What we knew was it. Elena kept me company for the whole afternoon. I like her, she's silly. We went to the Auditorium and we performed our play. I was the elephant. It was all hilarious. Mommy was happy because I didn't got bothered at all. I loved it. I'm thinking this may be my calling... Daddy was there with Kali to enjoy the show as well. It was perfect. Afterwards I needed lots of consolations because I just wanted to keep on being at the stage, but I know... next week I'll have another opportunity to shine. I really missed Roxy. I hope I get to see her soon. No one tells stories like she do (sorry Mommy!).

So, it is Friday night and I am beat! This week has been full blown moving here and there, and people everywhere. I look forward to a nice, quiet weekend filled with movies and maybe chillin' in the pool. Life is a dream!

GOD: Thank you for all the blessings you have given me, and that you continue to bring. I have learned about some friends in Russia and in Argentina that really need your help... Bless them as well, so they can thrive in your Love, Compassion and Happiness. Grant us the resources so we can try our best to reach out and give them some peace. Hold them in your arms, as you hold me and my family. Amen.

~

My 1st Performance

2011-07-15T16:55:00.001-07:00

For the Camp performance of this week (the theme was AFRICA), my group brought to life the tale of The Elephant and the Well. I played the elephant who got stuck in the well, and my peers were the animals that came to the rescue and pulled, pulled, pulled!

Rock-Pushing Diva!

2011-07-12T16:10:00.000-07:00

My mighty, mighty thumb is strong enough! This is only the beginning!

My Daily Routine

2011-07-12T11:06:00.000-07:00

For anyone who wonders, my day begins and ends with a certain thing: Respiratory therapy and Beckman Oral Therapy. Here's a glimpse at both. The Spanish version of this explains everything, I made it a year ago... If you are interested, you may check it out in my videos (check the upper menu). This 2011 version is to show you all what I do in the morning, and how much time the whole process takes after you are used to it. Enjoy!

Part 1: Respiratory Therapy
I wake up at 7:00AM and I get an hour of percussion, followed by CPT (as needed). After that hour, in which I get percussion vibrations on all quadrants of my chest (two in front, two in my back), I get cough assist and deep suction (3 sets of 5 rounds of cough assist, the suction is before and after and as needed).

Part 2: Beckman Oral Therapy
When my official respiratory therapy is over, I get some serious mouth muscles exercises. Usually it takes 15 minutes.

After all this, I get a bath and get all glammed up. So each morning I am ready to face the world after a two-hour preparation.

All this process is repeated at night, starting at 8:00PM. The only difference is that I change the bath for my bedtime prayers, and then get ready for bed. When my goggles cover my eyes I know there is no turning back, it's sleeping time!

And there you have it, instant healthy and ready for action diva!

My 1st Week at the Camp

2011-07-09T22:37:00.001-07:00

Well, I started camp at the Newark Museum and all I can say is that it's been awesome! Getting out has been a big hassle and lots of headaches for Mommy, Daddy and Nurse Masheila, but it all was performed with success. I arrived safe and sound at the end of the day, and so precautions prove to be very effective. I have been a handful sometimes, but hey, I have a reputation to maintain! I'm a diva after all!

This was mostly warmup week for everything. Daddy is perfecting the art of carrying me, and we have figured out the best logistics to put things inside the car (including my baby sister, my nurse and my wheelchair). Mommy ordered a hitch and a wheelchair carrier that soon will make traveling less stressful and top safe... Masheila grew extra arms and legs defending my cables against the elements and the other kids! I tell you, it has all been an adventure! And there are 5 more weeks to go!

I'll tell you what I did every day, so you don't miss on the juicy details. By the way, this past week's theme was India. And I gotta thank my sponsor for this week, my friends from Puerto Rico: Carlos & Elayna! Thank you guys! I am very grateful for this big gift! I learned a lot and I tell you this is the fourth time in almost 4 years that I go out of my house and is not for medical appointments! I'm even getting a sun tan in my face, arms & legs!

WEEK 1: INDIA
I discovered the beautiful and mysterious India. I listened to its music, and learned about its culture and beliefs.

Day 1 TUESDAY JULY 5th

I was a bit upset because I had no class in the morning (what can I say, I am a big fan-girl of my dear teacher!) but I tried to put on a good face and went along with the show. Mommy and Nurse Masheila stayed with me at the Museum. I met the kids, and did my first project, a peacock (which is India's national bird). We went to the Planetarium and watched a movie in the giant dome! Wow! I want one of those! I imagined watching my Wonder Pets in such a screen! After the movie about the planets and their weather, we saw the current position of some stars. I knew about the big dipper and the little dipper... but then I learned about Cassiopea and where Scorpio the teapot is.

After that we went to a room while the other kids napped in the classroom so I could do the art project of the day: a henna hand. Roxie, the afternoon project leader, showed me some pictures about India and I let her know I knew what the Taj-Majah is! Then she traced my hand, and help me color it as if in a henna pattern. Way cool! We went back to the group room, watched the other kids finish their nap and have their snack, and then played for a bit until it was time to go home. Had a great day! The highlight of the day was when Elena grabbed my hand and said hello to me. It was the first time another kid did that, and it made me feel very special.

Day 2 WEDNESDAY JULY 6th

Wow! It was a long day! Had a blast in the morning as my favorite teacher came in and gave me a 3 hour class! Now we will be able to complete many projects! After that, I was revamped and taken to the museum. Upon arrival, we went on to the Auditorium to watch a movie. I have never been in a place with so much people, so I was not comfortable with that... Since it was dark, I just decided to ignore everything, close my eyes and fall asleep. I woke up as my group was retreating to the classroom haven. I was anticipating just being with my new friends, so all was fine until I had to go to the small project room to do the morning art project all by myself... The other kids were napping but I just wanted to be with them! So before we could complete the spice box project or even start decorating the funky wooden fish, I made it clear that I wanted to go back to the group. I cried and cried and cried... At least Mommy listened... Roxy took me to a walk through the galleries until I felt better and ready to meet my peers. Back into the main room I composed myself and was content. The highlight of the day was just being with the other kids, watching them... It is a simple pleasure for me. How to make grown-ups understand things...

Day 3 THURSDAY JULY 7th

During the morning, my teacher went on to keep on with our own Aquarium project. After my class, I was prepared to go have more fun. Upon arriving, we went to the Hindu Gallery and I really like the story about why the cows are sacred in India. We all moved our arms simulating the gestures that created the story. I really liked that. We went back to the classroom, and as the kids nap I decided to complete the spice box art project without fussing about it. Roxy also brought a wooden fish for me to pint and decorate. This time I painted the box, but I was growing impatient... I wanted to make sure I spent time with the other kids... I asked to be taken to the classroom, and finished the fish's face over there. Then I just enjoyed watching the kids napping. I took home the spice box and a wooden fish to complete them for next day... I made sure that Mommy understood how I wanted to decorate them. We finished the spice box in the night... Mommy offered to finish my fish but I did not want that so the project was left for the next morning. Hey, they are my projects after all! The highlight of the day was mimicking the gestures of the story at the gallery. I really liked that! I don't take for granted moving even if just a bit!

Day 4: FRIDAY JULY 8th

I finished most of my Aquarium project in the morning, starting with the wooden glam fish, and then went on to the Museum in the afternoon. We went straight to the Auditorium as on Fridays the main project is the camp's show and then displaying what we did through the week. The first part was the real Hindu dancers performing their traditional dance... Not up my alley. I didn't like the music at first, so I tried falling asleep. It was a short thing, and so I woke up as soon as I felt my wheelchair moving. We went to the classroom, and my peers practiced for their musical theater performance. It was something they had put together in the music & movement class during the mornings... I watched them but I was not thrilled when I was asked if I was gonna do it too! No way! I started crying to make my point clear. I did not like that music, and the idea of being in front of so many people... No, no, no. So... We went back to the Auditorium and the Camp performances began. I was wary of it all, but after a while I confess that I began to enjoy the performances. The music was too loud at first, and kids were screaming too loud for me... but as the groups presenting were older Mommy started telling me to listen... and so I did. I liked the few last pieces. I showed I was content with it. They presented a slideshow of the whole week, and I liked that too. I am very familiar with slideshows. We went back up to the classroom so parents could see our art gallery exposition, and then before I knew it it was all done. I was back home, carrying all the stuff I made... and feeling content but very tired! The highlight of the day was how my face changed from lobster to very calm when getting out of the Auditorium. So much people in such a small place is not my cup of tea! But I bear with it. I remember the Golden rule, and then I realize all the things that are consequence of my actions. I try my best to make Mommy and Daddy proud of me...

And there you have it, my first big adventure! Five more weeks to go... and I am really looking forward to it all! This has been the best Summer ever!

GOD: Thanks so much for so many blessings! You take care of everything. You make my heart smile. Work through, make me an instrument of Your peace and of Your love. Help me be just what You want me to be. Keep me in Your arms, as always. Amen.

Summer Camp at the Newark Museum

2011-06-30T12:27:00.000-07:00

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 piña 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!

~

Return to Turtleback Zoo

2011-06-24T12:11:00.001-07:00

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!!!

~

Father's Day Weekend

2011-06-20T21:55:00.001-07:00

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!

~

Projects and tune ups

2011-06-17T12:05:00.000-07:00

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!

~

Halloween in June: Tink

2011-06-11T20:51:00.000-07:00

Stuff, Dr.Bach, and Summer!

2011-06-08T18:18:00.000-07:00

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.

DEEDEE THE BORG

2011-05-29T15:41:00.000-07:00

So... My loving daddy took this video of me sleeping while in my stander... Thanks for embarrassing me in public Daddy! On a positive note, at least he's comparing me to a Borg... And I definitively aim to be like 7 of 9. Make it so!

ENDING MARCH

2011-05-28T17:27:00.000-07:00

Almost reaching the middle of the year! Unbelievable! Well, I have been so busy that I have not been able to write too many details! My everyday is now quite full with school and therapies. The good news is that so far I've been able to keep myself healthy and "bug-free". The bad news... wait! I have no bad news! I am quite thankfful to God for that!

At school, I've been doing lots of reading and discoveries. Last week I filled up a big table of "smelling experiences" where I placed a happy face under the things I liked and an unhappy face under the things I disliked. So far I really dislike rotten fish and a herb. Everyone had fun with that activity. I also really enjoyed reading Jack and the Beanstalk. It reminded me of the seeds I planted...

There was an EIP reunion and things got ready for Summer and next Pre-K year. My favorite teacher will keep coming, increasing his hours. In summer days will be concentrated in 3 days of 3 hours, that sounds demanding... but I look forward to it. Those two days with no classes Mommy plans to fill them up with "field trips"... as long as the weather allows. I hope so... I really REALLY want to get out of here and discover new places. If I prove that I can do good outside, who knows... maybe school can be more feasible at the real school instead of at home... But first steps, for everything... Slow but certain. I hope that I can get to do some video-conference with school next year... Fingers crossed. Now I began practicing that with my Godfather who is in Florida.

The troubles with my wheelchair now includes that it is getting small for me... hopefully it can be fixed so it lasts a bit longer... Right now I really need a stroller to make outings easier on my parents... I would like to get a tablet so I can communicate while being mobile, as well as a portable pulse-ox... but I guess that falls in the category of "wishlist".

The weather has been really bad, with all these spores, mold and pollen in the air... And the hot today and cool tomorrow... What a weird summer! Next month we'll celebrate my sister's first birthday. That means my 4th birthday is also around the corner... Wow! Soon I'll be graduating from college!

So... that's the main news for now. I am enjoying good days with my family, learning a lot, and trying to do everything possible to run away from my shrieking little sister! I'm tolerating some of the Gabba Gabba madness, but I keep on being faithful to my beloved Wonder Pets and some VeggieTales... I love that I can now talk a bit more using the Tobii, so my people know what I want and how I feel. I also love that I can see the people that are far away from me, and that I can also learn even more through the Internet (I am hooked on National Geographic documentals... that Dolphin movie rocks!).

God: Help all the kids that have been sick and that have been staying at the hospital. Help them make it through, so they go home to their families. Keep all of us in your hands, and protect us. Thanks for all the blessings you give me and my family... I don't have too much, but I don't have less... You give me just the right amount of everything. Thanks you, Father! Amen!

MOTHER's DAY

2011-05-15T15:00:00.000-07:00

HAPPY EASTER!

2011-04-28T23:31:00.001-07:00

PLANTING SOME SEEDS

2011-04-11T03:43:00.000-07:00

DAY 1: POTS and WORMS
I prepared some pots so I could plant some seeds. I got to touch the dirt, pour the dirt, touch a worm, throw the seeds inside... Did I mentioned touching the worm? Actually now I have three worms in my big pot! All alive! They are my new pets! Here are two videos Mommy shot on Day 1 of the project! Enjoy!

DAY 2: MORE POTS
Here I prepared crystal-clear small pots and planted cosmos and dessert rose seeds. Now I have beans, corn, and these two. Who will sprout first? Will the A/C stop the project? Will there be enough sunlight for the seeds to grow? Ok, the answers to these questions will come in later weeks, but down here is the process of more seed planting. Hey, Mommy used to plant stuff all the time when she was a kid. I gotta show her I can, too!

~

SPRINGTIME

2011-04-11T02:24:00.000-07:00

April came in with happy days. Mommy just celebrated her birthday, and I gave her flowers that I did myself. I know her favorite must have been the purple-orange one... well, at least it is mine! These past days I've been really busy, my school stuff has been all about seeds and planting trees... I started a project planting some seeds to see if they grow. I'll show you later on, Mommy made videos of my two days getting my hands dirty!

I've also been busy getting the hang of my Tobii. I just like to pull some tabs, especially at some therapists... I am suppossed to do these simple boring tasks they want me to do to make sure they get that I use everything well... Well, I admit it, I have been a pain about it. It just bothers me a lot that they don't get that I get it, that I already understand what to do, that I am just not interested. I know, I'm working on my "people skills"... Hey, I am called "the diva" for a reason! I am not good at faking, and I am as sincere as it gets...

Ok, so I'll try to behave. The Golden Rule is sticking to me after all... And I know that God wants me to be happy and to do good. I'll keep on trying to be patient, and doing my best to do unto others as I want them to do to me... A simple rule is so hard!

Mommy got me some new books, so I should experience diverse mind stimulation on the next weeks... some story-wise, and some art-wise. With this and my school work I should have more fun!

So far I have been healthy, and I knock on wood when I say it... So many kids are so sick! The end of Winter was harsh, and Spring seems to be hiding away... I pray all the time for all my friends, so they get better soon.

I've had no appointments, and actually I have none scheduled... I think Mommy mentioned something about getting the annual checkup with Dr.Bach, so maybe that will be my next appointment. Mommy and Daddy are still debating some things and they want to get the expert opinion about it.

So... so far so good. I look forward for more adventures and less drama (yes, I really don't like drama, it makes things go backwards). This next week is Aunt Edny's birthday, and a dear friend's birthday (that's you Vangie!),so HAPPY BIRTHDAY to two awesome gals! Wow, I am surrounded by sheep... goats... oh, whatever...

GOD: Keep me and my family and my friends in Your hands. Let us understand the true meaning of this special time of the year when we celebrate how you died for our sins and came back bringing hope and salvation! Protect us, and make us all an instrument of your peace. Amen.

~

OUT FOR A SPIN

2011-03-27T00:57:00.000-07:00

I asked to go out to our porch. Well, we don't really have a porch, but the community building has a small gathering place in the center of it (it is a u-shaped building). So, I got all geared up and off I went! Daddy took me around facing the chilly wind and the odds! We couldn't stay outside for long as temperature started to drop a bit, so we picked the mail and went back home. A small step for me, but a big steps towards getting out of the house to get a tan!

March of Success

2011-03-19T13:00:00.001-07:00

The year keeps running... This month I finally got to actually play with my new communication device. Mommy made changes to the screens and now I can do more stuff. Love it! She is still working on some pages for school, but basics already covered are just fine. Communication, internet access, learning tools... I am in 7th heaven now! Using my new proximity switch and exploring the infrared controls (still have to get the hang of it).

My homeschooling sessions have been beyond awesome! We have done many crafts, and I'm bugging Mommy so she posts some pics of what I have done. Granted, the Valentine Freaky Guy was... freaky... But I have done much more! Like last week. We discussed moods, and created the Mood Fruits couple. Here's a glimpse at my fruity creations!

Sadly they will soon have to go... I can't have rotten projects around my respiratory stuff. So, besides this, I have been coloring calendars, images, the letters of the alphabet... you name it. I have been quite busy!

Therapies keep on improving. The good have become outstanding, and the not so good are getting a gold star for trying hard to get better. I acknowledge that I can be a bit difficult and so I have been working on being more patient and applying the Golden Rule. Feels good to try hard to be my best, and people have noticed. My diva outbursts are under anger management.

Life has been good. And I know things will get even better. I am surrounded by love and caring, and even my little bother is ok in her own way (baby Kali). God has blessed me, and keeps on blessing me. I have no complaints, and I have no wants. As a Spanish song goes "Nada me falta, nada me sobra". I have everything in just the right amount, not too little and not too much... which translates to a sweet just right!

GOD: First of all thank You for everything You grant me, for the chances to live, for the love that is all around me! I pray this time that You bring comfort and blessings to the people of Japan who are suffering so much without shelter and food. Being cold is no fun... and the uncertainty of what will or can happen can be too much... God, help them keep courage and their spirits high. Grant them strength and serenity. Bring miracles into their life so they are renewed. Everything has a purpose, and through hardship we humans develop character and illumination. Let us all learn that the Golden Rule is all that it takes to make the world work for all of us. In You I trust, I am in your hands. So I put everyone that I know and that I don't know in You hands as well. Amen.

Deedee & Her New Proximity Switch

2011-02-27T14:11:00.000-08:00

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I have been struggling using the Microlight switch as I have grown weaker. Using the sensor switch has successful 75% of the time but still positioning so it is perfect so I can use it is a pain... Now, the new proximity switch is PERFECT! No hassle positioning, and it captures my thumb movements without problems. Finally I'll be able to actually enjoy my toys, and some single-click games, without having to wait much. Gotta love technology!

~

Deedee & Her New Suspension Canopy

2011-02-26T14:14:00.000-08:00

This is the new suspension device that Mommy and Daddy built for me. They used PVC posts, a small pre-made gate, and metal straps. They secure the whole thing bolting it to the back wall, and securing the device's legs to my bed's legs. They also painted it violet and white, following my specifications. Gotta love my minions!

~

TOBBI, Wheelchair, V-Day, and More

2011-02-25T00:28:00.000-08:00

The BIGGEST NEWS mainly involve that I GOT THE TOBIIP20!!! It arrived on Thursday afternoon and Mommy and Daddy unpacked it all through the night. The post still has not arrived so they didn't touch anything, just reviewed what was in the boxes. I'm so excited! The proximity switch was included, as well as the ambient controller (so now I can turn on/off stuff when I want to). Mommy needs to redo the screens, making some changes that will allow me better eye navigation in the monitor's screen. It is just a small step for me, but a big step towards my independence and communicating people my thoughts, wants and needs. Hope the stand arrives soon, so it all can be setup during the weekend!

Besides this, I also have good news about my never-ending wheelchair woes. My Edu-PT brought a jolly ATP guy that will make some changes to the wheelchair chair, customizing it for my needs (AMEN). He will the deal with the headrest issues (find a good one that will be actually safe for me), and then he will help explore other switch options for actually getting a power chair base. It all will be in phases, but I am definitively looking forward to giant leaps improving the stuff I have so I can actually use it without being scared of it. Maybe we will target the stander later on, but for now the forced changes troubleshooted by Daddy and the Edu-PT have worked (even if it is not the best at least it solves part of the problems so I can use it). For now, the important thing is the wheelchair, and moving towards a power chair for even more independence! Oh, I see myself chasing Kali! That will be fun!

During this month Mommy and Daddy celebrated their 4th Anniversary. It's so cute to see them together, they tease each other all the time but I guess that's how they have fun... You know they can be very weird. I'm just glad that I have lived to see them together, and to see that their love grows every day. I hope someday I can actually have a happiness like that of my own. And I do not doubt it, because God has amazing things placed on my way! And since I don't stop, I will get them all one by one.

Classes have been keeping me happy. These past two weeks my teacher has brought musical stuff, and you all know that is my Achilles heel! I love anything about the music! So by now he discovered that secret. I have been a good girl, paying close attention to my teacher especially when he do crafts. I love crafts! I don't like messy stuff (finger paints), but I love crafts. Valentine's Day involved the creation of a very disturbing V-Day Guy... It is still tapped to my bed, but looks very freaky. Nurse Mashaela read two books about Valentine's day so I understand now that it is all about friendship and love. Now she is also drilling me... pardon me, reading to me... about Easter. Mommy got a book explaining things in deep, so I will probably get Mashaela to read that to me tomorrow. Gosh, I really need to learn to read... Hopefully with the Tobii I can get more help in that area!

I had my Synagis shot last week, and overall I've been feeling upbeat and well. My pediatrician prescribed yet another medicine for my face rash, and I'm trying it just because... by now Mommy and Daddy have tried many medicines and nothing have worked. Even the medicines from the dermatologist did not work... I don't know what is causing it, I just know I want my porcelain skin back! And I am making sure my team works to make that happen. I am a diva after all! I have an image to keep! And talking about image, I may have a special lady coming in to help Mommy with my hair. I know Mommy cannot be all for myself, now I have to share with Kali (yes, I said that word... s-h-a-r-e...). I still don't like it, but I know Mommy does a lot for me, and Kali deserves time too. So maybe this lady will bring back my neat cool updo's. I am not so fond of the one-ponytail look. My trademark is the two crazy-colored pigtails. Especially the pink hair! Again, I have an image to keep, I am a diva!

So... Tobii P10, wheelchair, hair... and health. And above all, so much love! I am truly blessed. I hope I can give back so much love and so many blessings... Little by little. I promise!

GOD: Thank you for making things happen for me. Thank you for lighting the way and illuminating Mommy's and Daddy's mind. Thank you for giving us all we need to live on. Thank you for making me fall in love with life each day, and for making my eyes smile. Protect my family, and friends, and everyone that needs You. I trust in You, and love You. Make of me an instrument of Your peace. Amen.

~

DAWN OF A NEW YEAR

2011-01-31T15:19:00.000-08:00

I know, I know… I’ve been a bit lazy with the writing but it has not been by my own fault. Time is running out too fast. Mommy has been studying and me, well, I have been coping with many things to do.

Now my days are flying as well! My new routine includes waking up at 7:00AM every day from Monday to Friday. My day nurse Mashaela comes in and bathes me, then puts on my percussion for an hour. She reviews some basic stuff with me (like reading a story, singing the alphabet or using the flash cards to review some words). After an hour of percussion I also get CPT and then my respiratory therapy. By 9:00AM I am ready for the day, and at 9:30 my teacher arrives. Mr. Farina always has something new to do, and I love that! He stays for an hour, but after he goes my dear Mashaela keeps on reading until midday. Someone comes depending on the day… PT Martha, OT Bob, SLP Adam, or OT Ross. During the afternoons I am really tired and get a two hour nap, and usually I have the attitude of “ leave me alone” as I don’t get to watch TV until 4:00PM, and that is the thing I really like to do… From there I usually get to watch two movies, and in the night someone may read a story or two. By 8:30 I’m getting percussion hour again, so at 9:30 I get my night respiratory therapy and go to sleep by 10:00PM. This is my weekday schedule… I’m not too happy about it as it feels like I’m always on the run with something to do… It is very tiresome! But I do enjoy the busy mornings… I love learning something new each day.

So, the year began with new waking up routine as well as a bad case of sinus. I had a sinus infection by the middle of January that put me off schedule in everything for a whole week! I feared I would end up in the hospital, but my pediatrician prescribed antibiotics so I would not be put at risk in ER. The first five days were very taxing, my whole body ached, and my head… Oh, my head! I had so many headaches and migraine! And so much head soreness! I could not even watch my videos! I just wanted to be left alone and to close my eyes… light bothered me, and the sinus pressure was driving me crazy! Thank God that the medicine worked its magic and so it started going away. Mommy and Daddy took good care of me… That week there was a snow storm and the nurses could not come. I don’t fear much, Mommy and Daddy always know what to do. But by now I am really wary of snow… It’s been snowing so much! And that’s why I get all sinus problems. Can’t wait for the snow to end!

January just began and it also just ended. It is incredible, time is flying because we are all so busy! I am just glad that all in all this was a great month, and that the year began with happy people around me. I’m still fighting for the assistive technology stuff that I need (the Tobii), and for the neck support and bed bath… And soon I’ll have to fight for a power wheelchair… Fights never stop, but one thing is certain: I am very glad that I am alive!

God: Thank you so much for taking care of me at all times, as well as for taking care of Mommy and Daddy and Kali. Keep watching over us, as well as watch over so many people that need you! Bring peace to those families that have lost their kids to SMA this month… I know that all of them are dancing and flying and playing around You, but it is hard for their mommies and daddies and siblings… God, thank you for allowing me to have so much love around me! Let me give that love forward… Amen.

OUR FAMILY XMAS DAY 2010

2011-01-03T18:36:00.000-08:00

XMAS EVE

2010-12-28T10:42:00.000-08:00

This year was my 4th Christmas, and also my sister's 1st Christmas, so Mommy decided to start a new tradition: Reading three Xmas stories on Xmas Eve. We read The Animals Christmas Eve, What is Christmas, and The Night Before Christmas. After all this I was rushed to my room so I would sleep... Santa always comes after he knows I'm sleeping.

Santa Emails Deedee

2010-12-27T11:28:00.000-08:00

Here you can view the message that Santa emailed me before Christmas! Wow! So it is true! He has been watching everything I do! Thank goodness I am always a good girl!

BIG BANG DECEMBER

2010-12-14T18:49:00.001-08:00

The year arrived and went in a minute! I can't believe that we are almost at its end! So much drama and so much to do has left me almost like my mommy, very tired! But it is the happy tired, mind you. There have been some special missions brewing in the big cauldron that I name my life. Here's an update of my latest dilemmas... and outcomes.

THE TEACHER SITUATION
Oh, boy, that one has been a longaleer! I had no teacher since classes begun! Someone had the bright idea of placing me as homebound, and from that point on it all has been a mess! I had no teacher until last week that I finally had a substitute teacher come and see me. Mommy and Daddy had filed something called "due process hearing and emergent relief" and they did a "mediation" with the Department of Education so I would finally get a teacher and compensatory time for the hours lost without teaching and without speech therapy. So, the substitute teacher was Mr.Farina and I really liked him. He was very engaging and fun. That week I learned about bears and even did a panda bear puppet! This week I met my official teacher, Mrs.Mangal. She's getting the Communication 101 bootcamp from my beloved nurse Mashaela and from Mommy, as it is a bit hard for her to get my answers... but we are getting there. Today she brought a book about trees and its inhabitants and I just love animals! I'm looking forward to finishing the book.

THE TOBII SITUATION
Wow! It has been one year and three months since we all began the process for getting me a proper communication device system. It has been a long process basically because of outside factors... but let's stay with the present day. The last of the paperwork needed to submit for Medicaid was gathered today, so it is certain that this week my SLP at Helen Hayes will submit the final paperwork. And now we have a waiting time of 30 days to see if Medicaid says yes. If so, I will finally be a step closer to being a bit more independent and being more understood.

The communication device is a computer that has a touchscreen with 4 cameras integrated on it. I need this system specifically as I have a bit of nistagmus in my eyes, so they tremble, and normal 2 camera system don't do eye-gaze calibration. With this system, I'll use a communication page that will allow me to say what I want, how I feel, what I want to do, and where. Later on communication can expand to finding out learning resources and even studying through Internet, but that is later on... for now it is all about the basic communication so strangers can see that I think and that I have deep opinions about everything.

WHAT's UP WITH MY WHEELCHAIR AND STANDER?
The wheelchair now has two flat tires, so we are waiting for them to be repaired. Besides that, my Headmaster collar is still in process... as well as my inflatable bed bath. This has been a two-month waiting... and we are still counting... Talk about slow service!

SERVICES, ANYONE?
PT, OT and SLP seem to be a never-ending story in themselves... and I have to take the good and try to dismiss the bad.

From the Department of Education: PT-Martha is outstanding and gets the job done making sure to involve me in everything. SLP-Gina was wonderful, I really had fun with her. Sadly, she has to stop working with me, which made me very sad. She will definitively be missed. OT-Bob is a piece of work... I hope he starts letting me do what I can do. Now I am waiting for a new SLP... These changes are frustrating and very unnerving for me. I wish things could be easier... for everyone's sake.

From the Homecare: PT-Bo has not appeared in three weeks. I don't think he'll be back... OT-Roze do some of the exercises that my old OT used to do. I think she was on vacation and will be back next week...

IN THE END
So... You win some, you loose some, and you always keep on trying. The year ends with me being hopeful for a proper communication system, for proper education that takes advantage of my thirst for knowledge, for my old set of wheels to be fixed and hopefully transformed to a power wheelchair (perhaps next year)... I look forward to a 2011 filled with opportunity and wonder and further changes that show the world that I am the only one true Diva!

TO GOD
My Dear Father: This has been a very special year, as this has been a year in which I have been learning so much about You, about who You want me to be, about the joy of being kind, courageous and true... I am so happy to know that I can always count on You! You have been there through good times and through ugly times, and You've carried me through it all! You have blessed me with wonderful people to take care of me, and whom I love dearly. I know how lucky I am, and I hope that I can give to others even more than all that I have received. Help me to be a messenger and instrument of Your will and of Your peace. Let me grow each day even more into Your love. Bring this crazy world the gifts of Harmony, Joy, Peace and Love. Allow exceptional discoveries to be made, and keep on bringing so many miracles to so many people... Help heal so many babies and kids that are suffering so much! Bring on healing of the body, and healing of the soul. I love You, God. I am deeply grateful. I sleep and live without fear, because I know that You've got my back. Thank You, God, for everything. Thank You for Mommy and Daddy, and for my little sister Kali. Thank You for my family and friends, and for those whom we do not know that also pray for me. Thanks for giving us life, for the roof over our heads and for the food in our table. Thank you for keeping us together. Thank you for all the Love and all the Blessings. Amen.

May Baby Jesus bring all of you everything that you need to simply smile!

~

Santa's Message, Xmas is HERE!

2010-12-12T19:49:00.000-08:00

Santa sent me a message! You can view it here!

WHEELCHAIR & STANDER WOES VIDEOS

2010-11-24T15:36:00.000-08:00

I'm having trouble with my wheelchair and my stander, and here are the videos that explain it all. Hopefully some professionals will find this helpful... I tried my best to look at the camera (when possible) and "smize" (smile with the eyes).

WHEELCHAIR:

STANDER:

~

MY LIFE AS A TRAVELING GNOME

2010-11-24T14:31:00.001-08:00

Let's see... where do I begin my chronicles... Gosh, I have been traveling as much as the traveling gnome. Not that I mind, I love going out and these silly appointments are the ones that allow me a breather! I went to New York on Monday and Tuesday.

On Monday I visited the dermatologist to see what else can be done about my face rash... Seems I am a human puzzle for everything, especially that. It is the 5th visit, and I get yet another cream to try on and another appointment to see if it works. So I am getting monthly dermatologist appointments that seem futile as the rash keeps on being there and nothing happens... The skin swab for a culture came back showing nothing so everyone is baffled. What makes things worst is that whenever I go a different doctor sees me, so there is no continuous care or line of thought from one professional... At home we do more using the witch hazel alone than with these creams. My biggest complaint is: People, if you don't know something just say it so we try looking for answers elsewhere... Now that's a thought!

On Tuesday I went to the SMA clinic to get some second and third opinions on what we could do to make my wheelchair and stander work... We had no means to bring the equipment physically, so Mommy and Daddy made two videos with me using it, explaining the problems. We are very tired by now of saying the same thing over and over and having no one listen... What is it with professionals and NOT listening? Don't they realize their work will be easier if they listened? Ah... So, we got there, they saw the videos, asked questions, and will consult to see what can be done. I expect nothing much... By now I guess that we will just keep on with improvisations at home and that's it... Mommy and Daddy are good at that. Since we have no transportation is like people don't get the sense of urgency to fix my stuff for once and all... I would like to feel safe if I go out to the Zoo, or any outing... but people just hear we have no transportation and it all seems like useless efforts... Or at least it feels that way... Anyway, the neurologist, nutritionist and the pulmonologist checked me up. Everything is constant and fine with me. Yay! I had my flu shots last week, and they are still trying to get Synagis approval.

I had the Tobii month trial from the end of September to the beginning of November. Now I have to wait to see if Medicaid approves it. This has been a very long process... I remember we started it all in October 2009. Everything has been delayed by months thanks to outside events in outside people's lives... It has all been very anoyying and frustrating, so I hope that I'll finally get it. The latest bump in the road was that at the beginning of trial Mommy had been told that someone from Medicaid will come to evaluate me and then they would decide to approve or not... At the end of the trial she called up to see why no one had come and then she was told something VERY different: An SLP was supposed to be training me on the Tobii and then was supposed to submit a report to Medicaid... Mommy is not crazy, but somehow the system is trying to get me or something! She contacted my SLP at Helen Hayes and things are moving... Hopefully it all will have a positive outcome.

I'm still hopeful on actually having a teacher at least for Christmas... Wait! Maybe THAT will be Santa's gift... Wouldn't Mom love it, ah, the gift of knowledge! LOL We've had some incidents that are very bizarre... I've had no instructor since September, and my SLP from the Dept. of Edu started a bit late, so Mommy and Daddy filed a Due Process Hearing for an instructor and compensatory time so I have make-up time for the past weeks of no SLP and no instruction. No one contacted us for the grace period, so on the same day an Emergent Relief was filed this lady appeared in our home... Apparently she is to be my instructor but she mentioned she had no material, that she would use whatever was available from my stuff, and that she expected to work 3 times a week and for the time I was interested (as kids should not be pushed). Hmmm... I heard Mommy complained as the IEP says instruction is 5 times a week, for 2 hours. Originally the lady said she'll come in Monday, but Mommy asked her why as the week had not ended so she said she would come Thursday. Thursday she called saying she had a Chihuahua in her car and if it was ok to bring it in... We said no, so she again mentioned coming back Monday. Mommy asked about Friday and she then said that if there were any questions we should ask her supervisor. Three hours later she called and put the super on. Mommy asked about which was the school, the homeroom teacher and where were the plans... Since there was no answer to these, the super gave Mommy some names to call... Mommy contacted her advocate at SPAN, wrote a letter to the district superintendent, and now we are waiting to see what happens. We'll have a hearing next week, so wish us success. This is better than a TV series, really! We know drama! (A bit too much, actually).

So... as you can tell these and many other things have been keeping me very busy all this time. November went away in a blink! Not just November... the whole year! Just a year ago I visited the Turtleback Zoo in Thanksgiving week! Wow! It seems like yesterday!Tomorrow is Thanksgiving Day, so I look forward to taste some special Virginia Ham (done with a special family recipe from Auntie Gladys), and to have a nice quiet evening with my family. Nothing beats being with Mommy and Daddy and even with Kali. Nothing!I am happy that I have been at home, no visits to the hospital in more than a year and a half. This has allowed me to focus on very important stuff: Memorizing every Wonder Pet chapter, discovering Kailan, doing my studying of colors and shapes and animals... I'm back on track and more. Hopefully I'll soon get the tools to rule the world!

GOD: Thank you for so many people that love me and take care of me in body and spirit. Keep us always in Your hands, protect us, and help us move on. Take care of so many that need you, and bring on many blessings to so many families that are struggling even more than we do. Thank you for being my best friends always, and for pouring so many blessings in my path. Let me be an instrument of your Divine Will and of Your Love and Peace. Amen.

DEAR SANTA: I want to begin studying soon. Can you bring me a nice teacher and a nice tutor for Christmas? I have been a good girl this year as every year. With Love, Your favorite DIVA!

~

Just Another Sunday Morning

2010-11-21T23:57:00.001-08:00

It was Sunday morning and as usual Kali was creating havoc and I needed my minions to service me! So I guess they went a bit coo-coo because they didn't get to sleep much... Tough cookies! And I always end up having to tolerate this kind of misbehavior just when I want some peace and quiet... Dream on!

HALLOWEEN 2010

2010-11-01T18:39:00.000-07:00

DEEDEE AS PRINCESS JASMINE!

OUR HALLOWEEN

THIS WEEK's HAIRDO

2010-11-01T18:17:00.000-07:00

The return of pink hair and pretty colorful beads!

Deedee Using Tobii-P10: Two Videos

2010-10-30T00:09:00.000-07:00

As everyone knows I have a Tobii P-10 as a month trial. The time is almost up, so I decided to record how I use it so people can believe that yes I can actually use it. Right now I do simple things with it (after all it's only been one month), but with this I show I can manage the pages, make selections by blinking upon what I choose, and answer questions for easier communication.

Mommy made a page set so my communication board was completely customized for me by her... It is always handy to have a techie/programmer/illustrator in the house! The start page gives me the following options: How I Feel, About Me, My People, Needs, Fun Stuff, Where I Want to Go. All pages have Yes, No, Can You Help Me, Wait a Minute and Back to Main Menu.

PART 1: COLORS & BATH
Before filming the video I had chosen My Fun Stuff, then I selected Painting, and inside that page I decided to do so using a coloring book and fingerpaints. Here you can see me in action.

PART 2: NEEDS MENU & MOVIE
Here I went to the needs menu and selected clothing as the room was chilled and I wanted to get warm. I also selected a Disney Princess movie.

~

WASHING DEEDEE's HAIR

2010-10-11T18:29:00.000-07:00

Here's a peek at how Mommy and Daddy (mostly Daddy) wash my hair... Yes, Mommy now has green hair (go figure!). This is what I have to deal with everyday... I tell you, these two are always bickering like that... It's not easy living with them!

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APPOINTMENTS GALORE!

2010-10-11T15:38:00.000-07:00

These last weeks have been filled with assessments, assessments, assessments... I enjoy the trips but sometimes it seems that there is no point for the final outcomes are zero. In the end, Mommy and Daddy find the answers on their own... Now what do you think of that...

Last week I visited my old physician for a recap on how I am doing. I got a hip x-ray to see how my hips are. Just as expected, my hips are displaced. This translates to caregivers having to be extra careful when handling me, so I don't get hurt. I don't get too worried, I know that my personal team takes care of every detail. I got prescriptions for the changes my equipment need as well as for a special pillow so my hips are kept aligned.

From the dermatologist I got the same cream that my pediatrician had prescribed in the beginning of my face rash woes... I have used it religiously for two weeks straight and at least the rash is a bit more tame. Still the problem remains: It just won't go away. I know that for my next dermatology appointment they shuld have the results of the culture they did, so I can finally know what is going on in my face. At least the complete freckled tomato look is a thing of the past. I'm back to my porcelain self... with some reddish hints.

Last Friday I went to Valley Health and got acquainted with the PT there. What a nice surprise! I loved how the PT talked to me and handled me without any fear. That is exactly what I need. I hope I can go back soon, I am certain that she can help me a lot.

During the weekend my stye woes came back. Mommy found a way to treat styes using special goggles. Now, my eyes have been very red and getting styes because I have extreme hydration problems in my eyes. The main reason is that I cannot close them completely at night when I sleep. This is called lagophtalmos. Main problem is the cornea can get affected. So, a way of treating is hydrating the eyes with GenTeal or Refresh. This is good during the day, but at night I need a bit more help. Mommy found out about the special goggles in which you can do heat or cold treatments. They allow for the eyes to keep humidity while I sleep. Here's me using the goggles (yes, they are pink):

I have a set of goggles and eye patch, so the stye can get treated while I'm awake. Everyone was so proud of me the first time I used them, as I was not scared to try them on. Of course my parents were concerned, but after they put them on I signaled with my thumb that I understood the purpose of the goggles and that I would call them if I needed them... No need, I slept like a baby for the whole night. And so far, I love them. My eyes are no longer gremlin red. And the stye is getting what it deserves.

I thank God every second for all the good stuff that happens in my life, and for all the right people that he send my way so I get help and so I accomplish everything that I put my mind into. I trust He will keep on protecting me and allowing me to give others as much love as I am receiving. I always have so many reasons to be grateful, and to smile!

~

Sensor Switch Tests

2010-10-09T18:05:00.000-07:00

For some months I've been using a Sensor Switch that my friends from the Technology Lending Center lend me. I have a MicroSwitch, but it is getting very difficult to use it. Ever since my last hospital stay back in February 2009 I lost plenty of strenght, so pressing anything has become quite an ordeal. My old assistive technology therapist wanted me to try the proximity switch and the sensor switch... So far I've only been able to test the sensor switch. It has been more successful than the MicroLight, although it is a problem to set it up right. After that is done, then it works most of the time.

One of my favorite toys is Buzz's Bubblemaker. Here is a picture of me using a sensor switch to activate it:

My main problem is always how to position the sensor so I can activate it with ease... It was the same story with the MicroLight switch that I have... What to do, what to do...

I also use the switch when I'm in my wheelchair or in my stander. Here's a picture of me using the Sensor Switch while I'm in my stander. You can see me using the sensor switch while playing an alphabet game.:

I was actually doing good today, my numbers were high and I played for a while with the switch. Afterwards I got my reward, a movie of course!

Here's a video of my stander session using the Sensor switch to play in the computer:

Here's a video of me playing with my Buzz Lightyear Bubblemaker using the sensor switch:

Hope you enjoyed this! :) Nothing like live-action Diva!

~

ENJOYING FALL

2010-09-26T00:52:00.001-07:00

What a week! I went on Monday to the Dermatologist, and basically ended up getting a prescription that Daddy didn't realize we already tried for my rash... been there, done that, only witch hazel works. I should be back within a month to see what else they will try... if they dare...

On Wednesday my OT passed by and we had fun using his Iphone to read some stories and play. I heard something about an Ipad, but maybe that will be a mission for the big red fat guy in December or the three kings next year. Thursday was a happy day as I got the Tobii mount so I can finally start using it... when the screws to attach it to the monitor arrive. The vendor promised to pass by on Thursday and so he did. He put it in place, and was surprised at Mommy's customized board for me. Hey, I know I am very lucky I have my own techie/programmer in the house, 24/7. On Friday the PT passed by and woke me up to musical exercises (Tio Nobel anyone?). I also started using the Tobii, and I showed Mommy and Daddy that yes I understand this stuff... The new setup using blinks to select is much better than the hovering in place, at least for me. So now it is a matter of exploring all the pages and learning my way around! At least I already have the yes and no location very clear.

The weekend has been fun, as I had a Little Mermaid marathon (I had no idea that Ariel had a baby!), and I expect tomorrow more training with the Tobii. I also heard that there are some works to baptize Kali, which makes me happy as I was baptized when I was 3 months old. It is the most important thing I have done so far! Hopefully she will get godparents that will lookout for her and love her as much as my godparents have done with me... I have out-of-this-world godparents that make sure I am allright. Thank you Maria and Sti!

So... This is short and sweet, but it sums up all my latest adventures. Please keep my Auntie Ednita in your prayers, she may have to battle cancer if things don't get as expected! That scares me a-lot! Pray for her, and for all the kids that got sick in these last two weeks... The back-to-school was harsh for many SMA kids. Also keep Uncle Sti and Nurse Carol in your prayers as both will have operations this week. May God grant fast healing and happiness to all who need it. Amen.

~

A BUSY BEE

2010-09-19T06:27:00.000-07:00

September has brought many appointments to make certain I am well. Mommy and Daddy are taking me to the SMA Clinic at Columbia Presbiterian in NY so the assessments that I get are more in tune to what I really need. When doctors have limited knowledge of SMA things get rough, so it is best to go with the ones that actually see many cases that are linear to my own condition. School began, but not yet for me! I’ve only seen the PT and OT so far… But now let’s go into details:

DOCTORS UPDATES
At the end of months I saw the physiatrist affiliated with the SMA Clinic, Angela D’Alessandro. She made a complete assessment of my current whereabouts, and agreed that the stander and the wheelchair that I have are not appropriate for me. Yes, all the people that handle SMA cases says “What the…” to that… She called the company in charge of the equipment to enlighten them on what they should asses upon my next rehabilitation visit… Also, she called in the head PT to do a quick brainstorming. She says right now the important thing is getting my OT and PT services rolling to prevent future contractures and other problems. So, now we have to find a company that do home visits for PT and OT, and that accept direct Medicaid.

During the first week I went to the endocrinologist. I had a MRI and a hand X-ray, and they both indicate I’m ok. The hand x-ray indicates that I have the proper growth, so I am just tall. The MRI did not show any weird stuff, just my brain. I also had the results of bloodwork done, which showed low cortisol levels. This can be the cause of my extreme tiredness, although there was no big concern about it. I need to repeat the bloodwork to see if that is consistent, and to see my carnitine levels. So far all vitamins and other stats are within normal range.

Last week I went to see the neurologist, pulmonologist, nutritionist and PT at the SMA clinic. The voyage had no commotion. The attending neurologist got all my information, updating my record. We expressed our concern about the rash I have in my face, my eyes redness, and my overall tiredness. We gave him all input from the recent bloodwork and tests. Upon telling the head neurologist he definitively questioned the need for an MRI for a SMA kid. The face rash is due to the drooling, but he will wait for the dermatologist for further input and prescriptions. The eye redness is due to extreme dryness, mentioning that I probably didn’t close her eyes completely when sleeping (which it’s true). My team needs to keep on making sure my eyes are well hydrated. His main concern about me is why in blazes I was put in homebound school instead of sending me to the actual school. He sees no reason for me not to go, as cognitively I am fine. He offered further help on that issue, contacting MDA in NJ so they would help us advocate for more school possibilities.

The Pulmonologist checked me up and found nothing wrong with my lungs. He checked the ventilator and fixed the settings so I could breathe more comfortably. I even sighted after he did so! So now my effort should be fine, allowing me to be less tired. We’ll see about that.

The Nutritionist evaluated my caloric intake and what I am taking now fulfills all my needs, so I’m stuck with same food and quantity (Elecare, 3.5 scoops six times a day).

Finally, the in-house Physical Therapist evaluated me and saw some pictures of me in my equipment… She also wondered why in blazes they setup the stander as they did (above the knee) when I have no stability or strength in my legs… So she suggested placing the knee pads under the knee for better support. She reviewed the alternatives for headrest and for neck control and agreed that they are good (the Savant headrest and the Headmaster collar).

I had my Pediatrician appointment last Thursday, and so my 3-year-old checkup was officially done. She expressed same concern about the face rash and red eyes, everything else being perfect. She was also mad about all the doctors not sending her reports so she can keep track of everything (not our fault, as we have given her information to everyone).

SCHOOL ISSUES
On Friday afternoon, the OT and PT from the DOE (Department of Education) came in. They both gave us a summary of what they are here for (mainly teacher support). We all troubleshooted my stander with me on it, and the best fix for me to use it effectively is to ignore the knee pads taking them off and simply use the knee immobilizers that I have and that actually support much better my whole legs. Standing with them makes a big difference, even visually! Wow, such a simple solution and all this time we didn’t thought of that… Four heads think better than two. The teacher is supposed to make her first apparition next week… we’ll see about that.

OVERALL OUTCOMES
So… I am excited for everything that will come in the future, but I am quite aggravated and annoyed at having to wait so much and fight so much for the meager things that I need. With the communication device, I am waiting for the right mount (it’s been almost 3 weeks that it is sitting at the end of my bed, staring at me…) as I cannot use it with the crappy current one. That has been mayor frustration! I need PT, OT and ST that are not from the DOE so I get the rigt weekly assessments… the big problem has been finding them as I need the service at home. School will be homebound for now, but we will try to ask for re-evaluation as my assessment classified me with cognitive capacity of a baby (which I’m not) and I know that being homebound I will miss a lot on activities, experiences (even if it is just a simple getting out of the house!) and creating relationships (hey, no offense but I am tired of being surrounded by old people all the time!). Mommy and Daddy have many fights ahead… I support them 100%.

GOD
Thank you for keeping me healthy and out of hospital woes. Thanks for surrounding me with the right people, filled with love, kindness and toughness. Help me grow, help me be all I want to be, and allow the tools to let me achieve my goals I have. Thank you for carrying me in your arms all the time. Help Mommy and Daddy do what they must. Take care of all sick kids, so they overcome their illnesses. Help me become a better little person, so I am happy and keep on with courage and endless hope. In you I always trust. Amen.

~

MESSAGES FROM THE ISLAND & FLORIDA!

2010-09-16T20:33:00.000-07:00

These are the messages that my family and friends recorded back in PR and in Fl for my birthday. I finally found them! Enjoy!

Gys, I miss you all so much! :X

FROM GRANDMA EDNA

FROM AUNTIE GLADYS

FROM GODMOTHER MARIA

FROM GODFATHER STEVE

WHAT's GOING ON

2010-09-05T14:29:00.000-07:00

THE ADVENTURES NEVER STOP
Yes, through the beginning of August I was sad and blue, but then my birthday arrived and it all changed again to being happy and well. I though that I was going to be second place in the house after the arrival of the baby, but I should have known better. I am still number one, and Mommy and Daddy still love me the same. And the little wailing banshee… well, her screams are growing on me too.

For my birthday I had two celebrations: One with my people from Puerto Rico (Hey, Godmom! I’m still waiting for the pics and videos!), and a second one with just the three… erm, four of us! I enjoyed a melting chocolate cake that was yummy! Yup, I got my hands on that one and enjoyed licking my fingers! It was all about Kai-Lan, and she is definitively another character that is growing on me. It has become really tough to decide between Kai-Lan and Ming-Ming… Gosh, life is filled with tough choices!

TOBII RENTAL ARRIVED, SORT OF…
A week after my birthday the Tobii rental finally was approved and arrived home. Mommy spent two nights configuring some screens, but when I was about to use it... it just would not calibrate my eyes… all because of the mount/pole. When I had the week’s demo and when I tried the system at Helen Hayes the mount was different, very versatile so the Tobii could be put in different positions. The mount that comes with the rental is too static and doesn’t allow me to use it at all… So now I’m waiting on the right mount to actually try the rental… The main problem is that Mommy and Daddy have to actually buy it since that specific mount is not for rental… Everything is money. So… Now Mommy and Daddy are trying to make arrangements for that purpose… we hope that I get an extension to my rental as I have not been able to use it and it is not my fault. We will see what happens…

WHEELCHAIR & STANDER WOES
Well, the story about my wheelchair and my stander needing some customizations so they actually work for me continues… Yup, this is almost like a saga or mini-series… I went to Children’s Specialized Rehab where once again everything was tried on, once again the PT just did some minor adjustments and once again the customizations that I need are not on sight. They won’t think outside the box, everything goes by what is available for the Buffalo stander and the wheelchair. No doctor is around, so whatever the PT feels is valid is what goes… and it REALLY bothers as the local physician admitted that things were not what I needed and said he would talk with rehab so they fix everything…

Being frustrated with the efforts at that place, we finally made an appointment with Dr. D’Alessandro who is affiliated to the SMA Clinic. She gave us al some pointers to try the old Rehab one more time, needless to say that effort failed so we will go back to her for final advice. This coming and going needs to stop. I’m convincing Mommy and Daddy to just stick with the people of the SMA Clinic as no one else seems to know what they are doing. And I am tired of it all!

THE NURSING SERVICE OPERA CONTINUES
What about nurses? They are defective! – Yes, add that to the Meatloaf song. It is all very VERY ridiculous. We ended the second shift and weekends with Maxim so another company would take care of it. We grew tired of the excuses and nurses that should not have a license. So, now with the new company covering those holes things should be better… NOT! Main problem we are getting is that nurses are afraid to come to our home because of the location… Who knows, maybe THAT was the real problem before and no one would tell us… We just know it is all VERY frustrating.

Now, what happens when the primary nurse decides to go on vacation without telling any of us so we would prepare things for what is to come? Yup, a week of chaos and mayhem. Last week was horrific. Mommy and Daddy had to handle everything about me in the end, as my care is VERY SPECIFIC and people just would not follow instructions. My life was in danger more than once, and needless to say I just don’t want to feel the presence of some people again. It took me 2 days to get over the fact that I got harmed in the process, especially in matters of trust. By now, if it is not Mommy or Daddy I trust NO ONE. I wish government would simply pay Daddy to take care of me, so I would not have to go through all this. It is not fair, to anyone.

UPCOMING APPOINTMENTS
September is filled with visits to New York. I’ll go to the Endocrinologist this week, and to the SMA Clinic next week. Then to the dermatologist if she does not see me at the clinic. I also have a date with my trusty pediatrician, Dr. Velickovic.

AND CLASSES WILL BEGIN, HOPEFULLY…
I know that classes start next week, but no one has contacted us to know teacher and/or schedule. That’s really sad, as they had promised we would get to know the teacher before the classes began. Promises, promises… We are VERY wary of things, especially the PT, OT and SP through the Education Department. They came saying if changes were needed they could be done without a problem, and then when you actually realize something is wrong and needs to be assessed the doors start to slam in your face followed by a titanic NO. So… We foresee many, MANY challenges ahead… Gee, how strange…

WRAPPING THINGS UP
So… What else can I say? Many things keep happening around me. Some things are really good, some things are bad… But the important thing is that all leads to the main important event of me, being alive, defying the odds every second that I breathe. Mommy and Daddy do a lot for me, and things keep popping up to make things even more complicated. But God doesn’t desert us, and every time a door closes a window opens up. Keep believing, keep hoping, keep dreaming, and keep swimming… Just keep swimming…

TO GOD
Please God, keep us all safe and away from harm. Open the hearts of so many so that they can see truth and feel some compassion. Allow us to keep witnessing the good that this world still has, keep asserting the fact that a better tomorrow is ahead. Cover us with you justice and your endless love. Help Mommy and Daddy find the right answers, all keeping to their beliefs even if it is a very hard thing to do. Send Angels my way, so they care for me the right way, so I can really live! Thank you for the good people around me, for those who always pray for me and for those who never forgets us all… May their good wishes be multiplied along with many blessings! Keep me in your hands always. Amen.

~