Well, these past days have been something different alright! I've used my stander, although it is a bit scary (especially the getting in and getting out parts). Daddy flies me over to the flat stander, I get all belted up, and then I get inclined to 45degrees. So far I can be over an hour with no problems. When Daddy takes me off it and places me in the bed, I fall asleep real fast. It leaves me exhausted! But all in all I do like it. Seeing everything from a different perspective is a plus. And seeing everyone getting the wow factor because I am so tall is simple fun!
Now, the wheelchair is another story... The days that everything goes right I can be sitting at 45 degrees without problems... But somedays I just can't tolerate it. Last Monday I scared everyone. I was placed in my wheelchair and taken to the computer so I can practice my clicking, and five minutes later I started choking. Since the wheelchair does not tilt, I had to be unstrapped and taken to my room ASAP so I could be suctioned and bagged... I came back up really fast, but it was scary anyway. This is just what Mommy and Daddy tried to explain to the people who ordered the wheelchair... I need to go flat when I have emergencies. Being at home at least Mommy and Daddy and NurseMisheila move fast... but imagine if I were out... Imagine if by any chance I were in an elevator, where there is not even a chance to be placed over the floor. It is a simple big issue, as it is very life threatening. So... Now my minions will have to do something about this... I may be able to use the wheelchair within the house being very near my bed, but not outside. And even in the house, everyone gets very nervous about the what if's of an emergencies (when every second counts)...
Besides the Monday drama, things have been good. TherapistPat have been on time as usual, making me use my skills over and over. Yes, I am ready for new stuff. I am learning my colors, and matching my animals. I am also getting more vocal, I let everyone know when I want service, when I want attention, and when I want to be left alone. Daddy got some appointments for me, so I can try some eye communication devices. That should be fun.
On Thursday I got a visit from the Eye-Gaze guy. I tested the system, but my crazy eye movement made things a bit difficult. I have some nystagmus that at times shows and at times it is not too noticeable... but for a camera everything is obvious and calibrating the equipment was quite a task. At least Mommy and Daddy got some insight on other approaches to communication that they can apply in the meanwhile, and some ideas on how to make some things work. He promised to gather information on how to use the equipment with patients that has nystagmus. I also got a notice from TherapistTracy, she will come soon with a clock-like communication device... Hopefully that will bring something new to the table. All this attention floors me! But hey, it's all about me!
And so, the weekend comes in, and family will gather for some indoor family fun (movie-mania). Many blessings have been coming my way, some in the form of old contacts that are reappearing, and some in the form of people who are trying to help. My whole life is in God's hands, and I know that he protects me and cares for me all the time. Of all things I may say, this is the prayer that says everything that I feel:
"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."
And September arrived! The week began with TherapistPat arriving on time on Tuesday. I had a great session. I responded well to everything, and she feels that I am ready for much more. I was getting ready to go to my medical checkup, so the session was not as long... but it was great in matters of content. I've been showing off my making choices and paying attention. I need to hone those communication skills, I need everyone to know what I mean when I mean it!
So an hour later I ended up in the ambulance, to pay a visit to my pediatrician. As usual, Dr.Velickovic was a pleasure to deal with... but little did I know that she would end up giving me 3 vaccine shots! That was awful! That was on Tuesday and I'm still feeling it! And I have a mark in one leg to prove it! Besides that, the trip was nice and fast. I soon reached my room, and off to Zzzzz-land. These trips tax me a lot, you know, so I need my mandatory beauty nap.
Wednesday and Thursday were fairly uneventful. I follow my routine of waking up, making NurseMashaela read some books to me, getting my treatments, exercising, reading some more and watching Wonderpets. I'm getting into the routine of napping from 4pm to 6pm... Of course that is simply because doing so many things leave me exhausted! There is no rest for the wicked! I wake up in the early night, and then NursePeronette reads some more... And then comes the night treatment. Something always goes on.
On Friday Mommy went out during the day (that was VERY weird). The best part was that when she arrived, she had some stuff for me. She got me some crayons, some Play-Doh, and a small collection of DVDs. Well... I thought it was all for fun, then I realized that the DVDs are educational mumbo-jumbo dressed in sheep clothing... At first I was shocked. Just what Mommy think that she is doing? Brainwashing me to make people happy? Come on! As the night faded away, the Animals DVD had been drilled in my head... But in the end, it wasn't so bad. I actually had fun. And it all was a review of my flash cards and all the Baby Einstein stuff.
On Saturday NurseMashaela was on duty (a rare thing on weekends). Her stay was short, but I really appreciated it. I like having her around, she always makes things fun. Mommy had to go out, and when she came back she helped Daddy place me in the big room so we could watch my show together. That was fun. I kept singing to the show's songs, and chatting... even if Mommy fall asleep. I let her rest for a while, but when I wanted to watch something else I woke her up. Hey, it's all about me!
Sunday went on slowly and smoothly. Mommy and me had a spa session. she placed some green stripes on my hair with some bright beads, and then she lightened her roots. Yup, it was our official "beautification" day. That was fun, and it took the whole afternoon! I am starting to get the feeling that Sundays are the day to do the hard hair stuff. Hey, looking pretty is labor! Then I spend some time watching the Alphabet DVD... Loved the twists on the fairy tales stories. And so, a new week begins...
God: Thank you for all the happiness you bring into my life, for allowing me touch so many lives as well as for allowing me to receive so much love from them. Thank you for a humble home that is filled with warmth, for friends that always lookout for me, and for a family that doesn't forget me. Thank you for granting all the tools I need to grow smart, to grow strong. Help me achieve my simple goals: Communicating all I think, making Mommy and Daddy smile, showing the world that being different only means doing things differently and that life is precious and can always be lived to its fullest. Thank you for the miracle of life. May all other kids receive the same blessings that you have given me along with Health, Strenght, and Courage. Amen. ~
Yup, that sums up who I am... Colorful, hopeful, fabulous, wonderful diva! Mommy spent some hours beading me up, and I simply love it. I think pink is my color, no matter what some people say. Leave red to Mommy and purple to my wacky Godfather, I am pink. Yup, a girly girl that can be quite a tough cookie!
Painting is definitively not my strong trait (as you will see below), but Mommy helps with it. She says I am a living masterpiece. Can't blame her. I am a piece of work so many times! :P I'm glad I get all the attention I want. Just don't think I am spoiled. I earn all I get. I'm working hard everyday, trying to get my ABC's straight, getting the differences between animals and veggies, and being good with all who are good to me. I just wish I could watch my favorite show more often, lately I'm stuck with books, books and more books... Hey, I know I just turned 2 and now I am a big kid with many responsibilities... but come on!
All in all, I get everything I need and everything I want, and most important than anything else is that I get all the love in the world! I live in beauty inside out, and I wouldn't have it any other way. I wish with all my heart that all other kids like me walk and live in true beauty as I do. And I pray for this wish every night.
On FRIDAY 28 I performed my 1st PAINTING EXPERIMENT! Ok, I have to admit this was interesting... and different. Mommy loaded my hands with orange, purple and green, and then I was able to set free giving all I had to give in matters of my artistic side. My personal opinion: Mommy, keep this messy thing you call art to yourself. I prefer my art... cleaner... digested... on the screen of my dvd. After total failure to amuse me, I went out of the room into the computer area. To my surprise my clicker was attached to the mouse, and daddy prepared a game on the computer, just for me. I loved this! Now we are talking! I wanted to click everywhere so badly! I was engaged playing Peekaboo, then with the train... Wow! Colors and sounds! Loved it. Thanks Jana for the KneeBouncers link! Awesome games! This got my attention for almost an hour, then Mommy changed things to PinkyDinkyDoo and I fall asleep. But hey, cannot say that I didn't get something different!
Today I had my last fitting appointment for my STANDER and my WHEELCHAIR! It all rocked! You see me there, standing? That was awesome! Of course, I got as straight as I could, and then waited for some more... well... action? Nothing more, just me standing there looking pretty... As usual. Then I got in my new set of wheels! Loved the chair! It compliments my hairdo, and is simply diva-like. I hope that now I can finally get out to more than just appointments. You know... Night at the opera, Broadway shows, anything that keeps my status as a social butterfly... I am so happy I'll finally be able to do things outside of my bed! More chances to learn and to grow even faster. I'm a bright curious big girl now, with the right tools to do anything! Lookout world!
So the two weeks after my birthday have been quite eventful... Things are running fast. After all this I hope therapies can get better, and that some sort of transportation can be sorted out so we go out. I feel this is a new phase that will help us all to have FREEDOM! Mommy and Daddy can now focus on getting a better apartment and on getting a van so I can go places... Yes, in the end it is all about me. So what. They love it as much as I do.
I’m a big girl now! I just turned 2 today! God has blessed me in so many ways, filling my life with special people that go to great lengths to make me smile. The journey has been rocky, but here I am: A happy, strong, courageous diva that keeps on growing and learning and amazing everyone around me! I may not be able to walk or jump, but I go places! And boy, do I keep EVERYONE on their toes! Ever since I was born it was certain that I would go far… and would change everyone’s lives in a big way. Every day is a new challenge, and somehow I turn things around so I help teach people some deep lessons about the real meaning of life, and the miracles that happen every day and people dismiss or ignore.
To tell the story from birth to where I am today may get uncommonly long… My two short years have been an ongoing quest to prove negative people wrong, to show the world that the smallest of people can make the biggest difference, and to remind people that there are no boundaries or impossible missions for God. I am surrounded by love, and THAT has made the BIG difference. When darkness threatened to fall upon me, FAITH and BELIEF and the hard work and prayers of so many have pulled me through. I am so young, yet I work hard every day… just to breathe, just to communicate, just to share and learn… So many take the sunshine for granted… Not me. I see sunshine and I see that God’s promise of a new day after stormy nights is true and real.
This is my second year of fighting Spinal Muscular Atrophy. It has been difficult at most times and tiresome and frustrating… long hospital stays have taken strength and have tried to weaken my spirit as well as my parents and my caregivers… But today I prevail as I didn’t give up. I may not know much about the serious stuff that grown-ups know, but I know that if so many people give so much love to me for free then this life is worth living. Prayers and tears, songs and smiles have given me the will to go on. Just when I could have given up, I heard Mommy’s songs and Daddy’s stories… As I closed my eyes angels visited me letting me know of so many memos and letters that so many friends send to God so He would let me stay… just because I made their lives better… just because I could do so much… They all let Him know all the time that I still have a mission to fulfill. And boy, did He complied! Not many kids with SMA live this long, and yet He let me do so. He has big plans for me, I know it!
So, this weekend was the BIG, OUTRAGEOUS weekend. Mommy was working on some decorations for my room for the whole week. She also delivered! She made these poster sized images of the Wonder pets that look so bright and cool! I know she divided herself between that and her class and it was a bit hard… but I knew she could pull it off. Ha! She would do anything for me! :P On Saturday morning, one of the staff guys from the nursing company visited me, as he wanted to meet us all. It was a very nice gesture, and made me feel quite important. Daddy explained most things about me, and Mommy prepared a CD for him with SMA information and my daily care handbook so he could take it all back to his office and share it with the others.
After that, Mommy prepared a bundle of information and a CD for the Mexican family that is in New Brunswick, NJ. Hopefully that can help them a bit. Then both Mommy and Daddy began the daunting task of organizing all the stuff that I have in my room… Too many boxes of supplies have been stacked and my toys and books needed to be tamed. They even tackled the dreaded closet! Some things were thrashed, others were placed in a box to be sent to my other friend in Puerto Rico, others boxed, and others neatly placed around the room. Before midnight arrived, my room was tidy and most Wonderpets had taken their place up in the wall and all around me!
Sunday morning. Mommy and Daddy gave some finishing touches to the decoration filling up balloons and preparing the goodies table. After midday we had a surprise visit! Some new friends dropped by to bring some much deserved food to my beloved minions and to congratulate me on my special day! So I had the chance to show off some of my hand-wrists moves to Lawrence and to meet his wife, Rhonda. That made me feel something was definitively up… They had to go, but it was nice of them to drop by. I hope they visit me again! Yup, I’m the V.I.P. here!
Mommy started moving my bed, and all of a sudden Stalker Baby appeared in the DVD… No, wait… That’s more like my doppelganger appeared in Mommy’s laptop… Oh Dear! Then I realized it was me! Mommy seemed a bit upset for a bit, but Daddy managed to fix whatever was wrong with the machine, and then I heard that the phone… the phone was ringing! That was so cool! Our families had gathered at Auntie Gladys’s home to celebrate me! They were seeing me as I was seeing myself! Am I high-tech or what! I had Mommy’s family in one phone, and Daddy’s family in the cel… Yup, flanked by technology… I am surprised I didn’t end up being radioactive! NursePeronette and her hubby arrived, and that was our cue to see if the people back home were ready for my celebration.
GodmotherMaria had to improvise putting together everything as Mommy’s package didn’t arrive in time… But she made it (hey, sue her for being creative)! So… GodmotherMaria and GodfatherSteve got things ready, cake and everything. Auntie Gladys was there too, and a neighbor. I heard GrannyEdna arrived, and I also had GrannyMilly in the other phone… After some funny talk, Daddy put up a cake in front of me! He lit some candles, and all of the sudden Mommy counted to three and people from both phones and in my room were singing Happy Birthday to me!!! That was so exciting! But the candles were quite scary… To tell the truth, I was so glad when the fire was out… Hey, I don’t wanna risk my hair or eyebrows for sure!
So, candles out… frosting on my forehead… Daddy being happy… NursePeronette had to go. We decided not to cut the cake yet, as some people had not arrived yet to the PR gathering… Half an hour later, Steve called up. Auntie Ednita, her hubby and Marisabel, and Sonia and DoñaIsa had arrived. After some salutes and talking, they got ready again, and I got another Birthday Song. Yay! That was FUN! Eating and being silly, and getting a song twice in a day... It all doesn’t get any better than that. They all sent me some Birthday Wishes. Here are the videos:
From Godmother MARIA:
From Godfather STEVE:
From Auntie GLADYS:
From Granny EDNA:
From Auntie EDNITA, JOSE & MARIA ISABEL, and SONIA:
I was beat after all the commotion, so I fell asleep as soon as I saw my presents. For all I know, I deserved my sleep. So many things at the same time in the same day can be quite exhausting! Daddy woke up a bit later on, to give me my night therapy. But I don’t recall much… I kept sleeping.
I woke up early on Monday morning, as NurseMashaela arrived. Hey, my birthday is really on the 17th, and I wanted to be ready for action. We read and sang… just girl time being silly… Got my morning treatment and spa/bath. By midday I was ready for my therapy appointment… TherapistPat and Therapist Ellen were to come and had announced it… They arrived, and to my delight they came with a party in a bag! They had cupcakes, they had refreshments, and goodies for me! Once again, I heard my Birthday Song! Hey, this time Mommy recorded with sound! Check this out!
The evening ended with my media rack being completed, so my stuffed dolls and movies are now neatly stacked in the purple rack… and two more gifts. I got a package from other friends from Puerto Rico: Lulú, Ito, Shesian & Paola. It even had a gift from my friends at the ARV-CAA (where Mommy used to work). Wow! That one had some handmade cards that I really like! The Pandora Box filled with much love! Thanks guys! I also got the package from Auntie and Granny. The Pinnochio songs finally arrived! Yay!
And so… Nighttime arrived. Wow! These last two days had much action! I am beat! Daddy gave me my night treatment, and I’m falling asleep as I speak! So… This was my Birthday Bash! I pray to God that other kids can be as happy as I am, as blessed as I am, and as loved as I am.
Login to your Yahoo Messenger account and look for amlurith (v_rivera_pr@yahoo.com). It is 3:00pm, and we are broadcasting via webcam at Yahoo Messenger right now. We'll do so until 4:00pm.
Wow! What a WEEK! Last week was full of excitement! So many good things happening to me is so overwhelming! I am so happy! This year I'm celebrating my B-day in style! Well... Let's start breaking down the main events. I promise not to disappoint! On Tuesday morning, TherapistPat passed by, and we had a good session. At the end I was falling asleep, after all I had been off the vent mask for 3 hours and the heat of these days is just too much! After the mask was on, I went to sleep. I have been using my wagon in my room, as getting outside to the living room is out of the question. Too hot, and i can't stand that kind of heat! So... I'm comfy in my wagon and in my controlled environment.
Just don't think that I do nothing! Nurse Masheila and NursePeronette keep me quite busy! They range me, talk to me, read books, help me with my flash cards, play with me, tell me the news on what's going on with the world, help me practice my clicking, and reward my diligent attention with more WonderPets videos. I got a package from a friend, and it had a brand new clicker! No more excuses! Thanks Jana! I promise to use it and abuse it! :) That definitively made my Tuesday. I got a nice quiet evening, and prepared for next day's outing...
On Wednesday I went to Children's Specialized for a fitting of my brand new wheelchair. It is so awesome! It is black with hot pink trimming. I was placed on it various times, surprising everyone with how calm and collected I looked. Mommy was really impressed with me, as I no longer look like a baby. That was hilarious. Like that was not obvious... Guess she had to see me seating up, very straight and proud, to realize that! I'm a big girl now! Yup. Well, besides that Kodak moment, the PT realized that my vent cannot go where the tray is, so they had to figure out where else to place it... And so the session ended with the promise that the wheelchair will come home with me in the next visit at end of month. The excitement left me exhausted, so I had a long nap when I got home. Very well deserved.
On Friday, the RT arrived with a nice delivery: My new prong/mask. Woah! This one is much better than the one I had been using! It is the perfect fit, and it is comfortable and stays where it is supposed to (and I look like I'm gonna go boxing!). It gets two thumbs up! Then the biggest surprise of the week arrived: My spanking new power bed! Yay! Finally I can get rid off that embarrassing crib! My new bed is like a Cadillac! So big! And so comfy! And finally I can get all my positioning treatments safely and easier on everyone that attends to me. It is heavenly to go into trendelemburg without much stress! And no more breaking Daddy's back! And finally I don't go into a sinkhole (yup, the old crib had a portal to Wonderland that always left me stuck in its middle). Yay!
The weekend was quiet, serene and happy. I definitively feel so good in this new bed! It goes easy on my back, and makes everything better. Mommy and Daddy are very happy as they see me happy. We had no nurses coming over, so the whole weekend was all to ourselves! And I love it. Nothing like getting the personal, VIP treatment that they give me. There's no one like Mommy and Daddy. That's why sometimes I give a hard time to everyone else... I wish they could be my only caregivers... But I know they have to make things happen so I get everything I need, so i give them a break... sometimes. All in all, the week ended up being perfect. Now this new week holds a bit of drama and adventure, as the countdown begins for the most important day of all: My Birthday!
God: There's a new kid that I heard of... Her name is Alaysha. She's at my homeland, and she really needs your help. Keep her safe, and let many people reach out their hands to help her and her mommy and siblings. Things back at home are getting really difficult for kids like me. You have blessed me with so many things! Bless them as well. May love, shelter, healing, and all the basics be there for her and for all the others. Amen.
The day was fun, just me and my beloved ParentsSlaves. After some of my favorite movies, Mommy read some books and went on to grab some of my adapted toys. Here I am, practicing some clicks, using the toys that TherapistCarol left here. One is a bit freaky... It makes a rap out of anything you record on it. So Mommy and Daddy recorded "Deedee in the house". I guess they think I don't know my own name by now... I showed them I could click and stop when I wanted... BIG MISTAKE! So Mommy ended up taking this short video that showcases my thumb abilities... At least it is fun (for a while).
Well, these past days have been something different alright! I've used my stander, although it is a bit scary (especially the getting in and getting out parts). Daddy flies me over to the flat stander, I get all belted up, and then I get inclined to 45degrees. So far I can be over an hour with no problems. When Daddy takes me off it and places me in the bed, I fall asleep real fast. It leaves me exhausted! But all in all I do like it. Seeing everything from a different perspective is a plus. And seeing everyone getting the wow factor because I am so tall is simple fun!
Now, the wheelchair is another story... The days that everything goes right I can be sitting at 45 degrees without problems... But somedays I just can't tolerate it. Last Monday I scared everyone. I was placed in my wheelchair and taken to the computer so I can practice my clicking, and five minutes later I started choking. Since the wheelchair does not tilt, I had to be unstrapped and taken to my room ASAP so I could be suctioned and bagged... I came back up really fast, but it was scary anyway. This is just what Mommy and Daddy tried to explain to the people who ordered the wheelchair... I need to go flat when I have emergencies. Being at home at least Mommy and Daddy and NurseMisheila move fast... but imagine if I were out... Imagine if by any chance I were in an elevator, where there is not even a chance to be placed over the floor. It is a simple big issue, as it is very life threatening. So... Now my minions will have to do something about this... I may be able to use the wheelchair within the house being very near my bed, but not outside. And even in the house, everyone gets very nervous about the what if's of an emergencies (when every second counts)...
Besides the Monday drama, things have been good. TherapistPat have been on time as usual, making me use my skills over and over. Yes, I am ready for new stuff. I am learning my colors, and matching my animals. I am also getting more vocal, I let everyone know when I want service, when I want attention, and when I want to be left alone. Daddy got some appointments for me, so I can try some eye communication devices. That should be fun.
On Thursday I got a visit from the Eye-Gaze guy. I tested the system, but my crazy eye movement made things a bit difficult. I have some nystagmus that at times shows and at times it is not too noticeable... but for a camera everything is obvious and calibrating the equipment was quite a task. At least Mommy and Daddy got some insight on other approaches to communication that they can apply in the meanwhile, and some ideas on how to make some things work. He promised to gather information on how to use the equipment with patients that has nystagmus. I also got a notice from TherapistTracy, she will come soon with a clock-like communication device... Hopefully that will bring something new to the table. All this attention floors me! But hey, it's all about me! 
And so, the weekend comes in, and family will gather for some indoor family fun (movie-mania). Many blessings have been coming my way, some in the form of old contacts that are reappearing, and some in the form of people who are trying to help. My whole life is in God's hands, and I know that he protects me and cares for me all the time. Of all things I may say, this is the prayer that says everything that I feel:
