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:
~
In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Saturday, July 30, 2011
4th Week at Camp: CUBA
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 TaĆnos, 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.
~
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.
~
Sunday, July 24, 2011
3rd Week at Camp: TIBET
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.
Friday, July 15, 2011
2nd Week at Camp: AFRICA
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.
~
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
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!
Tuesday, July 12, 2011
My Daily Routine
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!
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!
Sunday, July 10, 2011
My 1st Week at the Camp
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.
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.
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