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

ActiveCycle, Figit Friend and MaW

noreply@blogger.com (Vierna) — Fri, 24 Feb 2012 03:59:00 +0000

Wow! February is almost over, and the excitement never stops! My parental units keep looking for solutions for me, and thanks to other families they came upon the ActivCycle. This little thinguie is automatic and should make my legs rotate as if I were riding a bike! All at a slower pace, of course. What should be the benefits? Basically this is almost basic training for the big gun: the MotoMed. The benefits of such a physical therapy machine are many:Greater flexibility of muscles, tendons, ligaments and joints; Improved circulation, digestion and metabolism; Reduced fluid retention, swelling and cramping; Lower blood pressure; Reduced osteoporosis; and self confidence, improve mental, health and reduce pain. But enough with the PT lesson, on with the show!

As you can see here Daddy already put on my AFO on my left foot. My right foot is ready for the task...

Here Daddy is finishing putting my right AFO. These are very important to help keep my feet and ankles. For those who do not know, AFOs (Ankle-Foot Orthosis) are externally applied and intended to control position and motion of the ankle, compensate for weakness, or correct deformities.They control the ankle directly, and can be designed to control the knee joint indirectly as well. AFOs can be used to support wasted limbs, or to position a limb with contracted muscles into a more normal position. They are also used to immobilize the ankle and lower leg in the presence of arthritis or fracture, and to correct foot drop.

So, after my AFOs are on, Daddy places my foot on the pedals of the Activcycle. Mommy put industrial velcro on the pedal and the AFO so my foot stays put. No slipping here! Daddy makes sure I am well stuck to the pedal and places the blue pedal strip over the AFO.

So there you have it. Both feet are well strapped, and then Daddy turns on the machine. He monitors my hips as I have very mild displacement and must be watched closely. The school PT recommended that I begin with 5 minutes and then go up 5 minutes at a time. Sounds good to me! Here's a video of my 5 minute session. Today was Day 3. Loving riding this!

So far this has been the second main excitement of this week. Mommy and Daddy are looking for other PT options: Aquatic therapy (formal PT in the pool, something we kinda did during Summer in my apartment's inflatable pool... It is a pity that we can't keep the pool filled all year long... We need the living room for other stuff) and Hippo Therapy (therapy using specially trained horses). It is all very exciting, so I am crossing fingers so one or both of these therapies can come true!

The first excitement came in on Sunday, when Mommy finished adapting a Figit Friend for me. Godfather Steve sent me the purple Figit for Valentine's Day (codename Willa), and Mommy followed a tutorial so I could actually play with it. Next on her to-do list is a creating a pageset so my "voice" from my communication device can give commands to Willa (I think she did a prototype, but my Tobii is on repair so I'll have to wait a bit to try that). This is so cool! Here's a video of me playing with Willa using my 2grams switch:

Ending the week of excitement, Mommy re-submitted the form for Make a Wish, so I should expect their contact soon. I'm glad Mommy did that, her first form got lost in cyberspace. I can't wait for what can come true! Gotta start thinking hard for a big wish!

GOD: Thanks for keeping me healthy, and for everything You bring me. Thanks for helping my friends, for allowing so much healing all around me! Allow me to keep on being an instrument of Your Peace and of Your Love. Always in your hands, always grateful, always believing. Amen.

Me and My Gadgets

noreply@blogger.com (Vierna) — Tue, 07 Feb 2012 07:40:00 +0000

Enjoy some videos of your favorite DIVA (yes, me of course) using tech gadgets to have fun and to communicate:

Using my spanking new 2Grams switch to play Whack-A-Mole

Using my proximity switch to play with my beloved Kai-Lan Adapted Doll

Using ALL my tech stuff!
This is way cool. I'm using my 2G switch to activate my WonderPets flyboat. I'm also using my TobiiP10 communication device to talk. Over my head, the remote control solar system spins (now I can control it with my Tobii). I can do all that while watching my favorite show. Life is good! Can you tell this was a great day?

Last, but not least, Have a small tour of my kingdom!

First Month of the Year

noreply@blogger.com (Vierna) — Sun, 22 Jan 2012 23:59:00 +0000

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!

noreply@blogger.com (Vierna) — Sat, 07 Jan 2012 04:00:00 +0000

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

noreply@blogger.com (Vierna) — Mon, 02 Jan 2012 16:53:00 +0000

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

noreply@blogger.com (Vierna) — Fri, 30 Dec 2011 23:12:00 +0000

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

noreply@blogger.com (Vierna) — Tue, 27 Dec 2011 08:36:00 +0000

Merry Christmas!

noreply@blogger.com (Vierna) — Tue, 27 Dec 2011 05:16:00 +0000

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

noreply@blogger.com (Vierna) — Sun, 18 Dec 2011 06:49:00 +0000

Letter from Santa!

noreply@blogger.com (Vierna) — Fri, 16 Dec 2011 17:10:00 +0000

Meeting Scuba Santa at the Acuarium!

noreply@blogger.com (Vierna) — Wed, 14 Dec 2011 21:15:00 +0000

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

noreply@blogger.com (Vierna) — Tue, 13 Dec 2011 03:54:00 +0000

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

noreply@blogger.com (Vierna) — Mon, 05 Dec 2011 09:19:00 +0000

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

noreply@blogger.com (Vierna) — Sun, 27 Nov 2011 22:49:00 +0000

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

noreply@blogger.com (Vierna) — Wed, 23 Nov 2011 06:12:00 +0000

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

noreply@blogger.com (Vierna) — Wed, 16 Nov 2011 04:53:00 +0000

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

noreply@blogger.com (Vierna) — Wed, 16 Nov 2011 04:51:00 +0000

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

noreply@blogger.com (Vierna) — Wed, 16 Nov 2011 04:45:00 +0000

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

noreply@blogger.com (Vierna) — Tue, 15 Nov 2011 20:24:00 +0000

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

noreply@blogger.com (Vierna) — Tue, 01 Nov 2011 22:41:00 +0000

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!

noreply@blogger.com (Vierna) — Mon, 31 Oct 2011 15:33:00 +0000

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!

noreply@blogger.com (Vierna) — Mon, 10 Oct 2011 23:58:00 +0000

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!

noreply@blogger.com (Vierna) — Tue, 27 Sep 2011 00:41:00 +0000

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!

noreply@blogger.com (Vierna) — Sun, 18 Sep 2011 21:54:00 +0000

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!

noreply@blogger.com (Vierna) — Sun, 18 Sep 2011 21:01:00 +0000

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.