BIG BANG DECEMBER

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

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

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

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

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

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

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

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

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

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

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

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Santa's Message, Xmas is HERE!

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

WHEELCHAIR & STANDER WOES VIDEOS

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

WHEELCHAIR:


STANDER:


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MY LIFE AS A TRAVELING GNOME

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

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

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


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

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

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

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

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

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Just Another Sunday Morning

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

HALLOWEEN 2010

DEEDEE AS PRINCESS JASMINE!







OUR HALLOWEEN

THIS WEEK's HAIRDO

The return of pink hair and pretty colorful beads!