Tuesday, December 28, 2010
This year was my 4th Christmas, and also my sister's 1st Christmas, so Mommy decided to start a new tradition: Reading three Xmas stories on Xmas Eve. We read The Animals Christmas Eve, What is Christmas, and The Night Before Christmas. After all this I was rushed to my room so I would sleep... Santa always comes after he knows I'm sleeping.
Monday, December 27, 2010
Tuesday, December 14, 2010
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!
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!
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!