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:
~
Wednesday, November 24, 2010
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...
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!~
Monday, November 22, 2010
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!
Monday, November 1, 2010
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