Too often when I come here to write it's out of frustration or to VENT.
Today I'm here out of EXCITEMENT AND GRATEFULNESS!
Ellie and I are traveling to BOSTON in November to see Dr.Khwaja; a neurologist and Rett Specialist. EXPERTS like Dr.Khwaja are hard to find for things as rare as Rett Syndrome. We are so THRILLED that Ellie gets to see Dr.Khwaja! He is the lead investigator on the IGF1 Trial!!
Sooo...
My sister-in-law sent me an email linking several non-profit groups that help medically needy kiddos.
www.MIRACLE FLIGHTS.org
was one of those links.
After a couple days of paperwork and getting Doctor's signatures...
I'm THRILLED to tell you that we just got our CONFIRMATION EMAIL.
Our flights to Boston were purchased by MIRACLE FLIGHTS! Not having to pay the $600 for our tickets will make this trip AWESOME!
We are so thankful to the people there that CARE enough for our kiddos to do fundraising and volunteer their time!
Miracle Flights will now be on our list of organizations to support and I hope our friends and followers will do the SAME!
Friday, October 21, 2011
Saturday, October 1, 2011
The Talker
Can I just say, "EchoPoint, Our family is in love with you!"
Ellie's trial speech device, the EchoPoint2, has been with us for about 4 weeks. I've never seen something so amazing! The device is calibrated to Ellie's eyes and when she stops and "gazes" on a picture for more than .7 of a second, it speaks the voice output programed into that picture. Within minutes, the first time trying the device with Ellie at home, she was opening new picture files and making choices. It's been incredible and validating for our family to watch her express preferences and needs. She's in there, she really is, she just can't get the words to come out verbally.
The second interesting thing about the EchoPoint is that it's a touch/eye gaze device. We've been baffled watching her try to use the device with her hands. If I place the device so that Ellie can touch it, she will. What's interesting is that she'll hit the same button over and over again. She doesn't vary her choices, or open new sets of pictures or menus. She's limited to basically the first page with 15 pictures. When she's using eye gaze function, she can zip through 5 menus of 15 pictures each, making choices and communicating along the way. I know it's a bit hard to comprehend so I'll attempt to explain.
When turning on the device, there are 15 pictures. Some of them just speak, while others open a completely new set of 15 pictures. They're organized by topic, location, items, etc. For example on the main page is "pages" and activating that key opens a new page of 15 buttons. On the new page one button is "school" and by activating the "school" button, a new set of 15 buttons appear. Within that set there is a button for "center time" that opens 15 new buttons, each of them a choice that Ellie can make for her center time activity.
One day as I was getting dinner on the table I casually said to Ellie, "Why don't you tell Emma about school?" As I walked into the kitchen I heard nothing until "library center, library center, library center." I came in to see that Ellie had activated "pages" and then "school" and then "center time" and then "library center" multiple times. I had attended school that day with Ellie and she had chosen to be in the "library center" for the duration of her "center time."
Amazing! Ellie could not express this other than through her device. We feel so blessed to live in the technology era. The device we've had has been a trial and soon we will be without it again. We're working on purchasing one of our own but we've learned, through experience, this takes time when dealing with insurance companies. We're praying that the process moves smoothly and quickly, for Ellie's sake. Now that we've seen how clearly she is able communicate with her device, we don't want to see her without it.
Thanks for following us on this journey of life.
Ellie's trial speech device, the EchoPoint2, has been with us for about 4 weeks. I've never seen something so amazing! The device is calibrated to Ellie's eyes and when she stops and "gazes" on a picture for more than .7 of a second, it speaks the voice output programed into that picture. Within minutes, the first time trying the device with Ellie at home, she was opening new picture files and making choices. It's been incredible and validating for our family to watch her express preferences and needs. She's in there, she really is, she just can't get the words to come out verbally.
The second interesting thing about the EchoPoint is that it's a touch/eye gaze device. We've been baffled watching her try to use the device with her hands. If I place the device so that Ellie can touch it, she will. What's interesting is that she'll hit the same button over and over again. She doesn't vary her choices, or open new sets of pictures or menus. She's limited to basically the first page with 15 pictures. When she's using eye gaze function, she can zip through 5 menus of 15 pictures each, making choices and communicating along the way. I know it's a bit hard to comprehend so I'll attempt to explain.
When turning on the device, there are 15 pictures. Some of them just speak, while others open a completely new set of 15 pictures. They're organized by topic, location, items, etc. For example on the main page is "pages" and activating that key opens a new page of 15 buttons. On the new page one button is "school" and by activating the "school" button, a new set of 15 buttons appear. Within that set there is a button for "center time" that opens 15 new buttons, each of them a choice that Ellie can make for her center time activity.
One day as I was getting dinner on the table I casually said to Ellie, "Why don't you tell Emma about school?" As I walked into the kitchen I heard nothing until "library center, library center, library center." I came in to see that Ellie had activated "pages" and then "school" and then "center time" and then "library center" multiple times. I had attended school that day with Ellie and she had chosen to be in the "library center" for the duration of her "center time."
Amazing! Ellie could not express this other than through her device. We feel so blessed to live in the technology era. The device we've had has been a trial and soon we will be without it again. We're working on purchasing one of our own but we've learned, through experience, this takes time when dealing with insurance companies. We're praying that the process moves smoothly and quickly, for Ellie's sake. Now that we've seen how clearly she is able communicate with her device, we don't want to see her without it.
Thanks for following us on this journey of life.
It's been 3 years last week since my Grandma died. Thinking about her makes me cringe and smirk all at once. Gosh I miss her spunk, her perseverance, her passion. Several years ago, while Grandma was still living, an attorney and I were talking and he mentioned something Grandma had done or said. I remember thinking, "Oh Grandma." and shaking my head. I'll never forget what Hugh told me. He said his father had told him years before that she was a "survivor." I've thought of that moment time and time again. For some, she was too strong and opinionated; for most probably. Still, thinking about our years working and doing life together, I smile and miss her.
I wonder, just as I have for the years since Hugh said those words, which experiences made her a "survivor." Was it doubling the number of children she had by adopting 4 more while her own were still small? Maybe it was working at the packing house, or driving a straight-truck hauling seed-corn. Perhaps it was opening her own real estate office in 1981 and surviving in that market for more than 25years? Could it have been losing grandpa? Being alone for 10 years before marrying again? Maybe it was taking on the fight with ovarian cancer, and beating the odds. Was it spending her years working with people who didn't speak her language, needed help with everything from credit and immigration to jobs, children, and rides? Maybe it was her passion for serving and sharing her faith in a culture so wrapped up in being "politically correct."
Grandma was an amazing, spitfire, loving and passionate person. She never was afraid to speak her mind and tell people exactly what it was that they should be doing with their lives or their children. She loved people she didn't even know because she knew they needed loving. I've come to the conclusion that Bill was right about Grandma, she was a "survivor" but she did so much more than survive, she really loved in a way many are afraid to do. I only hope one day I can do the same.
I wonder, just as I have for the years since Hugh said those words, which experiences made her a "survivor." Was it doubling the number of children she had by adopting 4 more while her own were still small? Maybe it was working at the packing house, or driving a straight-truck hauling seed-corn. Perhaps it was opening her own real estate office in 1981 and surviving in that market for more than 25years? Could it have been losing grandpa? Being alone for 10 years before marrying again? Maybe it was taking on the fight with ovarian cancer, and beating the odds. Was it spending her years working with people who didn't speak her language, needed help with everything from credit and immigration to jobs, children, and rides? Maybe it was her passion for serving and sharing her faith in a culture so wrapped up in being "politically correct."
Grandma was an amazing, spitfire, loving and passionate person. She never was afraid to speak her mind and tell people exactly what it was that they should be doing with their lives or their children. She loved people she didn't even know because she knew they needed loving. I've come to the conclusion that Bill was right about Grandma, she was a "survivor" but she did so much more than survive, she really loved in a way many are afraid to do. I only hope one day I can do the same.
Subscribe to:
Posts (Atom)