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.
Tuesday, September 13, 2011
Big Sister Emma
On the way home from town tonight, Emma told me that today she made a note for her teacher.
Nothing too out of the ordinary for a 2nd grader, right?
Tonight she told me what the note said...
Someday I'm going to be a neurologist or a rett syndrome doctor.
My little sister, Ellie is 5. She has rett syndrome. Most 5 year old girls with rett syndrome can't walk or use their hands. They have to be in wheel chairs. My sister CAN walk but she can't talk.
....Emma told me that she hasn't talked about Ellie at school this year. She said it was easier for her to write this note to her teacher than to explain about Ellie. Tonight when I went to tuck Emma into bed, she was reading her gigantic "Human Body" book; looking at a two page spread on cells. She told me it's her favorite part of the book. It made me smile. I told her that there are special doctors that do research on cells just like that all day long. Her eyes lit up as she said, "REALLY?!" I looked at her and envisioned, an all grown up, Emma in a white lab coat standing over a microscope and I thought, "Someday you'll be working to cure the diseases of this world... but I really hope Rett is long gone by then."
Saturday, August 20, 2011
Missing Grandma Today
I've had "one of those days." Today would have been my Grandma Clara's birthday but she's passed away. Feels like just months ago but it's already been almost 3 years. We shared an office for 6 years, I learned so much from her. We were more like best friends or sisters than grandmother and granddaughter. The past few weeks have been tough on me and before when things were tough I could go sit with Grandma and we could figure it out. I really miss that.
We've had lots of changes happening. I'm just feeling sad, maybe it's that I'm finally letting myself digest the past several months. Maybe it's that some of those things are coming to a head and I just can't shove them to the back of my mind any more. We moved back "home" last week but it just doesn't feel like home. The landscape is so very different and all that's left is our house. Compared to the plethura of buildings that previously dotted our little corner of the world, it feels so empty. Last week, Emma started second grade which officially ended summer. Ellie starts school on Monday <sniffle> and I'm just plain not ready. I love her teachers and her room looks wonderful. I have every reason to be hopeful and excited about the opportunities she's going to have there and I am. I'm just struggling I guess, especially today.
Nicholas cannot handle when I show emotion. Apparently, I'm too opinionated and passionate and I need to just shut up. (I blame you for those traits Grandma.) I swear I've always been this person. I specifically remember trying to convert my middle school peers from Buhdism to Christianity, having heated conversations about abortion all throughout school, leading a bible study for my peers as an 8th grader, and always advocating for immigrants. I'm not sure how all of that suddenly gets to him and makes me over the top. Maybe I've intensified with age?! It doesn't matter who's changed or what's changed, I get that. I just really needed to vent and pour it out because if I don't that thread I'm hanging onto might break.
We've had lots of changes happening. I'm just feeling sad, maybe it's that I'm finally letting myself digest the past several months. Maybe it's that some of those things are coming to a head and I just can't shove them to the back of my mind any more. We moved back "home" last week but it just doesn't feel like home. The landscape is so very different and all that's left is our house. Compared to the plethura of buildings that previously dotted our little corner of the world, it feels so empty. Last week, Emma started second grade which officially ended summer. Ellie starts school on Monday <sniffle> and I'm just plain not ready. I love her teachers and her room looks wonderful. I have every reason to be hopeful and excited about the opportunities she's going to have there and I am. I'm just struggling I guess, especially today.
Nicholas cannot handle when I show emotion. Apparently, I'm too opinionated and passionate and I need to just shut up. (I blame you for those traits Grandma.) I swear I've always been this person. I specifically remember trying to convert my middle school peers from Buhdism to Christianity, having heated conversations about abortion all throughout school, leading a bible study for my peers as an 8th grader, and always advocating for immigrants. I'm not sure how all of that suddenly gets to him and makes me over the top. Maybe I've intensified with age?! It doesn't matter who's changed or what's changed, I get that. I just really needed to vent and pour it out because if I don't that thread I'm hanging onto might break.
Tuesday, July 5, 2011
Whirlwind
June 30, 2011
As you probably have guessed, the sudden happenings of our life kind of overtook my devotion to the blog. I know many of you have been waiting for an update since April probably. I do have a large sense of guilt in that some of you probably think I’ve fallen off the face of the Earth. Please know that I have not and that it’s not personal! God has taken me on a bit of a journey the last few months and while I’ve missed some of you soo sooo deeply. I’ve laid in bed wondering about you and become an insomniac of sorts over it. This has definitely been a season of purging. God’s been using this time to show me some things and I’ve been using this internet-less time to work like mad so that I can spend the fall/winter hopefully catching up with you all. I’ve stopped in a couple times briefly to rattle off the facts without much comment. I’ve had so many blog entries logged in my brain but never quite got them down in type. I should tell you that it’s 2am right now and a restless night of insomnia has left me here. Laugh. We have no internet (where we’re living now) so I’ve grown accustomed to saving emails, etc in Word to send/upload when I get time to stop at a restaurant with WIFI.
I think part of me has been relieved at the whirlwind of events surrounding Ellie’s new diagnosis. I do enjoy keeping busy and the last 2 months it’s been a way to keep my mind on the tasks at hand. It’s kept the fear at bay some, I think. Ellie had 3 bad nights a couple weeks ago. During all three, she cried in pain with her fists clenched at her chest. I know she wanted a drink one of the nights but I couldn’t get her to take the water bottle from me; even when I tried to uncurl her fingers and put them around the bottle. I held her, afraid that this was “IT” … the day she lost hand use. I held her and fretted until she finally relaxed enough to fall asleep. I laid in bed afraid, wondering how we’d adapt if one day that was the only thing she could do with her hands. Sigh. As I sit here, I’m tearing up thinking about that but with certainty that we’d manage to cope. I know it sounds cheesy but I really do find some comfort in knowing that God has a plan. I’m not a plan-a-holic like my friend, Tab. ;) I generally can roll with the punches. With Ellie, I find myself micro-analyzing her every move until I remind myself that I don’t have to “know” or “plan” or “predict” the future because God already has it done. Not that I don’t worry, but I’m learning to let Him carry what I know I cannot. Yet I’m still a work in progress.
Ellie turned 5 last week. She’s our Summer Solstice baby, born the first day of summer. While summer was definitely welcome in Iowa, I approached Ellie’s 5th birthday with some anxiety. Turning 5 is like turning over a whole new leaf and it does make me nervous. Ellie’s going to start school this year, which is huge for a Momma that’s taken care of pretty much all of her care for the last 5 years. Letting her go off with strangers for 8hrs a day gives me a bit of an anxiety attack. I know it’s a natural and essential part of development but I kinda like having all the control! Ellie’s going to be at a local school that’s big enough and has enough funding to give her everything she needs. She’ll be in a classroom with of 13 with 3 or 4 adults. I know that 4 of the children in the room have IEP’s and the other 9 are Headstart, “typical” kids. I’m not sure what my days will be like with only Eva. I’m sure it will change the dynamics of things around here! Eva kinda gets shorted on her “baby of the family” status because of Ellie’s needs. It’s amazing how things change and how kids adapt so much more naturally than adults. Eva’s really taken the roll of middle child in our family, she doesn’t get to be the needy, baby of the family very often. I chuckle at how both of the girls have become little therapists; imitating all the things they’ve seen and heard at our therapy time with occupational, speech and physical therapy. Emma played school with the girls a couple days ago and as she explained to me how she modified curriculum for Ellie (and very appropriately, I might add) I smiled and wondered if maybe some teachers could take lessons from her!! Emma’s a very logical girl. It was amazing to see how naturally she modified her “school,” keeping it “fair” to Eva by not changing things too much but still allowing Ellie to succeed.
Ellie turned 5 last week. She’s our Summer Solstice baby, born the first day of summer. While summer was definitely welcome in Iowa, I approached Ellie’s 5th birthday with some anxiety. Turning 5 is like turning over a whole new leaf and it does make me nervous. Ellie’s going to start school this year, which is huge for a Momma that’s taken care of pretty much all of her care for the last 5 years. Letting her go off with strangers for 8hrs a day gives me a bit of an anxiety attack. I know it’s a natural and essential part of development but I kinda like having all the control! Ellie’s going to be at a local school that’s big enough and has enough funding to give her everything she needs. She’ll be in a classroom with of 13 with 3 or 4 adults. I know that 4 of the children in the room have IEP’s and the other 9 are Headstart, “typical” kids. I’m not sure what my days will be like with only Eva. I’m sure it will change the dynamics of things around here! Eva kinda gets shorted on her “baby of the family” status because of Ellie’s needs. It’s amazing how things change and how kids adapt so much more naturally than adults. Eva’s really taken the roll of middle child in our family, she doesn’t get to be the needy, baby of the family very often. I chuckle at how both of the girls have become little therapists; imitating all the things they’ve seen and heard at our therapy time with occupational, speech and physical therapy. Emma played school with the girls a couple days ago and as she explained to me how she modified curriculum for Ellie (and very appropriately, I might add) I smiled and wondered if maybe some teachers could take lessons from her!! Emma’s a very logical girl. It was amazing to see how naturally she modified her “school,” keeping it “fair” to Eva by not changing things too much but still allowing Ellie to succeed.
I made contact with 2 different companies that sell eye-gaze devices. PRC was the most customer friendly and helpful and honestly that speaks to me, chuckle. Sharron is a speech therapist AND a rep for the company and was so helpful and understanding. We’re waiting for a device to come in so that we can “trial” it for a portion of the summer. We’re hoping we can have it until we get funding through to buy one! J We were so close to buying a touch device. After hearing all that I did about apraxia at the conference in Boston, I decided we needed to get an eye-gaze device or at the very minimum a device that could have eye-gaze added in the future. We started doing some low-tech work with a piece of plexi-glass and pictures behind it. We’re starting some data collection on how well Ellie can use her eyes for communicating, an essential part of getting insurance to pay for a device. I am really loving the changes we’ve made this month with speech therapy!! Laura is a wonderful asset to us at this point and I love how flexible and willing to rework things and to go with new ideas she is! The other girls and I spent this week’s session in the waiting room, for the first time. I think it went really well and may become our new norm. I think it’s easier for Ellie to concentrate and focus without the extra noise, movement and competition that the other two bring to the room. Having 3 hrs of quiet time to work with WIFI access was REALLY nice too!!
Ellie’s wanted so badly to be able to ride a bike for the past 2 summers. This summer she’s finally getting a new bike! We’ve started saving through our waiver program to buy a Kettrike. This specially designed bike has extra safety features along with things that will make it easier for Ellie to learn to ride and will make it easier for us to push/steer her. It’s also a bike that will grow with her for the next several years. We’re really excited about it! I’ll take pictures as soon as it’s here!!
Ellie’s wanted so badly to be able to ride a bike for the past 2 summers. This summer she’s finally getting a new bike! We’ve started saving through our waiver program to buy a Kettrike. This specially designed bike has extra safety features along with things that will make it easier for Ellie to learn to ride and will make it easier for us to push/steer her. It’s also a bike that will grow with her for the next several years. We’re really excited about it! I’ll take pictures as soon as it’s here!!
We’re making progress on tornado cleanup. It’s slow and tedious but we’re moving forward. Getting power back to the house has been such a frustration to me. It’s still not powered back up yet. It’s something I just cannot do on my own and so it’s just not getting done. In spite of my persistent pestering, we’re still without power – I’m not nagging but seriously it’s been almost 3 months!! – After yanking up glass-filled carpet I decided to hire BV Custom Floors to refinish the hardwood in the living room, hallway and all 3 bedrooms. I’m SOOO glad! Tim did an amazing job on the floors. The final coat of finish went on last weekend and at any point this week we can start moving furniture back in! *So all of you that have offered to help clean, scrub, and paint—I’ll need you soon!!** I’m so excited to be rid of carpet!! I promised Emma a fluffy rug for the center of her room and we’ll probably get one for each bedroom. I can’t wait to get back home! I’m so behind on everyone else’s lives – BOY HAVE I MISSED FACEBOOK!! So, the next few days are filled with hauling the remainder of iron from Pork 76 (last summer’s rehab.) We had the second half of the hog unit taken down this week. We’re hoping this makes the place more marketable as it will give us about 4 acres of tillable ground that we’re planning to plant to soybeans.
The source of a lot of my excitement the last few months has been English classes with The Bridge. I’m the English Coordinator and I teach one morning a week. It’s a huge source of joy for me. I absolutely love my students and my co-teachers. We’re have 9 classes per week and have 7 students in our morning classes. It’s been wonderful for me to be able to use my education/expertise in a way that serves and reaches out to the immigrant population of Storm Lake. I’m so excited about the ministry God has given us and the opportunities I’ve been given! J I could spend a week telling you all about each student and their personal stories and struggles and praises. They are my friends on a level that I don’t think I’ve gotten to experience enough in my life. I love the women I teach. I really, really, love them. These ladies have been through so much and yet I see how raw and openly they love and they make me do the same. I don’t feel the need to protect myself from them. They’re real and straightforward and we just mesh together without holding back. It’s so obvious to me that this was God’s plan and that his work is being done through The Bridge and through our English classes. It makes me joyful. J
I’ve thought so many times over the last last few years about the book I’m someday going to have to write. In the last few months I’ve decided it may have to be a series. Chuckle. So much has happened, changed, shifted that this hour and a half of writing (it is now 3:30am) seems like I’ve only skimmed the surface!
We’re heading out West soon. We need some time to just walk away from the endless work and we won’t unless we leave. I can think of a million things I should do instead but I know they’ll all be waiting for me when we get home!
Thanks for reading and caring.
Blessings,
Thanks for reading and caring.
Blessings,
Angie
Honestly...
I don't think I've ever said "this sucks" as many times as I have in the last 90 days. Those of you who know me well know that I pride myself in not being among the "criers." I can laugh about it now though... through tears. I spent the first hour after diagnosis hiding in my mother-in-laws bedroom crying my eyes out. Why in my in-laws bedroom you might ask? I really wish it were not part of this Rett journey... really! Nine days before we got "the call" that put us into this new Rett World, our farm was leveled by a tornado. You know I've sat and wondered... I've questioned... I've guilted... but seriously the timing just sucked. I mean there are some things in life that cannot be better described in any other manner... sometimes things just suck. I've tried being really optimistic and hopeful and I just can't pull it off on my own. I have such an immense wave of emotions surrounding life right now but mostly anger and mourning. So in the midst of my internet-less life that seems to be in this hazy-limbo between homes and worlds... I'm starting this new blog. Mostly because the old blog www.fightautism.webs.com just doesn't make sense any more. I'm trying to decide if a diagnosis of Rett means that we beat autism. Chuckle.
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