I'm listening now to Mandisa's song "Overcomer" and it spurred me to come blog. An update is definitely long overdue. I find that we're already almost to November, fall really is beautiful in this part of the country. In spite of that sinking feeling that the snow and winds will soon be swirling outside, we have joy in the season we are in.
Ellie had a summer of change, of growing up, of putting things behind us, in the most joyous way possible. Not to say that change doesn't come hard, actually, really, really hard. We decided to learn how to use the toilet this summer. No small task for a girl who's body isn't 100% obedient to her commands. No small task for a daughter, equally as stubborn as her mother. Probably the most trying times we've had in our 7 years together, were had this summer. I can smile and laugh about it now, because we won and that made it all worth it.
Ellie has learned to use the toilet all the time, which is nothing short of a miracle. A blessing straight from God, really. We are overcomers! Whooo hooo! (Yes, I say that with a fisted arm-pump!)
Ellie also learned to ride her adapted tricycle, independantly. She rode 2 miles one night and followed that up by being the STAR of the 4th of July parade on her bike. I am so proud of the way she's overcome her body. So proud of the way that she's kicked Rett in the teeth and learned to do what she "shouldn't" be able to do. She's now showing her little sister what kindergarten is all about. Eva's flourishing in kindergarten, especially with such an experienced and competent guide. We requested that Ellie stay in kindergarten this year to work on her number sense and give her a little more time to develop her math skills before putting her into first grade. This means that Ellie (who's 7 now) and Eva (who is now 5) are both in kindergarten. It's been a great choice. We feel so so blessed by the women God has placed in this environment for both our girls. Emma is enjoying the freedom. flexibility, and one on one time of being home-schooled for 4th grade.
The girls are all having a great time announcing to anyone who will listen that they're soon going to have a baby in their house! We're due March 17 with baby number 4. :) They got to watch our little one on the ultrasound and take home little keepsake pictures. Ellie keeps reminding me of saying "mama mama" and pointing to my (growing) belly and then pointing to her feet. One of the pictures from the ultrasound clearly shows our little one's feet and toes as if pressed up against the screen. It's had an impression on her. I'm praying she's at doting once baby arrives, as she is now!! She's not known for her gentleness.
So much change in such a short time. All blessings and all things to be thankful and joyous about! I pray your fall is equally "full."
~Angie
Tuesday, October 29, 2013
Thursday, April 18, 2013
From the Ashes
Today's a special anniversary for our family, which means I should blog right?! I mean it's only been like 6 months!
On this day two years ago we were still reeling from the tornado, staying with my husbands family trying to get a grasp on what we were supposed to do. Just thinking about it makes me feel a little bit nauseous. I remember the phone call. It was almost bedtime for the girls, I remember Nicholas answering and passing me the phone. I quietly retreated to my in-laws bedroom for privacy and he went out to the living room to entertain the girls. Dr.Renaud knew about the tornado though I don't remember how she knew. She played a sort of guessing game with me as to what I thought the results of Ellie's genetic test for Rett were, which I thought was strange at the time (actually I still think it was strange.) I tried to convince myself that they must be negative since she was being so lighthearted about it. I remember her apologizing just before she told me the result was positive, saying how she knew it couldn't come at a worse time. I'm not sure how but I held myself together. I asked questions, scheduled a visit for the next week to discuss the diagnosis and prognosis. As I hung up the phone I sunk into the corner of the bedroom and the flood of tears began. Nicholas was on the other side of the wall, his entire family just steps away, our girls...our Ellie playing just outside the bedroom. I felt so alone, so isolated and forgotten. The information I'd read spun in my head reminding me of the "phases" and the future prognosis. I was so literally crushed in spirit. April 2011 was definitely a time when we "fell into the ashes" as the song below says.
Since 2011, we've "made a new beginning." We launched ourselves into cleanup mode literally and emotionally. We have spent the last two years working with specialists, therapists, doctors, teachers and parents to ensure that we're doing everything we can to maintain Ellie's good health and to push her to achieve new milestones.
In the last year, Ellie's learned to read and spell words. She can successfully match words that she's practiced making to pictures showing us that she can read the word and understand it's meaning. She's made wonderful progress using her speech device (EchoPoint2) and routinely tells us how she's feeling. (We're beginning to remember the "spunk" Emma started to display around this age!) For example, telling her PT (as she entered the room) that she was "Done...Ready to go home... Frustrated." Gotta love that kind of hear-felt message!!
Ellie also learned to ride a bike this winter. It's a really awesome adapted tricycle! After half a dozen sessions practicing riding in the hospital hallway, she's doing really great and ready for spring to come so she can break it in on the bike-trail!
We continue to hope and pray that a cure is on the horizon. We live our lives to their fullest knowing that every day for each of us is nothing short of a gift. The last two years have changed us, have shown us things we otherwise wouldn't/couldn't have seen. I shake my head thinking about how crushed I felt then and how I can see now that it was a necessary part of our journey. God has used life to mold and shape our entire family. I really feel that without being so broken we wouldn't have agreed to take the journey he had ahead of us.
After the tornado and Ellie's diagnosis, as people came to our side to help, we vowed to turn their giving of time and resources into blessings for others. In 2011, we received a settlement from our insurance company on our house (the only part of our farm that was insured.) We opted to pay off our farm, fix our house over time, and turn that equity into rental properties that we could fix and rent reasonably to people who needed quality, affordable housing. Since 2011, we have purchased an apartment building and a couple houses (all that needed a LOT of work!) We've used these properties to support and minister to people who were still in the "ashes." I can't tell you the joy I find in seeing a family move from our apartments into a house (one that they can afford!!) Getting to be a part of their "new beginning" is truly a blessing for all of our family. It's fun to work when you can watch that work turn into a blessing for another family. I have found the greatest blessings in teaching skills to newcomers, as they work off their rent working on a house/apartment that another family will soon occupy. The relationships being built have grown so fast and so deeply that I can't begin to explain here. I simply want all of you to know that your help to our family, when we were in "the ashes," didn't stop with us... it's still moving forward. What a gift your love has given and that's the way it's supposed to be.
Kutless, "That's What Faith Can Do".
Here are the lyrics:
On this day two years ago we were still reeling from the tornado, staying with my husbands family trying to get a grasp on what we were supposed to do. Just thinking about it makes me feel a little bit nauseous. I remember the phone call. It was almost bedtime for the girls, I remember Nicholas answering and passing me the phone. I quietly retreated to my in-laws bedroom for privacy and he went out to the living room to entertain the girls. Dr.Renaud knew about the tornado though I don't remember how she knew. She played a sort of guessing game with me as to what I thought the results of Ellie's genetic test for Rett were, which I thought was strange at the time (actually I still think it was strange.) I tried to convince myself that they must be negative since she was being so lighthearted about it. I remember her apologizing just before she told me the result was positive, saying how she knew it couldn't come at a worse time. I'm not sure how but I held myself together. I asked questions, scheduled a visit for the next week to discuss the diagnosis and prognosis. As I hung up the phone I sunk into the corner of the bedroom and the flood of tears began. Nicholas was on the other side of the wall, his entire family just steps away, our girls...our Ellie playing just outside the bedroom. I felt so alone, so isolated and forgotten. The information I'd read spun in my head reminding me of the "phases" and the future prognosis. I was so literally crushed in spirit. April 2011 was definitely a time when we "fell into the ashes" as the song below says.
Since 2011, we've "made a new beginning." We launched ourselves into cleanup mode literally and emotionally. We have spent the last two years working with specialists, therapists, doctors, teachers and parents to ensure that we're doing everything we can to maintain Ellie's good health and to push her to achieve new milestones.
In the last year, Ellie's learned to read and spell words. She can successfully match words that she's practiced making to pictures showing us that she can read the word and understand it's meaning. She's made wonderful progress using her speech device (EchoPoint2) and routinely tells us how she's feeling. (We're beginning to remember the "spunk" Emma started to display around this age!) For example, telling her PT (as she entered the room) that she was "Done...Ready to go home... Frustrated." Gotta love that kind of hear-felt message!!
Ellie also learned to ride a bike this winter. It's a really awesome adapted tricycle! After half a dozen sessions practicing riding in the hospital hallway, she's doing really great and ready for spring to come so she can break it in on the bike-trail!
We continue to hope and pray that a cure is on the horizon. We live our lives to their fullest knowing that every day for each of us is nothing short of a gift. The last two years have changed us, have shown us things we otherwise wouldn't/couldn't have seen. I shake my head thinking about how crushed I felt then and how I can see now that it was a necessary part of our journey. God has used life to mold and shape our entire family. I really feel that without being so broken we wouldn't have agreed to take the journey he had ahead of us.
After the tornado and Ellie's diagnosis, as people came to our side to help, we vowed to turn their giving of time and resources into blessings for others. In 2011, we received a settlement from our insurance company on our house (the only part of our farm that was insured.) We opted to pay off our farm, fix our house over time, and turn that equity into rental properties that we could fix and rent reasonably to people who needed quality, affordable housing. Since 2011, we have purchased an apartment building and a couple houses (all that needed a LOT of work!) We've used these properties to support and minister to people who were still in the "ashes." I can't tell you the joy I find in seeing a family move from our apartments into a house (one that they can afford!!) Getting to be a part of their "new beginning" is truly a blessing for all of our family. It's fun to work when you can watch that work turn into a blessing for another family. I have found the greatest blessings in teaching skills to newcomers, as they work off their rent working on a house/apartment that another family will soon occupy. The relationships being built have grown so fast and so deeply that I can't begin to explain here. I simply want all of you to know that your help to our family, when we were in "the ashes," didn't stop with us... it's still moving forward. What a gift your love has given and that's the way it's supposed to be.
Kutless, "That's What Faith Can Do".
Here are the lyrics:
What Faith Can Do
Everybody falls sometimes
Gotta find the strength to rise
From the ashes
And make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise
Gotta find the strength to rise
From the ashes
And make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise
Wednesday, November 28, 2012
The blogging world has fallen off my list the last few months. Sad but true, life continues as we fall beneath the swells of it. Now the mixture of scents brings me back to this world that I have missed. A sweet fragrance of laundry soap, bath water and vomit. Mmmmm. Just like old times.
It's nearly 2am right now and I just finished putting Ellie back to bed after yet another night of vomiting. It makes me sad and frustrated. We've been nearly 4 years free of the cyclic vomiting and now it has reared it's ugly head. I'm out of practice and not as keenly tuned to her sounds pre-vomit...so I've washed a lot of sheets the past week and a half. Those of you that have followed me for a long time might remember reading on our original website at www.fightautism.webs.com about cyclic vomiting. From birth, Ellie cycled. Seemingly normal behavior all day and evening followed by a random non-waking incident of vomiting in the middle of the night, typically between 12 and 1 am. I just washed vomit out of Ellie's hair (which now nearly reaches her lower back) again, for about the 7th or 8th time in the past week and a half. She literally almost slept through the bath. It's both strange and terrifying. When I find her she's usually flat on her back with her face and neck covered in vomit. I've always feared aspiration and we've been blessed by her always clearing her own airway. It' helps too that she's close to my room and I'm usually already bedside as she's vomiting. It's amazing (and such a blessing) that she always has managed to clear her airway after vomiting while laying on her back. God is good, even as we struggle.
I feel washed over with an entire series of emotions all over again. Each round of life, every change, every new development forces me into another phase of somethingness. I don't want to say "grief" because I want to think that I've grieved and I'm past it. Even as I write it, I laugh at myself. How many times can a person cycle through denial?? I just read a book talking about how grief isn't really phases, but rather waves that wash over you and then return to wash over again.
As I'm washing through her long locks of hair, thinking about how rotten it is that this has returned, I'm wondering if Mayo would have any new insight into this. We've run the GI workups before, done days of monitoring watching for an EEG correlate, nothing's ever come of it. I'm weighing the advantage and possibilities of testing, while considering the disadvantages of a scope, more x-rays, radioactive barium. I'm wondering what Ellie would choose; would she say, "It's not that bad to throw up in the night. Ten nights of vomiting is better than all the annoyance of testing. I cry less tears over vomiting in my own house than I do in the hospital doing all those tests." I resolve to ask her tomorrow, to give her the choice, let her decide this time. I'm coaching myself to really let her have the final say, I'm prepping in my head how I'll help her weigh the pros and cons and then really turn it over to her and let her decide.
The fresh sent of vomit still lingers, regardless of the pile of blankets and jammies already swirling in the washer. I'm thinking about how early tomorrow will come, the list of things to do tomorrow, already knowing that the day will be so full. I am reminded that life continues, even as we fall beneath the swells of it.
It's nearly 2am right now and I just finished putting Ellie back to bed after yet another night of vomiting. It makes me sad and frustrated. We've been nearly 4 years free of the cyclic vomiting and now it has reared it's ugly head. I'm out of practice and not as keenly tuned to her sounds pre-vomit...so I've washed a lot of sheets the past week and a half. Those of you that have followed me for a long time might remember reading on our original website at www.fightautism.webs.com about cyclic vomiting. From birth, Ellie cycled. Seemingly normal behavior all day and evening followed by a random non-waking incident of vomiting in the middle of the night, typically between 12 and 1 am. I just washed vomit out of Ellie's hair (which now nearly reaches her lower back) again, for about the 7th or 8th time in the past week and a half. She literally almost slept through the bath. It's both strange and terrifying. When I find her she's usually flat on her back with her face and neck covered in vomit. I've always feared aspiration and we've been blessed by her always clearing her own airway. It' helps too that she's close to my room and I'm usually already bedside as she's vomiting. It's amazing (and such a blessing) that she always has managed to clear her airway after vomiting while laying on her back. God is good, even as we struggle.
I feel washed over with an entire series of emotions all over again. Each round of life, every change, every new development forces me into another phase of somethingness. I don't want to say "grief" because I want to think that I've grieved and I'm past it. Even as I write it, I laugh at myself. How many times can a person cycle through denial?? I just read a book talking about how grief isn't really phases, but rather waves that wash over you and then return to wash over again.
As I'm washing through her long locks of hair, thinking about how rotten it is that this has returned, I'm wondering if Mayo would have any new insight into this. We've run the GI workups before, done days of monitoring watching for an EEG correlate, nothing's ever come of it. I'm weighing the advantage and possibilities of testing, while considering the disadvantages of a scope, more x-rays, radioactive barium. I'm wondering what Ellie would choose; would she say, "It's not that bad to throw up in the night. Ten nights of vomiting is better than all the annoyance of testing. I cry less tears over vomiting in my own house than I do in the hospital doing all those tests." I resolve to ask her tomorrow, to give her the choice, let her decide this time. I'm coaching myself to really let her have the final say, I'm prepping in my head how I'll help her weigh the pros and cons and then really turn it over to her and let her decide.
The fresh sent of vomit still lingers, regardless of the pile of blankets and jammies already swirling in the washer. I'm thinking about how early tomorrow will come, the list of things to do tomorrow, already knowing that the day will be so full. I am reminded that life continues, even as we fall beneath the swells of it.
Wednesday, July 25, 2012
Our little beauty + Clinical Trial
Ellie is standing looking out the window to the pasture as I sit here typing. She's "talking" and pointing out the window. I know she's talking about the cows and Emma's horse Lacy. She loves these critters! Her eyes sparkle as she points and talks. It's a lot of "moo moo's" with points, nods and smiles. I respond just as if she'd told me that Concord just bumped Lucy and that little Layla has really gotten big. She smiles because she's happy that I treat her like a big girl, she's happy that she gets a turn to express herself. Her favorite buttons on her eyegaze are "can I have a turn" and "excuse me" followed by something she wants to interject. (Ellie moved to a 45 button PODD system on her talker and is ROCKING it! She's saying so many things that we never would have heard without it! Serious BLESSING that talker is!!) I'm awed by how effortless this kind of communication is for her and by how satisfied she is with my responses. She could easily be frustrated with me because my response is not exactly appropriate for what she was saying. Today she's not, today she's all smiles and nods with her long pigtails bouncing as she nods.
I interrupted our talk about cows to tell her how beautiful she is. She stopped talking and looked up and me with a big smile. She looked down for a couple seconds and fidgeted with her hands and then looked up grinning again. I told her how she has the smoothest cheeks and the prettiest skin color. How her sparkling eyes make everyone smile. She grinned again and turned back to the window. I saw how similar her response was to the other girls, to most girls really.
I started thinking about how frustrated I get with her at times. Like yesterday when she pulled my sweet potatoes out of the ground and tried to feed them to the birds. Or like a few days ago when she squeezed the bunny until it died and in the same day plunked another bunny into a tank of cold water, nearly drowning it. I thought of how hard and frustrated life is from her side of things. That maybe her behaviors really are a cry for attention or an expression of a need.
It makes me think about how I really don't know what hard is. I think about my running adventure (I'm planning to run a 1/2 marathon on Sept. 2) and how motivating it is for me to think of Ellie when I get to a tough spot in a run. When all I want to do is quit and give up, I don't because I know Ellie probably feels the same way and she perseveres. IF YOU WANT TO DONATE Along with a couple other gals, we are actually going to be the chairs of the Step UP 5K & 1/2 Marathon to take place on Sept. 2 at 7:30am. If you'd like to join me as I attempt my first EVER 1/2 Marathon, you can register HERE! I would love to get to run alongside of friends and supporters! Proceeds of the race will go back into a fund to purchase chip timing equipment for use by the Storm Lake Running Club.
I think about how empty life would feel without Ellie. I don't mind how much she needs me, we're used to it I guess. I read another Rett mom's blog this morning (READ IT HERE) and thought about how right she is. I share so many of the emotions and thoughts that she wrote about the possibility of losing Ellie. It's terrifying and yet we cannot live in fear. We have to press on, trudge ahead, survive and maybe even rise above surviving!
This week we will leave and travel to John's Hopkins for a clinical trial. It's not a big trial that we think will cure Rett, but it's a trial that they're seeing improvements with. We're hoping that our participation will help Ellie and we're also hopeful that our contribution to the research will help researchers better understand how Rett works. So please take some time this week to pray for us. Pray for safe travels and for our van to function as it needs to and for the success of this treatment for our precious Ellie!
Thanks for reading and for being a part of our lives. Thanks for supporting and cheering us.
I interrupted our talk about cows to tell her how beautiful she is. She stopped talking and looked up and me with a big smile. She looked down for a couple seconds and fidgeted with her hands and then looked up grinning again. I told her how she has the smoothest cheeks and the prettiest skin color. How her sparkling eyes make everyone smile. She grinned again and turned back to the window. I saw how similar her response was to the other girls, to most girls really.
I started thinking about how frustrated I get with her at times. Like yesterday when she pulled my sweet potatoes out of the ground and tried to feed them to the birds. Or like a few days ago when she squeezed the bunny until it died and in the same day plunked another bunny into a tank of cold water, nearly drowning it. I thought of how hard and frustrated life is from her side of things. That maybe her behaviors really are a cry for attention or an expression of a need.
It makes me think about how I really don't know what hard is. I think about my running adventure (I'm planning to run a 1/2 marathon on Sept. 2) and how motivating it is for me to think of Ellie when I get to a tough spot in a run. When all I want to do is quit and give up, I don't because I know Ellie probably feels the same way and she perseveres. IF YOU WANT TO DONATE Along with a couple other gals, we are actually going to be the chairs of the Step UP 5K & 1/2 Marathon to take place on Sept. 2 at 7:30am. If you'd like to join me as I attempt my first EVER 1/2 Marathon, you can register HERE! I would love to get to run alongside of friends and supporters! Proceeds of the race will go back into a fund to purchase chip timing equipment for use by the Storm Lake Running Club.
I think about how empty life would feel without Ellie. I don't mind how much she needs me, we're used to it I guess. I read another Rett mom's blog this morning (READ IT HERE) and thought about how right she is. I share so many of the emotions and thoughts that she wrote about the possibility of losing Ellie. It's terrifying and yet we cannot live in fear. We have to press on, trudge ahead, survive and maybe even rise above surviving!
This week we will leave and travel to John's Hopkins for a clinical trial. It's not a big trial that we think will cure Rett, but it's a trial that they're seeing improvements with. We're hoping that our participation will help Ellie and we're also hopeful that our contribution to the research will help researchers better understand how Rett works. So please take some time this week to pray for us. Pray for safe travels and for our van to function as it needs to and for the success of this treatment for our precious Ellie!
Thanks for reading and for being a part of our lives. Thanks for supporting and cheering us.
Wednesday, June 20, 2012
6 years old already
We had a splash-filled afternoon and evening today. We spent 6 hours today at the waterpark in town. Ellie loves to splash and run and jump in water. Watching her today made me so thankful for the abilities God has preserved in her. I felt a twinge of guilt as I watched her climb the gigantic staircase to the top of the water-slide, time after time. I was thinking of my friends and their little girls who are also fighting Rett. I grinned as she pulled herself up and out of the "bathtub" at the bottom of the slide, climbing over the edge and running back to the stairs. I cannot imagine the frustration she would have without the functional use of her hands. I felt so very grateful as I watched her grabbing balls from the water and throwing them across the pool at other kids. I smiled as she walked through water up to her neck heading for a group of pre-teen girls, thinking how much PT she was getting today while playing. I tried not to notice when the group of girls she tried to interact with all snickered and looked at each other when she touched their raft and got a little too far into their "personal bubbles." At the close of this day, I feel blessed for all the things Ellie can do. Tomorrow Ellie will turn 6. Our day at the waterpark was our way of celebrating Ellie and all of her abilities.
Too many days, I find myself caught up in the frustrations of how hard Rett can make our life. I want to wallow in self-pity for all that we must endure as compared to "typical" families. I want to study or wish or pray away Rett. Today, however, I am rejoicing.
Our Ellie is here, she's happy, and she's learning to communicate with us. She's satisfied with the things she gets to eat, in spite of her diet. She has wants and needs and is getting more and more stubborn about what those are and that we pay attention to them.
Just this week, I spent about 10hours reprogramming Ellie's device. I shifted her from a 15 button layout with quite limited speech options to 45 button layout with a PODD format. Two minutes into her FIRST trial with it, (while I sat on pins and needles praying she wouldn't reject it) she grinned and found the "special occasions" button and subsequently "birthday" "cake" "presents" "cards." To say I was beaming probably doesn't do it justice. What a little smarty pants! Of course, a couple days later, now that she's found the trusty "cow" page, I'm having a hard time getting much else out of her than "moos" and constant conversation about her favorite topic! It's so encouraging to see her working so hard to focus and use her eyes to activate the desired buttons, even though they're now much smaller and closer together. She shakes sometimes because she's focusing so hard. Yesterday I saw her kind of shake her head and squeeze her eyes shut, as she tried to refocus to make hits. Her determination and desire achieve is so strong, she is her mother's child! :)
Ellie's also recently mastered a new sign. "Mine" is her new favorite word. It cracks me up because I initially did this sign as a joke with her playing that something that really was hers, belonged to me. It started out as a back and forth of "it's mine" "no, it's mine" and now has progressed into Ellie using the sign appropriately and with humor at times. Yesterday when she activated a button on her talker that can represent any of these three, "I, me, my" She made her sign for "mine" indicating to me that that button meant her! I love how she smiles and how intently she uses her eyes to activate buttons and say what she has to say. It's amazing how determined she can be!
She really is an amazing little girl. I feel so very blessed that God chose me to be her Mommy.
Happy Birthday Ellie Boo
Too many days, I find myself caught up in the frustrations of how hard Rett can make our life. I want to wallow in self-pity for all that we must endure as compared to "typical" families. I want to study or wish or pray away Rett. Today, however, I am rejoicing.
Our Ellie is here, she's happy, and she's learning to communicate with us. She's satisfied with the things she gets to eat, in spite of her diet. She has wants and needs and is getting more and more stubborn about what those are and that we pay attention to them.
Just this week, I spent about 10hours reprogramming Ellie's device. I shifted her from a 15 button layout with quite limited speech options to 45 button layout with a PODD format. Two minutes into her FIRST trial with it, (while I sat on pins and needles praying she wouldn't reject it) she grinned and found the "special occasions" button and subsequently "birthday" "cake" "presents" "cards." To say I was beaming probably doesn't do it justice. What a little smarty pants! Of course, a couple days later, now that she's found the trusty "cow" page, I'm having a hard time getting much else out of her than "moos" and constant conversation about her favorite topic! It's so encouraging to see her working so hard to focus and use her eyes to activate the desired buttons, even though they're now much smaller and closer together. She shakes sometimes because she's focusing so hard. Yesterday I saw her kind of shake her head and squeeze her eyes shut, as she tried to refocus to make hits. Her determination and desire achieve is so strong, she is her mother's child! :)
Ellie's also recently mastered a new sign. "Mine" is her new favorite word. It cracks me up because I initially did this sign as a joke with her playing that something that really was hers, belonged to me. It started out as a back and forth of "it's mine" "no, it's mine" and now has progressed into Ellie using the sign appropriately and with humor at times. Yesterday when she activated a button on her talker that can represent any of these three, "I, me, my" She made her sign for "mine" indicating to me that that button meant her! I love how she smiles and how intently she uses her eyes to activate buttons and say what she has to say. It's amazing how determined she can be!
She really is an amazing little girl. I feel so very blessed that God chose me to be her Mommy.
Happy Birthday Ellie Boo
Wednesday, March 28, 2012
Thursday, March 22, 2012
Spring!
Time goes way too quickly.
Here we are it's already March. Ellie's been in school since fall and learning and growing in a lot of ways. I love her teachers and seeing her classmates accept and support her. It gives me hope that in spite of all the evil in this world, there is still good. Eva and I spend our days volunteering with The Bridge. We teach Adult English twice a week and coordinate the HopeRISE Program. We're working to connect, support and empower people in the name of Jesus. It's an amazing ministry that involves a lot of amazing people.
Ellie's speech device, a Echo2 with a Tobii Eye Gaze, arrived about 8 weeks ago now, it's already in for the repair of a broken screen. Ooops! We're blessed to have a loaner while hers is in the shop. Ellie has her device figured out and uses a combination of touch and eye gaze to communicate. More and more, we see her using it in a very purposeful way. She's always saying something, which IS pretty age-appropriate I guess! I feel like I'm telling her "no" more than I ever have had to before. (Simply because she couldn't ASK before!) Mostly she likes talking about food... who can blame her really?!
With the warm weather lately, we're in full swing moving towards spring. Trampolines are set up, the tractor's tried the garden once and soon we'll be putting in potatoes and carrots. The strawberry plants are popping up all over the place and we're vowing to keep the weeds out of them this year! I'm planning to share some of my garden space with friends this summer. Too many people are cramped up in apartments and just don't have the chance to grow their own food. We're all excited for what this summer holds. We'll have more crop ground than last year after all the tornado cleanup. While it's nice to have a lot of mess gone, we miss having places to park stuff and homes for our animals. A possible barn-moving and some construction of outbuildings is on this summer's agenda.
I have a stockpile of lumber for projects and I'm hoping to be able to share some of that experience with friends. A 4th of July craft booth may even be in my future.
I've been working towards a goal of running a 1/2 marathon this summer. My goal is to raise $100 for every race mile I run towards the research of a cure for Rett Syndrome. I'm up to about 9 miles in distance but I think I'll be ready for the first one this summer. I did a 10k while we were on vacation in San Diego in February and it went really well AND we raised about $400 for IRSF (International Rett Syndrome Research.) I plan to do all the local 5k's this summer as part of my training plan for the 1/2. We have a fundraising page at www.firstgiving.org. (Cure Rett 4 Ellie) If you're able, we would very much appreciate the donation towards a cure.
Speaking of a cure!~ The research continues to speed ahead. I praise God every time I read a new research article. The biggest news recently was the publication of an article in Nature (a science journal) about bone marrow transplants and some very amazing things they learned about the brains of Rett girls. While it's still only being tried in mouse-models, we're thrilled to know there are such intelligent people working towards a cure for Ellie and all the little girls like her. We're so hopeful that a cure will come soon.
Here we are it's already March. Ellie's been in school since fall and learning and growing in a lot of ways. I love her teachers and seeing her classmates accept and support her. It gives me hope that in spite of all the evil in this world, there is still good. Eva and I spend our days volunteering with The Bridge. We teach Adult English twice a week and coordinate the HopeRISE Program. We're working to connect, support and empower people in the name of Jesus. It's an amazing ministry that involves a lot of amazing people.
Ellie's speech device, a Echo2 with a Tobii Eye Gaze, arrived about 8 weeks ago now, it's already in for the repair of a broken screen. Ooops! We're blessed to have a loaner while hers is in the shop. Ellie has her device figured out and uses a combination of touch and eye gaze to communicate. More and more, we see her using it in a very purposeful way. She's always saying something, which IS pretty age-appropriate I guess! I feel like I'm telling her "no" more than I ever have had to before. (Simply because she couldn't ASK before!) Mostly she likes talking about food... who can blame her really?!
With the warm weather lately, we're in full swing moving towards spring. Trampolines are set up, the tractor's tried the garden once and soon we'll be putting in potatoes and carrots. The strawberry plants are popping up all over the place and we're vowing to keep the weeds out of them this year! I'm planning to share some of my garden space with friends this summer. Too many people are cramped up in apartments and just don't have the chance to grow their own food. We're all excited for what this summer holds. We'll have more crop ground than last year after all the tornado cleanup. While it's nice to have a lot of mess gone, we miss having places to park stuff and homes for our animals. A possible barn-moving and some construction of outbuildings is on this summer's agenda.
I have a stockpile of lumber for projects and I'm hoping to be able to share some of that experience with friends. A 4th of July craft booth may even be in my future.
I've been working towards a goal of running a 1/2 marathon this summer. My goal is to raise $100 for every race mile I run towards the research of a cure for Rett Syndrome. I'm up to about 9 miles in distance but I think I'll be ready for the first one this summer. I did a 10k while we were on vacation in San Diego in February and it went really well AND we raised about $400 for IRSF (International Rett Syndrome Research.) I plan to do all the local 5k's this summer as part of my training plan for the 1/2. We have a fundraising page at www.firstgiving.org. (Cure Rett 4 Ellie) If you're able, we would very much appreciate the donation towards a cure.
Speaking of a cure!~ The research continues to speed ahead. I praise God every time I read a new research article. The biggest news recently was the publication of an article in Nature (a science journal) about bone marrow transplants and some very amazing things they learned about the brains of Rett girls. While it's still only being tried in mouse-models, we're thrilled to know there are such intelligent people working towards a cure for Ellie and all the little girls like her. We're so hopeful that a cure will come soon.
Subscribe to:
Posts (Atom)