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.
Wednesday, November 28, 2012
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.
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