http://video.news8000.com/watch.php?id=42533
Monday, May 13, 2013
Saturday, April 13, 2013
Rockin With Rojo Benefit Concert
Join us.....
Rockin With Rojo Benefit Concert
Saturday May 11th 2:00 to 11:00 pm
The Historic Trempealeau Hotel
Downtown Trempealeau, WI
Come one, come all to a day of music, food, and fun for the whole family! Proceeds for the concert will go to assist with Roa's therapy, equipment, and care costs.
A variety of live bands, food, door prizes, and silent auction!
Bring a friend or two! Can't wait to see you there!
Rockin With Rojo Benefit Concert
Saturday May 11th 2:00 to 11:00 pm
The Historic Trempealeau Hotel
Downtown Trempealeau, WI
Come one, come all to a day of music, food, and fun for the whole family! Proceeds for the concert will go to assist with Roa's therapy, equipment, and care costs.
A variety of live bands, food, door prizes, and silent auction!
Bring a friend or two! Can't wait to see you there!
Thursday, April 11, 2013
Debbie Downer
I don't want to be a Debbie. One of those moms that blah blah blah on and on about how much our family goes through. The "life isn't fair, we deserve help" sect of Special needs families that seem to only see the bad in all of this.
It's hard to not be a Downer. I fall into that trap of despair and grief often. When Bryan travels for work and I'm hustling through the snow (in April!) to get the boys loaded for therapy, when PCA number 10,000 quits (by email) because her load is too great, when I see Roa's eyes filled with longing as he watches Gunnar ride his trike around the house.
But that is not why we live this life.
We were put on Earth to lift others up. Not to cry "woe is me" and try to get what is mine. Roa doesn't have that attitude. Why should I?
Roa continues to amaze us with his positive attitude. He giggles when he goes potty. He laughs hysterically when his brother jumps on him to wrestle. He concentrates so intensely when trying to feed himself, hold his marker, or get that water to Swampy on his iPad. He is simply heroic. To everyone he encounters.
I am so grateful for the gifts of money people have donated toward Roa's life of therapies, equipment,doctors, clinics and hospitals. Having people give of themselves to better his life is more priceless then I can put into words. We are forever grateful and pay it forward when we find some extras at the end of the bills.
One loving family friend from my childhood called me. (A call out of the blue means so much). She expressed her joy of watching Roa develop via the blog. She cried with me about our grief and worries of the future. She donated some money and expressed how happy she was to be a part of "Team Roa". Because she knew someday we WILL do something great to help others that are afflicted.
Mark My Words.... We will do just that.
So I'm not promising that I will not pull a Debbie now and again. After all , CP is no walk in the park (terrible pun). But take my pain, put into words on this blog, and use it to change YOU. Read through my complaints and allow it to inspire you to be true change in someone's life.
Debbie attitude or not, each day I wake up as the someone who is promising to help others as God wants of all of us.
My constant reminder to do better, to be better is King Roa.
Let him (or some other little champ) be yours.
It's hard to not be a Downer. I fall into that trap of despair and grief often. When Bryan travels for work and I'm hustling through the snow (in April!) to get the boys loaded for therapy, when PCA number 10,000 quits (by email) because her load is too great, when I see Roa's eyes filled with longing as he watches Gunnar ride his trike around the house.
But that is not why we live this life.
We were put on Earth to lift others up. Not to cry "woe is me" and try to get what is mine. Roa doesn't have that attitude. Why should I?
Roa continues to amaze us with his positive attitude. He giggles when he goes potty. He laughs hysterically when his brother jumps on him to wrestle. He concentrates so intensely when trying to feed himself, hold his marker, or get that water to Swampy on his iPad. He is simply heroic. To everyone he encounters.
I am so grateful for the gifts of money people have donated toward Roa's life of therapies, equipment,doctors, clinics and hospitals. Having people give of themselves to better his life is more priceless then I can put into words. We are forever grateful and pay it forward when we find some extras at the end of the bills.
One loving family friend from my childhood called me. (A call out of the blue means so much). She expressed her joy of watching Roa develop via the blog. She cried with me about our grief and worries of the future. She donated some money and expressed how happy she was to be a part of "Team Roa". Because she knew someday we WILL do something great to help others that are afflicted.
Mark My Words.... We will do just that.
So I'm not promising that I will not pull a Debbie now and again. After all , CP is no walk in the park (terrible pun). But take my pain, put into words on this blog, and use it to change YOU. Read through my complaints and allow it to inspire you to be true change in someone's life.
Debbie attitude or not, each day I wake up as the someone who is promising to help others as God wants of all of us.
My constant reminder to do better, to be better is King Roa.
Let him (or some other little champ) be yours.
Wednesday, April 10, 2013
Wednesday, March 13, 2013
Acceptance
This photo is from Roa's last day of Conductive Education. Yes, I wrote last day. It makes me so sad to say but we are discontinuing this part of Roa's weekly routine. Paige, Roa's PCA, resigned. She was PCA number 9 in our life. We are tired of training. Tired of interviewing, asking of they can commit for one year or so, and then receiving a resignation notice. Usually the reason is the work is too much. A few moved on to real world jobs. We hire college girls because they like the experience and work for $10 per hour. If we would go through and agency, we would pay $13-20 per hour. This is an out of pocket cost to us. Plus gas to get to The Plus Center. Plus the cost of the CE session itself.
Everytime we get a new PCA, I have to train her in our home and Ors has to train her at the center. Ors is done training our people. We would have to pay for his staff to assist Roa and that cost would add up fast with gas and session fee.
So, we chose sadly to give up the Conductive session twice a week.
It feels like another door closed. It feels like another hope of mobility shredded. Depressing, yet reality.
We are in the process of trying power chairs and looking at vehicles. Roa enjoys the joystick and is building confidence at school maneuvering around his friends. We are starting to accept that this will be Roa's main mode of movement. We are working with the ARC of MN to apply for TEFRA- the form of MA we pay the county to be on. The middle class curse.
We will continue with therapies- OT, PT, Speech that our insurance covers plus squeeze in horseback riding, aquatics time, and ABM sessions as funds allow. We put a large portion of money given through donations to the upcoming Masguatova Method Camp in July. Praying this method of reflex integration helps Roa find movement on the floor with more ease.
We are discouraged. Grief and acceptance is setting in. But we still try to find the light.
Thank you to the wonderful donations from loving family and friends.
Thank you to my dear friend Karl Wallin for planning and organizing a fundraising concert on May 11 at the Trempealeau Hotel in Wisconsin. The extra donations will help us continue with adaptations to make Roa's life and ours a bit easier.
Most of all, thank you to Christine, Aunt Vick, Lori, grandpa Al, and Daisy for giving Bryan and I respite. Every time you take care of Roa (and Gunnar) so that we can get away for a breather, clean the house, etc.,you are giving us a true gift! You all aid without question and we love you for it.
I recently had a nurse at one of our numerous appointments say, "We never get time away from our kids either". She had typical developing children, age 2 and 4. I held my tongue but wanted to say, " until you cannot leave a room without your non-verbal , non-mobile child crying out to you..... Until you have to spoon feed every bite into that child's mouth.... Until you have to place that child in a sitting position to then, hand over hand play,... Until that time..... You can keep you comment to yourself."
Thank you to those of you who get it.
Everytime we get a new PCA, I have to train her in our home and Ors has to train her at the center. Ors is done training our people. We would have to pay for his staff to assist Roa and that cost would add up fast with gas and session fee.
So, we chose sadly to give up the Conductive session twice a week.
It feels like another door closed. It feels like another hope of mobility shredded. Depressing, yet reality.
We are in the process of trying power chairs and looking at vehicles. Roa enjoys the joystick and is building confidence at school maneuvering around his friends. We are starting to accept that this will be Roa's main mode of movement. We are working with the ARC of MN to apply for TEFRA- the form of MA we pay the county to be on. The middle class curse.
We will continue with therapies- OT, PT, Speech that our insurance covers plus squeeze in horseback riding, aquatics time, and ABM sessions as funds allow. We put a large portion of money given through donations to the upcoming Masguatova Method Camp in July. Praying this method of reflex integration helps Roa find movement on the floor with more ease.
We are discouraged. Grief and acceptance is setting in. But we still try to find the light.
Thank you to the wonderful donations from loving family and friends.
Thank you to my dear friend Karl Wallin for planning and organizing a fundraising concert on May 11 at the Trempealeau Hotel in Wisconsin. The extra donations will help us continue with adaptations to make Roa's life and ours a bit easier.
Most of all, thank you to Christine, Aunt Vick, Lori, grandpa Al, and Daisy for giving Bryan and I respite. Every time you take care of Roa (and Gunnar) so that we can get away for a breather, clean the house, etc.,you are giving us a true gift! You all aid without question and we love you for it.
I recently had a nurse at one of our numerous appointments say, "We never get time away from our kids either". She had typical developing children, age 2 and 4. I held my tongue but wanted to say, " until you cannot leave a room without your non-verbal , non-mobile child crying out to you..... Until you have to spoon feed every bite into that child's mouth.... Until you have to place that child in a sitting position to then, hand over hand play,... Until that time..... You can keep you comment to yourself."
Thank you to those of you who get it.
Wednesday, February 20, 2013
The View From Here
Bryan is in Kansas for work. Just a one night, two day trip, but it leaves me running and my boys having to enterain themselves a bit more. Not a big deal, I manage with the help of family and friends to come and break the day up on these frigid, no outside play days.
This morning as I scurried around the kitchen, getting breakfast dishes cleaned up and sneaking in a few sips of coffee, I glanced into the family room and had that guilty, sad feeling rush over me.
Gunnar was at play with his Duplos, Ipad, and Baby Jaguar. Up and down. In and out of the room he moved, busy at play.
Roa, on the other hand, was lying on the floor, tugging on the strings of his helium "Get Well Soon" balloons, still alive from his hospital stay.
Poor Roa, I thought. The poor kid is stuck doing the same things over and over when we are not there to help him play.
But then, I thought for a moment,... and slipped quietly into the room to join him on the rug.
The balloons were floating above us, bobbing up and down with each pull on the ribbon. The morning sun was reflecting light from the balloons onto the white, textured ceiling. Millions of little light beams were dancing in rainbow hues across the ceiling. Red, yellow, green, blue... I could see them all.
As I looked to my right, I could also see the reflection of the balloons in the fireplace glass, which lit up with the bouncing balloons. This of course did not go unnoticed by my observant little boy, as Roa looked from the ceiling, to the balloons, to the fireplace.
And to further add to my amazing moment of spying on play, I noticed that Roa wasn't just moving the balloons, spastically with a body that just did it's own thing.
Roa was purposely twitching the ribbon of the balloons to make the colors move, blend or freeze.
Play with Purpose.
What parents and Early Educators take pride in.
Roa was doing just that.
So next time you glance at a "special child", whether they are laughing to themselves, repetitively lining up or banging on toys, or simply watching a toy spin or move. Do not be quick to pity or judge.
They own their personal play.
From the view I took today, Roa was blooming where he was planted.
This morning as I scurried around the kitchen, getting breakfast dishes cleaned up and sneaking in a few sips of coffee, I glanced into the family room and had that guilty, sad feeling rush over me.
Gunnar was at play with his Duplos, Ipad, and Baby Jaguar. Up and down. In and out of the room he moved, busy at play.
Roa, on the other hand, was lying on the floor, tugging on the strings of his helium "Get Well Soon" balloons, still alive from his hospital stay.
Poor Roa, I thought. The poor kid is stuck doing the same things over and over when we are not there to help him play.
But then, I thought for a moment,... and slipped quietly into the room to join him on the rug.
The balloons were floating above us, bobbing up and down with each pull on the ribbon. The morning sun was reflecting light from the balloons onto the white, textured ceiling. Millions of little light beams were dancing in rainbow hues across the ceiling. Red, yellow, green, blue... I could see them all.
As I looked to my right, I could also see the reflection of the balloons in the fireplace glass, which lit up with the bouncing balloons. This of course did not go unnoticed by my observant little boy, as Roa looked from the ceiling, to the balloons, to the fireplace.
And to further add to my amazing moment of spying on play, I noticed that Roa wasn't just moving the balloons, spastically with a body that just did it's own thing.
Roa was purposely twitching the ribbon of the balloons to make the colors move, blend or freeze.
Play with Purpose.
What parents and Early Educators take pride in.
Roa was doing just that.
So next time you glance at a "special child", whether they are laughing to themselves, repetitively lining up or banging on toys, or simply watching a toy spin or move. Do not be quick to pity or judge.
They own their personal play.
From the view I took today, Roa was blooming where he was planted.
Wednesday, February 6, 2013
Potty watch working!
So we purchased an Angry Birds watch for Roa to wear to tell us when it is potty time. First day, I told him all about it- if you gotta go look at your watch, bite it, whatever! He laughed, bit his watch, I put him on the potty and he WENT! This kid is so smart! Proud Mama moment!
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