Wednesday, December 19, 2012

This is how I roll!

Homemade adaptive sled!

Potty training time!

I will do it myself, thank you!

Missing my blog time!

So many updates.  It has been too long!

1) Roa has continued to see small accomplishments with his continued intensive sessions of Anat Baniel Method with Pati.  Lately, Roa is lifting his head off the surface when lying on his back!  He is also sitting forward when in a reclined position.  Using his hands in midline without turning his head to the side....this reflexive pattern is improving.
The sessions themselves were rough.  Lots of crying and tantrums, but we battled through.  Our Roa would like to do what he wants, when he wants.  When things don't go his was, we hear does the entire 5th floor of the hotel! : /

2) Roa has a trial with a power chair and did amazing!  I have video I will try and post soon.  The chair had head control panel and he was excited to move on his own.  This power chair and handicap accessible vehicle may be in our near future.

3) We are hearing actual words sneaking out of Roa on occasion.  It it those moments when he just says something and we look at each other and ask, "Did you just hear that?".  It is coming.....some day, that sweet voice using words to tell us what is going on in that smart little head.

4) Dr. Gormley is impressed with where Roa is at in his development.  His actual words were, "given his level of involvement,  he is doing really good"!
  PRAISE GOD!  Magical words for a parent to hear!
Roa is scheduled for Botox/phenol again in February.

5). Roa had dental surgery.  It was not fun, expensive and just plain stinks!  Roa had about 8 cavities!  We brush night and day and have since he had teeth!  His toothbrush has always been a part of his speech and OT therapy for communication and feeding skills.
However,  Roa does not have a rotary jaw motion. He does not breakdown food like you and I.  He also has residule food and drink that remains in his mouth that he does not clear with his tongue or swallow like we do.  So, he now has caps on his molars.  It is hard to see the silver in my baby 's mouth, but that this life with CP.

6) School is going great!  Roa loves it and continues to be very motivated by his friends.  He loves the homework discussing emotions, the alphabet, and counting.  He is a little learner.  It will help him so much to have that joy of school.

And that, is a brief summary of Roa's world.  I have been missing from my blog because I have been giving all my spare time to studying craniosacral therapy.  I began craniosacral course work last January and just finished my last class!  I am very excited to use all I have learned to help Roa and to help other children with needs and people with pain and discomfort.  I also love that we will be able to have another secondary source of income with a make-my-own-hours type schedule.   Perfect for keeping up the fight against Roa's CP.

Thursday, November 22, 2012


"Roa!", she exclaimed as I walked him through the sea of children at the YMCA Childcare area.

"Hey!  He goes to my school!".
I was so relieved to have one of the children approach instead of just look with curiosity.

She said her name was Hannah.  I then remembered her from Roa's class photo.  Sweet little girl with big brown eyes, like my Roa's.  She didn't realize how grateful I was that day for her presence.

"Roa, do you want the red car or the green car?", she asked, extending her little thumbs out for him to choose.  YES!  I thought.  She is doing just what he needs.
Hannah stayed by Roa's said the entire time we were exploring the Childcare area.  She didn't show discomfort or fear.  She was just his friend.

Today, on Thanksgiving Day,  I am thankful for Hannah and the Hannahs out there.  Kids who are kind and look past the wheelchair and walker to see the friend inside.
It gives me such hope for Roa's school years.  Hope for all our children's future.  But it also gives me true pride in the ability of my Roa to reach past his disability and sparkle!

Happy Turkey Day, Rojo fans!     Be true to you. Be kind to others.

Thursday, November 8, 2012


So proud of my boy.
Yes, every parent should have that same thought, but I truly am,
 so proud of my boy.

He is strong when you can tell he is struggling.
He is patient while he waits for me to have time.
He is expressive with his eyes and mannerisms without saying a word at all.
He is gentle when petting the cat and dog.
He is rough when wrestling with Daddy.
He is knowing when sitting quietly at mass.
He is crazy when laying in a pile of leaves.
He is questioning when learning new information about life.
He is curious about how thing work.
He is melancholy when watching other children at play.
He is exuberant when they come to play with him.
He is all things bold and beautiful.
The Lord God made him all that he is.  AS he IS.

So proud of my boy.
Aren't you?

Tuesday, October 23, 2012

Closing the Gap (aka Clearing the Grand Canyon in a Single Bound)

It has been a few weeks since my last post.  Since that time, we have had another round of ABM with Pati in Lino Lakes.  Things went well this 5 day-10 session round.  Roa responded so well to the motor patterning working on rolling, moving to sit from lying, getting from knees up to his wheelchair and using his arms more in reaching.  We have seen one big earthquake that registered- Roa is doing some walking with support at his shoulders, not supporting him under his armpits like usual.  This is a great step.
So, along with that, Kelly, PT at Courage Center has lent us a Gator reverse walker with forearm supports.  Roa is doing some nice slow steps with it.  His arms are not strapped down, his trunk is unsupported.  Praise God!  This is good.  Baby steps towards walking.

Roa also has been using some spontaneous words.  "Go, Up, Out, All (for all done), Ha (for Hi)"  This is also so good. 
His therapists at Functional Kids and Conductive Ed. have commented on how motivated he is to follow motor commands and sit and stand up with more stabilty.

Are these changes from the Anat Baniel Method with Pati?  We are unsure, but it is definitely a sign to continue down this path.
Another sign for a path less taken, Pati mentioned that she thinks the Masgutova Method and reflex integration work would be very beneficial for Roa.  Thus, like a lightening bolt from God himself, we know that this is something we need to start saving for.  Another method of hope not covered by insurance.

Which leads me to the Closing the Gap conference we attended this past week. This conference, held in Bloomington, MN is one of the largest assistive technology conferences in our country.  Vendors are there toting their wares from apps, to power chairs, to smartboard programs, to weighted blankets.
Roa tried a power chair controlled with head movements and love it!  Tooled around the booths, smiling away.  We also played forever with a smartboard program that lit up with butterflies, colors, and music at Roa's slightest touch.  Roa also tried a smart little floor wheelchair called a ZipZac. Basically a Bumbo chair/ Childrite seat on wheels, it allowed Roa to wheel around on the floor with other kids.

So yes, we saw the wonders of the special needs world, things that would make Roa's life alittle easier, a little different, a bit better.  But for a fee, a cost, a copay, an investment.  EVERYTHING in CP land costs big.  From therapies to bath seats. From pencil grips to van ramps, a large chunk o' change is required.
And, I'm tired of requesting for donations.  It is humbling to rely on the kindness of family, friends, and strangers-that-care to provide for your child's needs.  As we enter yet another money sucking therapy venture, it is impossible to ask for more from people who have given already.  At this point, those that want to give have done so.  Those that don't want to give, won't.  Simple.
It is hard to stomach some days, the thoughts that the parents in Typical Land look for donations for hockey fundraisers or boy scout camps.  Parents that save for trips to Disneyland during school breaks instead of driving 20 minutes to Closing the Gap.  We parent of CP Land do cartwheels when we get a $10 donation that covers a meer 6 minutes of therapy.  Typical Land parents throw $10 out the window at McDonald's without giving it a second thought.

I have hear many recommendations that we apply for aid.  We have. We are the Middle Class. We don't qualify.  When Bryan lost his job we received aid.  Since his return to work, that aid ended.

So we strolled around the vendor's booths at Closing the Gap, realizing that Our Gap is   H U G E.  We are as far away from the ZipZac chair as we are from Disneyland. 
Am I whining?  Yes.  It is unfair that Roa has to go through all this just to be a kid.  It is a bummer that we have a $1600 copay for dental care this month along with trying to save for December's ABM round, and possible a new walker in the near future.  Top all that with my continued course work studying CranioSacral therapy that is an additional bill.   I think we deserve the right to whine. 
We don't like to look for hand outs to help our son.  We would love to supply everything his little heart desires to live a happy life just as we do for Gunnar.  But the gap in price between Gunnar's Go Deigo Go Trike and Roa's Rifton Walker is a far as my misty eyes can see.

Tuesday, October 9, 2012

Off to school, Off the market, Off the mark

School certainly agrees with Roa.  The therapists and teachers at school are kind enough to share photos of his day and he looks so strong.  So big. So engaged.

I cannot say that he is excited to go each day.  Not that he doesn't want to go, he is just kind of non-emotional about it.... about everything.
Roa is just calm and spacey after this round of botox.  It really had us worried.  We were getting the "Is he tired?" question from everyone!
 Botox/phenol had that affect this round and that is hard.  We like to see our happy, overly emotionally expressive boy.  This calm, sinking-into his chair, zoned out Roa is sad.  It makes us question if it is the right choice for our family.  For Roa.  Yes, we see better sleep, better sitting, easier gait.  But it makes him zoney, drooly, and just depressed.  Is it worth it?  We have to decide.  Oh, all the decisions we are forced to make.
He is getting a bit more animated as the weeks since the procedure go by.  Last night at Special Olympics at the YMCA, he was loud and giggling again.  Our boy is coming back.... until the next round of loosey-goosey injections...   :(

Another tough decision,  our house is off the market.  We had a signed offer back in August, were arranging for the big move out, and the beginning of our building process and then the buyer backed out of the deal.  We haven't had any movement on it since.  The market is poor right now and nothing moves in the cold season, and so, we will wait and pray, and renovate, and relist come spring.  Carrying Roa upstairs, downstairs, in and out, is just a form of exercise we will do another year.  Freedom of mobility in our home for Roa will have to be limited for a while longer.  We have no choice in that matter, so we will trudge on.

This week we start round three of Anat Baniel/Feldenkrais method with Pati in Lino Lakes.  We are nervous, anxious, excited for the sessions to start.  Will we see improvements in his motor skills?  Will we see enough to warrent the continued draining of our savings?  That is the tough part.  We want to do what is the very best for Roa's development, for his future independence. But EVERYTHING in CP land costs so much!  Most of the things we do have hefty copays, are out of pocket cost, or require time and travel expense.  Money, money, money.  You don't want it to hinder your fight, but in some situations our hands are tied. 
There is another form of therapy, the Masgutova method,  a neurosensorimotor method that focuses on reflex integration that we are very interested in.  New to the United States orginating in Russia, this therapy form is available through a once per year camp in the Twin Cities.
  Cost to the family?  $4,500 for a 5 day camp.
  Benefit of integrating Roa's primary reflexes that inhibit him from rolling, working with hands together in midline, etc?  Priceless
Chance to just try this new form of therapy to see if it improves Roa's motor skills? Risk that it won't work for us?  Still worth every penny
Chance that we can raise that kind of money by this summer for the camp?  Totally up to God and Roa's Angel squad....that being YOU!

Thank you for your continued support in Roa's battle through this monster called Cerebral Palsy.

Fall hike

Dock with daddy

Wednesday, October 3, 2012

Tuesday, September 25, 2012

Wait and See

I'm having a hard time finding the time and ambition to blog. Sorry for my distance, some days, or months, are like that.
Roa is happy to be back at school. His routine has switched from Slow to Speedy fast. We are still getting used to the mornings twice a week at therapies and the afternoons busy with school and conductive education.
We begin another round of ABM in a few weeks with Pati again. Five more intense days of slow movement practice and a lot of prayers.
Roa had his Botox/phenol the first week of school and it is in full effect. Some good with the bad, as always. Frustration as limbs move too loosely, rolling is new and difficult, loose mouth leads to some drooling. But sitting is better and sleep has improved. Improved in the sense that people continuously ask if he is tired.... Sigh. Always good with the bad.
Roa is making raspberries. You know the sound you can make with your tongue? Yep! That is promising of future sounds. Future words. So we wait.
Waiting has been hard for this weary momma lately. Waiting for those tiny earthquakes that seem few and far between. But that is my full time job. Waiting for miracles.
In the mean time, we have gone camping, hiking, playing in parks. We get support from good friends and neighbors. We have joined the YMCA and signed Ro up for the Special Olympics program there. We try to include him in all that we can. We know he is beginning to grasp just how different he is. That is hard .
We are shopping for a handicapped accessible vehicle. We are accepting that some of life's hardships will not change for Roa. Nor for us as a family, but with faith, prayers, and yes, tears we keep going.

Playground Fun

Friday, September 14, 2012

Back to school

First day of school photo- cranky and sore from Botox/phenol but ready!

Sunday, August 19, 2012

Bath Time Magic

Roa loves bathing with Gunnar now and sits so nice in his antique potty seat that the school loaned us. Yes, potty seat... But we use it in the tub as well.

Bag O' Cream

Shaving cream with food coloring play in side lying.

Thursday, August 16, 2012

Guilt & Sorrow

This is not my most positive post.  Sorry,  but it is just one of those days.

 Hard day.
My body is tired.  I over did it yesterday-  I spent my free hours going through baby toys, clothes, etc for our upcoming garage sale while Maile, our PCA, had Roa.  That, plus the usual appointments, laundry, house stuff...topped off with Gunnar fighting allergies in the night, wore me out.

Today, it would be so nice to sit and play with my boys.  If they could run and play in the backyard, if they could stand at the sensory tables independently, if they could sit in the grass or sand box together and give me a bit of a break...

But that is not the cards Roa was dealt.  He does not sit.  He doesn't stand.  He cannot walk independently.
So, there is no break for this mom.  It has been an active morning for us all, playing in the backyard.
 I am Roa's legs for walking and kicking.  I am Roa's arms and hands for reaching and  holding.
He laughs, he squeals, he has fun.  BUT...

 Eventually, I need a rest- take a drink of coffee, go to the bathroom, stretch my back.
 When this happens,  the crying begins, the yells, the pleading,
"MOMMMA....MOMMMMMA!"... so sorrowful.

It wraps me in guilt like a thick down quilt in the summer.  That mornful cry because he can't do it on his own.  He cannot play without me.

Three days a week.  Three hours a day.  Maile is Roa's play-assist.  But the rest of the time while Daddy works, it is me- bending tight arms to reach for matchbox cars, moving stiff legs to help this weak torso sit forward towards the sand, pushing/pulling/steering a gait trainer on walks through the grass or down the street.  I am Roa's play.

And when I need to step away- to tend to Gunnar, to make a meal, to breathe....

The sounds of sorrow fill the air.  The begging cries of a child that can't do things on his own.  He is stuck in a body that doesn't listen to his brain.

It breaks my heart.  For four years now, I have listened to that cry.  It is hard.  Hard for me. 
Hard day.

However, this is not about me.

For Roa, EVERYDAY is a hard day.  Inside that body is a little boy who struggles to get out and play. 

But right now, all he can get out is the sorrowful, begging call that I will fight through my own guilt-ridden parent emotions and help him play.

Monday, August 13, 2012

Gorilla Glue & Jello

We did it.  Roa did it, that is...completed another round of Anat Baniel Method.   5  days of 10 sessions.  Full days.  He is a champ.  Yesterday, after we concluded with Pati, he took a 3 hour nap!  Tired little soldier.
Brief summary of our ABM experience this round-
-  Roa rests, relaxation and focuses so much better when weight bearing on his arms.  Pati did alot in 5 point (hands and knees with head down) or child's pose, yoga style.
- Roa decreases the tightness of his legs when he weight bears on his forearms when standing at the table.  Legs like Jello, Pati would tell him.
- Pati worked on a simple Eah for YES and Eah Eah for NO.  Roa responded well to that simple response.
And, the coolest thing, when Pati would place Roa's left hand on his right cheek in side lying and ask him to keep it glued there while they worked on rolling,... Roa slowly rolled with more ease.  The "gorilla glue" maneuver , helped lessen tone, slow him to give him time to process, and inhibit that natural reflex to Archer-arm.
It was a whirl wind of  brain processing by all.  Now off to a quiet week of reflection and practice of what we learned.

Tuesday, July 17, 2012

Flu bug

Roa caught the flu bug. Still my sweet boy.

Friday, July 13, 2012

ROJO on YouTube!

Roa on the Tube!  Here is a brief description of what Pati does and what ABM is all about.  Roa is in the beginning for a short clip.

We are planning on 5 more days of intensive sessions, at the beginning of August, and are raising funds to cover the cost.  Please consider donating to Roa's continued progress.  THANK YOU!

Tuesday, July 10, 2012

Ready, Get Set, S L O W....

So, the Thayer's life has slowed down a bit.
We had a Fourth of July mini-vacation to Bryan's Aunt and Uncle's in Grand Rapids.  We've taken a minor break from Conductive Ed.  We've slowed down Roa's Gait training, Stander time, etc.
We are taking a summer b r e a t h....  time spent swimming, swinging, in the sandbox, relaxing in the shade.
It is new.  For us all.
It is still busy for mom. Chasing Curious Gunnar and setting up a learning/experimental  play course for Roa.
 The King does not sit for long without entertainment.  But that is why we are doing this.  Roa    MUST    learn   some   slow  down   time.
There is a time to wait.
A time to entertain thy self.
A time to listen to your own body.
A time to practice skills you know.
A time to experiment with skills you will acquire.
A time to just be.

We set him up to self motivate.  iPad over here.  Rescue Hero by your hand.  Balloons all around.  We observe.  We sit back.  We wait.... as patiently as a Type-A mom can for the little earthquakes to happen. 

And you know what?
 They happen.
 Little things like Roa moving across the floor on his back.. inch by inch.  Roa pivoting his body on the floor in a full 360 circle.  Roa sticking his tongue far out of his mouth which had lead to a whole NEW string of babbles.  Roa bending and twisting in his trunk to view something at his side.  Roa sitting tall in his wheelchair without support vest. Roa pointing at every sprinkler we encounter on our nightly walks.  Roa kneeling with support, but pulling himself up to tall kneeling by the couch.

I treat Anat's book like my Travel Guide to the Land of SLOW.  I read. I swallow down the guilt of the pushing, pulling, no pain no gain attitude.  I accept Roa for where he is in the present moment.  I tune into where he might need to go next.  And then I jump in to help that lightbulb flicker. 
 And there is a flicker.  Not a full on lightbulb bright and strong.  But a flicker.
And that is just fine and meant to be celebrated.

I was recently brought a bit down by Roa's 4th birthday. Four years already? And so far to go? I didn't even blog about it because I knew not what to say.

But today I say I am sorry, Rojo!

You see,  we special moms and dads tend to dwell on the CAN NOTS. 
 It is hard not to when the Land of Perfect points, whispers, stares. 
When the Typicals point out the developmental charts that say where he SHOULD BE and question how we can quickly catch him up.
I fall into this trap.  Feel the sadness and shame.
But not today.  Armed with my Travel Guide to the Land of SLOW, I will celebrate where Roa IS and how FAR he has come.

Sunday, July 1, 2012


I have an exciting announcement! After nominating Ors, Roa's Conductor, for Danielle's Foundation's Therapist of the Year award, he was chosen as this year's recipient! Along with the endorsement from the foundation, the Plus Center is awarded $3,000 to benefit it's program. Because I wrote the essay telling of the progress Roa has made with this form of therapy, that our insurance does not cover, we are awarded $2,000 towards Conductive Education! HOORAY! God is Good! Thank you, Danielle's Foundation! One more positive step forward in CP Land!

Wednesday, June 27, 2012

The Road Less Traveled

Where to begin...

The road we are on in this journey of Rojo's is such a bumpy one.  We seem to always be encountering a fork in the road after a straight path, filled with potholes. Road construction ahead. Detour here.   But deterring from a familiar path is healing and can lead to new adventures, ideas, and challenges.

It is nice to have a routine.  Our week (that is Roa's week) is filled with activities- OT, PT,  Speech, Conductive Education, Aquatics, School, Courage Riders.... We keep him busy.  We keep him working. We pray for changes, goals reached, milestones met.  But after this last five days of time, with Pati, experiencing our first Anat Baniel Method program, we are questioning our fast pace.

I want to be a skeptic of the ABM approach.  I have read, googled, chatted with families, searching for a critic.  Someone out there tell me it is bogus!  But, I can not find that critic.  I find parents who complain of the cost.... I hear ya, Sista!  I find parents who have had sessions with Anat herself who claim that she is not a very nice person.  I find people who say it is hard to find practioners near their hometown.  I find some who tell of how difficult it is to give up hope in the traditional therapy methods and those therapist that have become such a part of your team/family and focus completely on ABM.
But, not a critic.  No negatives about the therapy.
I read Anat's book.  I've watched her DVDs and Youtube clips.
 It just makes sense.

I wish I would have had the time and energy to blog each day after Roa's sessions with Pati.  However, it was exhausting, for all of us.  Thank goodness I had the help of my sister, Vickie, and Bryan's Dad, Al to help manage both boys while Roa was in sessions-  30 minutes in a car.  30-50 minutes in session.  30 minutes in a car.  Repeated twice a day.

Since I didn't get a chance to blog each day.  I will have to summarize for you about our learning through these intense days.
1)  Credit.  We realized we do not give Roa enough credit for the smart boy that he is.  We need to allow him to physically help with tasks such as getting in and out of his carseat or wheelchair or getting dressed, even in tiny ways. lift your arm, sit forward, look down.   He can be a willing active participant in these daily tasks if we only ask him to be.  Talk him through the task.
2) Slow.   We need to ask of him.... and wait.  Give him a chance to process the movement, sound to make, or next step before we jump to help him, speak for him, or move him ourselves.  S L O W  way his movements when we do move him ourselves.  SLOW our life down to benefit him.
3) Break the Routine.  We do a nice of job of varying activities we do within our therapeutic routine.  But in order to stimulate new brain connections and patterns of motor control, we need to break from the routine and bring about some unexpected feedback to his body and thus his brain.
4) Support.  Part of Roa's developmental delay is his big need to feel secure in space. His body awareness is poor so exploring movement is scary.
 While on his back, trying to sit, attempting to roll, etc, he will  startle and feels insecure about what is happening to his body.  We need to give him additonal little supports- a pillow under his top leg or arm in side-lying, a blanket around his waist when sitting up, or under his knees.  Until he feels more secure in space... then we can slowly remove the support.  Along with that, when he is reaching to grasp, we need to give him a firm hand hold in his upper arm or shoulder.  Wow, can he manipulate when supported in this way!

The ABM method is so quiet, and gentle.  I watched Pati work, manipulating Roa's spine, pelvis, hips in awe.  I was a quiet observer.. but inside I was shouting TELL ME WHAT YOU ARE DOING SO I CAN DO IT TOO! 
I watched and learned a little.  I hunger for more!  Why, you ask?  What is it about this method?
Well for one,  Roa had such mixed emotions.  He smiled, he cried, he tantrumed, he laughed, he looked scared, he looked incredibly peaceful.  Overall, he was engaged!  With all the therapies we do, I sometimes see that zoned out, who's-gonna-"play with me"-now look.  Not with ABM.  He was IN it.
Secondly, Roa is now a bit calmer. He seems more comfortible on the floor.  I have walked out of a room leaving him on his back and return to find him on his tummy.  I  also notice him sitting with better, stronger posture.  We don't always put his wheelchair's chest vest on... he just doesn't seem to need it all the time.  And, Roa attempted to pull to stand!  He was pulling on his brother (not such a sturdy surface) but it was an attempt!
Tiny earthquakes.... they mean everything to us!

And so, we are discussing Roa's current schedule.  We are looking at the possiblity of slowing down for the summer.  Giving his body a chance to explore and giving this ABM deal a chance to move him forward on this summer path of potholes, speedbumps and construction.

Tuesday, June 19, 2012

Roa Talking!!


I'M ROA!  ROA, ROA, ROA.....

Sunday, June 17, 2012

Playground preschool, horse rides, and ABM

Tomorrow begins a busy few weeks for Roa. After a fairly slower paced start to June, we are off and running beginning with a White Bear Lake community summer preschool program. Roa will be attending this two-day week class with Maile,his PCA. She willhelp him be involved with all elements of the program. Tuesday, begins his six week session of Courage riders hippo therapy. He is pumped for that! we will carry on with speech and OT at functional Kids on Mondays and Thursdays and also had a therapy pool session at Special Children's Center in Hudson on Wednesdays. Conductive Ed. is Tuesday and Thursdays. Fridays is mom day, Courage swim time and PT with Lauren. This Thursday, all other methods are on hold as we devote 110 percent to Anat Baniel Method. Two sessions per day, 45 minutes per session, for 5 days. We will live and breathe ABM. I have been doing my part reading Anat's book, watching her DVDs, and youtube clips. We pray for the tiny miracles to occur within Roa's brain that trigger motor control that so many children experience with the intense brain based method. I'm posting a couple links to show you more of what this practice is about. Thank you to those of you who have donated to Roa's therapy fund. It will help emensely as we begin another busy summer of Early intervention.

Monday, June 4, 2012

Tattoos, Roses, and Prayers

Roa has that way about him.  Roa draws people in.

Last weekend we ventured on a family outing to Forest Lake, MN.  This quaint, little town has a lakeside park with playground, boat dock, and sandy beach.  It was the perfect Memorial Day setting.
 Like always, we were well-equipped with wheelchair, stroller, and gait trainer in tow.  Never know what we will need.  Of course, when we let Roa decide his wheels-of-choice, he chooses the gait trainer.  His favorite mode of independence.
So we set out, Gunnar trucking it across the park lawn towards the ever-favorite swing set, Mom scurrying behind, Roa giggling and taking off with the awkward, straigth-legged gait of limbs just waking, and Dad calmly steering the GT.

Same basic scenario that we are used too. But to others, we are a sight to be seen.  As I shuffle after Gunnar, listening to the yelling, cooing, laughing of Rojo behind, I realize it is necessary to put up the shield of tolerance.  We, humans, fear the unknown.  We can't help but gaze longly at differences.  It is one of those moments when I knew to instantly activate the shield and continue being Mom-Ignore the stares, the stop-in-your-tracks-reactions, the What is that? questions of children to their Hushing parents.  That is just a day in the life we lead.

As is also typical, it is Bryan's turn to be down.  It is oddly comforting to know that God has granted us the ability to off-set each other.  When Mom is sad, Dad is optimistic.  When Dad feels anger, Mom is calm.  When Mom doesn't know if she can leave the house that day, Dad encourages and steer our ship forward.  It is one of God's graces, to say the least.

So Bryan is with Roa, walking down the dock, across the beach, into the lakes sandy edge.   Even though he would like to just blend in and be another dad with a curious little boy,  that is impossible.  They just stand out. He is questioned and pointed at.

 As I chase Gunnar around the park gazebo, I watch a a small circle is formed around Roa and Dad.  Curious, I urge Gunnar forward towards them.

The sight before me is one I can only try and explain...but picture this...

Roa in his gait trainer, Bryan crouched beside him. To his left, a large man with Mr. Clean-shaven head, dark beard, and arms full of tattoos approaches.  Beside the tough biker is his significant other- long brown hair, shades and tank top.  On the other side of Roa is the Lady Leader, arms filled with roses.  By her side, her teenage daughter, shy and sweet.

I refer to her as the Lady Leader because she is leading them in prayer.  This small group of worshippers is surrounding my son with something much stronger than my shield of tolerance.  It is the shield of faith. 

Roa glances up at me with the side wise grin of "Gosh Mom, I can't help it",as Gunnar and I approach.  Bryan gives me a sad, peaceful look that says,  "Yep, this is what I needed today".
I can only look on in wordless awe, as the Leader Lady hands me a rose and says, "Bless you".

You see, God has a way of placing unexpected angels in unlikely places to keep you going forth in this battle against CP.  Our day of swings, walks, and picnics was replaced by tattoos, roses, and prayers. 

But we are fine with that.

Wednesday, May 23, 2012

Team Rojo

We said we didn't want to do it.  Our pride, our independence has kept us from asking for donations.  Many friends and family have given to Roa's fight through the years and we THANK YOU!
But, Roa has a chance to partake in an intense therapy program this summer.  The method is one that I have talked of before.  One that we tried for a brief time- Anat Baniel Method (ABM).  The program is pricey.  Insurance doesn't cover the cost because it is still considered experimental/alternative in nature.   We are looking to raise around $1200 to cover the cost of one weeks worth of sessions.
If you can find it in you heart... have a little extra in your pocketbook this month... please consider donating to Roa's fight.  
I have added a donations button to the right of this post.  It is through Paypal.  Safe donations and a chance to send Roa and family an encouraging note.

Thank you Roa's Angels for your time, prayers,  and cares.  ~  Jen and Bryan

Tuesday, May 22, 2012


Will there ever be a time when we get to say, "well, that does it! Enough. Finished. As good as it gets. Over." When it comes to therapies, methods, trials, products, devices, equipment. Will we ever just get to say, "This is it! Answer found. Problems solved."? Some day, will I get to fall asleep thinking of tomorrow with anticipation of a bright new day? Or will it continue to be a clock ticking away, Calendar whipping thru pages. Minutes that count so much when there is only so much time in a day to find that cure? Will I ever watch typical children and not mentally process their every move with awe of God's perfect creations? Muddied by God's little mistakes? Does the guilt go away? The guilt of not being parent enough? Not being wealthy enough? Not being driven enough to find what my child needs? These are questions I have tonight as I gaze out the glass prison window of CP Land White Bear Lake. We are trapped here. With so many doubts. So many fears. So much hurt. And so many questions we will continue to have while other parents get to enter blissful sleep in the land of the Cerebral Strong.

Thursday, May 17, 2012


I had some trouble saving and posting on the blog in the past few weeks.  Sorry for the delay.  Time for an update.

Roa has had phenol and botox injections at Gillette.  He is adjusting very well and has a super gait right now for gait trainer walking and free walking-supported.  Floor time is a bit of a limp noodle fest, but we are working away at sitting, stretching, rolling, and moving in a crawling pattern.

Roa has begun working with a new private OT which is very exciting!!  I found Maile on and she happens to be in the Twin Cities area just for the spring/summer months.  She will be working one on one with Roa in a summer preschool program, conductive ed., and in our home.  Welcome, Maile to the team!

Jenni is our other PCA and has been great working with Roa Thursdays and Saturdays at Conductive Ed.  Roa is doing well at CE, continuing to make subtle changes every week.

Summer is right around the corner and Roa will begin Courage Riders again.  We can't wait.  Horse back riding is such a great way to gain trunk control.

As difficult as it is to come to this decision, Bryan and I have decided to sell our home and build a handicap accessible one story in a neighboring community.  We are anxious about this decision.  We LOVE our home and our neighborhood is the best!  However, the three levels is getting very difficult at Roa grows.  35 lbs now and tall!
Say a prayer that we can have a quick sale and low stress move into the building process.

Until more time allows.....               Jennifer

Friday, April 20, 2012

Angel on Four Wheels

I've decided to do an angel of the week post each week. I need the upbeat reminder of all the great people that have entered our lives due to Rojo. This week, I call bus driver, Dana, our Angel. After such a rough start to the school year transportation system with the very rude driver asking the ignorant question, "Doesn't he walk?", we were truly blessed,to have Dana drive Roa to school. Dana is smiley, friendly, and talkative. She never makes me feel bad,if I am running late or seem frazzled as I, many mornings! carry Gunnar on one hip while pushing Roa's chair,and pulling the gait trainer along behind. She always warmly greets Roa as a PERSON and makes him beam with pride. As Gunnar and I return to the house, my heart melts as I over hear Dana roll Roa up to the front of the bus to say HI to all the little girls and the to the back to greet the boys. She makes him feel a part of things when many times he sits apart. For that, Dana, YOU are the Thayer's Angel of the week! God bless!

Wednesday, April 18, 2012

Elephants, Platypus, and Other Rare Bricks in the Playroom

So, when Roa was first diagnosed with Cerebral Palsy, I bought the book, The Elephant in the Playroom by Denise Brodey.  I read a few of the stories, touching tales of  families and how they deal with a variety of disabilities, and put the book on the shelf, for years.
  I'm not gonna lie.  It is a tough read for a mom new to CP Land.  These parents describe exactly what we go through each and every day- hope, worry, sadness, fear, shame, guilt, hurt, anger....
This weekend when I chose to take a little alone time in the basement after bedtime and watch a Netflix movie, I chose Rabbit Hole, starring Nicole Kidman.  It is the story of a couple whose 4-year-old son is tragically killed and how they deal with the aftermath.  (Not an uplifting flick to choose, but it just was one of those nights.)
Anyway,... the Grandmother of the deceased boy had a statement that totally hit home.   Made me cry and breathe deep from my nest on the couch.  When Nicole's character asked if the grief goes away, grandma said,  No.
 The weight of it changes with time.  It gets lighter and easier to carry.  It is like a brick you carry around in your pocket all the time.  Somedays it is lighter.  Somedays you really notice the weight.  But it never goes away.

Wow, that was a phrase of words taken right from my heart.  So very true. When it comes to dealing with grief.
 Some of you may say, but Jennifer, the kid in the movie died!  You have Roa with you on earth. 
But, you see, we, special needs mom and pops grieve everyday for the boy he could have been.  We keep up the good fight and work work work to make things easier for him, battle away through doctors and therapies in hopes that his future will be a little more bright... yet inside,
 we are crying, stomping around, angry,  pulling our hair out with sorrow that OUR child is not TYPICAL.  OUR child is the proverbal elephant in the playroom that others look at with curiosity, move around as if he has an enormous bubble surrounding him and his special equipment, and ask questions about him.... over and over... the QUESTIONING!  UGH!

That is the brick in the pocket.  Mine is marked CP Land.

 Some days, I am comforted by the extra load.  God put me in special education for a reason.  It was my destiny.  I will be the best mom I can be and plan and budget, and follow through with all the activities recommended by therapists and doctors.  I will do do do do more more more.. 
 Roa will teach people, bring tolerance and acceptance to lives that he touches. 
The brick needs me to be strong to carry it around and think optimistic thoughts.  Be the BRICK, BE the brick!

Some days the brick, pisses me off!  God, the load of it!  And it won't LEAVE my pocket.  I try and get away, with a movie, a long walk, a glass of wine, but it is still there in my pocket.  The fears, the questions,  will he ever move independently?, will he ever do more than laugh, babble, yell, and cry?  will he have friends?  will he live somewhere besides with Mom and Pop?  will he ever be able to tell us why sometimes he SCREAMS in the night and breaks our hearts for hours at a time?
The brick should be thrown through the CP Land Town Hall window where I can then promptly run away from it all and my Roa could be the TYPICAL.  Not the ELEPHANT.

I started reading that book again yesterday.  I relate to the social awkardness, the urban hermit attitude of some of the parents.  I relate to the marital issues that arise when you are so focused on the disability that you forget who you are as a couple. I relate to the relationships of family and friends that change and sometimes end over time.   I relate to the sadness of watching a sibling grow and change while your other Pride and Joy remains a baby of sorts.

It is a tough read.  I'm not gonna lie.  But it is a little easier when, as you read,  you reach in and touch that brick in your pocket.

Thursday, April 5, 2012

Easter Greetings




Bunnypalooza 2012
A la Flutter Photography

Wednesday, March 28, 2012

Two on the Bed and the Little One Said...

Roll over!  Roa is really starting to roll!  It is exciting.  And dangerous.  Roa rolled right off our bed this weekend...onto hard wood floors, I'll add.  YIKES.  He didn't cry.. amazingly, but he does have a goose egg on his head.  Poor guy.
I ADORE the fact that we have to be more careful with his position in the house.

Other than rolling off of furniture, Roa's other big choice of activities is to climb our newly carpeted basement stairs.  Up and down we go...practicing those alternating patterns of climbing.  I must say, he is getting it.  He needs support in his midsection and doesn't quite balance, but it is coming.  Baby steps marching forward.

We purchased a SADD light to possibly help with Roa's sleep disorder.  MaryJo, school OT, recommended we try positioning Roa in front of the light for 1/2 hour before bedtime to try and reset his internal clock to sleep longer.  We haven't tried it for AMAZINGLY enough.. Roa is sleeping like a champ with only one brief wake up.  He is giving up napping, I am sad to say, but that seems to help night time sleep.  PRAYING FOR CONTINUED SLEEP!!!

Other new therapuetic attempts....
  The Wilbarger Brushing program- to help him process movement and increase body awareness.  6-8 times a day, we should brush Roa's entire body and do joint compressions.  We have decreased the amount to about 2-3 times due to the nice weather, but it seems to alert his little body.

Therapuetic Listening program- twice a day for 1/2 hour, Roa wears headphones and listens to specially designed music to help him concentrate on tasks, coordinate muscle movements and stimulate brain processing.  We just started this via Kara at Functional Kids, OT,... we will keep you updated onto changes.

I have begun corresponding with the director of the Snowdrop program.  Based in England, this form of intevention is a brain-based therapy that is new and becoming quite popular in Europe, Australia and a few places in the US.  Repetition of tasks based upon a child's skill level to train the brain to complete everyday common life skills is its main premise.  I will keep you updated of it's plan....

Yes, another day of battling through the Land of CP.  Adventure on weary travelers... the day is just beginning.

Monday, March 19, 2012

Marching forward

Botox and phenol injections within a month.  That is the main thing we learned from our visit with Dr. Gormley at Gillette last week.  It is a good thing- to be proactive in Roa's muscle tone management and increase the ease of his movements, allowing strengthening and increased coordination.  However, it is discouraging to have the length of time between injections shorten and to have the procedure repeated this soon, but it is a mystery as to how his body reacts to each treatment. Each time.

Dr. Gormley gave us the go ahead to begin Vitarin supplements.  I now am researching other nutritional therapeutic approaches to help treat cerebral palsy.

Roa is beginning to attempt to use his hands together in midline to manipulate toys.  This is a large task for him and is an exciting thing for us to witness!  He is also able to hold objects in his hand without losing his grasp when he tries to move it.  So promising... so hope-filled.

With this wonderful mild March weather, we are outside all the time!  Roa and Gunnar love to run up and down the play ramp on our swingset/playset, play with the kitchen set, and in the water table.  Roa also loves to sit in his ChildRite seat (like a large Bumbo chair) in the sandbox and play in the sand with his brother.  Of course he also love to run in his gait trainer and kick balls across the lawn.  We are on a mission to add some "Roa independent play" areas to our backyard this spring and summer.  Upright art easel, Water wall, and wall ball maze, just to name a few...
We also need to work on the making the terrain a bit more gait trainer friendly.

Roa is getting new afos this month.  Our boy is growing so tall and has outgrown his current braces.  The poor guy was getting bruises on his ankles!  We are patiently waiting for his new ones to be made.

That wraps up the current journey.  Until my next visit to the blog.  Keep the faith and keep the prayers a coming!

For Trish

The Friend Who Just Stands By

When troubles come your soul to try,

You love the friend who just stands by.

Perhaps there's nothing she can do,

The thing is strictly up to you.

For there are troubles all your own,

And paths the soul must tread alone.

Times when love can't smooth the road,

Nor friendship lift the heavy load.

But just to feel you have a friend,

Who will stand by until the end.

Whose sympathy through all endures,

Whose warm handclasp is always yours.

It helps somehow to pull you through,

Although there's nothing she can do.

And so with fervent heart we cry,

God Bless the friend who just stands by.

                   - Author Unknown

Sunday, March 11, 2012

Wolf Fever

Ahhhh, vacation. Sharing a space with hundreds of people during the end of a Midwest winter...what does it lead to? Flu. Ugly feverish, coughing, sneezing, achy, throwing up messes! Each and everyone of us! The boys had double ear infections. We each had pink eye both eyes. It was not a pretty week at the Thayer's house. Roa missed going to school and therapy. His strong gag reflex kicked in with every cough and caused him to vomit. Thank goodness it did not lead to dehydration and a hospital trip this time! On a positive, Roa and Gunnar got to spend two afternoons with Grandpa Al and Grandma Bonnie, who were kind enough to come and help us out during our sick week. Saturday, Roa was finally able to return to his Conductive Ed. Program. Although cranky and weak by the end...he made it through. Tomorrow begins a much needed return to routine. Decides schooling the morning, we have our visit with Dr. Gormley at Gillette to discuss Roa's next round of Botox and phenol injections. We also would like to chat with the doc about beginning a nutritional approach to helping Roa with his CP- pairing whole natual food with a supplement, Vitarin,to help his body's intake of vitamins and minerals. Vitarin is a supplement, new to the market, designed specifically for cerebral palsy. Link below- Time to blow my still stuffy nose.... Nighty nite, All!

Wednesday, February 29, 2012

For Lucas

"Does he have CP?", she asked.

We kept on playing peek-a-boo from the tiny play cabin next to the elevators in the Great Wolf Lodge, WI Dells, as we answered the now so repeated question.  By this time, we were getting used to the public stares, questions, looks of sadness.

We took a mini vacation last week to The Great Wolf Lodge.  Celebrations were in order as Bryan got a new job!  Yeah!  He started this week, so last week we said the Thayers were overdue for some family fun.

The boys had a blast!  Enormous waterpark with kiddie wading pools, family slides, lazy river....perfect for Rojo in his gait trainer to splash around. Gunnar got a few bumps and bruises from trying to keep up with the big kids, but is no worse for the wear. 
Mom and Dad had their hands full running after the boys. Between waterparks, singing animals, arcade action, and play spots everywhere... No vacation for us!

"Yep.", I answered, as Gunnar took off down the hall, leaving Roa giggling from his wheelchair beside the window of the little log cabin.  Auntie Vickie took off after him.
  We were gifted with a little time off when Vickie showed up and surprised us! She watched the boys so we could have a drink at the lodge bar. AHHHH.. She also took Roa swimming one afternoon so we could do a little shopping.

"I saw you yesterday at the waterpark when he was in his Pony", She said.  Pony- a kind of gait trainer- she is familiar with the Land of CP. 

"Yeah?", both Bryan and I said.  Taking an interest in this stranger who might have some insight.

"My name is Stacy.  My son had CP.  When I saw your son running through the water laughing yesterday, it was like I saw a ghost!  Lucas past away 6 years ago YESTERDAY to the date.  Your son looks so much like him."

Stacy went on to share that Lucas had a feeding tube and frequent aspiration.  He passed away after complications with pneumonia.  He was 4.  Bright and happy.  Running around in his gait trainer just like Roa.
She was sad this anniversary of his passing and seeing Roa just brightened her day!

We shared stories of doctor visits, equipment trials, Hyperbaric therapy and aquatic time.  We smiled, laughed, and teared up.  Our visit was short due to the King's need to head back to the Fun, but it was memorable.

God puts you together with the ones that understand. 
 He places these comrades in unlikely places just went you start to feel down.  When the feelings of being so different in the world when sometimes you just want to blend in with the other sheep are overwhelming.

Roa runs in his gait trainer through the water sprays and wading pools for you, Stacy and Lucas!
As others stare and stop in their tracks to ask each other in whispers...what in the world is that? What's wrong with him... 
Roa will run on and have his own form of fun.

Monday, February 13, 2012


Do you hear that?

A quiet rumble... a gentle wave... a little earthquake...

Roa is moving his arms and legs in alternating crawling pattern.


 He does not have the strength or balance to hold himself and up and project forward yet, but we battle away.  Mary, OT and Functional Kids was so impressed today!  She gave me some new strengthening ideas and along with that Laura, PT from school, will be dropping off some new equipment to work with at home- balance board, bolster chair, bolster swing...

We started a brushing program with Roa last week, via Kara, OT Functional kids.  Six to eight times a day, we brush his body firmly with a surgical brush.  The brushing of limbs and back is then followed by joint compressions.  The brushing program is a protocol used to help sensory processing and increase body awareness.  We add it to our bag of CP land treats.

Busy busy.  Little sleep. Lots of prayers. 

Gunnar was sick and is teething. Back to sleeping in our bed in the wee hours of morning when I can't take another moment in that rocking chair beside the crib.  Roa continues to jabber away at 3:00am until 5ish with weary Daddy by his side.  Mary Jo, OT school, mentioned a light box...used to treat seasonal depression, might be worth a try to help his sleep patterns.  So I will search for a deal...  as he is also giving up his daily nap...

No job yet for Bryan.  We are hopeful for an offer soon.  On a positive note, with this time of unemployment, I was able to attend a Craniosacral Therapy weekend seminar with Dr. Carol Phillips. So amazing.  So empowering.  So enlightening.

So much hope.  For a new tomorrow.  A brighter future. 

But for now,  I must rest.  Until another day, dear friends.  Keep the faith!    Jen

Thursday, January 19, 2012

Friday, January 13, 2012

Holiday Hannah

"I'm Hannah.", she said as she squeezed by Roa's wheelchair into the open space in front of the bead maze on the little table. She was a confident little girl, looking at Roa's IV stand attached to the crook of his small elbow inquisitively.
"I'm here visiting my grandpa. He's sick.", she said, in an questioning sort of way leading me only to believe she wanted the "What-are-you-in-for" answer.

"How old are you, Hannah?" I asked. I already knew the answer just by watching her. Also, by simply knowing that God puts these peers in our presence quite often.

"I'm three." she said.  Same age, so very different abilities.

"Is she bothering you?"  Her grandmother asked as she entered the tiny playroom next to Roa's hospital room.  She gave Roa "the look"- nervous, sympathetic, questioning. "Come on, Hannah. Let him play."

"No,"  I said. "She is just chatting with us."  Inside I was also saying PLEASE don't take her away!  She is the first reason Roa has to give his contagious smile since before Christmas! 
Roa did not have a quick recovery from the horrible flu as the rest of us did.  Instead his vomiting and lack of fluid intake lead to a two night hospital stay.  Reflux has a nasty way of making that gag reflex heighten.

Hannah was there at the hospital with us.  So very typical- chattering away, bossing around her baby sister as she tottled into the room, playing with the puzzle, beads, and few books in the small hospital visitor's room.  Oh how easy the typical child can interact with the world, appearing never to be weak and faltering.

It was nice to see my weak Roa smile again, so sweetly as Hannah, with her child-innocence, talked about her Christmas, Santa, and life as a three year old in Florida.  She was a Christmas Angel to me.  Friendly and open.  A bright light in the sad Holiday Hospital.

That was the defining turn-around moment in Roa's hospital adventure.  The next morning, he kept down his breakfast (for the most part) and was released in the afternoon.
  Roa deserved a "Christmas do-over".  On New Year's Eve before bed time,  Daddy and Roa hit the local Target where Roa became the proud owner of a remote control, with flat-panel touch screen, monster truck!  (monster trucks being his latest interest...God help us)

On January 4th, Roa returned to his school/therapy routine.  Three pounds down but energetic none the less, he wheeled aboard that school bus with a grin.  He was sad to see his Christmas tree put to the curb, even shed a tear, but seems to understand.  Christmas will come again.

Hannah, we hope your trip back to Florida was a safe one.  Thank you for being our light during a dark Christmas moment.

Sunday, January 1, 2012

Happy New Year

This New Year, will you be more kind?
Will you live in a way that keeps others in mind?
Will you give to the needy and cause them to smile?
Will you visit old friends and reminisce awhile?
Will you celebrate joys, no matter how small?
Will you stoop to lift a child and make them feel tall?
God put us on earth to help others, it's true.
That is MY wish in this New Year to you! Have a blessed 2012 my dear friends!

Mom and Me

Mom and Me

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