Saturday, December 24, 2011

Merry Christmas

It is Christmas Eve. 9:10 pm. We didn't go to Christmas Eve Mass as we usually like to do. We didn't make a special dinner or read or Christmas stories. We instead are battling the flu. Poor Roa has it the worst, day two of throwing up. Poor guy. He did muster up enough energy to sit with Daddy in the kitchen to "help" Mom make a birthday cake for Jesus. Funny but all the talk of Santa and presents...our boy is most excited about the Christmas tree and Baby Jesus's birthday.
So what is birthday without a cake? Chocolate bundt cake with marshmallow creme glaze. Just what Jesus would order! Ha!

The presents are under the tree, the stockings are full of fidgets and treats. The lights of the tree are bright as we settle in the watch It's a Wonderful Life for the umpteenth time. Poor Roa is fitfully tossing and turning on the couch. Throwing up and crying on and off.

Not the peaceful night we wish for on Christmas. Yet we are blessed. Blessed with each other, a warm house, a full fridge, two vehicles in our garage,... Angels around us looking out for the Thayers during the holiday season (thank you, Santa's Elves, who ever you are) and family and friends who care.

And a birthday cake for Jesus waiting for tomorrow and a fresh new day to celebrate.

Merry Christmas to you all.

Sunday, December 11, 2011

I believe there are angels among us...

Today's sermon at church was about the stresses and worries of the holiday season. We all have them. Father told us today to be thankful for the "now" and the blessings we have today. Put aside the worries of money, family issues, pain, and sadness and celebrate the graces.

I feel blessed that although we are currently unemployed, we have the ability to work and will find Bryan another job. I feel blessed that although Roa's future is so uncertain, we have a wonderful network of therapists, teachers, and helpers, who keep the fight with us. I feel blessed that although he now uses a wheelchair often, Roa continues to have the drive to get out and walk with our support.
I feel blessed that someone cares enough to anonymously give to our family to make our Holiday a bit brighter. Thank You Santa's Elves, whoever you are!! God smiles down upon you and the Thayers will certainly pay it forward!

Tuesday, December 6, 2011

The chair

Roa's wheelchair is here! Yeah! The Quickie Zippy Zone was delivered on Friday and we have a happy Rojo on our hands. It's pretty much perfect except for the foot plate that needs to be raised for his three year old legs. Handi Medical did a top notch job getting that chair here as fast as they could so the last leg of our insurance could cover it. We have opted to pay the outrageous Cobra fee to extend our coverage another month as the job hunt continues. Roa can then continue with therapies, doctors,....

The chair is a blessing and a curse. Blessing- Roa likes it, its a good fit, it is transported on the bus, it fits in our Pathfinder, it makes Roa stand out as disabled.
Curse- it is not Roa walking, it comes with an underlying feeling of defeat, it makes Roa stand out as disabled.

We keep up with his gait training walks as much as possible, but sometimes, it is just easier to push that chair. Saturday, that little zippy zone made it through the slushy crowed streets of the Minneapolis Holidazzle Parade. We felt guilty for not bringing the GT, but crowds are not made for walkers, nor is the snow. Wheelchairs make it thru both. Convenient and sad.

We made up for it Sunday morning as Roa and his trainer followed Daddy with the snow blower up and down the drive way.

Walk walk, my boy! Your chariot awaits for less active days.

Thursday, December 1, 2011

You Got A Friend in Me!

Roa has a new best friend at school.  His name is Caleb.  He makes Roa laugh.  The teachers say they like to run together… Roa, using his gait trainer, in hot pursuit after Caleb in the gym or on the playground, laughing and yelling the whole way.  They also like to hold hands… Caleb gently taking hold of Roa’s hand which is usually fisted in excitement.  Caleb is accepting.  He is young and nonjudgmental.  Roa is his buddy regardless of how he walks or the fact that he doesn’t sit for long on his own without tumbling over.  Roa doesn’t talk to Caleb, but  Caleb doesn’t mind.

Good friends are hard to come by.  We all have entered into new social situations- new schools, college, new job, new family, – and have felt like the odd man out.  It is not a good feeling and definitely one you don’t wish upon your child at an age when relationships are starting to be so intriguing  and important.  It is around age four that children start forming those bonds in pretend play and active times.  They begin having peers that they decidedly prefer to hang with.  Roa is close to that age and it is frightening as a parent.

Just has we all have been in situations that are new, most of us can recall that one certain friend who reached out to us.  I recall two such friends in life.  First, there was Becky Pierzina.  In my school growing up, children were sent to preschool who were at risk for troubles in Kindergarten.  Being beyond shy with people and PAINFULLY bashful in new situations, I went to preschool to work on those social skills.  Becky was the one girl who reached out to me.  Playing in our make-shift fort under a table in the classroom, I  remember giggling and watching Becky in awe with her chatty, outspoken way.  I learned a lot from Becky.

In my adult years, I remember entering my first job as a teacher in Black River Falls, WI.  I was so nervous about this new position working with young children with varying special needs and their families.  Socially, entering a teacher position is like being a new kid in the class.  Teachers are quick to establish cliques and are not open to accepting “newbies”.  Finding a friend is hard.  Barb Kolb was that one teacher who reached out with open arms.  Barb was enthusiastic about meeting new people and her job.  She was not shy about speaking her mind or showing you that she also valued your thoughts on subjects.  Barb showed me the ropes at Forrest Street Elementary. She introduced me to everyone and let me form my own opinions of the school climate.  She took me out on the town to have a few beers and unwind in that little close-knit town.  I learned a lot from Barb as well.

As Roa enters the years of friendship bonds, I hope he has the same mix of positive and negative social experiences that I had. 

 Why wish the negative upon him , you ask?

Well, the Beckys, Barbs, and Calebs of the world give you warm fuzzies - feelings of acceptance, pride in who you are, and the ability to find good in others even if they differ from you.  But the negatives that I have experienced in the social aspects of life- the bullies, the unyielding cliques, the insecure sect who point fingers and shun those who stray from the norm-  from them,  I learned that it is not my job to make people like me.  I can only be myself.  You’re sad to be judged, misunderstood, unaccepted, but you move on to have rich relationships with Beckys, Barbs, and Calebs.

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Thursday, November 17, 2011

When I get all steamed up, then I shout!

Roa has been a handful. To say the least.

He loves school. He loves his music group, his conductive Ed., his speech and OT times. He loves staying busy. Go go go!

Like a typical, spitfire, 3 year old, Roa wants things his way. Or no way at all. Like a typical, non-verbal child, when his desires are not recognized...he gets FRUSTRATED!
Arching, crying, red-faced yelling, tantrum time. This special behavior, of course, is reserved for mom and pop. Which is a good thing, I guess. But hard for us.

We are working on Roa's MyTalk application for his iPad with Functional Kids and the school so that he can have more outlets to communicate besides our few pictures, the Yes/no choices app, and the "pick a thumb" choice making method that we usually use. When Roa goes "to the dark side". It doesn't matter what choice you give him....he is flat out pissed!

Which, at this point in the Thayer house, is a pretty typical emotion. After 6 years with the company, Bryan was laid off last Friday. He was given a small severance package from API but was told that our insurance is done at the end of the month. Insurance is GOLD to a family with special needs. With therapy and doctoring every month, every day of the week,...with
special equipment etc, that cost a fortune,..we are scrambling.

Currently we are working with Handi Medical Supply to push throughout Roa's wheelchair order so that it is not out of pocket. Lisa from Handi has been a rockstar trying to make this happen. We are also working to get Roa on Medical Assistance and SSI to help pay for some of his doctoring and therapy costs. Roa has Botox and phenol injections at Gillette on Tuesday
next week!! We are praying that $15,000 bill will be covered!
We are job hunting. We met with our financial advisor, Saint Paul, as I lovingly refer to him as. We are scrimping and saving.

Life is full of ups and downs. We realize that. We pray. We work hard. We will be okay, as we are fighters! But once in a while the curve ball hits you a little bit too hard and you need to curse before you stagger on with your battle.

Just ask Roa....

Thursday, November 3, 2011

Update

We finally got the official order of a silver Quickie Zippie Zone Wheelchair in for Roa. By Christmas, we should have the custom built chair! Excited and sad all rolled together. Roa actually had the demo chair at home, school, and therapy for this week and did seem happy in it. Laura, PT from school said he loved tooling around the playground in it and going really fast with his friends! Roa had made a good friend named Caleb at school and they hold hands and play together. Tears of joy from this momma!
Jeremy, the builder of our swing set, helped make us a wheelchair ramp in our garage. Roa is so excited to have a ramp into the house for his gait trainer and chair.

School is going great! Roa is so motivated by the other kids and is more vocal in all environments. He is even attempting to imitate more speech. We have started using the My Talk app on the iPad to help him communicate his needs and thoughts. He did a wonderful job using his iPad while trick or treating, To say, thank you and trick or treat.

We continue with our busy therapy schedule but are actually taking a little mini vacation to Wausau, WI with good friends to get away from it all and to swim......of course!

Monday, October 31, 2011

Latest Photos of Rojo

Roa Joseph Thayer~ 3 years old and loving life on the go!

Moving along with his ever faithful side-kick, Gunnar @ 10 months.

Happy Halloween!

4 months~ fist bumpin'
Halloween Roa~
Pictures of the past
16 months~ leaf lovin'

16 months~ pumpkin carvin'

16 months~spiderin'

28 months~ pumpkin huntin'

28 months~ monkeyin' round

28 months~ goopin'

HAPPY HALLOWEEN FROM ROJO!


Wednesday, October 19, 2011

The Eyes Have It

I have never been good at eye contact. Anyone that knows me knows that it takes a while for me to trust in a person enough to give that full on eye gaze during a conversation. Eye contact is so personal. The eyes truly are the windows to the soul and I don't open my windows too easily. You can read so much about a person by looking into their eyes. To me, it seems to be an almost psychic ability to draw on a person's true character through their eyes.
I also am a deep thinker with the active sort of brain that needs to focus on things other than a face while talking. I look around the room or look out a window to help the conversation flow. Rarely do I looking directly into your eyes.

Roa on the other hand, has excellent eye contact. I cannot believe how well he communicates just by looking at you. Happiness, fear, anger, weariness, excitement, disappointment,...all LOUD and CLEAR through those little peepers.
Beyond that, Roa "tells" us a lot of his needs through simply looking at us. I've mentioned in past posts that we, as parents, have a sort of psychic ability to read our children, but it still amazes me that I can know so much...just through his eyes.

"He needs a drink, has a wet diaper, needs to burp, wants some alone time, wants to go outside, is tired of that position ....".
All this verbalized through his eyes.

The technology of tomorrow promises more assistive devices based on eye gaze. I look forward....straight on with FULL contact, to tomorrow.

Monday, October 17, 2011

Closing the Gap

We were very fortunate to be a part of the annual Closing the Gap conference for Assistive technology in Minneapolis this past week.  This conference is the leading AT gatherings in our nation for therapists and teachers of special needs (and a handful of us parents)!  I attended alone on Thursday afternoon and was joined by Bryan and the boys Thursday evening.  We took Roa into the exhibitors hall to check out the different computer programs, communication devices, adapted switches, mouses, joysticks,  fun accessible games and software, mounting sytems for assistive tech devices on walkers and wheelchairs,..... soooooo much to look and see!  We were all in techno overload!
Roa had fun running up and down the aisles in his trainer and it was nice for the sales reps to try out their wares on an actual kid! 

Links to our faves:
Inclusive TLC products
http://inclusivetlc.com/Products/BrowseSection.aspx?psid=3&gpid=5

ablenet  sounding board app and products
http://www.ablenetinc.com/Assistive-Technology/Communication/SoundingBoard

AMDI.net communicators
http://www.amdi.net/store/software/overlay-designer-pro.html

infogrip products and the ergotrackball!
http://www.infogrip.com/product_view.asp?RecordNumber=92

European design keyboard with eyegaze component "Lucy 4"
http://skilate.com/fs_assisttech_prod5_lucy.html

zot artz for all-  products for creativity in special needs!
http://zotartz.com/

My Talk app for ipad/iphone
http://mytalktools.com/dnn/

Linggraphica apps
http://www.aphasia.com/

AND the COOLEST thing there!!!
Modular hose for mounting assistive tech!!
http://www.modularhose.com/applications/mh-at-kits/90670

Monday, October 3, 2011

Strength does not come from physical capacity. It comes from an indomitable will.~Mohandas Gandhi



School Days, Bus Wheels, and Voice

I greatly apologize to all of you Rojo Fans who have been patiently waiting for this busy mom to get her butt in that computer chair and blog about the King and his start to the school year!
Update, updates...
 First off, Roa is off to Normandy Park Early Childhood Center three mornings a week in the Early Childhood Special Needs classroom with Miss Laurie.  He LOVES school!  He has 7 friends in his class and a group of wonderful teachers, therapists, and aides.  We are greatly impressed with the staff at school.  Pictures of Roa's days are sent home with notes, phones calls, and fun art projects.  He is in Learning Heaven!
Besides the ECSE class, Roa is also continuing to attend the Tuesday evening Early Childhood Famiy Education class with Daddy.  Miss Janet was happy to have Roa return to the group and he appreciates the special time with Dad! 
On Tuesday mornings, Mom and Gunnar attend the Baby Class and Roa gets to go to Sib Care.  Terri has been his aide during this time and has been wonderful.  Another great morning at Normandy.
  Once again, I need to get on my soapbox and say that Early Childhood Family Education is VERY wonderful and a great resource that more families should take advantage of in Minnesota.  Typical to most of these extra programs, I think alot of the parents and children that could greatly benefit from the program do not attend ECFE.  The guidance from educated staff about child development, songs/games/play activities for increased learning and bonding time with  young ones is something so many parents need, especially in our country with so many developmentally delayed children, dropping test scores, and limited parent support in schools.  Off the soapbox...

Roa continues to receive speech therapy, occupational therapy and music therapy at Functional Kids 3 afternoons per week.  He attends Conductive Education on Thursday mornings and Saturdays.  Physical Therapy at Courage Center will begin soon on Fridays.  UGHHHH!  Once again, we are off and running here in the land of CP!

Gunnar has adjusted well to the variety of places and appointments we attend.  He loves the waiting room at Functional Kids with its toys and admiring staff and the vast space at Courage Center where he can run!  Yes, run. Gunnar is at full speed now at 10 months of age.  He is a crazy climber, loves emptying cupboards, climbing stairs, and kicking balls!  Favorite activity for G-man?  Riding on the back of the gait trainer with Big Brother Roa.  There is alot of brotherly love and yelling when Roa gets off that school bus at the end of the morning!

Which leads to the bus.....
We have a love/hate relationship with the bus right now at the Thayer household.  The King adores that bus!  Is so excited to ride.  However, we have had some issues with proper seating for him, a rude driver, and a tumble off the seat when school staff were taking from the bus resulting in a bump, scrape and bruise.
But, Roa loves it, so we will keep trying to make it work.

Other news....
Roa had an assessment for a wheelchair last week.  We will be doing a trial with the Quickie Zippie Zone manual chair next week or so.  That will help us with bus transport and be another mode of mobility for Roa in his varied environments.  We decided to go with a manual chair instead of the stroller variety to give Roa some choice in where he goes and work on arm/hand skill.

Roa had a two week trial with the Dynavox Maestro communication system. It is quite a neat technological tool! However, it seems to be too much for Roa right now.  We will stick to the iPad.  Roa has lost some of his enthusiasm for his iPad.  We have a buzzilion apps that gage from fine motor skills, communication, games, stories.....  He likes Netflix and Youtube the best... :)
Julie at Functional Kids has been working at finding an app that works best to help Roa not only make choices, but gives him a voice in conversation with us and peers.  Sounding Board has been the best thus for for Roa.

Thats all I got for now... AND here are a few fun pics from our little scholar! 
Ta ta for now!





 

Wednesday, September 14, 2011

Pass the Remote

The Thayers had a little Labor Day get away.  When Bryan came come from work that Friday and I immediately opened a beer and sat on our front step, I think he realized how much I needed a break! :)
We travelled to Duluth, MN.  A nice drive and the kids handled the car for 3 whole hours!  Unbelievable!  We stayed at the Edgewater Resort and Waterpark.  Fun was had by all, Rojo the most, as our poolside room looked onto the Lazy River and Tube Splash Zone!
 When Gunnar needed his naps I would sneak away for some selfish ME time to relax on the bed, watch the lazy river, and catch up on cable TV, which we do not have at home.

While channel surfing, I realized just how much watching TV is like raising a child with a disability.  With cable tv, you have a such a variety of shows to pick, but what one is right for you?  Each program boasts to be the best, but there is no place to go that tells you if it is worth your time and energy.
While clicking that remote, you run into the History Channel that tell you of the past.  You see how far we have come, view some nightmares of yester years, and hope that history is not repeated.
Next you come to Discovery Channel and see the wonders that science and investigations can bring to help our children in the future.  You feel so hopeful that, one day, Science and it's advances will help your child.
  Hope and Pray.....
Which leads to the Inspirational Channel.  The religious hymns, prayers, and bible verses drive you to put your child's future in the hands of our Creator.  Jesus, take the wheel.  And you pray with all your heart and soul to be the next miracle.
But until that miraclous day, let's see where Science has lead us today on the Learning Channel.  Lets see  mysteries of the brain that have been uncovered.  Lets see what method of therapy or medical treatment we can look into, research, contect with.
After so much thought provoking, intellectual simulation, it is time to click on to to the Comedy Central.  It is life, after all, and if you can't laugh at the crazy ups and downs we face each day, then you will go Insane!  
Speaking of insane,... time for a little Psycho-social drama with Dr. Phil, Jerry Springer, Real Housewives and the likes.. Reality TV that, come on, you call that REAL?  Spend a day in my shoes and I will show you real LIFE with limited sleep, family drama, fights, tears, and make ups.  Drama unfolds everyday as you get on the special needs rollercoaster of life.  Exclusions from family trips and get-togethers,  uncaring, uninterested relatives that hurt and anger you,  isolation from other parents or friends who cannot relate,  battles with insurance companies, copay woes, budgets and fears of future plans.  THAT is reality!!
On and on you surf until your head is swimming and you wish that the National Anthem would play and be followed by that wonderful BEEEEP sound of the television going off the air...
 Yet as we all know, those days are past and the TV plays around the clock.  The never ending dramas, searches, hopes, and fears that a click of the remote can't fix.

Monday, September 12, 2011

Sleep study

Roa had a visit to Dr. Sleep at Gillette on Friday.  Dr Garcia is such a kind, calming man---Makes us want to take a nap... all of us but Roa, that is.

Roa is undergoing a sleep study.  He wears a "watch" around the clock for two weeks that is actually a device that measures movement.  We are looking at rest times vs. sleep times and trying to get an approximate measure of how much Roa is awake during the night.  We also have increased his trazadone sleep medication to suit his growing size.

We continue to try to explore how to help Roa and the entire Thayer family sleep with more ease.

On that note..... Gunnar is awakening from his morning slumber....

Tata for now!

School for Roa!

Roa had his first day of school today!  Mom was so nervous!  Roa on the other hand, has been walking around our house with his backpack on for the past week!  Ready to go.
Bryan, Gunnar and I took him in this morning.  We were nervous to leave our nonverbal, demanding boy in the hands of strangers.  The teacher, Lori, and therapists, Mary and Laura, visited our home last week so complete strangers they were not, but it was the very first time Roa would be with people other an those who know him well.
I wrote a chapter book of notes to try and communicate what works best for Roa...poor teaching staff.  What an uptight Momma!  But I want everything to go smoothly.

Roa had a great first day!  When Gunnar and I returned to pick him up, he was giggly and happy.  Laura explained his day and all is activities and how they adapted it to work for Roa.  It is really a warm, caring environment!  I was relieved and proud that Roa is my little school bug!

Now for Wednesday... let's see how this nervous momma lets go and puts her boy on a school bus....    stay tuned!

Wednesday, August 31, 2011

Backyard fun

So we finally have gotten around to working a bit in our backyard to make it a more fun, more accessible place for Rojo.  We took out our old rusty swingset and had a cedar set custom built with a playhouse ramp so Roa can enter and exit.  HE LOVES IT!  Auntie Ellen and Uncle Bill got Roa an adaptive swing last year for his birthday, so the new playset is perfect for him and Gunnar. 
Along with the set, we had a 16x16 sandbox with an entry point for the gait trainer. A TON of sand was added this weekend thanks to our neighbors Russ and Kelly, and we are in business!

We had so much fun in the yard this past weekend that we decided to take it a step further and do a campout.  We set up both our tents, made a campfire with hotdogs, smores and the works!  Both boys had fun and Roa could barely contain himself!  We  read camping stories, watched "Just Me and My Dad" with Little Critter,... camping was everywhere!  :)
Unfortunately, by 8:00... both boys were exhausted and ready for the house and bed!  No sleep out this time... maybe next time we will brave the tent and sleeping bag extravaganza!

Monday, August 22, 2011

Updates- play, move and say

So much new and so little time to blog! Updates...
Roa got his new Imp trike! It is pretty cool and he liked showing it to all his fans in our neighborhood. It needs a new handlebar that fits Rojo a bit better, but otherwise it is a wonderful new mode of mobility and play.
We had the Conductive Education Fundraising Walk and Family Picnic. Small turn out for Team Roa, but we haven't learned of the donations towards his therapy yet. If you donated, we thank you and appreciate the support.
Last week we had a carpenter build a swing set/playhouse with a ramp for our backyard. Roa and Gunnar love it! The ramp is a hit as Roa walks up in his gait trainer on one side and zooms down fast on the other! This week, Jeremy the carpenter, will be back to build a sandbox- 16x16 with a sensory table, mud pie kitchen, and gait trainer entry ramp- is in the plans.
Today, Roa has speech and OT. A representative from the Dynavox company will be at the session to try out a few assistive tech. devices with Roa.
We have upcoming appointments at Gillette to review Roa's Botox effects and also a consultation to find a seating system that best fits his needs. Andrea, PT from Courage, would like us to opt for a manual wheelchair so that Roa can learn to propel himself around a room. We will give it a shot.
Roa has been gaining strength all summer and is attempting to maneuver a supported crawl! Very promising. He also has mastered saying Hi and his name. When that sweet little voice says, "Roa", I simply melt! More later gotta run.

Wednesday, August 10, 2011

Conductive Walk

Today is a busy one! Roa is at Conductive Ed this morning and when he gets home, we are off to Courage Center to visit Andrea, PT. It has been a few months since Andrea has seen Roa, so it will be great to get her input on exercises and ideas to work on continued progress with mobility for Rojo. Andrea also will be helping us pick a push chair/stroller for Roa to use for school. It is hard to believe, but in one month, Roa will be heading to Early Childhood three days a week! We are no where near where we wanted to be in movement, self feeding, and potty training,but....this is a marathon not a sprint....as Bryan always says.

We are excited for this weekend as we will be participating in the Plus Center's Walk for Conductive Education and Family picnic. This is a great time for friends and family to support Roa and other kids with cerebral palsy, learn about the program, meet others, and hang out. Unfortunately, i think Roa's group of supporters will be a small one as the majority of our family and friends have other weekend plans, but we will be an excited small group!

If you would like to make a donation to support Roa's continued program, please contact me for info. We pay for Roa's conductive education and transportation out of pocket as our insurance does not cover this form of therapy.

Wednesday, August 3, 2011

Swallow study wrap up

Well the swallow study went off without a hitch. Gunnar stayed home with Brittany so mom and dad could focus simply on Roa. It was a quick wait in the waiting room...long enough for Ro to hang out in his GT in front of the bubbly fish tank. We entered the X-ray room and talked to the therapist about our concerns and questions. Roa was placed in a feeder seat by the X-ray machine and was mesmerized by the enormous tv screen showing sea creatures! Perfect! He then was fed a variety of textures and food/ drink consistencies and took it all like a champ. However, it would have been beneficial for him to do some of his gagging gigs and turning to the right to show one of our concerns, but as life goes...no gagging. As Roa ate, the doctor and therapist watched him on the X-ray machine. Roa does have some pooling of food residuals in the back of his throat on occasion. However he was able to clear it with head posturing, a throat clearing, or drink.
Next we did the barium swallow X-ray check for reflux. Roa drank the chocolate laced barium like a milk shake! He cried when it was necessary for him to lie back on the table under the machine for the doctor to watch for reflux, but was easily distracted by sea turtles and more milk shake! Reflux was observed, but the doctor said it wasn't terrible and he seems to be maturing through it.
Basically, the study showed that: yes, Roa does have reflux issues that may be eased with the prevacid and positioning after meals and at bedtime. And, he does have some food residuals that collect in his throat, but if we continue to allow him to posture as he sees fit for swallowing, it should not be a problem and should ease congestion.
For therapy, we should focus on proper rotary chewing so that Roa learns to break foods down before swallowing. We should stay away from beef or tougher meats that are hard to break down. We should also offer frequent drinks to clear foods.

The toughest part will be allowing Roa to position his head back for swallowing as it goes against what therapists want and what is typical. But as we work to strengthen his trunk and neck, typical alignment should be closer the norm.

So, eat away little man! We will let you figure it out in your smart little brain on your own timeline!

Monday, August 1, 2011

The Land of Chewandswallow

Tomorrow Rojo has another swallow study appointment at Gillette. The therapists at Functional Kids are questioning his conjestion after meals and his need to turn to the right with swallowing. It has been a concern for some time and a big piece of the independence puzzle. We are anxious to find out if perhaps Roa is still having issues with reflux that prohibit him from maintaining correct posture while seated. We are back on Prevacid for nights but haven't noticed a huge difference in sleep patterns, he still is up 1-2 time per night. Hopefully the swallow study will give us some answers.
On a positive, Roa has been a CHAMP at attempting to self feed and drink! He is working hard to get the food, utensil, or cup to his mouth and often succeeds with help getting it positioned in his hand. This step is a huge one towards self care and will help him so much when he starts school this fall.
As for school starting soon, ughh! Scary! We are currently looking at purchasing a stroller/push chair/high low base for school and bus transport. We are also looking to balance his therapy schedule and still give the poor guy Mommy time and a nap! It will all come together, I know. But right now, it is overwhelming.
FYI, our top push chair pick is the Snug Seat Stingray. Pretty sweet ride for the King!

http://www.southwestmedical.com/products/Snug-Seat-Stingray-29057.html

Wednesday, July 20, 2011

Confessions

So, life continues to be crazy busy at the Thayer house.  Roa's therapy routine keeps us hoppin.  Add to that the busy world of Prince Gunnar the Great and it leads to little complished by Mama.  Gunnar is now crawling all over, loves the outdoors (much like the King), and pulls to stand on everything!  Fun, busy times.

We had BIG dreams and plans to revamp our backyard this summer to make it a Roa friendly playspace and that project has made no gains.  Sad to say.  We either have weekend plans, rainy weather, or terrible heat holding us back.  It will happen.  Someday...and it will be a slow going process for physical, time, and financial reasons.

We also planned on getting right on an enterance ramp for Roa's transitions in and out of our home.  That too hasn't happened yet.
Potty training.  Not yet.
Exploration of further therapuetic attemtps.  On hold.

Pretty much all my summer plans and endeavors in our Land of CP have taken a backseat to life in general with two busy boys who love Mom and Dad's unlimited attention.
On a positive, I am so very much enjoying motherhood with my boys.  Somedays, I want to pull my hair out and run screaming into the woods, but most of the time I am so mermerized watching them grow and change.  I truly hate when my occasional trip away to the store or dinner with friends or date night runs too long!  I don't want to miss a thing!
Gunnar is so entertaining for Roa.  Roa watches his every move and wants to make the sounds Gunnar makes, play with toys Gunnar has, move like Gunnar is moving.  It has made "Momma therapy" sessions of rolling and crawling, stretching and positioning much easier with Gunnar there for distraction.
Gunnar is eating everything insight as well, making Roa want to self feed!  YEAH!  He isn't able to get food into his hands independently yet, but is getting it to his mouth when you help position it. 

Baby steps.... little earthquakes...  I am enjoying.   As our summer flies by without the goals being checked off the Land of CP To Do List.

Tuesday, June 28, 2011

The list

This week we are doing a trial with a Quickie Kid Kart push chair. It is a special needs stroller that provides a lot more support than a typical stroller. More importantly, it has bus tie-down ability for the Fall when Roa rides to school. Last week we tried the Ottobock, and were not happy with it's overkill support and large size. This Quickie is average size, as special needs strollers go and has head support and trunk laterals that work well for Roa. We struggle with the idea of purchasing on of these push chairs for many reasons. one, it is hard to enter this world of "wheelchair" contraptions when you wish so desparately hard that Roa will walk. Two, it is not exactly a "therapy chair", as the description implies. There is no work when strapped and belted and fully supported. Three, we don't want smart little Rojo to figure out that this is easy....just push me around. And lastly, silly as this sounds, the new push chair idea will be the complete and utter Cerebral Palsy red flag. As I used it yesterday, going into Functional Kids for therapy, I was very conscience of the looks we got from others. We no longer can disguise the lack of motor control with a regular stroller. This chair screams...yep. I have CP.
Silly. I know. The kid walks with a gait trainer, wears AFOs...it's one more thing. But just another step in the grief cycle. And one more thing to add to the costly list while traveling through CPland.

Monday, June 27, 2011

Birthday Boy

Roa had his third birthday on Friday!  I cannot believe my boy is 3!

 I took the day in with both joy and sadness.  I feel like I have aged about 10 years in these past 3!  You never dream on the day you give birth to your new little life that at age three, he would only have slept through the night a handful of times, that he would not be self feeding or dressing, or sitting on his own.  That you would be looking at pushchairs, walkers, and assistive seating.

I watch Gunnar grow, 7 1/2 months now, and see how development is fun!  Full of exploring with his hands, feet, and mouth.  I see him move into tripod stance with such ease and bear weight on his arms.  Amazing!  He is starting to eat soft chunks of fruits and he doesn't gag! 
He is smiley and giggly, as every baby should be.

Roa was not so fortunate in his babyhood.  He cried more than he smiled.  He felt discomfort more than he felt joy.
It is those memories that make me so melancholy. Motherhood was so stressful and sad with Baby Roa.  Motherhood with Baby Gunnar is amazing!
 As a parent, you want THE WORLD for your child!  When he struggles throught it, you search for answers of how to heal his pain.   Until cerebral palsy has a cure... until Roa is able to tell us what works for him to help bring independence and joy,... we will keep searching.

It is a timely, expensive search...this mission of moving forward in the land of CP.  We do not receive financial aid of any sort due to our income and Roa's level of need.  We get some guidance about equipment and treatments from his assorted therapists, doctors, and specialists, but even they are not up to date on all the chairs, alternative methods, walkers, speech tools,...etc that are out there.  We spend spare time searching... my Knowledge Quest, I refer to it as.  We read, we inquire, we pray.  Man do we pray!  Sadly, we sometimes doubt that God is listening...

We budget, we save, we forego family vacations and extra "things" for ourselves to pay for equipment, toys, aides, therapies, vitamins,... that just might work for Roa... and sometimes they don't.

We thank you, family and friends that celebrated Roa's birthday through gifts of money or toys that just might work for Roa. We thank you even more for the support that you might have given us through the past three years.  Roa is stronger because of you lifting us up along with him.

My main message to you today is this-
EVERY DAY is a test in strength and faith for those of us who struggle with a disability. 
EVERY DAY is a new lesson in grief for what might have been.
EVERY DAY our hearts yearn for an answer. a cure. some grace from above.

So Three years later,
DO NOT FORGET about us and our daily struggle.  BE our shoulder to lean on. Our voice in prayer when we are discouraged.  Be our hope and our faith when we cry out for answers. 
We need you still today.  Three years later.  We still fight.


Saturday, June 18, 2011

Botox complete

Botox is complete again. Round four. It was very strange as we decided to have Gunnar and remain at home while Dad took Roa in for the treatment. It was very difficult for me to not be there- ready to give him a big hug and snuggle after the session.
Bryan said he did fine. Cried more than the last sessions, but had a long wait with an empty tummy beforehand, making it more irritating to the King. As usual, Bryan cohersed the nurses assisting to break into a chorus of kids sons to help Roa remain calm. Always a hoot to hear about!
Bryan and Roa went swimming this morning and Roa is already showing some side effects from the injections, especially in the adductor area which will help in floor sitting.
Now is our time to stretch and strengthen while the botox is in full affect.

Thursday was our last Birth to 2 session with Laurie and Mary. We are so sad to have these wonderful ladies exiting our lives, but Roa is growing and changing and on to new adventures with new teachers and therapists.

Friday, June 17, 2011

Wednesday, June 15, 2011

A letter Teacher and Therapist

To whom it may concern ~ A Message from a Parent of a Special Needs Child (author unknown)

by Mommies of Miracles on Tuesday, June 14, 2011 at 8:25am.

Remember that he is, first of all, my child.
Let me see him smiling in his sleep and let me think about how handsome he is...
and not about how delayed that smile was in coming.

Help me not lose sight of my son in the shadow of his limitations...

I know that you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is and in following through at home with things that are important.

Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of having a vacation, sometimes physically,
sometimes just emotionally, for a day, a week, a month, without your judging me.

I will be there for him when you are long gone.

I love my child with an intensity that you can only imagine.

If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.

Celebrate with me, rejoice in who he is and who he will become...
but forgive me if from time to time I shed a tear for who he might have been.

Happy Hiker

Roa loves hiking in his backpack carrier with Daddy.  It's getting to be a workout for Daddy, but he is up to the challenge!   Well rewarded with a giggling rider!

Eyes a watching

As I sit down to do a little much needed blogging, I feel little eyes wtching me from the swing. Gunnar is awake. Much like his big brother, gunnar is a mini-napper, sleeping for 30 minutes- 3 times a day. Roa is off to Conductive Ed with Brittany, but my "time-off" isn't like it used to be since Gunnar came into our world.
Gunnar is a miracle. We marvel at all his accomplishments and watch with wonder as he sits, uses his hands, eats without gagging.  He has now started to pivot and move backward on his tummy.  He even is pulling to stand. Having another child was scary after our struggles with Roa, but I am so happy we did.
Roa loves watching his brother. He wants to see everything Gunnar is doing. We are happy to report that Roa is pretty motivated to play on the floor now with his brother.  We are working on that darn sitting with independence.  UGGHHHh!  The day Roa sits on his own for longer than 3 minutes( which is his current record)  I will do kartwheels across the lawn!!  I promise!
Gunnar and Roa have a secret joke going on at all times.  Looking at each other and laughing....  it melts my heart.

*****Okay, so it is a week later since I started that post.  Having these active kids is hard on a blogger!
Roa is off to day one of his summer session of Conductive Ed.  Grandma Lenore was kind enough to drive him as Brittany is off frolicking with Mickey and the Gang in Florida.
So, I will take this time to blog and ignore the dust bunnies fighting over the Gerber puffs tucked under our table legs.

Roa has a busy summer planned therapy-wise.  Tomorrow is our very last Birth to 2 session and I am so sad!!!!   I can't believe that these wonderful ladies will not be visiting us anymore at the Thayer home!  It is hard to imagine Roa growing and changing without them! 
Roa will be going 2 days a week to Conductive Ed, Speech combined with OT 2 days as well, Music therapy 1 time, aquatic on our own 2 times.  We will try to fit a few craniosacral session in as well.  Oh, and hippotherapy/horseback riding starts after his birthday.

Our little Roa is turning 3 on June 24th.   So hard to believe.  He is getting so tall.  I wish I could put in a wish to God to keep him small for just a bit longer until he gains more stability!  We bought him a new Child Rite seat- similar to a Bumbo, but made for larger children with special needs.  It helps with floor time, but he really wants to be down on the ground with his brother.

On Friday, Roa is recieving his 4th Botox injection series.  That too, will help with sitting and hopefully will aid with his continue practice with his reverse walker.  We like his gait trainer, but the reverse walker gives him more freedom.

Okay, so update complete!  Off I go to conquer the housework before G-man wakes up from his power nap!

Friday, May 27, 2011

Happy Friday!

Shaving cream painting the wall in his upright stander.
Why the hat, you ask?


Silly question!  ;)

Thursday, May 26, 2011

The funny thing about kids

I spent this chilly May morning in my basement with the two boys, cleaning and sorting through our buzzilion toys.
 Before having Roa,  I was pumped up to start my own little preschool in our basement.  Bryan and I started organizing the space as soon as we moved in with toy shelves, tables and chairs, alphabet hung on the wall,... the whole works.  After years of teaching, I was excited to do it MY way without the bother of teaming with other teachers, therapists, etc.  I was excited to work with the "typical" child and was feeling a bit burnt out from the "special needs" scene.  Set up that wonderful, enriching environment, plan hands-on learning activities set to music.  Laugh and frolic together and earn a little extra cash as I enjoyed my new career as a Stay-at-home mom.

Well God had other plans for me.  No other children to care for when I had my Roa needing me full time.  So, that lovely play space in our basement has been exclusively the King's... until....

Enter, Prince Gunnar.

So both boys were down in the basement with me.  Both boys wanted the same exact toy.  Both boys wanted and NEEDED mom to be right there beside them.
 
Pick a toy up, throw it in the bleached water, run over to Gunnar as he cried to be picked up,  run over to Roa as he screamed from his blanket because the Animal Train was ramming into his forehead...., run back to the water to lay the toys on a towel, run back to Gunnar who now was being tumbled over by two wrestling dogs,....restart the bubble machine for Roa,  race back to Gunnar who grabbed a dog toy to mouth,  run back to Roa because he wanted to roll over and insists I be beside him for the big event..... place Gunnar beside Roa to stop my running, return to the bleach tub, only to hear the shrieks of Roa as Gunnar pulls his hair....

UGGHHHH!!!

You see, I spent years playing with children at the daycares I worked at, at the schools I taught.  I visited children's home and played with their own toys with them and encouraged parents to join in.  I studied play and brain development and earned my Master's degree in education.  I taught play to learn/learn to play classes for parents. 
Yet this chilly May morning,  I actually forgot all my knowledge and tried to get some work done when both my boys (and both my dogs) just wanted me to play.

The funny thing about kids.... you can buy them the Willy Wonka World of Toys, but until they have your full attention, until you show them the joy that toy can bring,  it ain't gonna happen.


Monday, May 16, 2011

Medium

We had our IEP meeting with Normandy Park School Staff on Friday.  It was such a crazy experience for me- to not be in the teacher seat, but  be there as a parent.  We met Roa's teacher for the fall.  Lori was very nice and took the position of recorder of all topics we talked about at the meeting.  She seems like a great teacher, ready to take on the challenge of King Roa! ;)
 He can be a handful... and a non verbal one, at that! 
That part of Roa, his inability to verbally communicate, has us in the most distress about sending him to school.
As a parent of a child with special needs, it appears as if God has granted us the super power to read Roa's mind.  We are now telepathic in regards to Roa's needs.  Roa can whine, whimper, scream, or shriek and we know if it is joy, fear or a need to be met.  When we have a babysitter or relative watching Roa, we try and explain the different sounds and their meaning.  When Roa is at therapy, I am usually there to mind read and pass on the info.

What will the school staff do?  Will they know what he wants or needs?   How will Roa fair? Will he get frustrated, angry, sad?  Will he be able to interact with the other kids?

It is not just the interactions he may miss, but also his physical positioning needs.  Since Roa doesn't move on his own without his gait trainer, how will he communicate that he is tired of sitting/standing/squatting/ kneeling. etc..?  Will he get enough time on the floor to attempt floor play?
Will his iPad save the day?   Will it be the tool to help him "talk", along with his few attempts at words?  Will they understand?

They will get in a groove.  They will figure him out.

 But it is so hard to think of sending him off on that school bus with me, his Medium, standing helplessly in the doorway watching him go.

Friday, May 6, 2011

Spring has sprung!

Beautiful weather here in Minnesota!  Finally!  Hopefully it will stay this way for a few days.
Roa has been enjoying his time outdoors as always.  While doing some work in the front yard, Roa did a wonderful job of taking out all the dead plants that I put in the wheelbarrow.  Working on skills is the way I looked at it!  My little helper.

We are back to cruising the neighborhood in the gait trainer.  Up and down we go, greeting neighbors as we pass.  I am quite a sight with Gunnar strapped in the carrier to me and Roa giggling from the gait trainer.  That's how we roll 'round here!  I have had a few people out for a stroll ask if I need any help.  Is that what it looks like. people? :)

Roa had a great session of PT with Andrea at Courage this week.  He was running around the center in his gait trainer!  Andrea has never had the pleasure of seeing him  on the go, so it was a nice way to end our 8 week session before taking a little break from one on one therapy there.  Andrea gave us a reverse walker to try over the next month or two.  She also loaded us with ideas for pool time therapy as the summer months of aquatic therapy time are upon us. 

After Roa turns 3 in June, we will be beginning hippotherapy with Courage Riders.  We are very excited to give this form of therapy a try.  I have heard wonderful things about the benefits of horseback riding for kiddos with cp.  Improvements in trunk control and balance as well as decreased tone.   We are really lucky that we got into the program as there is a waiting list.  God truly had a plan when one of the therapists for the Riders ran into Roa and my sister, Vickie, at Functional Kids during a speech session.  She thought Roa would be perfect for the program, so yippee ki yay, off we go!

Roa had a great session of PT with Mary and Craniosacral time with Kim.  Something seems to be clicking in that brain of his and he is allowing more weight bearing in his arms in 4 point stance.   God willing, Roa will learn to keep up the strengthening of his arms to actually move himself across the floor someday.

Next week Monday, we are off to tour the Early Childhood Program at Normandy Park and meet some of the therapists and teachers there.  Friday is Roa's official IEP meeting to enter the school system.  Big and scary day for us!  We are still sorting out the details of Roa's school for the fall and might do a combination of St. Jude's preschool with ECSE program in an every other day set up.  Many decisions to make on Friday.

Well, happy Mother's Day to all you moms out there who devote your lives to your children.  May you find time to celebrate the graces you have been blessed with!

Monday, May 2, 2011

Bunnypalooza

A little bit bunny-shy

Hanging out with two best bunnies


Too cute for words....

Visit ala flutter photography for more great photos from a wonderful photographer!

Dear Blog

Dear Blog,

I know, I have been bad at visiting you. 

I apologize for my absence, but need you to understand that my life has changed and getting time to journal with you is limited.  I also need you to know that I think of you often.
 I blog in my head as I drift off to sleep for my 2-3 hour slots of slumber time before Sir Gunnar beckons to be fed or the King requires repositioning in bed (now primarily Daddy's job).  I blog in the car as I drive to and from therapy sessions with King Roa.  I blog in the shower.  I blog in the rocking chair as I nurse.

You are always on my mind, dear Blog.  Because of you, I can get out all my emotions, both positive and negative, concerning our journey into the Land of Cerebral Palsy.  Because of you  I can share with the world things that have helped us, discouraged us, gave us hope, gave us grief concerning CP.  Because of you, Blog... I remain sane.  ( I guess that is really still questionable)

To the faithful followers of you, Blog,  I also apologize because I am not keeping you posted and up to date on our journey.  I will, as I have promised before, attempt to do at least a weekly visit to share, vent, rage, rant, laugh, share and reflect.

That is my pledge to you.
                                                                     Sincerely,    Jennifer

Monday, April 25, 2011

Spring has Sprung

Well it appears that Spring has finally opened her welcoming arms to Minnesota!  Thank God!  We thought it would never happen.
Roa is celebrating Spring with his usual-  bubbles, gait trainer walks, playing in the birdseed/sand/dirt/water table and chasing Beast, our cat, around the front yard.  It is so nice to see those sun kissed cheeks and nose of his again!  Welcome back, Mr. Sun!

Along the subject of outdoors, the Thayers are planning some outdoor renovations and improvements to help out the outdoor enthusiast, King Roa.  We will be replacing our front porch and step with an easier ramp for gait trainer accessibility.  We are also looking at doing some altering of our backyard to make it a more CP friendly playspace for Roa and Gunnar, as well.
We count ourselves lucky to have a beautiful big backyard.  There is plenty of play space for the boys to roam, along with our dogs and cat.  We even have a nice portion fenced off for a sizable garden. 

While doing some research about outside play for kids with physical impairments, I ran across a great resource.  White-Hutchinson is a company that designs beautiful natural playscapes for childcare centers, city parks, churches, etc around the country.  I went out on a limb and sent an email to Vicki  Stoecklin, Education and Child Development Director for the firm and she has been very helpful in our planning for a natural backyard wonderland for the boys!  She was kind enough to request photos of our backyard and then give detailed ideas of activities we could include in our landscape.  She also sent me a variety of book titles, websites, and contacts to help plan our yard. 
Thank you, Vicki, for all your help and guidance with our project!
Check out White-Hutchinson at 
http://www.whitehutchinson.com/children/playgroundexp.shtml

For those of you who are curious about Natural Playscapes,  I want to include some interesting links and articles.  Research is finding that, not only are playgrounds designed around natural elements more enticing for children, they also tend to be more cost efficient, AND  handicapped accessible!

http://www.arborday.org/

http://www.planetearthplayscapes.com/

http://playgrounddesigns.blogspot.com/

Tuesday, April 5, 2011

Gillette visit

Yesterday, Roa had his check up with Doctor Gormley at Gillette.  Long wait time, but an overall good report! 

Dr. Gormley was impressed with Roa's walking in his gait trainer.  He also was happy with Roa's range of motion and the decrease tightness of his muscles in his legs.  Good news!!
We are scheduled for the next round of Botox on June 6th.  It is nice that we can stretch it out a bit more and that Roa's muscle development seems to be responding well to the injections paired with his vigorous therapy schedule.  We seem to be on the right track!  
Each day, we work hard, play hard, it is paying off.

Roa had a visit yesterday with OT and Speech therapy home-based.  They completed additional speech testing for Roa's school entry report.  Roa did a nice job of attempting to imitate words!  He is trying so hard to say what we say.  He even said "Roa" in a way we all understood! YEAH!
  When asked to point to pictures in the test manual, he was not so cooperative.  Man was it frustrating to just sit back and watch as he refused to "touch" pictures of things I KNOW he knows. But, it was just one test.... kids will be kids! 

Therapy vest links

http://theratogs.com/

http://www.southpawenterprises.com/Bear-Hugs-P837.aspx

Saturday, April 2, 2011

The hills are alive...and giggling!

The sun is shining, Roa and daddy went swimming, Gunnar is napping. I am sitting back drinking my coffee, watching my window bird feeder (thank you Vic and Craig) and not allowing negative thoughts to get me down! Perfect time for blogging, I would say!

Updates, updates....

Roa tried a different piece of therapy equipment called Theratogs with Andrea at Courage this week. This form of therapy entails a vest worn with elastic strappings that help the child hold or movtinis body in a corrected form. It was a good attempt, but King Roa was not having it! Cried and cried. Hard session for Momma. Luckily Andrea ended the session with rolling on the incline mat- with Mom at the bottom as a target, Roa rolled like a barrel! So exciting!
The next attempt will be a pressure vest called The Bearhug. Stay tuned...

Ors is happy with Roa's supported walking with his new afos at conductive Ed. He also is happy with his increased abilities with cup drinking and self feeding with adaptive spoon.
Brittany has been taking Roa to CE on Wed. and it has been such a blessing to have her be apart of the Thayer family! We love her!

Yesterday, Lori watched Gunnar while I took Roa to a music therapy group at Functional Kids. Lori also has become part of the family with her help and support!
Roa LOVED music time! He laughed and wiggled and tried to Jump in with a word here and there! Definitely a session we will try to add to our busy schedule!

We survived our bathroom remodel project with little injury and all managed to stay somewhat clean and sane! :)

Lessoned learned this week....
Bathroom remodels are difficult and messy, but the end result is beautiful!
Family does not always come in blood, but with actions and words of support.
Life is difficult and messy but the end result is beautiful!

Monday, March 28, 2011

A Tale of Two Children

Little fingers that open and close around rattles and toys, amaze me. 
A small body twisting at the trunk to look around, puts me in awe.
Head control.  Rapidly kicking feet.  A body that sleeps so easily and sound.

My little Gunnar has given me these experiences as a Momma.  New experiences.  Milestones that come so easily without trial and practice and fight.  That small brain just clicks and processes it all.

Wow. 

I've taken the classes. I've read the books.  I've  even taught a few classes myself to parents about typical development.  But NOTHING is as miraculous as watching your own child reach those goals. I feel such JOY!
 And NOTHING hurts more that watching your child struggle to meet those goals.  I feel such PAIN!

Everyday is a new lesson in joy.  Everyday is a new lesson in grief. 

As I type little Gunnar jumps beside me in his Jump-a-roo.  Reaching and mouthing the toys attached.  He has just awoke from a blissful 2 1/2 hour nap.
  As I type, my Roa, is laying on the couch.  Tired from his two therapy sessions today- one morning OT /one afternoon Speech.  He is not able to nap today. I missed that window of opportunity.  The parental guilt sets in as he watches a video because it is the only thing he can do on his own.  The mommy guilt also because I pray that he drifts to sleep for a while so that I don't have to position him and entertain him more today before Daddy gets home.

Depressing but reality.  Our reality here.

 With some small fingers that grasp and play and others who long desperately to do so.

Wednesday, March 16, 2011

Give an inch, Take a mile

Roa got his new AFOs and SMOs at Shriners last Friday. Another long appointment, 2 hours!  UGH! Shriners is such a great place with such nice, helpful staff.  However, I don't believe we will be going back there. We have been so happy with Gillette and Winkley Orthotics.  Also, Shriners is going to start taking insurance, so there is no real benefit to going there for us.

 While being fit for his new orthotics, we noticed that the floor of the brace went quite a bit past Roa's toes.  I asked them if we could cut it back, as Roa is used to "free toes".  I also was concerned that we would have to buy shoes 2 times the size to fit this brace and that would hinder Roa's walking. 
They explained to us the reason why the brace goes out so far (due to toes clenching and increased tone) however, I don't want to take away his walking.  I think the staff was really quite surprised that Roa does as much walking as he does.  He can still get in his gait trainer or stander, they said.
  We kept repeating, "He walks EVERYDAY in his gait trainer."... on nice days, he WALKS the entire length of our street.
They did as we requested and cut back both pairs of new braces past the toes.  They told us they wouldn't be surprised if we come back wanting to redo after our doctor and therapists see.  I guess we will wait and see what happens...  But they don't know our Roa.  (They asked about "assisted seating" or a wheelchair... SIGH...)
It is not their fault they don't know that if they make his braces uncomfortable for movement and take away our walking,  life at the Thayers would be pretty unbearable!

Roa's WBL therapists have spring break this week, as does Andrea at Courage.  It is a lighter work load this week with speech at Functional Kids and Conductive Ed.
We have been working on slowly introducing the new braces and Roa is responding pretty well.  It helps that he got new shoes too!  Such a shoe lover, this boy! ;)

Back to the assisted seating/wheelchair idea...  We know the time is coming that Roa will need a wheelchair or push chair.  He is growing like a weed and is getting hard to carry.  But for now, we hope to rely on his current stroller and the gait trainer.  School in the fall will bring us in to the world of assisted seating for mobility.  Until then, off we walk, gaining strength as we go... God willing.

Wednesday, March 9, 2011

Blog time....oh how I miss you!

I am sorry for my long absence from an update.  These two Thayer boys of mine keep me pretty busy!  Computer time is limited and when I have down time, between housework and bedtime,... my blog has taken a major back seat! 

So much has been happening in King Roa's life!  As we speak, as I blog, Gunnar is sleeping in his swing and Roa is playing with a new app on his ipad in his blanket fort.

 Oh, the ipad....how we LOVE you!!  I can't even begin to tell you how life changing it has been.  Apple had NO IDEA that we special needs families would grow to truly rely on it.  Roa has such freedom with his ipad.  Freedom to operate things with his hands that don't always cooperate through traditional play.  I joke with Bryan that we need to make sure we add 3-dimensional play into Roa's life each day!  Don't worry, he gets plenty of that too.  But with the ipad in tow, I can tend to Gunnar, make dinner, go to the bathroom,.. and Roa stays busy and entertained.  AND he is learning, SO much!  By simply touching the dog and it barks in Peek-a-boo Barn, Roa imitates the sound.  By hitting the ipad fast or slow with his little fist with Cosmic Top, Roa learns about speed and how moving his body in different ways can make the top spin.
Yes, we love the ipad in all it's glory.

Roa visited Shriner's Hospital in Minneapolis last Monday.  It was a L O N G day, but a great experience.  Roa was seen by everyone under the sun. OT, PT, nurse, doctor, physicians assistant, orthasist.  We were there for 4 1/2 hours!!  But, we got a new stander, a new bathseat, and two pairs of braces are on the way.  Shriners is a wonderful organization that helps kids with physical disabilities with very limited cost to the parents, if any!  Everyone was so nice there and the Thayer boys were a hit!  Gunnar was scooped up by nurse Kathy, and trucked off for show and tell in the nurses station.  He giggled and impressed everyone.  Roa was his usual entertaining self, laughing and playing keep away from Daddy.   Both boys were rockstars during the long process.

The therapists from the school district have begun to do testing with Roa for school coming this fall.  I can't believe Rojo is heading to school!  Roa is doing pretty well with the testing process itself.  Momma has to sit on her hands not to help him.  It is difficult to watch him struggle through the motor tasks.  He tries with all his little might to put that puzzle piece in or reach the right block.  Luckily his therapists know him well and give him as much credit in scoring as they can.

Roa is imitating alot of sounds.  That has been very exciting for us!  He is consistently making an imitation when we give the visual cue of touching our lip.  I am praying we will have a few basic needs terms mastered before school in the fall so that Roa's desires don't get lost in his screaming!!  When King Roa doesn't get his way, we hear some yelling, to say the least.  We are working on the communication piece at every chance!

Roa is really tired of gait trainer time indoors.  I'm gonna wring that little groundhog's neck if he is wrong and spring isn't just weeks away!  It is time to head outdoors.

Other brief updates-  Roa is rolling down an incline mat at Courage with INDEPENDENCE!  Yeah!!
He is attempting arm and leg movements coordinating for crawling. 
Roa sucessfully answered object function questions during the testing session (what do we wear, what do we drink with) by picking the correct object.  My boy is so smart! :)
We have started sitting on the pottychair to practice going potty.  Wish us luck with that!

Gotta run!   Prince Gunnar beckons!

Final note~     March is Cerebral Palsy Awareness month!  Pass on my blog or other CP links to friends and family to spread the facts and open up the eyes of others about disabilities. 
 God made us all different, but gave some of us extra graces meant to help others.  Reach out and help someone different from yourself today! 

Wednesday, February 16, 2011

Brotherly Love

Compliments of Lori S.  Thanks, Lori, for catching the moment!

Good Mother

Dear friends,

This is a letter to apologize for falling off the face of the earth.

I know I have disappeared from the lives of many of you.  The busy life of my own has grabbed hold and pulled me into a whirl wind of solitude- just me and my boys.  Oh, and the continued company of a variety of therapists for Roa.

Excuses, Excuses.  I know.

But, once the boys are down for the night or when I get a few minutes while they nap at the same time, the last thing I want to do is chat.  About ANYTHING.

Still, my friends, I have done you wrong by not returning calls or getting in touch via the wonderful technologies of today- email, facebook, text.

Don't forget that I still need you.  That each day is still a lesson in grief.  That I wrestle with the joys of a typically developing baby boy vs. the sadness of a growing toddler who is frustrated with his life locked inside a body that doesn't cooperate.

The green-eyed monster has also joined our dwelling. Roa, sick this week with the flu,  hates when Mom or Dad spend time with Gunnar.

 ME! ME!  His cries tell me, although he can't tell him this in words, which is both our frustration.
 As I balance the act between nursing my baby and nursing the King back to health,

Screaming, crying from both boys.  Me- Screaming inside.
But smile, coo, and soothe on the outside, as a good mother should.

A good mother who misses her friends and time without the crying, screaming, begging for every part of me.

Isn't that what EVERYONE wants in life?  Strives to be... A good mother?  Once you are a mother, you are one for a lifetime.
 Be a good one.  It is what God made you a mother for.

So put those friends on hold,...sorry friends. And pray that they will be there some day when life allows.  ((Mute "Roa's Songs" and listen...))

Tuesday, February 8, 2011

The view from here

So as I was nursing Gunnar this early morning, I had a thought. (I many times do my best thinking and "mind blogging" in the wee hours of motherhood fun.)  My thought was based on a memory I had from childhood.
 I was 5 years old and at my friend, Stevie's birthday party.  I was the only girl.  Being 5, we were finally in the age of knowing that boys were different from girls.  Well, the party was fine until all the little boys climbed up the ladder into Stevie's tree house.  It was a great tree house- roomy, sturdy, way up high in the tall tree... what every kid would dream of. As the last boy climbed, I preceeded to have my turn up the ladder when the Birthday boy called down, "No girls allowed!"
Denied!  Oh, how I cried! 
Stevie's mom scolded the boys and demanded that they allow me to join the the treehouse fun, but by that point I was crying and embarrased for being a girl.  I spent the rest of the party in the kitchen with Stevie's mom- on the ground, away from the slendorous view from that grand treehouse.  Away from my friends.  Why?  Because of my difference.

As I sat nursing Gunnar,  I thought about that darn treehouse and my Rojo.  Will he ever get to climb a ladder to be in a treehouse?  Will his peers notice his differences and not even allow him to join in?  Will he spend his life the safety of the grown ups presence, away from kids his own age?

Bryan and I do all that we can to make Roa apart of the action around him.  At the mall play area, we work up a sweat, crawling through tunnels and tiny kid spaces with Roa in tow so he can belong.  At the Teddy Bear park, we lift his gait trainer onto the taller platforms when we notice Roa's longing gaze towards the "big kids" and their triumphant climb to the top.  When another child wants to toss Roa a ball, we are his arms, with our hand over hand guidance throw the interactive play.

But, Bryan and I won't always be there to make sure Roa is allowed.  That scares me most of all.  Him, sitting alone, longing to be a part of the treehouse gang.

I moved on with my life after the treehouse denial.  I spoke up for my differences, my gender, in games and play thereafter.   I know we just need to prepare Roa to do the same.  
Ahhh, acceptance.  If only it would come easy for the kids like Roa that already go through so many battles.

Thursday, February 3, 2011

These are the people in my neighborhood

I don't think I have mention before to you all how wonderful our neighorhood is.  Roa feels like a Rockstar on our little street.  When the weather is nice and we head out for hour gait trainer walk, we are always greeted by friendly faces and people who stop to talk. We always know we have people to count on.
Judy and Jolly and Renae and Paul let us use their swimming pools in the summer months for Roa's water time.  Russ, Steve, and Scott have snowblown and mowed to help us out.  Sabria and Tim gave the boys Christmas gifts!  Shelley, Judy, and Lori baked for us after the birth of Gunnar.  Many gave us baby gifts.  Don and Nancy help us with our two dogs.    Russ and Kelly have helped us look for our runaway Molly dog!  They also have Roa a special Halloween giftbag, just for him while trick or treating.
Lately, Lori has come over a few times a week to watch Gunnar while Roa, Bryan and I head out into the snow to walk our Max and Molly.  Being able to get out and exercise as a family has been great!
We are truly blessed.  Roa has guardian angels all up and down our little street!

Wednesday, February 2, 2011

Little Earthquakes

Roa was eating snack yesterday and we were diligently working on holding his straw cup and doing some self-feeding. Brilliant Daddy came up with the idea of a mitt of sorts, with velcro that Roa could wear to help keep the cup in his hand.  Laurie, the inventive OT, took the idea and cut a sock to fit Roa's hand.  With velcro on his cup and the mitt- Roa can hold his own cup and drink!  Amazing how liberating that is! For him and for us! Doing things on his own makes Roa so proud.   Hooray! 
I know,... I will attach a picture soon!

The other awesome event was when Roa noticed some food smudged on the back of his right hand and REACHED OVER WITH HIS LEFT HAND TO WIPE IT OFF!  Wow! Teeny, tiny work for some, but a HUGE feat for King Roa! 
I just about jumped out of my chair!

Do you hear it?  Things are clicking?  Little earthquakes that change our lives and make us believers in Hope!

Thursday, January 27, 2011

No rest for the wicked

So, it is Thursday.  What a long week this has been.  Ever had weeks like that?  Weeks that feel like a Monday all...week...long.  Roa did not have much for therapies this week.  No ECFE class due to teacher inservice.  No Conductive Ed. due to lack of transportation.  We rescheduled his speech evaluation due to his poor night of sleep as he battle some congestion. (Thank God for Vicks Baby Rub)

So it has been officially Momma- Head Therapist in the house!  Gunnar and Roa also have it down that while one sleeps the other is ready to roll.  Luckily, I catch times like this when they both are napping to grab lunch and "chat" with you! :)

Tomorrow is the big day, Roa's meeting with all the therapists and school staff to discuss goals and plan for his transition into preschool. 
On Monday evening we visited with St. Judes of the Lake preschool and had such a positive experience.  The director, Janet, is so nice and welcoming.  She is excited for Roa to attend the school and will help acaccommodate for his needs.  Roa would have 17 other classmates with two teachers.  We will probably pursue a personal care assistant for Roa during school as well.  Roa could attend the program 2-3 mornings per week which would work great so that we could continue with Conductive Ed, swimming, craniosacral, private speech, and PT at Courage on his off days OR he could go to the Early Childhood Special Needs classroom.
Bryan and I were soooo very grateful that the St. Jude's staff welcomed Roa without hesitation.  We were expecting this to be another obstacle to climb.  Now we just have to figure things out with the school district.

Another positive of the week is that I have been in touch with the staff of Quadriciser (remember the piece of therapy equipment I posted a video of?) and they will be sending us a packet of information.  They even offered to pay for our hotel and give tickets to area attractions if we would come and try it out in Knoxville!  Not sure if that road trip is in our plans, but it is nice to be so welcomed!

Lastly, I have had some email chat time with author and speech therapist, Diane Bahr about Roa's communication development.  She was so helpful, supportive and quick to respond to my questions!  She even sent me a chapter from her book, Nobody Ever Told Me (or my Mother) That!: Everything from Bottles and Breathing to Healthy Speech Development,  to help guide me in Roa's speech development including oral motor ideas.

Check it out at:  http://www.amazon.com/gp/product/1935567209/ref=ord_cart_shr?ie=UTF8&m=ATVPDKIKX0DER

Gotta run, no time to rest....  Little man calls!

Mom and Me

Mom and Me

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