Roa Jo's Journey

For Lucas

2012-02-29T10:32:00.001-06:00

"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.

Faith

2012-02-13T22:10:00.000-06:00

Do you hear that?

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

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

HUGE!

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

School days

2012-01-19T10:19:00.002-06:00

Loving every minute of it!

Holiday Hannah

2012-01-13T11:12:00.000-06:00

"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.

Happy New Year

2012-01-01T13:57:00.000-06:00

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!
~Jennifer

Merry Christmas

2011-12-24T21:38:00.001-06:00

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.

I believe there are angels among us...

2011-12-11T22:49:00.000-06:00

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!

The chair

2011-12-06T21:57:00.000-06:00

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.

You Got A Friend in Me!

2011-12-01T13:07:00.001-06:00

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.

When I get all steamed up, then I shout!

2011-11-17T11:30:00.000-06:00

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....

Update

2011-11-03T22:14:00.000-05:00

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!

Latest Photos of Rojo

2011-10-31T09:51:00.000-05:00

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!

2011-10-31T09:46:00.000-05:00

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!

The Eyes Have It

2011-10-19T09:33:00.000-05:00

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.

Closing the Gap

2011-10-17T11:20:00.000-05:00

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

2011-10-03T13:51:00.000-05:00

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

School Days, Bus Wheels, and Voice

2011-10-03T13:32:00.000-05:00

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!

Pass the Remote

2011-09-14T09:27:00.000-05:00

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.

Sleep study

2011-09-12T12:49:00.000-05:00

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!

2011-09-12T12:43:00.000-05:00

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!

Backyard fun

2011-08-31T11:40:00.000-05:00

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!

Updates- play, move and say

2011-08-22T11:45:00.000-05:00

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.

Conductive Walk

2011-08-10T11:24:00.000-05:00

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.

Swallow study wrap up

2011-08-03T11:52:00.001-05:00

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!

The Land of Chewandswallow

2011-08-01T19:31:00.000-05:00

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

Confessions

2011-07-20T14:42:00.000-05:00

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.

The list

2011-06-28T11:33:00.000-05:00

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.

Birthday Boy

2011-06-27T11:24:00.000-05:00

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.

Botox complete

2011-06-18T14:20:00.000-05:00

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.

Just Me and My Dad

2011-06-17T16:26:00.000-05:00

HAPPY FATHER'S
DAY!

A letter Teacher and Therapist

2011-06-15T10:16:00.000-05:00

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

2011-06-15T09:40:00.000-05:00

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

2011-06-15T09:33:00.000-05:00

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!

Happy Friday!

2011-05-27T14:21:00.000-05:00

Shaving cream painting the wall in his upright stander.

Why the hat, you ask?

Silly question! ;)

The funny thing about kids

2011-05-26T13:49:00.000-05:00

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.

Medium

2011-05-16T14:19:00.000-05:00

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.

Spring has sprung!

2011-05-06T13:22:00.000-05:00

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!

Bunnypalooza

2011-05-02T12:03:00.000-05:00

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!

http://alaflutter.com/

Dear Blog

2011-05-02T11:54:00.000-05:00

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

Spring has Sprung

2011-04-25T16:15:00.000-05:00

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/

Gillette visit

2011-04-05T13:21:00.000-05:00

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

2011-04-05T13:09:00.000-05:00

http://theratogs.com/

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

The hills are alive...and giggling!

2011-04-02T10:48:00.001-05:00

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!

A Tale of Two Children

2011-03-28T16:01:00.001-05:00

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.

Give an inch, Take a mile

2011-03-16T11:59:00.000-05:00

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.

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

2011-03-09T11:32:00.000-06:00

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!

Brotherly Love

2011-02-16T11:55:00.000-06:00

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

Good Mother

2011-02-16T11:37:00.001-06:00

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...))

The view from here

2011-02-08T12:43:00.000-06:00

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.

These are the people in my neighborhood

2011-02-03T11:32:00.000-06:00

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!

Little Earthquakes

2011-02-02T11:24:00.000-06:00

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!

Happy Friday!!

2011-01-28T13:52:00.000-06:00

No rest for the wicked

2011-01-27T12:17:00.000-06:00

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!

I am Only One

2011-01-24T13:10:00.000-06:00

I guess my title says it all.

I'm feeling a bit overwhelmed today. So much to do and plan for Roa. So many goals and activities to work on. So many things he can do now that he couldn't before, yet SO VERY MANY things to work towards.
This week is a busy one. Besides our regular therapy routine, we have a our speech evaluation at Functional Kids Therapy Center tomorrow and, to end the week, Roa's team meeting to talk about his transition into school.

I can't believe it, but Roa will be heading to preschool in the fall! We are now in the deciding stage of where we will be sending Roa. Before we knew Roa had delays, we planned on sending him to St. Jude of the Lake, our church's school. Now that we have therapists...goals...equipment.... we are not sure we can make that dream happen. I chatted with one of the staff members of St. Jude's and she said that they are not completely handicap accessable. She also didn't know how much one on one support Roa could get. Tonight is St. Jude's Open House and we will be attending to discuss with them the possibilities.

Laurie, Roa's OT is so great! Today, she eased my mind a bit and said there is no reason why we couldn't do a combination of Special Needs preschool and St. Jude's. We all just want what is best for Roa. We will make it work.

Laurie has been focusing her sessions with Roa on firming up his communication of his knowledge of things. Roa knows so much, but communicating what he knows is difficult given his motor control and speech limitations. Soon, Roa will be tested for school to determine goals and areas of need. I feel, at times, that we have focused so much on motor control, that Roa has had too much "free play" and not enough time following commands.
Like any parent, I want Roa to prove to be on top of his game and cognitively "ready". Like any teacher, I have been exposing Roa to colors, letters, numbers since birth. I have used sign language, pictures, and gestures to help him communicate. I have read hims books daily and played matching games. We have painted, cut, colored, and glued.

Like any parent, I tried to focus on the fun of these activities.
Like any teacher, I focused on skill development during these activities.
Like any parent of "Special Needs" I feel the pressure to Hurry, Hurry, Do More, Improve and Grow, be on top of it all....

(SIGH) I just want to enjoy Roa's childhood without such planning, striving, researching, teaming, organizing,.....

I read this quote today on a Speech Therapy site. It really says it all and is my new Mantra:
“I am only one, but I am one. I can't do everything, but I can do something. The something I ought to do, I can do. And by the grace of God, I will.”
~ Edward Everett Hale

Ineed, Ilove, Iuse-all-the-time, Ipad!!

2011-01-19T11:43:00.000-06:00

Roa ADORES his ipad! It has been a LIFESAVER for Mom! When Gunnar needs to nurse and Roa is in need of an activity, the ipad is there. In the stander, highchair, gait trainer, bumbo chair and tray..... the ipad is there.
During mealtimes for communication, there it is!
There are so many cute FREE or very cheap apps for Roa to use and he can actually play the games and control things ON HIS OWN!
Roa's Faves
Baby Rattle (Crazy laughing boy named Roa!)
ABC Song by Curous Puppy
Wheels on the Bus by Lil Gamer
Pocket Pond
I Hear Ewe
BabyFirstHD
Peek-a-Boo
Humpty Dumpty by Rhymes for Tots (Mom and Dad love the music!)

Someone like me

2011-01-17T13:25:00.001-06:00

Last night while eating his bedtime snack (Daddy's homemade cinnamon apple ice cream, I must add), Roa was watching ABC's Extreme Home Makeover. Did anyone catch it? Well, the cute little guy, named Zoe, got a new Pacer Gait Trainer from the makeover team at the end of the show.

You should have seen the look of surprise and joy that spread across Rojo's face as he watched that other little guy moving in a GT!! Wow, someone like me!
Roa actually let out a yell of protest when the gait trainer left the program.

Both Bryan and I teared up while watching Roa's joy at the gait trainer's moment in the spotlight. How different his little life is going to be. How different he will feel about how he moves around.
How limited the exposure to special needs in our society. Why is that?
With over 12 % of children in our population of the United States diagnosed with a disability, why don't we see more in the mainstream media?

We will do our best to show Roa that he isn't alone. Through You tube clips, community outings for special needs, books, etc., we will show him many differences in how people develop.
But to the majority of parents do that for their kids? Parents of kids without special needs? One can only hope.

However, judging by the looks of confusion we get as Roa moves through the mall in his "Blue Lightening" GT- I don't think many kids learn to expect OR accept differences in others.

Let's make that change.

Welcome to the Club

2011-01-15T22:21:00.000-06:00

Another blogger mom of a special needs child, Marie Claire who writes for her son Ryan on "Peaks and Valleys" posted this and I had to pass it on. This is a letter from a mother of a child on the autism spectrum to another mother.

It is so moving and says it all. Please take the time to read.

http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

If tears were dollar bills.... we'd be rich.

2011-01-15T22:05:00.000-06:00

Yes, the botox is in full affect. Roa is a limp noodle in his gait trainer and angry as a bear! We are all so frustrated with how he is moving in it around the house during our LONG cabin-fever days indoors that I've been driven to tears as well. Today, we took a much needed break from the gait trainer and Roa and Daddy took a trip to Courage for a little pool therapy. I enjoyed a small vacation from King Roa.... he enjoyed Daddy time at his favorite place!

We know that with the bad of the botox, comes the good. In a week or two, Roa will figure out how to control those muscles and once again be walking confidently in his trainer.... until then we will do alot of blanket time- rolling, stretching, tummy time, etc.

Gunnar enjoys this blanket time with his big brother. He is getting big and smiley! Two months old now. Such a calm and easy baby! What a switch from our first born.

In the next week or so, Roa will be evaluated for speech therapy at Functional Kids Center in Maplewood. We are excited to start speech therapy with Julie who will be implementing oral motor strategies to help with Roa's sound production. We are hearing more vocalizations lately, although the majority of expressions are screaming, yelling and crying.....
Oh the botox,... a blessing and a curse!

Gotta find it!

2011-01-08T09:15:00.000-06:00

So, while doing my weekly therapy, methods, equipment search online, I ran across this:
http://www.exceptionalfamilytv.com/video/quadriciser

Now, I am on a mission to find one of these machines near us! If you think you can help me find it, please join the search!

Always, searching.....

Also, check out Exceptional Family TV website! It is such a neat site for families of kids with needs- many resources, topics of discussion.

New year, new start

2011-01-05T17:40:00.000-06:00

Happy New Year to all. Hope you are off to a positive new start to the year!

Roa started off this new year with another round of botox on Monday. He had injections in his adductors, hamstrings, calves, and hip flexors. The latter two areas are new areas treated to see if it can improve his gait further with proper alignment and better stride. We haven't seen much change yet, but hopefully we will see things changing for the better in the next few days.

Roa got his new gait trainer- "Blue Lightening", we call it. He LOVES it! It is just like the old one, but a little bigger and blue, but it is heaven to Roa. We kick ourselves if we forget to bring it with no matter where it is we are going. He loves to walk in it AND he is getting very big to carry! 29lbs 33 1/2 inches at his doctor appointment!

Roa also got an ipad for Christmas! My great friend from college, Jen Mesko, a rockstar speech therapist from Milwaukee, brought her ipad over during the holidays and did some work with Roa and he took to it right away! It has been so wonderful using it for communicating at meal times. The Yes/No application and it's choice of two options is working well. Roa figured it out right away. He also loves playing a variety of games and preschool apps and it fills up time nicely when I am feeding little Gunnar! I can't believe how well it works for kiddos with limited motor control. Roa is so happy to find success with such a cool new toy! GOD BLESS APPLE!
I will post video of him in his gait trainer as well as with his ipad as soon as I can!

The Other Guy

2010-12-21T12:24:00.000-06:00

So, I am in love and feeling so conflicted.
Is it possible to have a heart THAT big? To adore two little angels THIS much?
I feel like I am cheating on my Roa when I stare in awe at my Gunnar's head control, when I watch his little body twist at the trunk, when his little feet kick up to his belly. He is so PERFECT! And happy... calm. So different.
Things seem to be going right on track for Gunnar T.

I have to say that I still have fears. That sick feeling in my tummy when he arches and spits up. That anxiety when he has his 7:00 "Witching hour" and is fussy without much reason and a challenge to soothe. The exhaustion of being up at 3:00am with a wide awake infant.
I remember all to well the HOURS of rocking and pacing with screaming, arching little Roa. The nights of absolutely NO sleep. The inability to soothe and console him which lead to feelings of doubt in my parenting skills. Crying and Crying.... all of us crying.

With Gunnar, it is just different. I can read his cries. I can soothe his tears. I needed this moment of motherhood.
I needed that feeling of peace when you hold your baby. I needed that sense of true mother/infant bonding that I was robbed of with Roa.
It wasn't that I didn't bond with Roa completely... just in a different way. It was like the way a mother lion protects her cub. It was with a nervous edge- to fix things, to try and understand, to heal him, to plead to others to give us time to figure him out and not judge our overprotection.

I feel just as I wrote... robbed of motherhood joys with Roa. Robbed of watching his accomplishments and the wonders of a growing child. HE was robbed of a comfortable babyhood. HE was robbed of peaceful, easy development.
It makes me so sad.

Yet, I feel such joy when dressing little Gunnar and he doesn't hold his arms and legs stiff and tights. I laugh with joy as he brings his little hands to his mouth and chews away..."Wow, look at that hands to midline skill!" AMAZING!
Last week, he rolled from his tummy to his back without arching, crying, refluxing. He is perfect.

I hope, I pray, I mourn, I celebrate. I am conflicted. I am so in love with two such different little angels.

Chatting about updates

2010-12-14T13:20:00.000-06:00

After my last post, Laurie, Roa's OT and Lynsey, Roa's speech therapist and I had a good long talk about how we will approach Roa's therapy time from here on. It was great to get things out in the open about Bryan and my worries and frustrations with Roa's progress in the area of communication. Lynsey was very receptive to my thoughts on therapy and we will be looking continuing with our twice a week session along with possibly adding some private speech therapy weekly. We also talked about all the therapists being more consistent with the routine and incorporate repetition of songs and basic sounds to increase Roa's interest and chances of imitation. We are so pleased with the Birth to 2 staffs willingness to hear us out and attempt to meet our needs. They are very family friendly.

One of the things that has come up with other speech therapists and parents of kids with communication needs is the current use of the Ipad for assistive tech! What an exciting avenue of language that this mainstream instrument can give to people with disabilities. Lynsey wants to start Roa's attempts with the Ipad in January. If things go well, Bryan and I will have to consider purchasing our own Ipad for Roa- not a cheap purchase, by anymeans, but more reasonably priced compared to some communication aids out there. We are optimistic about it!

In other therapy news, Roa's new gait trainer was supposed to be here last Friday, but Reliable Medical mixed up the order and we are once again... waiting. Roa still continues to use the school miniPacer, but we are excited to try the next size up and have Roa's very own GT! Hopefully, soon.... nothing ever goes smoothly, I must say...

January 3, Roa is scheduled for his next round of Botox. We are seeing alot of tightening of his adductors with attempts at sitting. He also has increased tightness of his hands while grasping. We are happy botox is on it's way.

Now, off to research funding sources for an Ipad while my boys nap!.....

Happiness is... a baby brother

2010-12-07T18:57:00.000-06:00

Ok, so Roa hasn't completely been laughing and joyous over little Gunnar's arrival. Honestly, we are getting a little two year old tantrum time and alot of tears over minor things, but that is to be expected.

We are definitely entering the communication frustration stage in Roa's life. He is not yet talking. Not yet even giving us a 'yes or no" verbally or gesturally. We are ALL frustrated and tired of the cry for no and giggle for yes... the scream if we don't understand what King Roa desires.

Roa receives speech/language therapy twice a month through the school district. However, we haven't seen much progress with the therapy. I am an "old school" Early Childhood teacher and feel that motor-based delays should be supported with an oral motor approach along with drill and practice with beginning sounds. The philosophy of today's speech therapy seems to be language-based "give them words, talk to them, and ..wait"

I am not a patient waiter, I guess.

I am frustrated that Roa can identify shapes, animals, objects, colors, even a few numbers. He can follow simple directions and comprehends so much! Yet expressively, he just laughs, cries, screams, and gives us a few occasional sounds and attempts at words.

We've tried the assistive tech. switches and communication board. We tried the picture approach. He's not interested.

Speech therapists and parent of "speech" kids, PLEASE respond and help me sort through my frustation!

Big Brother Roa

2010-11-19T15:56:00.000-06:00

Gunnar Thomas Thayer was born on Saturday, November 13, 2010. Roa Jo is a proud big brother!

Halloween Fun!

2010-11-05T18:01:00.001-05:00

Picking out my pumpkin.

Time for carving! I love the guts!

So excited about those candles!

Waiting to trick or treat with my buddy, Tad....

Little Gorilla with his Big Bananas- Daddy and Grandpa Al. Off to trick or treat!

Digging through my loot!

The world viewed from my back

2010-11-04T14:20:00.001-05:00

I was lying on the floor today with Roa. Looking at the world as he does- lying on his back. I encourage you to give it a try.

I looked out the window at the trees without their leaves, blowing in the wind. I looked at the legs of the couch and ottoman, noticing stray toys and dust bunnies underneath. I see the sleeping Molly dog, lying next to me. I see the shadows moving on the wall and the ceiling.
I thought that my position on the floor was relaxing for a bit. But, I would tire of it day after day. Tire of viewing people walking at me sideways, tire of watching the TV sideways as well.
Roa still doesn't roll over. Still needs us to help him up to standing and walk with him. Still needs help getting into a sitting position and remain that way through propping with pillows and blankets.
Looking at Roa's 2 year view of the world on his back today, really made me think about how he deserves to fuss and yell when we leave him lying to attend to some task in the house. If he complains when I leave to go to the bathroom or change the laundry load, I need to think in his shoes.
I too would scream if I was forced to lay on my back watching the world go by when all I want to do is get up, chase my dogs, run around the tree in the wind, and LIVE a life standing up.

Sandman comes... and goes

2010-11-01T20:48:00.000-05:00

Yep. We are still struggling with sleep around the Thayer house. We continue to guess as to why Roa wakes up fussy and crying in the night for hours at a time. We continue to say, " maybe it's molars coming in...." maybe it's the new backpack carrier we are using for our nightly walk (he loves it!).... maybe the new sleep med, Doxepin, is giving him a tummyache as we increase the dose...are his muscles tight any where... did he nap too long today....
We have consulted with Dr Garcia, Sleep God. We have played around with the dosing. We wake. We struggle. We cry. We carry on... tired but not defeated. We will figure it out!

Roa continues, however to be his delightful self in the daytime hours. Gait trainer champ, kicking the ball down the street each day.
He has taken to making marks on paper with markers and does such nice job holding the marker!
This weekend, I began working diligently to help Roa to not only get food in his little hands, but to then make it enter the mouth!! He is getting better at it- fighting through the primitive reflex to turn his head away from his hand.

Baby steps, Baby steps.....

Update after a break from the blog

2010-10-12T13:47:00.000-05:00

Hello Fans of Roa! I've had a couple friends and family ask "what's happening with Roa, why aren't you blogging?"    So here we go.... The Roa/ Thayer Family update:

I am almost 34 weeks along now in my pregnancy and have been blessed with a fairly easy time of it these last few months. Thank you, Lord! Roa is pretty accepting that Momma isn't as physically able to carry and move him around as much as I used to. We do alot of floor play and play at his floor table, stander, or high chair. I catch a nap when he naps, thus my computer time is pretty limited to email catch up. But, I will try to do a weekly update.

With the gorgeous fall that we are having, we get out twice a day to walk the street in the gait trainer. Roa is doing so well moving in his trainer! It has been such a nice activity for us to walk up and down the street, greet the neighbors, kick his ball, and kick through the autumn leaves! 2 hours of our day is spent on our walk. Roa is really building up nice endurance and goes such a distance! Now we have to teach him how to move with more independence and steer himself.

With winter creeping up on us, we are looking into gait trainer options as his current Pacer, borrowed from the school district, does not move through snow (or wet leaves, we've discovered). We are hoping Rifton Co. will help us find a nice solution for continuing our outdoor walking throughout the Minnesota winter!
Besides contacting Rifton, we are also in connection with the LiteGait Co. to see about renting a LiteGait system to continue Roa's treadmill training at home. Roa continues to do the training on the treadmill at Courage and is doing so great! Check out LiteGait on Facebook and see our boy's video! I was very pleased to find out via a LiteGait rep. that we wouldn't have to purchase the expensive piece of therapy equipment outright, but could look at renting. Things are falling into place!

Roa has botox injections on September 3rd and things went very well! Dr. Gormely choose to do a smaller amount in the hamstrings, larger amount in the adductors, and a bit in Roa's thumbs. Roa is reacting well to the botox amounts and is grasping objects with more confidence as well as sitting for a few minutes with independence. Nice changes.

On a negative note, Roa continues to battle with sleep causing many rough nights for the Thayer clan. We finally broke down and revisited the Gillette sleep specialist, Dr. Garcia, last week. Upon our discussion with him, he shared with us that he thinks that Roa's sleep issues are biological in nature rather than behavioral or muscular. He thinks we have established a great bedtime routine and are consistent with the schedule (pat, pat on our backs!) and that Roa's brain is not letting him shut down to allow cycled sleep patterns.
Thus, we are trying a sleep medication, Doxepin, in a small dose. It is not a long lasting drug, so shouldn't affect his daily life or make him drowsy. It has very limited side effects.  We were very thankful that we didn't have to go with the harsher drug choice of Valium or Baclofen.
Roa is on 4 nights with the medication.  He takes it like a champ at bedtime with his snack and has been sleeping until about 3:30ish when he then needs only a position adjust or diaper change. He then wakes at his usual time of 5:30/6:00ish, BUT has been going back down the last few days to wake for the day between 7 and 8:00!!!! HEAVEN!!
We pray that this positive effect continues and Roa will make some nice gains developmentally with the additional sleep.... And.., make life a bit easier for the creaky ol bodies of Ma and Pa Thayer!

We have begun our school year session of Early Childhood Family Education class. This year, we are attending the Tuesday evening session so that Bryan can be a part of things and can take Roa after I have the baby. Roa LOVES school this year!! Running around the playground in his gait trainer, kicking balls at gym time, fingerpainting like a madman! He squeals and giggles during the group songs and activities and listens so quietly at story time.   Daddy and I are so very proud of our boy!
Roa is the youngest one in the group of about 10. There is one other child with special needs in the group this year, a 4 year old little girl with a hearing impairment. It is really nice to see. The teacher, Janet, is very nice and tries to include Roa in everything given his physical differences.   ECFE is such a wonderful program! We are impressed.

Roa continues to have weekly home-based Occupational therapy. He has speech therapy twice a month, Physical therapy, twice homebased/month, weekly at Courage and also has EI teacher services once per month. We have taken a break from ABM for the fall but continue with Craniosacral once per month. Dr. John and his chiropractic magic is apart of Roa's routine 3 times a month and also has helped with sleep.
We continue to travel weekly to Burnsville for Conductive Education with Ors and wish we could do more! Tomorrow, Laurie and Lynsey, Roa's OT and Sp/L therapists, are joining us to check out the amazing results of CE! I am excited to have them see all the things that Roa does with independence while working with Ors!

Gotta run, nap time is over for King Roa and he beckens! Nice to be "in touch" with my blogger family again!

Journey Into a New Stage

2010-09-14T12:50:00.000-05:00

On Saturday, the Thayer family attended our church fall festival. It was a beautiful day and the event was hopping with families and activities. So many kids were running around with balloons, painted faces, and corn on the cob. Heaven to Roa!

We didn't bring Roa's gait trainer, as we didn't know what to expect for the festival layout. That was a mistake! As I said, kids were running everywhere and dancing to the band.... our Roa was NOT happy to be in his stroller, apart from things.

I have to say, this was possibly the most heart-wrenching moment of my life, aside from Roa's day of official diagnosis. As we sat at the picnic table with Roa in his stroller, I felt utterly beaten. Roa was laughing as two children chased each other around with a big blow-up bat. He arched in his stroller and looked at me longingly with eyes that said, "Come on, Mom! Let me GO!" Such joy in watching those other kids. Such frustation in being trapped in a body that doesn't cooperate.

I cried. Literally, broke down in front of the entire parish picnic and sobbed.

Bryan was great. "It's okay. Cry!", he said. "It is NOT fair!" My strong husband supported me while attempting to entertain our irriated son. He got Roa out of the stroller and helped him walk over to the children and the band stage and Roa was then, happy.

I sat there, with all the joyous family interactions around me, in pain. But, what a perfect place to pray and curse. Why God? Why my son? Will he know freedom of movement? Will he know friendship? Will he resent us when he can't join a group of kids at play? Will he be cursed with the ability to mentally process the fact that he is so very different? Does he already know that he can't do so many things that other kids can?

Bryan and I realize that we have hit a new stage in Rojo's journey. He is no longer the baby who stays home with Momma and is visited by "playmates" in the form of therapists. He isn't the wide-eyed observer in a playgroup setting, happy to just watch other kids at play.
He is now a little boy. Ready to run, laugh, and chase. He wants to be a part of activities going on around him and can't without help from us. Will he understand that we do all we can to include him? But yet, will WE do all we can to make him involved while being able to hold in the tears, fight the pain in our hearts that make us question EVERY DAY.... Why my son?

Babble

2010-09-08T12:50:00.001-05:00

Roa is doing alot more exploring of his mouth and sounds. We are so hopeful that it will lead to full blown speech in the years to come. This video shows just a glimpse of the sounds we are hearing. Roa, of course, doesn't perform so well for the camera! ;)

Mealtimes and toothbrushing times are when we hear the most. We tease him by saying, "Gross, are you spitting out your food?!" Which usually leads to giggles and more "talking". We are trying to take advantage of these times to really "wake up" that mouth.

Choices

2010-08-20T12:00:00.000-05:00

I probably shouldn't be blogging today. I'm having one of those days were the negative thoughts are outweighing the positive. Beware as you read. If you chose to judge me for my message, that is your choice.

Yesterday, I had the glucose testing doctor's appointment where you drink the sugary drink and wait an hour. Bloodwork was done along with a doctor visit and all is well.
Trouble in my mind occurred during the hour wait time.

I love to read and was actually looking forward to this hour of just simply sitting and reading. I brought with me my Parents magazine, my latest novel for fun, and my Teaching Motor Skills to Children with Cerebral Palsy and Other Movement Disorders book. Being in the "let me learn" mode, I chose the therapy reading.

I have had this book for months and reference to it for ideas and facts about CP, but this day, I started from the beginning and read all the chapters that apply to where Roa is right now. It was hard reading. Scary thinking of the "your child may NOT"... phrases that occur. Scary to see the pictures of babies working on skills that Roa has a difficult time mastering such as complete head control, remaining on his tummy while at play and actually using his arms and hands while being on his tummy, finally working through that ATNR reflexive pattern that stops him from bring his hands to midline together to play.
This book is great and very informative,...don't get me wrong. But, along with reading it comes the internal drive to FIX these defects in my boy. The drive to follow through with all the listed exercises in the book to strengthen muscles and inhibit negative reflexes.
So this morning, I did my best to go through the "work out". I may have limited abilities myself to bend at the waist and lift and turn with my pregnant belly, but as God as my witness,... Roa was going to complete the routine (at least two times a day, the book suggests)!!
Problem is, my Roa doesn't smile and giggle through the "Happy Baby" exercises like the toddlers pictured in the book. Roa yells, complains, and fusses. He arches and tightens and resists. Two exercises into the routine and we both were sweaty, mad and in tears.

That has been life with King Roa since day one. Cute, smiley and babbling away when left to lay on his back and kick at the ground and swing his beads or grab at a balloon string. Of course, with the unfaltering attention of the caregiver at hand. Happy to be positioned in to his "comfort zone" positions and be entertained by you, but the minute we turn to "work",... it gets down right ugly. And as his mommy, I break down and stop the work.
I don't want to be that person. I don't want to have my baby boy cry and look at me with those sad eyes and pouty lip. It breaks my heart to have him cry and fuss with the therapists, but at least he can come back to Mom for comfort. I don't want to be the "bad guy". Call me a whimpy parent. Call me soft. But if you have never had to deal exercises for your baby, workouts that you MUST perform according to doctors and therapists, while your child fusses, struggles and cries,... can you really judge?

Lite Gait training for Rojo

2010-08-14T11:54:00.000-05:00

We attempted a new therapy technique at Courage Center with Roa that gives us great hope for proper training of Roa's gait for independent walking. Roa is young for this kind of technique, but handled it like a champ yesterday with Andrea! We were VERY happy and excited.
Check out this video attached.

http://www.youtube.com/watch?v=wqG2iPePy28&feature=related

Roa's photo session

2010-08-12T15:28:00.000-05:00

Check out Roa on Amber's blog:

http://alaflutter.blogspot.com/

Conductive Education Family

2010-08-10T12:27:00.000-05:00

On Saturday, we had a fund raising family gathering for Roa's conductive education at the Plus Center. Since Roa has one on one sessions with Ors and his Auntie Ellen drives him to the sessions now, I have never had the pleasure of meeting the other CE families. Boy, was it a joy to finally get a chance to chat and compare notes with others!
Roa is one of the youngest children attending the center, so I got a chance to hear the stories of other children older than Roa. Each parent I chatted with had nothing but great things to say of Ors and his Conductive Education program. Some of the children have been coming to CE for 10-12 years! Peter, age 5, first walked on his own at the center when he was 4 and has walked on his own ever since. His mother said they owe it to conductive ed!
It was a wonderful experience for the Thayers. It made us feel part of a group, part of a family of hopeful parents. It gave us promise of bright things to come. We really needed that! Now, we ponder how we will get Roa to attend more sessions of conductive ed. It is a distance and with the new baby on the way...but "where there is a will, there is a way".

Rate Your Fears and Dreams... on a Scale of 1-5.

2010-08-04T11:53:00.000-05:00

I opened Doctor Gormley's follow-up report from Roa's last visit to Gillette...it was a bit hard to read.

Overall, a good report that states some very positive things about our boys progress, describing Roa as alert, pleasant, and cooperative. It speaks of his achievement with his gait trainer and frustrations with floor play and movement limations.

The report is similar to ones in the past, however, this time the doctor used the dreaded Gross Motor Functional Classification System. This rating scale is used by doctors and therapists to give a general projection of future motor skill development of kids with cerebral palsy including independent movement and adaptations with assistive tech. It is a scale of 1 to 5. 1 being the least severe impairment. 5 being high limitations on independent mobility.
I've known of this scale and have been happy that we haven't yet had to face an actual rating for Roa from anyone based upon it. I don't want that kind of crystal ball prediction. I don't want that kind pressure for the future of doctoring and therapies.
Well, this report gave us the number. The grade. The dreaded digit. Roa is a GMFCS IV. Not the most severe, but the next step to it. My heart skips a beat and my eyes well as I type it.

Really? My bright, giggly toddler who cruises down our street in his gait trainer with happy confidence? My little jokester who has taken to spitting out his food, sticking out his tongue, and laughing at our reaction? A level 4?

At level 4, this scale predicts some independent floor movement in the form of rolling or various degrees of crawling between the ages of 2 and 4. It predicts assisted sitting into 6 to 10 years of age. It predicts the use of a power chair for mobility throughout the age ranges, with some use of a walker for shorter distances and flat ground somewhere around 6 to 10 years.

The scale guidelines warn parents that the predictions are general as development is different for every child. Each child makes different accomplishments at various ages dependent on abilities and therapuetic support. For example, Roa shouldn't be moving in a gait trainer at his age according to the scale.

However, it is still there. Haunting my every thought. Bringing tears of fear to my eyes as I ponder, What's next? What else can I do from my precious boy who wants to get up and go so bad?

This simple number given to us, makes me flash back to that fateful day, when I was pregnant with Roa and trapped in that mangled car. It was the scariest, most life altering day of my life. I can't believe how it has altered his life as well. It was truly a miracle that we both survived and I feel blessed to be alive each day. But, why does my boy have to pay for my pregnancy difficulties? Why is he simply put on a Scale from 1-5 that now is a constant reminder of my worst nightmare re-lived?

The Tingle to Teach...

2010-07-27T11:50:00.000-05:00

Yesterday, Roa and I had a nice visit from his Aunt Chrissy and Cousins Jay, Jon, and Bret. It was great for Roa to get to hang out with these big boys and watch them in action! He was unbelievable quiet and wide eyed, taking it all in! Too cute!
Bret, the oldest of the group at 8 years, is great with Roa. He plays with him and talks with him. So nice. The boys brought their bikes and rode up and down our street with Roa giggling behind in his gait trainer.
He was exhausted when they left, but of course didn't nap- just vegged out to a little Winnie the Pooh.

It was nice for me to have a little time with Aunt Chrissy for some get to know you talk. We only get to see each other at holidays or special occasions with the whole clan, so it was nice to have some one on one chat time.

During their visit, I really got that ache to teach again. I had planned to do daycare in our home after resigning from my teaching job, but with all Roa's needs, it just never happened. I thought maybe I would start out this coming fall with a couple children around Roa's age, but now we are blessed with a baby on the way at Thanksgiving.
Yesterday, watching the boys play in my "classroom" in our basement. The ol teacher feeling came back. I know I teach my Roa everyday, but the biggest part of my job in Early Childhood Special Needs was to teach parents how to best meet the goals of their children. I also taught workshops on play and brain development to parents of typical toddlers in our community. Chatting with Chrissy and sharing homemade playdough recipes, locations of where to find cool learning toys, etc. made me want that connection with other parents again.
It honestly has been difficult at times, not jumping in with advice at family events, at church, our doctor's appointments, or while grocery shopping about parenting skills and child development. It has always been my passion since first babysitting at 12 years of age. Now that I am a mother, I feel I know even more and could really share!
But at the present time, I don't get paid to give my advice like during my 12 year teaching gig. Giving out advice freely is considered pushy, rude, and judgemental.
So, if you ever have a question on development, behavioral issues, feeding, literacy, communication skills, potty training, discipline....... I'm first in line with an ear and a helpful opinion! :)

And the Little One said, "ROLL OVER!"

2010-07-21T11:52:00.000-05:00

We have purchased a new computer and cannot wait for it to arrive! Such issues we have with speed and bugs- time for an updated model. Once that computer arrives, I PROMISE to post a few new pictures and videos of our Rojo! I also want to get back into my regular posting of Roa's day to day journey.

Roa is on the verge of rolling over to his tummy. Side to side he goes and almost makes it with the lower half of his body, but gets caught up with his darn arms. So frustrating for him and us. Neue, ABM practioner and Kim, Cranio, worked so hard at yesterday's session to decrease his frustration. We were ALL sweaty and over-worked by the end.
I can't even describe to you how much I ACHE to have Roa move with some independence on the floor. I love him so much and his constant struggle to gain control over his body is heartbreaking to a mother. I watch other children move and think about the ease of their movements versus the daily battle with sweat and tears that my Roa undergoes.
What we face in life only makes us stronger. I know..., however, I pray each day for even a minor victory on that blasted floor!!

The gait trainer is another story. He is running down our street each morning for our daily walk. Giddy he is as we move along talking about the birds, squirrels, flowers we see along the way. Today, our neighbor, Don, joined us for the last stretch and Roa acted so proud, walking along with Don! Our neighbors are so sweet and take such interest in Roa's development.

Roa had his 2 year doctor appointment and all was well. He hasn't gained much for weight, at 24 lbs now, he actually is down a pound since his last visit. Dr. Colwell is not concerned, however, due to his 2 inch height increase and his very active lifestyle! I get out of breath just thinking about all our "on the go" time!
Last week, Momma pushed it a bit too hard working with Roa with the increased size of my growing womb and my back went out. God bless Doctor John, our chiropractor! After a few days rest and a great adjustment, I was back at it. Bryan has given me strict orders to take it a bit more easy each day. Difficult for this over-achiever mom, but I am trying.

Someone to Watch Over Me

2010-07-15T20:01:00.000-05:00

When Roa was tiny and in the bassinet along our bed side, he used to look up and gaze with a smile on his little face at the crucifix hanging on our bedroom wall. Roa was a cranky baby, but during those moments, he looked so peaceful. Bryan said it freaked him out a bit. I, on the other hand, thought that maybe Jesus was speaking to our boy- helping him through his difficulty time with reflux and muscle cramps.

We've moved our bedroom around in preparation for the new baby's nursery and to make some room for the return of the bassinet. Maybe this new arrangement brought Roa's attention again to that cross for when lying on our bed with me today, once again, Roa gazed over at that cross and smiled knowingly. It warmed my heart.
Wouldn't it be great to know what he is thinking? Or hearing from our Lord?
Miracles can happen.... we are patiently waiting for Roa's.

Update on King Roa

2010-07-09T11:54:00.001-05:00

Computer issues.... it has been awhile since I wrote. I missed my blogging therapy!!

There is not a whole lot new in the world for Rojo. No miracles, no amazing milestones met. But, our boy keeps working hard at walking in that gait trainer and going through his therapy routine at home with Mama. We have had a short break in our therapy schedule due to the Birth to 2 staff summer vacations, and... I have to say it has been very nice. Less people to answer to, less people to clean my house for! ;)
We picked up a few more sessions at Courage Center with Andrea, PT and continue with our Conductive Ed and ABM/Craniosacral routine. Bryan even gets Roa in the HBOT chamber 2-3 times a week.

Little things are happening for Roa that we are happy about. 1) He is liking a "roll over" game that we started with him last weekend. Rolling over across the floor is much more exciting when Daddy, Elmo, and his puppy stuffed toy roll too!
2) He is moving and shaking in the gait trainer! He has taken a liking to walking down the driveway and out on to the street with Momma and continues for almost a block.... laughing and walking! So awesome.
3) He is babbling more and has said, "Kitty", "Mow"(mowing the lawn with Daddy, his favorite task). We think the HBOT really has alot to do with the increased vocalizations.
4) He is sleeping better!!!!!!!!! Still wakes once in the night, and gets up at the crack of dawn for the day around 5:00am, but overall seems more comfortable at night. Sad to say, we think it is the break from Birth to 2 therapy that has made this change. Time to chat with the Laurie and Mary...

Roa has a great 4th of July with Bryan's side of the family in Grand Rapids, MN. It was really nice to see him interacting with his active boy cousins and watch them play ball and run. He wanted to get right out there with them!! They did a nice job of including him and playing with him.
It also was great that Bryan's family got to see Roa in his true form. Giggly, on the go,.... typical 2 year old except for his motor delays. We got many comments on how happy he is and how his temperment has changed. It is hard for some people to get past the gait trainer, AFOs, etc and see that there is a little boy ready to play and explore in there! He just needs some help getting to the toys or moving from spot to sopt. This past weekend opened some eyes, we hope, maybe erased some negative preceptions of Cerebral Palsy and subsided some fears.

My belly is getting much bigger! 20 weeks now and life with Roa is getting a bit more difficult. Thank goodness he likes moving in the gait trainer so much! Momma can not bend over like I used to. We are currently shopping for a Big Boy Bed for Roa and want to start that transition well before Baby T2 arrives. We are also shopping around for a fish tank for the boy's bedside. We hope that might make the jump to a regular bed go a bit smoother. Our guy loves fish!

Party Thank You!

2010-06-29T20:37:00.000-05:00

Roa's party went well. Bryan and I, of course, felt like we were running with our heads cut off, but Roa seemed to enjoy the company of family, the birthday cupcake, and especially the pool time fun with loved ones!
I wanted to give a big thanks to the family that made the journey and took time from your busy summer schedules to partake in the festivities for Little Roa. It meant alot to the Thayer's to have support of family. THANK YOU!

Say CHEESE!

2010-06-23T11:21:00.000-05:00

The Thayer's had family photos taken on Saturday. Roa also got his individual 2 year shots. Picture time has never been fun with Rojo. We tried the cheap route, visiting Sears and JC Penney's but were not happy with the results. Actually, with JCP, I contacted the manager and complained.
Every appointment I make, I call ahead and let them know that Roa has CP. I explain that he doesn't sit on his own and will need positioning aids, a quick camera to catch him when he is able to hold a position independentlly for a minute, and an experienced photographer with alot of patience!
The last visit to JCP was when Roa was turning 1. The first red flag that this wasn't the dream session we would have liked was the fact that the photographer who checked us in said, "Oh, he has cerebral palsy." Can I look at him first?"
What was she expecting to see? A scary monster in our stroller?
When she came over and met Rojo, she said with surprise, "OH, he is Cute?!"
Again,...scary monster expectations??
The photographer taking the photos was nervous and very hurried. I think we got one good shot and he wasn't even smiling, just looking towards the camera.

I know it is not easy snapping shots of Roa. Trying to catch the moment while positioning and distracting is difficult. That terrible session made me research Special Needs Photography online. Guess what? No where to be found. What a great business venture THAT would be!!

Throwing it out there into the universe.......

Amber from A la Flutter photography is now our official family photographer and she is GREAT! So kind and patient, giving King Roa the time and attention he deserves. Check her work out at: http://alaflutter.blogspot.com/

What are you other Special parent's experiences with photographers? I'd love to hear!

Happy Father's Day!

2010-06-18T16:53:00.001-05:00

A Different Kind of Daddy

by J. Thayer

Some dads are only fathers.

A buddy on which to call,

To tie an occasional shoe

Or toss around a ball.

It takes a different kind of Daddy

To be a Dad to me.

You’re there for me in many ways,

Most dads could never be.

You help me see the world

In ways my body won’t allow.

To help me walk across the lawn,

You gladly take a bow.

You hold me up to touch a tree,

I help you cut the grass.

You gently position my little hands

As I drink from your big glass.

You always know to play peek-a-boo

While I’m waiting in my chair.

At bedtime you carefully arrange

My blanket and my bear.

What other dads take for granted,

You patiently wait to see.

You never push or expect too much

But always encourage me.

You’re a different kind of Daddy,

As you can clearly see.

You are my feet. You are my voice.

You mean the world to me!

Happy Father’s Day!

Birthday Wishes

2010-06-11T12:50:00.000-05:00

Roa's big birthday is coming up on June 24th. I can't believe our little guy will be two!! Actually, by the amount and temperature of his latest tantrums and meltdowns, I guess I can tell we are hitting that dreaded second year!

We are having a small family pool time at the Courage Center in honor of his special day. I am excited for our family to see where Roa spends part of his therapy time in a place he loves so much. We are hoping that maybe our families will feel a bit more comfortable with asking questions about cerebral palsy, therapies and Roa's life after taking a "step in our world" for a couple hours.

I am not a birthday party for tots kind of person. I think that parties at such a young age are only for the benefit of the parents and extended family and that kids usually just get overstimulated, cranky and off -schedule. When kids are older and have little friends, birthdays actual mean so much more to them.
So, Bryan and I thought this pool idea would go right with Roa's routine, only he will be swimming with familiar faces! :)

We have had a few people ask about present ideas for Roa. PLEASE, everyone, do not feel that you have to buy him anything. Many of you have donated to his Hyperbarics, Conductive Ed., and other therapies and equipment, and we appreciate your thoughtfulness. The gift of a monetary donation towards Roa's future progress is a HUGE gift that goes on giving for the Thayer's for years to come.

As the toy and book collector that I am, I have already bought a few presents for Roa's big day.
If you want to give him a small gift to unwrap, small pool or bath tub toys, fidgety toys like koosh balls, wind-up toys, etc are GREAT for therapy times! Roa also loves balls of ANY style size or kind. Toys that are entertaining and easy to activate- like remote control cars, etc are great as well.

Once again, thanks for all the support in the first two years of Rojos life. Remember that the gift of a friendly ear to hear about his progress, an interested voice asking questions about our life, or a visit with The King himself is the greatest gift you can give.

Craniosacral and ABM Team

2010-06-09T11:18:00.000-05:00

Roa had a therapy session yesterday that was pretty exciting!
I asked if Kim, Craniosacral, and Neue, Anat Baniel Method, could work together with Roa as I really feel that they could compliment each other. Yesterday was the first official combined therapy time and it went great!!
Roa was on the floor on his back and with some gentle guidance, rolled to his tummy and righted his arms independently to push up on his forearms. He did this WITHOUT complaint!! It was wonderful!

During the session he also bent his arms independently (usually they are straight out when attempting motor tasks) and he moved up onto his knees while on his tummy. All such little things, but to us THEY MEAN THE WORLD!
Roa had many "in the zone" moments while Kim and Neue worked. It was exciting to see the joy in his face and a sense of accomplishment.

That night, Roa was a sommersaulting maniac (I DEFINITELY have to get that on video and post for you to see) and he also was kicking at toys while sitting in his rocker... WITH purpose...and alot of laughter!

Some great brain connection were made yesterday. Let's hope this progress continues!

King Roa Demands

2010-06-08T11:06:00.000-05:00

Got a new stander to try out for the summer delivered today. It is a "Sit to Stand" and Roa has been in it a couple times while at school and doesn't seem to mind being in it. Standers are used with children diagnosed with CP to help them bear weight and work on hip alignment. It is not always a fun choice of activity, especially for a kid like Roa who likes to go go go! But, we battle through it.

Stander time was thought to give me some relief from "Roa entertaining". Put him in the stander and you can clean or cook while he plays, the therapists say. Yeah, Right! Not with our boy. King Roa is possibly the most impatient, demanding child ever! I can not leave the room without an outburst from the King. Stander time is "Momma, sit right beside me and juggle time".

People say, let him cry and he will learn. Tell him you will be right back. Give him something to entertain him while you are gone.
I have tried it all and then some..... King Roa still cries, yells and demands. It is just who he is. Drives me INSANE at times, but it is life with Roa.

So, we work diligently at helping him increase the control of his hands and work on positioning in standers, chairs and floor. We look for toys he can easily activiate that also cognitively challenge him. Roa's brightness is a curse at times. His brain know what it wants to do and learn and explore. His little body holds him back.

So, Momma keeps juggling to keep the King happy. Housework and even bathroom time sometimes has to wait when King Roa demands.

CP Dreamin'

2010-06-04T11:05:00.001-05:00

Once upon a time, there was a land, a beautiful land called Cerebral Palsy.

And in that great land, there was a place to take your child diagnosed with CP. A place where they would read the crystal ball and say, "Here are the therapies that will help, Here are the ones to skip."

"Want to give that bright little mind a chance to communicate on his own? We got the perfect oral motor activities to get him talking! Think he needs a communication board. Let us find the perfect one that doesn't take a lot of coordination to reach or strength to activate!"

This wonderful place also has a center where they actually WATCH your child move and play. They, then say, "Here is the walker we will build for him- custom-made to support him in areas he needs it but allows him to move in his own unique way."

The sleep specialists come to your house and actually attempt to help you through the wee hours of morning crying sessions. They devise a plan and help you implement the perfect mix of natural supplements, massage, and postioning aids.

The helpful staff at CP land also looks at your everyday, life needs and says, "Here is a bath seat to make bathing easier."
"Have trouble with a restaurant highchair? Here you go! Voila! A perfect insert!"
"Want to take the little guy grocery shopping, but have trouble managing him and the cart? Just put this gadget in the cart and he is fully supported!"

And the most BEAUTIFUL part of CP land is that these wonderful aids that make life easier for the family with cerebral palsy (because we ALL live it, not just the child) DO NOT cost an arm and a leg or require a prescription from a doctor in order for insurance to cover.

You are free, as a family, to LIVE life just like everyone else.... having fun with your child, celebrating milestones, and dreaming big dreams of bright futures... just like everyone else.

Oh, what a wonderful dream.

Enter Sandman

2010-05-28T10:43:00.000-05:00

Can't believe I haven't been on this topic for a while, but now, here we go again.... SLEEP.

Oh,, glorious SLEEP! How we miss you.

You go through life, hugging your pillow each night... dreaming, waking to an alarm clock or birds chirping. Life is good. Sleep is good.
I remember days when I would say things like, " I think I slept too much." or "I'm sleeping in tomorrow".
Those days are long gone.

Roa Joseph is a HORRIBLE sleeper. We do the melatonin, warm bath, epsom salts, massage. We've done early bedtimes, later bedtimes. We've done memory foam, more nightlight, less nightlight, fan for background noise. We do warmer bedroom, cooler bedroom.

Not only can Roa not sleep through the night, he can NOT get back to sleep after waking. Most nights he is up for 1 to 2 hours at a time.

Bless Bryan's heart, he is getting up with Roa and handling most of the night time wakings now that I am not nursing and pregnant. Not that I can sleep with the crying and fussing, but at least I can stay in bed until Bryan needs a break.
Last night Roa was up after 11:00pm 3 times. He THEN woke... for the day.. at 3:00 AM!!
We CANNOT function this way!!
Roa on the other hand, is cranky, but ready to play with the dogs and have some milk and crackers. He even had his PT session wth Mary this morning at 8:15 and worked his little tail off!
How can he function on so little sleep????

Napping is going better during the day, but he is EXHAUSTED by that time.... Bryan and I, however, are exhausted all day.

Mr. Sandman, Please Please Please?,,,,,,,,

Ode to Magic Pat

2010-05-26T12:17:00.000-05:00

Roa had a visit this morning from his ECSE teacher, Pat. Usually, we see Pat at ECFE class on Wednesdays, but since we are not making it to class lately due to Roa's morning nap schedule, Pat visited us.

Pat is retiring in a few weeks and it is a sad thing. She is an amazing teacher and so good with Roa. Bryan and I have referred to her as "Magic Pat" since our time with her began. As some of you remember... Roa was a CRANKY baby. Reflux, poor sleep, muscle tone issues, all lead to ALOT of fussing and crying ALL DAY LONG!! When we had our scheduled visit with Pat, I always breathed a sigh of relief to know that for that one hour, Roa was going to be mesmerized and completely happy. Pat just has that way about her. Singing songs, reading books, and toting that magical bag of stuff!

Not only does Roa greatly benefit from a good play session with Magic Pat, but I also love watching her pull out the simplest, put-to-gether activities-- Brightly colored containers with crinkly pom pom balls, cute little boxes of pictures to cue favorite songs! I always think, "I gotta get my teacher hat back on today and get creative like Pat!"

In my years of teaching and doing home visits, I visited so many homes where the toddlers just didn't have any toys or activities to stimulate development. Either the parents were to preoccupied spending money on other things to provide appropriate toys or in some cases the families were financially unable to purchase and materials.
The beauty of teachers like Pat is that she shows parents how to make a container with a cat toy EXCITING to a child. Anything around the house can be a learning aid, given a friendly, smiling adult to introduce it!

So, I am off to my arts and crafts cupboard to see what Roa and I can explore today.....

Thanks, Pat for all you do!!!

Gillette Visit Update

2010-05-20T11:01:00.001-05:00

We had our visit to Dr. Gormley at Gillette on Monday. I realized I haven't shared the report. So, in interested, here ya go...

Overall the visit was good. It was our Botox follow-up to talk about the affects. We informed the doctor that it was a bit too much this time as Roa was a limp noodle for the first two weeks with completely loose legs and wide open hands. Right now, Roa is at the "good" amount of botox and is able to move in his gait trainer and grab objects again. Dr. Gormley said that it is really just trial and error with each injection and that in time, Roa's body will accept the botox differently as it learns to process it. Next time in 4-6 months, we plan on not doing as much in his arms and doing a bit more in his adductors for sitting with more ease.
We talked again briefly about the option for medications. Dr. Gormley wasn't too fired up about starting Roa on anything new as he seems to be doing well with simply the botox. More good news. He said some day, we may look into the option of Phenol to help with tone reduction when Roa is older.

A few of Roa's therapists would like to see him give another trial with the power wheelchair this summer after he turns 2. Bryan and I have mixed emotions about this as Roa really wants to walk. We flat out asked the doctor for his opinion on this matter. We were VERY pleased with he said that usually he is a pusher of powerchairs to give kids mobility, but in Roa's case, he feels that Roa will be a walker and we should continue down the road with the gait trainer. NO powerchair. YEAH!! He did say that someday when Roa is older, a powerchair may be a nice option for distances.

Lastly, we chatted briefly with the doctor about the option of saving our baby-to-be's cord blood to use the stem cells to aid with Roa's development. This is a new area of research occuring around the world with spinal cord and brain based injuries. Little developments have happened as of yet... No miracles, but small improvements in some of the children who have received the treatment. In the US, only Duke University is performing the procedure.
The doctor said, it is so new, he cannot give a recommendation for it, but that many of his patient's are looking into this option. He agreed with us that it may be worth looking into for who knows what the future of science holds.

It is frustrating not know for sure what we can do to help our Roa, but if there is a chance.... we will look into taking it!

I Spy, With My Little Eye....

2010-05-19T11:52:00.000-05:00

Yesterday, 4:00 pm....
Roa and I were playing with rice in his sensory table in our front yard. Roa kept looking up into the sky. Being the trained EC teacher that I am... always looking for the language-rich experience... I said, "Wow, Roa! I see a birds in the sky! Look at the clouds., etc.."
Roa looked at me and said, "M-O-O-N!"
I glanced up and sure enough, there was a tiny, barely visible sliver of the moon showing in the bright spring sky.

He has said moon before in mimic of us, but never completely on his own agenda.
Pure genious, I tell you! Not that I am biased! :)

What to do on a Rainy Day....

2010-05-13T10:57:00.000-05:00

A week of rain. Could it be more depressing?

Roa and I have been making the most of it indoors this week. I am pulling out my bag o' tricks from my teaching years and we are being creative. Bubbles, shaving cream, finger paints, balloons, clothes basket rides... I even put socks on our cat, Beast, which really brought on the rolls of laughter from the boy! Beast is so bored inside, she didn't even mind the blue and green striped numbers.

Since 4 months of age, Roa has loved tenting it. Blanket tents, real tents, blankets over the crib..... his own private little world. I add balloons on strings pinned and hanging down, a few flashlights and light up toys, and it is hours of fun. Giggling and kicking from under the fabric form. Life is good, even if it rains.

And now, back to your scheduled program....

2010-05-08T10:55:00.000-05:00

Yep, I'm back on the blog! Not only has sitting at the computer been difficult during this tummy-churning pregnancy, but then our computer got a virus and was down for a week.
So, here is the update of the Thayer's life for this first week of May...

Crazy cold here in Minnesota. They predicted snow, believe it or not, but it hasn't happened. Thank goodness we haven't planted our garden yet.... plants are safe in the basement.  Darn midwest weather!

No miracles in the life of Rojo, I have to say.   At 22 months now, we are still working on independent movement, trunk strength, and balance. We have continued with all the therapies- PT, OT, craniosacral, Sp/Lang., ABM, Conductive Ed. We have backed off on the Hyperbarics, but hope to begin again soon.
Roa is accepting movement with less frustration, but still doesn't roll to his tummy, sit, or scoot on his own. We are trying to stay positive and are hopeful.

Roa's therapists are all happy about his increased strength gains as this last session of botox wears down. May 17th, we visit Gillette again to let Dr. Gormely know how the botox worked. Definitely needs to be altered for next time as he was a limp noodle for two weeks.

Roa continues to enjoy his gait trainer outside. We have altered it to support him in the hips instead of under the arms which is a great show of his increased strength.

The big news.... drum roll please...... Roa has been officially weaned and is eating solids like a champ! He is eating EVERYTHING in front of him and is so happy to try all kinds of "big people" food!   YEAH!!!
We are very happy that it all went so smoothly. It happened just like many nursing mother's say,... one day, he bit me and we looked at each other and I said, "OK, you're done."
I am missing the closeness of nursing. Missing my little baby Rojo snuggle time, but he is growing up after all. And soon, Baby T-2 will be nursing away!

Glad to be back on the blog! Can't wait to catch up with all my blogger pals!

S L O W I N G down a bit.....

2010-04-12T11:08:00.000-05:00

So, I took a little break from the blog. Sorry to you faithful readers. Thanks to those who asked me to get back on and write about our Roa!

Actually, not a lot has change in the world of Rojo. He continues his busy schedule, taking an occasional break from a therapy as it is spring and the therapists all take a spring break. Otherwise, it has been life as usual.   Work, play, stretch, gait trainer, mat time, books, outside, stroller walks, bath and bed.......

The botox is starting to "settle". Roa's hands are beginning to be able to close again and he is starting to hold on to toys once again... Thank goodness! He is accepting the forearm supports on his gait trainer now which has improved his posture and his overall gait. Perfect for moving around outside, which he LOVES!!

We spent most of the weekend outside. Picking rocks to make a new flowerbed, planting seeds for our garden, cleaning up the garage, and lawn work. Roa is in heaven with his sunglasses, gait trainer and a rake!
Daddy is "Mr. Cool" now to Roa. COMPLETELY in awe of his father! When Bryan started up his motorcycle and the lawn mower, I thought Roa would FLIP over in his trainer, he was so pumped!

Love that family together time.

I have been a bit under the weather the last two weeks- nausea, tired, hard time keeping food down.... sound familiar to anyone????      YEP, you guessed it, Baby T-2 is on the way. It is early yet. Only in my 7th week, but I can tell my blogger friends right!? :)

We are surprised, happy, scared..... but overall blessed.

One of those days

2010-03-25T13:21:00.000-05:00

I'm having one. A day when things seem so BIG and HOPE is hiding behind a cloud of doubt. When each task is accompanied by a whisper of, "Really, Lord? This is the life of my son? This frustration and lack of independence is his fate?" Where questions far outnumber answers and the answer from God himself would still leave me with thoughts to mull over. Ideas to research.

It's it funny how these days just sort of sneak up on you? Creepout behind the couch and jump onto you, leaving you almost short of breath with anxiety over it all? Maybe you don't know the feeling. Maybe you haven't personally experience sheer grief, utter fear over the unknown. You other parents of kids who are differently abled know where I am coming from.

SIGH... one of those days to shake off. Wrap up in a blanket, drink a little tea, and cry during naptime. Sob, cry, Woe is me,
until that gloriou child wakes up.

Then it is back to masking the pain. SMILE. Hide the fear. LAUGH.
Follow through with every therapist recomendation of the RIGHT way to solve our problem. Position with every piece of equipment. Entertain with every adapted toy.
And do so,.. with the ever present whisper in the background of this day...

Really,Lord? This is the life of my son? This is his fate?

Look Ma, All hands!

2010-03-24T13:26:00.000-05:00

So, the botox is kicking in and Roa is a limp noodle. It is such a mix of good and bad. Bad- he is dragging his feet and not lifting his legs in his gait trainer. Bad- his hands are completely OPEN (I joke that it looks like he just had his nails done) and he kinda hits at toys and reaches, but doesn't close his hands to grasp.
Good- he is able to sit with legs apart with more ease. Good- he is working on righting his arms when we help him roll to tummy. Bad- he doesn't support his body with his arms while sitting but slumps forward.

We know it all will adjust with time. That is the difficulty with botox. It is short term, the tone decreases and then slowly increases. The goal is to strengthen the weak muscle while the tighter muscles are relaxed. But, this means re-evaluating all the methods he currently uses for body movement. Little frustrating for us all.

Roa slept better last night for the first time in about 2 weeks. Bryan bought him a memory foam mattress topper that seems to be really comfortable. Also, upon the amount of drool and the number of times I was bit while nursing yesterday, I stuck my finger in his mouth and...sure enough, he is starting to get his second year molars! We loaded him up with motrin for the teething so that helped with sleep as well. I thought we had some time before the next set of teeth, but I guess they can get them anywhere between 20-36 months. Poor guy.

Back by Popular Demand... Sleep Issues

2010-03-21T09:37:00.001-05:00

I know. It has been a while since you've heard me complain about sleep. So, here ya go, I'm back at it.

I've kinda been going with the flow. Letting things happen as they do, getting up without complaint, taking shifts with Bryan to breastfeed, diaper, adjust or sooth Roa in the night. 2, 4, sometimes 6 times in the night.

The Botox injections went off without problem. We await the full effect of the botox...dreaming of a sleep filled night that hasn't come..... and question.

Is Roa's waking and nightly crying session behavioral?
Is it muscular?
Will the botox help?
Should we try a new bed or memory foam?
Should we have him adjusted?
How do we teach him to fall back asleep?
Do we cold-turkey cut out his night nursing session or do we wait it out and let him self-wean?
Do we let him cry it out after we check his diaper and reposition him or is that cruel?
Do we try medication?
It is dietary issues?
Why is he wide awake and looking around his room OR screaming bloody murder at least one time in the night for UP TO 2 HOURS??
WHAT ARE WE GOING TO DO ABOUT THESE SLEEP ISSUES THAT ARE SLOWLY DRIVING US INSANE???

I read and research and ask doctors. We have been to the sleep specialist, we have chatted with other parents of children with CP. We know sleep issues are common. We know we could try our sleep training methods AGAIN or breakdown and give him medication. NONE of the options are easy. None of the options provide instant magical, wonderful, life-altering sleep.

Bryan and I are attempting to regain some normalcy in our life regardless of our lack of sleep. We have started working out together when Roa goes down each night. We try and watch a weekend movie rental without gazing up at that monster known as THE CLOCK that ticks away and counts down until "Screamfest 2010".
We continue to go on our nightly family walk through rain and snow and dark of night,... sometimes with weak, tired bodies and heads that ache and yearn for a pillow. (Our bodies and heads, of course, not those of King Roa the happy backpack carrier-rider, giggling up at the ducks or moon overhead.)
We shower and settle in for our nightly, bedtime reading session even with tired eyes. We read a few pages of another world before saying a nightly prayer that "tonight is THE night" when Roa will decide, "AHHHH, sleep is great.. I need this... I can do it without Mom and Dad!"

We try and regain normalcy in a completely sleep-deprived state. What else can we do?

Botox tomorrow

2010-03-18T20:58:00.000-05:00

We are excited about tomorrows botox treatment. Roa continues to have nights with frequent waking and we are ALL exhausted. Pretty much every two hours he needs shifting, massage, or wants to nurse! It is time to let those muscles rest with the help of that blessed injection.
The botox treatment isn't too scary. Roa can not eat for 4 hours before the procedure and drink clear liquids up to 2 hours before- this is the most difficult part. He is given slight sedation with nitrous oxide, so basically, he just gets drowsy. Funny,... last time they said he would be sleepy and low key all day after the injection. They obviously don't know our Roa too well. He got right back on the move! No rest for the wicked!

Saturday, we are back to Conductive Ed with Ors after taking last week off for a family event. We are excited to get back into the nice structured program. This week Roa's OT, PT, and teacher had off for Spring Break, so it has been pretty laid back in the Thayer household. Lots of cruising around in the gait trainer on the lawn chasing our cat, Beast.

Bryan took Roa to ECFE class yesterday and I got a massage! AMEN! It was heavenly. Bryan enjoyed his time at school with the toddlers and all the mommies. It was great for him to see Roa in action with friends at school.

SpRiNg!!

2010-03-15T14:01:00.000-05:00

Finally, we can go outside!!!   Amen! Winter has disappeared (one can only hope we get NO more white stuff) and the Thayers are back outside. We had a great weekend outside. Playing with the dogs, swinging, moving in that gait trainer through the grass. Roa LOVES it outside. It is hard to get him back in.

This Friday, Roa has his 2nd Botox treatment. We have gone back and forth as to following through with it. He is making such nice gains with his therapies and CE that it is hard to think about altering his muscle tone and making him "relearn" how to move. However, our nights are MISERABLE again for the past two weeks- Roa's frequent wakeups and crying in the night for up to an hour straight is heartbreaking. He just can't seem to get comfortable and the only way we saw change in this was through chiropractic care and botox.
Another key component to our discussion to go ahead with the treatment is that Roa is scissoring his legs more and is unable to remain in a seated position on the floor for long before he straightens those legs and arches. It just feels right to get the botox another try for the sake of sleep and comfort.

Roa has had a visit two times now from Lyndsey, Speech therapist. Lyndsey is going ahead with an order through the school district for a voice output device for Roa. Basically, for those of you unfamiliar, a board that holds 4 pictures that Roa can push and a prerecorded voice will talk for him, naming what he wants. We plan on using this for mealtimes and activity choices.
NO, it doesn't mean that we think Roa will not speak. Voice output devices many times prompt children to speak for themselves. It also can decrease frustration with communication (e.i. Roa screaming when his juicebox is gone) and is one more step towards a little independence.   And one more piece of equipment for our busy boy.

New Blog for Me!

2010-03-12T13:16:00.000-06:00

In my sleep-deprived, crazy tired, and overly busy state of mind, I started a new blog.

I have been searching HIGH and LOW for years for great therapy products, toys and equipment for kids and have found some really wonderful stuff ... and some not so great stuff out there.

I wanted to share all I find in a blog for parents! http://rojosfaves.blogspot.com/

Please comment or email me with your own thoughts on great products I can try out!
jbthayer07@hotmail.com

Thanks for reading! Jennifer

Namaste

2010-03-09T10:36:00.000-06:00

Namaste, "I bow to you", is a greeting we use when doing yoga. Hi, Peace, Good day... it means whatever you like it to mean, but the official meaning of Namaste is "I bow to you".

I started doing yoga about 7 years ago and immediately took to it! I loved the feel of such control over my body. The way I could feel each muscle move and hold during a position. The joy of a good stretch of muscle tissue while breathing deep makes me feel so alive.

I loved my yoga practice so much that I started leading a yoga group with a coworker at the school district I taught. It was so great to practice yoga with others and help them find the joy in full body awareness. I even taught a summer school yoga and creative movement class for elementary kids! I loved it!

My yoga days took a stand still when life got crazy- I got engaged, moved, sold my house, started a new job, got married, pregnant, got in a major car accident, healed, had Roa, bought a house and moved,...

I wanted to be one of those "yoga-moms-to-be"- proudly displaying my baby belly while in Warrior pose. I wanted to do yoga with my newborn, cradling him lovingly while I stood strong in Tree.

However, life took a different turn for this Yogi. I not only suffered such morning sickness throughout the pregnancy but I went through such pain and a long recovery after the car accident. After Roa was born, cradling him lovingly in Tree pose was impossible as he arched and screamed and refluxed. I even tried some yoga poses to help calm him and I for a few days, but the stress took over my tired body and I gave up.

Ironically, my son is the polar opposite of the nature of yoga. He has limited body awareness, he struggles with muscle control, a good stretch and massage in our eyes seems to cause him discomfort. How could God give me a child who can not comprehend the power of yoga??

But, I am know seeing that God has a plan. He has put in my path Conductive Education, the Methods of Anat Baniel, Craniosacral therapy. I am reading and studying movement again and last week started a Anat Baniel course meeting every Wednesday night! I am looking at muscles in a whole new light!

This Yogi is moving again, breathing again, beginning my yoga practice again- 3 days a week.
AND the beauty is, I'm taking my Roa WITH me on this ride of body awareness. I am stopping feeling bad about his lack of control and guiding him through self discovery with the help of so many great therapists!

Namaste! I bow to you, my beloved Roa!