Tuesday, December 21, 2010

The Other Guy

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.

Tuesday, December 14, 2010

Chatting about updates

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!.....

Tuesday, December 7, 2010

Happiness is... a baby brother


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!

Friday, November 19, 2010

Big Brother Roa

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

Friday, November 5, 2010

Halloween Fun!

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!

Thursday, November 4, 2010

The world viewed from my back

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.

Monday, November 1, 2010

Sandman comes... and goes

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.....

Tuesday, October 12, 2010

Update after a break from the blog

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!

Tuesday, September 14, 2010

Journey Into a New Stage

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?

Wednesday, September 8, 2010

Babble


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.

Friday, August 20, 2010

Choices

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?

Saturday, August 14, 2010

Lite Gait training for Rojo

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

Thursday, August 12, 2010

Tuesday, August 10, 2010

Conductive Education Family

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".

Wednesday, August 4, 2010

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

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?

Tuesday, July 27, 2010

The Tingle to Teach...

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!  :)

Wednesday, July 21, 2010

And the Little One said, "ROLL OVER!"

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.

Thursday, July 15, 2010

Someone to Watch Over Me

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.

Friday, July 9, 2010

Update on King Roa

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!

Tuesday, June 29, 2010

Party Thank You!

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!

Wednesday, June 23, 2010

Say CHEESE!

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!

Friday, June 18, 2010

Happy Father's Day!

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!


 

Friday, June 11, 2010

Birthday Wishes

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.

Wednesday, June 9, 2010

Craniosacral and ABM Team

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!

Tuesday, June 8, 2010

King Roa Demands

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.

Friday, June 4, 2010

CP Dreamin'

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.

Friday, May 28, 2010

Enter Sandman

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?,,,,,,,,

Wednesday, May 26, 2010

Ode to Magic Pat

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!!!

Thursday, May 20, 2010

Gillette Visit Update

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!

Wednesday, May 19, 2010

I Spy, With My Little Eye....

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! :)

Thursday, May 13, 2010

What to do on a Rainy Day....



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.

Saturday, May 8, 2010

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

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!

Monday, April 12, 2010

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

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.    

Thursday, March 25, 2010

One of those days

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?

Wednesday, March 24, 2010

Look Ma, All hands!

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.

Sunday, March 21, 2010

Back by Popular Demand... Sleep Issues

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?

Thursday, March 18, 2010

Botox tomorrow

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.

Monday, March 15, 2010

SpRiNg!!

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.

Friday, March 12, 2010

New Blog for Me!

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

Tuesday, March 9, 2010

Namaste

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!

Thursday, March 4, 2010

Thoughts on Isolation

One of the blogs I follow, "5 Minutes for Special Needs", posted on the topic of  isolation.  Today was one of those days when I pondered this feeling of being alone.

Roa and I are joined at the hip, it seems. So, I am never truly alone. However, I feel very isolated in other ways.
I have daily visitors- armed with therapy balls, wedges, equipment and toys for distraction.  I get out of the house to visit additional therapists, the toddler classroom, or stores with all of that equipment and toys for distraction.  Occasionally, I take a little guilty ME time and go out for dinner with friends, or Bryan and I will get out for a date, but overall, it is just.. The King and I.

Even on the days that I am surrounded by other parents of toddlers, family or friends.  There is that sense of separation.  The Unicorn among the horses, if you will.  No one  in our circle of life can fully grasp the day in and day out living Cerebral Palsy

Those that attempt to ask questions and want to be apart of it, many times do so with caution--How do I ask this question, how can I appear knowledgeable and interested, what can I talk about that doesn't offend?
Others just flat out don't ask and aren't interested.  It is those family and friends that we find ourselves distant from.  Not because they don't focus simply on Roa in our conversations, but because they do not acknowledge our grief, hope, and ambitions while living this unwelcomed life of reality. Living Cerebral Palsy.

On the other hand, we have great friends and family who participate in our life such kindness and caring.  Who jump up and down with us when Roa does a GREAT feat, no matter how small.  
But... they also share with me their child's accomplishments and latest milestones sometimes with a tone of guilt or sometimes with such pride and joy.  Either way they share, once again,... I am at the place..... Isolation.  Separate.

Even in every day life, such as Roa's first visit to Burger King last Saturday.  Roa attempted to sit in the restaurant high chair, wear his Burger King crown, and carefully balance his little body while eating the first fast food french fry of his life...  We were set apart.  Viewed from onlookers as different.

The Unicorn waiting to be like the rest of the horses.....

A Unicorn is a majestic beast, however.  One that is used to standing tall and doing it's own thing.  One that is accustomed to being Isolated and viewed in a different way.  Isolation leads to self reflection, after all.  Self reflection  leads to the desire to better yourself by helping others in life understand differences. Embrace others and focus outside the corral of horses.

So, we will embrace Isolation for today,... the King and I.  and carry on living Cerebral Palsy.


Tuesday, March 2, 2010

Roa and his block work



Check out the squat to stand, rotate and reach action of our guy!  He is a champ!

Hodgepodge of thoughts and the ramblings of a mom with spring fever

Roa loves sledding!  Not a big surprise, really however he looks unbelieveably precious in that sled with Daddy, sailing down the hill in our backyard.  (Don't fret- pictures soon!) 
It is finally that time in the Minnesota winter season when we can play outdoors without freezing our tails off!  Roa was very happy to get his little behind planted in that swing again while Max and Molly chase each other around the yard.

It was a busy weekend for the Thayers.  Conductive Ed on Saturday, errand running, church, and lots of backyard play.  Conductive Ed continues to be both the highlight and  a stressor in our weekend.  It is truly a wonderful session to work on every developmental skill for Roa.  Ors is great and Roa enjoys his singing and entertaining during the activities.  The stress?  Roa's Saturday nap and meal time is all mixed up and the day gets a little rough, but we will cope! 
**If any of you Conductors reading this know of any literature worth reading on the subject of Conductive Education, please share with me!  I'm still looking to locate a full copy of Dina to purchase!

We have taken a break from our hyperbaric chamber time and are ready to get back into that routine.  With Bryan traveling for work and Roa's little bout of cold and cough, it was a necessary break, but now we want to get back in the game.

King Roa has been making some nice little gains as of late.  Besides cruising around in his gait trainer, we have been doing a MAJOR focus on floor time, tummy time, and body awareness.  I have been doing alot of research and practice with the Anat Baniel Method along with our practioner, Neue.  The methods she has been sharing (along with our Conductive Ed,  aquatic, craniosacral, OT, and PT routine) seem to be making something "click".  Roa tolerates being on his stomach now during play for longer periods of time.  He also is building arm, shoulder and neck strength nicely.
Standing in play is still Roa's favorite and we allow this time for him to do his own thing.  Last week, Roa took his FIRST step to the side to reach a toy on the ottoman.  He also slides down the side of the ottoman to reach out for the floor and get on all fours with some stability assistance!   Tiny baby steps towards... INDEPENDENCE!

A few of you wonderful readers had commented by blog or email about our crazy busy therapy schedule.  Yes, we do have a full week of adventures for Roa.  However, to him, it is all about play and interacting with anothers.  Bryan and I have shared our philosophy of "Learning through Play" with all of Roa's therapists and they are doing a great job of providing toys and experiences in a playful setting.

Is it stressful for Bryan and I to have such a busy load?  Yes, honestly it is.  However, what else can we do when the pride and joy of our life struggles so with movement, communication, self help skills, etc?  We have nothing but drive, determination, and hope that guide us each day through our busy routine. 
I know that each method of therapy thinks that it is THE ONE to help a child with CP.  However, it is definitely not a one size fits all world of special needs.  We are testing out all that we can, discussing which seems to be the best fit for Roa and will go from there.

 Roa is 20 months and has come so far in a year with all the things we are doing!  How can we take something away when all we have is hope for continued progress?  Which therapy is helping most?  We don't care right now... as long as we see change and Roa continues to laugh and smile.

Thursday, February 25, 2010

Play Time revisited!



Everyone likes to play.  Adults, children, moms, dads, teenagers, grandparents... everyone plays something.  We play videogames, boardgames, cards.  We play sports- hockey, volleyball, golf...  In college, we played drinking games.  As parents in a car, we play "I Spy".  We play along with the Price is Right and Wheel of Fortune.  America is tops in the world of "Reality" play- Whose gonna win the race, which bachelorette will get the rose?....
Living in a society of such a playful focus, it surprises me how difficult it is to find adults that actually PLAY with children.   "Go Play".  "Find something to play with!",  busy parents mutter as they try to finish household tasks.  If they would only realize that many times those basic home chores could be completed with a song and a game involving their child.  This would free up time to actually PLAY together.

One of the blogs I follow (To the Max) along with Team Inspire- a networking website for Special Needs is  sponsoring a discussion and give-away contest focused on activities and play for children.  What a great topic!  I know I get on a soapbox on this subject, given my thesis of learning through play, but don't you agree that it be great if everyone took a moment to have some fun, create, sing, and get involved with an activity for the sake of a child?

At Roa's ECFE class two weeks ago, I had the pleasure of joining the children during playtime instead of exiting for the Parent group component of the class.  It is a room of 10 toddlers and two teacher assistants.  The assistance do a nice job of keeping the kids safe, getting down toys from shelves,  blowing bubbles, and comforting those who miss their mommies.  But, as I sat in the block area rolling cars down a mountain.... VROOMMM and CRASH!....  Bane and Chandler squealed with joy as I actively joined in the play. They watch intently as I help Roa grasp a toy bus and move it through the tunnel with "The Wheels on the Bus" as the soundtrack I provide. Meanwhile, the teacher assistants looked at me like I'm cracked!

I have always loved to play with little ones.  Love watching their eyes light up with new discoveries. 
Have we as adults lost that ability to make learning fun? Are we embarrassed to be caught in a childish game?   Are we just there to provide the new toy, set up a playroom, and go about our own business?

My Roa could not have accomplished the goals we have worked diligiently on without the playful approach of Mom and Dad, family, and many of his therapists.  When trying to introduce a task without a play approach, Roa rebels!  We create homemade toys, we make up songs to go with tasks, we play I SPY as we stretch and move in new positions.   Putting a toy in front of him is simply not enough. 

But, isn't that true for every child?

Monday, February 22, 2010

First round of CE

Saturday was our first official session with Ors and Conductive Education.  Bryan and I were very happy with how Roa responded to it.   Why did Rojo like it?
First of all, there is alot of singing... Scores Big points with King Roa!  Also, Ors is such a nice guy and that accent of his really gets Roa's attention.  I think it is also great to have a man involved with fun time work, besides Daddy. 
Next positive is the steady pace, moving from one position to another in a neat orderly fashion.  Everything  we did from standing up to sitting down, from reaching to turning the head,...had a little transitional song.  Once again,... King Roa got his music fix.  Lastly,  there were many tasks that involved a rhythmic beat- shakers, clapping,... Roa loved it all.

He got a little fussy when hungry, but the beauty of CE is that we also worked on feeding and positioning during mealtime.  Every move we made, from snack table to the play area was goal centered on correct movement and positioning his body.  As parents, it really makes you think about all of the teachable moments we need to take advantage of.

The only negative of our experience was the time and travel.  It is about a 40 minute drive to the center.  Add 40 minutes back and the 1 1/2 hour session and it was our whole day.  This would be completely okay if Roa would sleep in the car, but he has never been a traveling sleeper.  But he has mastered the skill of being a most CRANKY traveler!   So, nap time was early and a cat nap was late so bed time was postponed and our night was HELL with frequent wake ups.  We will take the good with the bad.

Tuesday, February 16, 2010

Free wheeling

Here is Roa's gait trainer action.  It is the best taping of him on the go that I've filmed thus far. Since the taping, he has mastered getting over the bumps of the door frame and rugs.  He even is handling some corners  Also, I no longer have to yell at him like a crazy momma and stomp my feet to get him going.  (I suggest the volume turned off while viewing!)

I Saw The Sign

The visit with the "functional neurologist" aka chiropractor studying for his Diplomate in Neurology, yesterday was quite a waste of our time.  However, I needed to chat with him to rule it out... give it a good look... feel with my mommy's gut that he could not help our Roa.

 The first sign-When you enter the one room therapy center and are greeted by the receptionist who instructs you to have a seat as she is so "busy", and  you look around to see 2 employees chatting, 1 client waiting, and 1 client involved in some sort of therapeutic method involving a chair, headphones, and magazine.... you wonder why you are there to wait. 
 I had filled out their lengthy intake forms and watched their dry videos of the doctor speaking on the brain prior to our consultation meeting as strictly instructed. The receptionist made me sign additional forms while I juggled my active Roa and then... we waited... 20 minutes, as the doctor chatted with a client in his little office off the therapy room. 
The two employees and the receptionist chattered away, pausing to watch me walk around the room, hunched over with King Roa kicking his ball.  There were no toys or objects of interest for Roa to be seen.
 2- Another "why am I here" sign.
When the doctor finally came to greet us, he shook my hand but gave just a glance to Roa.  Sign number 3.
We went to his office and he preceded to ask, "So, what questions do you have for me?"

"Well, I'm curious and wanted to meet with you today to see if you could help my son.  I saw your add in the paper, have been reading on the treatments of brain injury and so wanted to see what your program would look like for Roa."  I stated.

Well, with cerebral palsy there is no cure. It is something that he will have to live with. There are many things we can do to work with him but it would take us being very persistent and aggressive...3 times a week.... and many off the things we can do here he is just to young for....yada yada yada... punch   jab   stab    your   heart...

He asked me if I was familiar with the works of Glenn Dowan and the IAHP.org,  I told him, yes, I am reading their book on brain injury.  He looked shocked and unbelieving and then went on to tell me that he follows their methods, but that they are hard on a family ...necessary follow through daily.... patterning.... incline plane for crawling....  yada yada yada... church involvement for support of methods.....hardship and possible divorce...

Man, does this guy know how to bring you down without selling his program ONE bit!  HUGE FLASHING SIGN 4!

Funny thing, while Doctor Downer was lecturing away, Rojo was smiling up at him,  drinking from his sippy cup and kicking his ball with me in tow around the tiny office space.  Roa seemed to be laughing as if thinking, Why are we listening to THIS, Momma?  We should be playing!  
Final sign- we are outda here!

Brain based therapy, so very close to home, ruled out.  Checked from list.

There are many people out there in our world whose method WILL work for you given this that and the other.  I continue to sort, dig, pick and choose.   

Meanwhile, Roa continues to smile, laugh, and kick his ball, with me in tow,  all round the offices of  "The Land of Know".

Mom and Me

Mom and Me

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