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?

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.

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?

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.

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.

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

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!

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.

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.