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

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

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

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

Other new therapuetic attempts....
  The Wilbarger Brushing program- to help him process movement and increase body awareness.  6-8 times a day, we should brush Roa's entire body and do joint compressions.  We have decreased the amount to about 2-3 times due to the nice weather, but it seems to alert his little body.
http://www.sensory-processing-disorder.com/wilbarger-brushing-protocol-who-can-do-it.html

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

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

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

Marching forward

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

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

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

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

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

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

For Trish

The Friend Who Just Stands By

When troubles come your soul to try,

You love the friend who just stands by.

Perhaps there's nothing she can do,

The thing is strictly up to you.


For there are troubles all your own,

And paths the soul must tread alone.

Times when love can't smooth the road,

Nor friendship lift the heavy load.


But just to feel you have a friend,

Who will stand by until the end.

Whose sympathy through all endures,

Whose warm handclasp is always yours.


It helps somehow to pull you through,

Although there's nothing she can do.

And so with fervent heart we cry,

God Bless the friend who just stands by.

                   - Author Unknown

Wolf Fever

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