Tuesday, June 25, 2013

Blow the Man Down

Yesterday was Roa's birthday.  He had a super busy day of preschool in the morning with cupcakes and song.  Followed by speech and OT in the afternoon with snacks and song.  He was beat after his big day and we had naptime followed by dinner and playtime with Daddy and then,... the much anticipated presents and Birthday Brownies.

When presented with the candle-lit treat, Roa was so pumped up.  We sang the song, mom took some pictures, and Gunnar helped blow out a few of the candles.  Daddy, not giving up on the Birthday boy, kept prompting that blow and POOOOF.  Out went a candle!

To many of us, blowing out a candle is no big deal.  Alot of people wouldn't even think of the fact that this very task is hard work-  a combination of mouth and lip muscle control, paired with abdominal and lung strength to exhale, head control to aim and put that fire out.
Roa did it. 
Not on his first, second, third, or fourth birthday... but this one- number 5! 
We have waited, practiced, therapeutically approached this very task for years.
 He did it.
One of the many things to come for our Hero Roa.  One more thing to check off the developmental list that grows with each birthday, but one more check, none the less.

Blow away, lil champ!  Blow them all away!

Friday, June 21, 2013

Family Photo

Update, Thank You for your Patience!

So many changes.  So much news. 

As I sit down to blog with my cup of coffee and a quiet house around me,  I breathe a deep breath. 

Hello, old friend!

The Thayers have sold our home, survived closing, packed, and moved into a townhouse rental.  We will be here for around six months as we wait for our new home to be built.  Handicap accessible.  A home for Roa where he can move around in his gait trainer, wheelchair, etc., with some independence.  A new home where the yard is flat, the garage fits a wheelchair van, and the only stairs lead to the basement for storage.  It will be grand.

Our rental is nice.  Still a two-story with bedrooms up, but we can swing it. The beauty of this unit is that it accepts pets, does short term leasing, and has a playground and pool right off our patio!  The kids are in heaven!  I worried about the action, but it is pretty quiet and people are friendly.  We are also on a nature preserve which includes part of Birch Lake.  There are woodsy, marshy walking paths and boats on the lake.  Peaceful and inviting.  Just what we needed, a sort of get-away.
Which leads to my next subject... our Beasty cat, liking her outdoor time, was let out in the night and enjoyed her frolics.  However, she has not returned for over a week!  ;(  We have called vets, animal control, told townhouse staff and neighbors, but we wait.

Roa loves the pool! It's so good for him. School has ended and he has begun his summer therapy sessions which include~ Occupational Therapy, Speech, Physical Therapy, Music Therapy, and Preschool.  The end of the school year was a flurry of packing and moving so finding a new PCA was not on the top of my To-Do list, but God has a plan and Lindsay entered our lives!
Laura, Roa's amazing Phyical Therapist, had a student shadowing her and asked if she would be interested in PCA work.  Lindsay is a true gem!  So open to learning about Roa, helping our family, partaking in Preschool and therapies.  We are truly blessed to have her this summer.  Roa and Gunnar, both love her!   Welcome, Lindsay to Team Roa!

Roa had his Gillette visit to check his Botox-phenol progress and we left with smashing reviews!  Dr. Gormley is impressed with Roa's muscle tone changes, his increased trunk control, and flexibility.  A hip x-ray was performed and showed that Roa's hips are that of a typically developing child.  This is HUGE in the Land of CP! (picture cartwheeling momma here!)  We pat ourselves on the back for this, as we keep Roa so active and moving that hip issues, so common in CP, just can't affect him.

We continue to wait for his powerchair order.  Wait for insurance kinks and our application for TEFRA (fee-based Medical Assistance) to pass the County.  So we wait on the vehicle as well.  We will do a new trial with a few different walkers to see which one gives Roa the support he needs to keep cruising.

This summer we also await Roa's Masgutova Method 5-day camp in July and continued Hippotherapy in August.

On another positive note,  Roa's fundraiser was a big success!  So many giving friends, family and even caring strangers!  We feel so fortunate to have the love of Karl, Vickie, Travis, and others who helped make it all happen and run smoothly!   A much overdue THANK YOU is coming, but consider this blog a BIG HUG from Rojo!  The funds raised will help with to costs of a wheelchair van and powerchair copay.

I'm so happy to give you another glimpse of our life.  I LOVE those of you who comment, contact me via email or facebook and show you care.  This is a tough battle everyday and it helps to know we have people out there praying for us and keeping the faith.
Rojo will continue to do great things.  Keep watching, reading, and you will be a part of the magic!

Mom and Me

Mom and Me