Skip to main content

May Edition eSpecially Parents: Denise's Story

Denise
 Luke is a sweet three year old with CHARGE syndrome. He has had a rough start in life with multiple surgeries, hearing loss and developmental delays. Despite all his challenges, he almost always has a smile on his face and a deep laugh which is very contagious.

As I mentioned in my first post, Luke has facial weakness on the right side of his face which makes his smile lopsided. About one year ago, our family traveled to Houston and Luke underwent a 10 hour procedure to graft his masseter (chewing) nerve to his weakened facial nerve. After waiting almost a year for the graft to grow Luke can now make a full smile when he bites down and clenches his teeth.

It is sometimes hard to see the success of the surgery since Luke cannot understand what he needs to do to
activate his new smile. We still see the same lopsided smile each day. On the other hand, when Luke is able to make the correct facial movements to evoke his new full smile it is extremely exciting for us to watch and makes the difficult journey worth it.

So what makes me smile most about Luke? I would definitely say seeing him smile, lopsided or not.


eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catch-up, read more here.

Comments

Popular posts from this blog

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

Make this Race Amazing

Mecklenburg County's Therapeutic Recreation's Amazing Race is Saturday, March 24, 2012. All funds raised go directly to the scholarship fund for summer camp. Summer Camp is 8 weeks long with over 150 children with special needs participating. Last year, over $6,500 was given away in scholarships. In times of budget cuts and loss of resources, Amazing Race is a creative way for the staff to raise money for the children who may need financial assistance attending camp. I will be posting photos from 2011 camp. I am only posting photos that do not show faces of the children, but you will get the idea about how much they enjoy the activities. You don't have to see their smiles, you just have to feel them. The staff have sent me their thoughts on how they feel about camp and I will be posting those as well. Most are trained as recreational therapists and have devoted their life's work to helping children and adults with special needs learn skills, make friends, de

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h