Braces are No Joke!

Whew, it’s been a long time since I’ve blogged!!!  Now that things have slowed down in the specialist/surgery department, our lives have almost been routine and mundane. But, Drew’s braces have kept things a little interesting.  I’m telling you, HKAFO’s are no joke.  Drew’s HKAFO’s are a life-saver and provide so much wanted independence for…

My Ongoing Showdown With Insurance

Well, would you believe it:  Things have been pretty much stable and uneventful for the last three months.  It’s not that I have forgotten my blog, it’s just that for once, our lives have been pretty normal! Last update centered on Drew’s 11th leg surgery to remove some hardware in each leg. Since, he’s back…

Surgery #11

Sometimes, I just don’t have a beautifully thought out riveting opener to my posts to pull you in. And, this one won’t be an exception. I’m just going to jump right on in like you would a pool after a few cool evenings. After much hassle and many miles, we finally got Drew’s hip piece…

The Moment We’ve All Been Waiting For

Originally posted on drewunarmed:
I know it has been a long time since I have written.  My schedule is pretty rigid – maintaining a household, breast-feeding a baby, and all of the work that goes into raising Drew, but something so special has happened that I have taken time out of my regularly scheduled cleaning routine…

Growing Upwards and Onwards!

Summer break is over and what a summer it was.  Drew attended an away-from-home camp at the Camp for Courageous Kids for the first time. He participated in a couple of day camps at a nearby children’s museum.  We visited Florida for a follow-up with Dr. Paley.  We were lucky to be 30 minutes or…

Summer is Coming to an End

I usually reserve posts for when I’m feeling inspirational or have a strong, thought-out opinion about a matter, but this time I’m just going to document some events that have occurred over the summer.  Typically, I dislike the “reciting a series of events” style of writing, but my hope is one day that Drew will…

Summer Vacation is Here

  I know it’s been an unusually long time since my last post.  It’s definitely much harder when school is out finding lengthy periods of time in which I can escape to my laptop in another room, thanks to a nosy 4-year old who is obsessed with tapping the keys of said laptop whenever he’s…

Insurance is BULL $#%^

Special needs have all kinds of challenges, both upfront and many “behind the scenes”.  The recent weeks have been a little more “behind the scenes” frustrating and time-consuming than outward challenges.  Which, in all honesty, is a good thing because that means that Drew is sailing on routinely and things have been pretty stable for…

Drew’s Birth Story

Originally posted on drewunarmed:
Today, February 6th, is Drew’s 8th birthday!  Eight!  Happy Birthday, Drew!  So, in honor of his birthday, I wanted to share his birth story. We had a planned C-section in Nashville, Tennessee at Vanderbilt.  We knew of his syndrome as early as just a few months into the pregnancy and the…

Drew Graduates!

  I’m proud to announce that Drew is an official graduate of the intensive suit therapy program at Believe Therapy! Drew completed his last day at Believe Therapy on Friday, February 3rd having completed 60 hours of intense physical therapy in three weeks.  It would have taken around five months to complete the same number…

Believe Therapy Week 1 – Check!

  Well, five days of Believe Therapy complete and what a week it was.  Each day was full of relentless labor, drenching sweat and even occasional tears as Drew was pushed to the absolute limit, and even slightly beyond by a dedicated team of therapists with merciless motivation, endless energy and pure love and support…

Believe Therapy – Day 1

We’ve been anticipating this specialized therapy for a few months, but it still seemed to sneak up on us out of the blue.  And, not to be out done, “life” was bound and determined to make this trip as stressful as possible starting with a miserable head cold making its way through the family one…