So, I last left off waiting for Drew’s braces which we FINALLY did receive.  Turns out they had ordered new bars, but the ones that came in weren’t the correct ones so they had to re-order new bars which extended the wait.  We finally got them and Drew remembered how to walk luckily!

This time tomorrow, my rainbow baby and husband will be making their way to Florida for Drew’s follow-up visit with Dr. Paley.  Unlike the previous six trips to Florida, I will not be travelling to Florida with them.  In order to save on expenses and the hassle of lugging around a toddler, I’ve decided that since it’s just a routine check-up that I would hang back with Holden this time.  It’s difficult to accept that my precious baby will be so far from reach.  I have struggled with anxiety before when I’ve travelled long distances alone for fear of something tragic happening to me leaving my babies without a mother.  When we’ve travelled together I at least have the peace that if, God forbid, something did go bad, at least we were together.  But normal motherly anxieties enhanced by what could probably be considered some form of PTSD from infant and pregnancy losses have me dreading being separated.  So, I would appreciate all of the positive vibes, prayers, good luck dust or whatever it is you believe in that their travels are easy and uneventful and that I’m able to keep my sanity intact.

This visit is just for a routine follow-up.  Drew will have additional x-rays taken and Dr. Paley and his team will evaluate Drew and his progress.  The most interesting topic of discussion will undoubtedly be upcoming surgery in May.  I’ve already prepared two pages of questions typed on white paper with plenty of space for Nathan to write notes so he can remember the responses after the appointment.  A lot of the responses will help us decide how long we’ll be staying in Florida and logistics of the trip.

20160107_132218If their safety wasn’t enough to be worried about while they travel cross-country without me, our hearts nearly stopped the other day with some shocking news that almost threw a wrench in this whole cross-county travel experience.  The metal bar, the supposedly can-withstand-the-weight-of-a-400-lb-man-stainless-steel bar, had broken yet again.  If you aren’t aware, Drew’s aluminum bars on his braces have broken at least three different times rendering the braces useless.  Remember this? And then this? Exasperated, I demanded something different be done since the aluminum bars continued to fail so the orthotist team opted to replace the bars with stainless steel.  But, now, here we are with another broken bar and within three days of his trip to Florida really complicating the entire process since he’ll be unable to walk.  Travel through airports, security, tight airplanes, etc. are inherently stressful but add to that a 60 lb kid that has to be wheeled and carried (wheelchairs won’t fit down tight airplane aisles) and I’m not sure any amount of personal strength and composure could prepare you for that hassle.

So, I placed an urgent call to the orthotist team and though it was extremely hard, I managed not to use any obscene language and emphatically described our plight.  Luckily, they were able to arrange a short-term solution to get his braces fixed before the trip while also planning for something long-term.  Turns out they didn’t have a steel option for Drew’s braces so they had just replaced the bars with a thicker bar of aluminum.  Yet that still wasn’t enough.  So I made a rush trip to Louisville to have them repaired.  But the new bars are still aluminum so we have the nerve-wracking expectation that it could break at any moment: halfway through security, finding the seat on the plane….any of which would just really be frustrating and cumbersome having to now deal with.  The bars have lasted a few weeks before, but when its critical that the braces last and the potential to add stress to an already stressful situation, that’s when you get overly paranoid and pessimistic.  I feel like I’m watching a car teeter on the edge of a cliff.  Nerves building up.  I’m just anxiously anticipating the tragic moment of it falling over without warning.  I’m nervously chewing my fingernails.  Drew, excited about having his braces repaired, hopped and danced around last night and Daddy and I were covering our faces in stress and begging Drew to take it easy.  We rented a movie and did all things that required sitting down and being relaxed in feeble attempts to minimize the stress on his bars.  Like, his bars have a clock with a timer and we’re avoiding using up those precious seconds in mundane life.  Let’s just save those seconds for the trip! LOL  But, don’t tell that to a rambunctious active boy who spent the first five years of his left “disabled” and has undergone the excruciating and arduous effort of seven leg surgeries to gain the ability to walk.  Choosing to sit down and not enjoy the fruits of his labor is not an option!

Please don’t forget our campaign to raise funds for our next trip to Florida for Drew’s upcoming leg surgeries.  This trip Drew and Daddy are taking tomorrow is costing us around $260 in hotel stay and about $400 in rental car and this is just for 1 day/2-night trip and Miracle Flights funded our travel getting there which we won’t be able to employ in May where we’ll be staying for two weeks or more.  So, add about $1000 for air travel and multiply our 1 day/2 night expenses by about 10 and that’s over $6,000…..and on my campaign I set my goal at $3,000….oy!!! I might need to update that!! Ughh…..heart begins to race…..

To help boost funds, we’ll also be hosting a tshirt auction on January 30th at 6:00 pm CST.  Join this event to bid on Drew Walking Tall shirts.  Bidding will be open for three hours, until 9:00 pm CST at which time the highest bid will be deemed the winner.  Payment will need to be made within three days of the purchase.  So, if you’re interested in buying a t-shirt to help raise funds, please join!  And, if you’re not interested in buying a tshirt, please share my campaign and event, invite your friends, so we can have lost of participation!  Thank you for all of your support and thoughts!

GoFundMe: gofund.me/pxcev8j8

Tshirt Auction Facebook Event: https://www.facebook.com/events/733374886764786/



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