Hope4Harper reviews 2015 month-by-month

January and February were pretty uneventful as Harper and I happily recovered out of the hospital and at home from our Christmas 2014 car wreck and flu.   We were well enough by the end of the month to go ice skating and celebrate big sister Lily turning seven.  I do like skating but prefer not to be cold!

In March Lily debuted in her first ever play “Annie” dual role as little orphan Kate and the Apple Seller.   If Harper never sees Annie or hears the song “tomorrow” ever again she will be happy.  And our beloved Nurse Jaunece had baby Livie who Seth absolutely adores and Harper could care less about. March Jaunece's Baby

April quickly arrived and we had our annual Hoarding 4 Hope Sale and Harper turned the BIG 5 with an awesome Rapunzel themed charity party at Spirit Horse Therapeutic Riding Center where we were able to help them raise a small amount of funds to keep Harper’s pony, Spirit, fed.

May 2015 ArkansasMay found us on a family trip to beautiful Arkansas where we watched Aunt Breezy graduate.  Picture us all in the front row in handicap seating where Dustin smiled and told all the graduates “this” was their future (as we tried to keep three kids contained and quiet during the commencement ceremony).  We found it amusing watching many of their confused faces as they had zero understanding of what we meant.

June was magical as Harper’s year long wish finally came to life!  A private sanctuary was built where she could go and be in sunshine and hear the wind blow in a climate-controlled screened in porch. And YES there’s a swing. july 2015 Wish With WingsWe spent about 4 hours a day in this room until just after Christmas. Thank you, a Wish With Wings!

In July we hosted a very successful 2015 Love Day, where the focus was on kids and fun rather than abilities and disorders.  Cupcakes, splash pads and park equipment made for an exciting eventful day full of Love with friends and family. I also won a Nordstrom shopping spree thanks to Schaeffer and her blog Pinterest Told Me To. What a fun day!!  shopping spree JULY

And at the end of the month Harper was crowned 2015 National American Miss Cover Girl. Princess Harper participated in a pageant expecting only to make new friends and wear a pretty dress.  Instead she came home with so much more:  5 trophies, 2 crowns, a new set of friends and being part of something big for a lifetime, the National American Miss Family.

August led us to Vesicostomy surgery ending Harper’s 7-month struggle with chronic Urinary Tract Infections along with the loss of her first 2 teeth.  Soon after we had our first household experience with lice.  I hope we NEVER go through that again!  It seemed like a never-ending nightmare. Feb SMILE

At the start of September we found ourselves at Plano Presbyterian Hospital on IV fluids talking of continuous feeds for increased fluid intake, at home hospital beds for respiratory issues and elevation of lower limbs to prevent frequent swelling due to lack of circulation.  We were discharged just in time for the Hope4Harper 4th annual Run 4 Hope and a week later celebrated baby brother Seth’s first birthday.  Oct 2015 With brother

Followed by October where the kids received their first ever brand new bicycles thanks to Spokes 4 Hope.

Harper Bicycle OCT

November was a whirlwind of visits to every specialist imaginable before our insurance deductible started over.  Lab work from one of those visits led us to an Endocrinologist where we have now been given the opportunity to try growth hormone therapy with Harper in 2016 in an effort to gain strength and possibly mobility.

Finally here we are in December, getting ready to say goodbye to another year.  Dustin and I traveled without children for the first time in two years to the American Epilepsy Society 2015 Annual Meeting in Pennsylvania where we met with Dr Francis Jensen, head Epileptologist of our research project and her graduate assistant and laboratory team leading the project.

2016 brings new hope for Harper and us all!

Next month Dustin and I will celebrate 13 years of marriage and move to a handicap accessible home where Seth will finally have his own room. Harper will be able to easily access any area of the home. We are very humbled by this opportunity that has been presented to our family. I am torn, and it is sad to leave Harper’s swing porch behind. This last minute year-end surprise to us all is well worth it as we look forward to what 2016 will bring. More on that soon! Until then, we all wish you a Happy and Blessed New Year!

Extraordinary Family JUNE

photo by Desiree Chapman, Extraordinary Family Photography