It doesn’t feel like November.  We've had  some 70° days in Fort Wayne.  Perhaps it is a good time for a blog update.

Wow, it’s been over a year let’s get caught up.

 

Halloween outfit with Rudy (last year)

 

Ashley with Great Aunt Kathy and Mom.  We will be visiting Kathy and Dave in Florida this winter now that they to have move down to the gulf coast

 

December means it is time to be celebrate with the gift of giving.  For over 40 years, inspired by Miss Virginia, people in Fort Wayne have sought food donations and assembled Christmas dinners of turkey and all the fixings for several hundred families each year.

Ashley got us involved a few years ago.  The current organizer, Suzie Beard, worked at Matthew 25 a free health clinic in Fort Wayne when Ashley was in high school.  Both Ashley and Austin Miles volunteered at the clinic while in high school.  How we have the pleasure of playing a small role in this very noble cause.

Ashley adding gifts to the meals.

With Suzie.

 

2015 starts off with our annual trek down to Florida. 

Ashley with Grandma in Naples.

 

On the beach in Marco Island with Miles. 

 

A trip to see George (her ADEM soulmate) and his family. 

 

George’s sister Ana and brother-in-law Tony hosted our get together at their home and we had the pleasure of visiting with several of their family members.

 

We occasionally have issues with Canadian Geese.  In Miami the pesky bird is Peacocks!  Their beautiful until they land on your roof with all the grace of a 747.

We celebrated Rudy’s 1^st birthday on St. Patrick’s Day.  He thinks he owns the place.

 

In April we attended the ‘Kelly Tough’ event in Fort Wayne.  With former NFL quarterback Jim Kelly and his wife Jill sharing how their faith helps the deal with the loss of their son who was born with a terminal illness.

 

This spring our church St. Vincent's had a retreat for parishioners with disabilities. 

 

June was a busy month –

Cousin Alex’s wedding where Ashley was dancing with everyone including the groom and...

Great Aunt Kris.

 

The 3^rd week of the month had us venturing down to our 8^th Transverse Myelitis Association camp.  This is our fourth camp at Camp for Courageous Kids in Scottsville, KY.  Fun times with Sandy and Pauline.

 

The end of June marks eight years since Ashley's 'encounter' with Acute Disseminated Encephalomyelitis (ADEM).  She continues to work hard and is still confident that she will recover.  Getting flowers every year from friend Emily reinforces her motivation.

 

We all went to a Fort Wayne Tincaps (minor league baseball) game where we caught up with Aunts Janet and Ann.

 

The best thing we ever had our neighbors the Markley's do was putting in a pool.

Ashley is working out three days a week at Turnstone.  This is arguably one of the nation’s top facilities for exercise, sports, recreation and day programs for people with disabilities.  With an expansion this year the state of the art facility is over 190,000 square feet.

 

Ashley and trainer Emilee.

 

As summer was winding down Ashley made a donation to Locks-of-Love.

September is birthday month for Ashley.  We had several family and friends over to celebrate.

 

The next day we participated in a 4-mile run/walk with several thousand others in the Fort-4-Fitness activities. 

Can you spot Ashley?

 Running with the pack

Henry and Cheryl weaved their way up to find us.

 

We dog sat for a few weeks for friends.  Coby was a good dog, but I think we’ll stick to one

 

Ashley had a procedure to lengthen her Achilles Tendons.  This means being in casts on both legs for six weeks.  After two weeks the doctor checked the surgery site and everything looked good.  It was time for re-casting.  Ashley had her choice of colors.  With Halloween approaching and the Cincinnati Bengals undefeated she decided to do an Orange/Black combination.  Halloween was dry and not too cold for the tricker-treaters.  The Bengals are still undefeated.

The casts come off on November 16^th.  Hopefully that won’t jinx the Bengals.

 

Thank you for your prayers.  Ashley sends her love.

October 7th

Although the weather was mild this summer that term does not describe Ashley’s summer.  In addition to getting Rudy to several obedience classes and keeping in shape with her therapeutic fitness sessions at Turnstone she found time for…

Attending her 7^th Transverse Myelitis Association (TMA) camp in Kentucky

-Going to three weddings

-Hosting a baby shower

-Visiting five new babies of family’s and friends

-Watching two Tincap baseball games

-Spending time with Grandma & Grandpa on their trip back to Indiana

-Catching some rays at Lake Freeman and Lake Michigan

-At the TMA fundraising dinner in Columbus, Ohio

-Soaking in an IU game in sunny 80 degree weather and the very next weekend weathering rain and wind in sub 50 degree Notre Dame

Our neighbor’s oldest daughter was married in July (writer’s side note: both the bride and groom went to Ball State so you know that this was a match made in heaven).  It was a beautiful ceremony and wonderful reception. 

A couple years younger than Ashley, their daughter Chelsea sought Ashley’s advice in selecting high school courses.  Upon discussing her choices with her father he sought assurance that she thought this was the appropriate mix of studies.  Her response was, “Dad, Ashley Harrington recommends it.”  At the end of our cul-de-sac there was no greater educational authority as Ashley.

In July we ventured south to Scottsville, Kentucky to attend our third TMA family camp at the Center for Courageous Kids.  The weather was great; we had some awesome sunsets. The camp’s staff was superb.  We have always had a positive experience at camp and yet this year they seemed to raise the bar when it came to staff-camper interaction.

Ashley and Pauline                                                                       Sandy

Messy Games!

Ladies Makeover Night

A beautiful day for a horse ride

The educational sessions were informative and well presented.  Each year the number of professionals from doctors, therapists and researchers focused on these acute demyelinating conditions grows.  This is leading to insights and more importantly, an improved dissemination of advancements getting to the individuals and caretakers dealing with these conditions.  It is a blessing to be part of a community that is proactively seeking solutions.  The annual camp is a wonderful opportunity for us to renew those connections and capitalize on what we learn that can be applied to assisting Ashley in her recovery.

If you look very closely at the far left...

It's Ashley and Dr. Kerr

with Mom & Dad hiding

Ashley and Mary hosted a baby shower for her cousin Jessica in early August and was visiting their new baby before the month was over.  By the end of September two more cousins and two good friends also had new arrivals.  Ashley was cooing over a lot of babies.

Also during the month of August Grandma and Grandpa sought refuge from the Florida heat ‘back home in Indiana’.  We offered sunshine, low humidity and of course, Ashley’s smile.

With Grandpa and Grandma at a Tincap's Game

Dancing up a storm at her St. Mary's classmate Andrea's wedding 

Wishing Emily good luck before she walks down the isle

At Beth & Craig's boat on Lake Michigan

September means birthday time for Ashley and we celebrated her 27^th along with her Uncle Mike and Aunt Barb.  Her Cousin Jessica came with her children and we had a great evening.

Last week in September - IU vs Maryland in Bloomington - Sunny and 80

First week in October - Notre Dame vs Stanford at Notre Dame - Rainy and 50; 

tailgating with the Hogans

Ashley has been taking Rudy to obedience classes.  It’s as much training the people as it is the dog.  Lately Ashley’s vocalizing has improved and Rudy is replying to her when she calls him and is beginning to responding to her commands.

At the end of September we went to a fundraiser in Columbus, Ohio for a TMA.  We enjoyed seeing people we normally only see at the TMA Camp and meeting others involved in TMA that do not attend camp.  Dr. Greenberg, who was the first specialist we spoke with when Ashley was stuck with ADEM was the featured speaker.  He delivered an interesting speech with the wit we have come to enjoy.

With Dr. Greenberg at the TMA Dinner

Immediately following his speech there was a video to thank Sandy Siegel.  Sandy has been the president of TMA since its inception 20 years ago.  We had the pleasure to be in the video and to express a token of our appreciation for all he and his wife Pauline have done for the TMA family.

Speaking of the 20^th anniversary of TMA my wonderful sister Lynn took the TMA 20/20 challenge.  The goal was to raise $400.00 via a $20.00 personal donation and getting 19 friends to do likewise.  As of this blog posting Lynn’s efforts have well surpassed the goal with a total of $1,015.00.  Lynn’s efforts and the generous contributions from many wonderful people have Lynn ranked as the third largest group of contributions.

If you are looking for a worthy cause to support we sincerely request that you consider a donation to the Transverse Myelitis Association (TMA).  We cannot fathom how we would have addressed Ashley’s condition without the direction TMA has provided us.  It funds the camp we attend each year.  The association put us directly in touch with the most knowledgeable resources available to address the myriad of issues and complications that accompany ADEM.  It has made it possible for us to have hope for a continued recovery for Ashley.

You can join Lynn’s campaign at:

  https://www.crowdrise.com/the-tma-20-for-20-campaign/fundraiser/lynnharringtongiesle

Thank you, and may God bless you and yours as we await the arrival of another winter.  To plagiarize the popular Irish poem a bit, “May the road rise up to meet you, may the wind always be at your back, may the sun shine warm upon your face, and may the snow fall softly upon your fields, never clinging to the street!”

June 8th

TGIS – Thank Goodness It’s Summer (almost).  We had more than our fill of winter weather this last season.  The spring has been wonderful and Ashley is enjoying it.

Ashley holding her friend Erika's baby Eva.

Up until April Ashley continued to go to Speech therapy almost daily and working out at Turnstone three times a week.  Then she started to feel ‘under the weather’ and it just seemed to linger longer than a common cold should.  Well it turns out Ashley had mono; as in Mononucleosis, or as we use to call it, ‘the kissing disease’.  If that is how she contracted it she’s not kissing and telling…

Any illness has a pronounced negative effect on Ashley.  It makes her lethargic and most every task is more difficult to complete.  The months of April and May were not productive from a rehabilitative standpoint, but Ashley is regaining her strength and drive.

One thing to brighten Ashley’s outlook is a recent gift from her grandparents.  She is now the proud owner of a Maltese puppy.  Ashley accepted the early birthday gift idea in mid-March.  We contacted Ashley’s Great Uncle Dave who has a friend that is a veterinarian and also had Maltese dogs as pets. Within a couple days we were contacted by a breeder whose Maltese had delivered a litter just days before.

Ashley had already decided on a name, Rudy, after the small walk-on football player at Notre Dame (as featured in the movie “Rudy”).  She relates to the determination and hard work ethic Rudy possessed.

The fact that Rudy was born on St. Patrick’s Day makes it even more fitting.

 

Ashley with Rudy leaving the breeder's home in Valpo.

 

The newest member of the family.

 

Rudy is either full of energy and ready to play...

 

or out cold.

 

Of course Rudy has a Notre Dame bed!

 

Rudy is 80% hair and 20% body.  He practically disappears taking a bath.

 

 

Ashley and Rudy lounging poolside.

 

In July Ashley will be making her third trip to the Center for Courageous Kids in Southern Kentucky for the Transverse Myelitis Association family camp.  We will have an opportunity to meet with other individuals and families dealing with demyelinating conditions and to learn of the latest advance in therapies and treatment.

 

We hope you have a wonderful summer!

Happy Valentine’s Day from Ashley!

It has been a  long, cold and snowy winter and it isn’t over yet.  Perhaps we should have realized it was going to be an exceptionally cold winter when attending a Bishop Dwenger football playoff game in mid November with temperatures around 20 degrees.

Ashley cheering on her alma mater.  They advanced to the state finals, but for the fourth time since her freshman year they came up short (this time by one point).

The cold weather has not forced Ashley to baton down the hatches.

In early November we made a couple of trips down to Indianapolis for Ashely’s Vocal Fold procedure and follow up.  The procedure was a success, but it has not made a significant immediate difference in Ashley’s speech.

Ashley in post-op.  The nurses said she was smiling immediately upon waking up and lit up the room.

Ashley continues to go to speech therapy every week day and is working on a therapy regimen that is designed to help her adjust to her corrected vocal cords.  Her spirits remain high and she is still confident that she will get her voice back to where it belongs.

The three day-a-week strength and conditioning that Ashley is doing at Turnstone is paying off.  Her stamina is improving along with the weight/resistance increases she is achieving. Her work outs include walking inside of parallel bars, rowing machine for her arms working with weights and moto-ped for her legs followed by moto-ped for her arms.

Prior to Christmas we had the privilege to once again participate in preparing turkey dinners for families in the area through the Miss Virginia program.  Hundreds of boxes were filled with frozen turkeys, vegetables, biscuits and a lot of love and care.

Ashley was at the end of the ‘assembly line’ placing a gift in each of the boxes.  Pictured with Ashley is Suzie who coordinates the huge project each year.  Ashley first met Suzie when she volunteered at the Matthew 25 clinic during high school.

The Christmas and New Year holidays brought opportunities to visit with family and friends.

 

Christmas day with brother Miles.

Ashley and Hope Ashley

Okay, it wasn’t all snow and cold.  The family ventured down to Naples, Florida to visit with Grandma and Grandpa Harrington.

 

Lunch on the beach

A day on a sunny Naples beach beats...

 

a day in sub-zero Fort Wayne even if the snow looks beautiful on the trees. 

That same view of the back year in the fall is a bit more colorful.

Prior to heading back to the frozen tundra of Northern Indiana we drove across the Everglades to Miami for lunch with George and his family. 

 

George was stricken with ADEM about a year prior to Ashley.  They share that special bond of knowing the challenges each faces.  Both of them also share the trait of being driven goal oriented individuals that will do what it takes to overcome the barriers ADEM has placed in their paths.

 

May God keep you safe and warm this winter and may this coming spring be bright, and blessed for you.

Love Ashley!