October 27th

The blog’s editor has bowed to pressure from the blog’s namesake and is doing an update prior to the current six month cycle.  Ashley has a lot of activity to catch up on.  Let’s get to it!

In June Ashley’s insurance for physical and occupational therapy was discontinued.  That may sound like a setback.  In reality it is not.  First of all we have not known anyone that has had more daily therapy than Ashley.  Secondly she was able to transition to a facility in Fort Wayne called Turnstone. 

After three months of physical and occupational therapy at Turnstone Ashley has entered their fitness program.  Now Ashley works with a personal trainer three days a week and she is improving her strength.  She loves the facility and the staff.  They are highly motivational.  Ashley, having been a competitive athlete since age of seven, is inspired to reach her workout goals and to set new ones.

Ashley continues to receive speech therapy daily at Lutheran Hospital Therapy.  On Monday November 4^th Ashley will have an outpatient surgical procedure on her vocal cords/folds at IU Hospital in Indianapolis.  She will undergo Vocal Fold Injection Augmentation. 

Those who have heard Ashley speak can attest to her ‘breathy’ voice.  She has a hard time projecting her voice and she runs out of breath quickly. 

In early October Ashley saw a specialist in Indianapolis who ‘scoped’ her vocal cords while Ashley spoke.  The doctor determined that Ashley’s vocal cords were healthy and moving properly.  The problem appears to be that there is too big of a gap between the folds when Ashley is forming words. 

Fortunately there are no incisions to conduct this operation.  Ashley will be sedated while a substance is injected into the vocal folds to enlarge them slightly.  We expect to be able to return to Fort Wayne that night following the procedure.

We are asking for your prayers that the procedure goes smoothly and is successful in aiding Ashley’s speech.  Ashley works extremely hard at speaking.  It would be such a blessing for her to be able to express herself more fully.  Ashley still has maintained her insight, compassion, wit and humor.  We want everyone to experience hearing it again.

Once again we were blessed to attend camp with other members of the Transverse Myelitis Association in July.  This was our second year in a row to go to the Center for Courageous Kids in Scottsville, Kentucky.  Everything from the campers, staff and activities to the weather was fantastic.

 

 

We always say that our annual camp is what we need to ‘recharge our batteries’ for another year.  We always come away from the experience with a feeling of higher confidence in what the future holds for Ashley’s hard work and the progress being made on the medical front to address re-myelination.

September and October were chocked full of activities for Ashley. 

 

There was the Tin Caps baseball game with other members of the Fort Wayne Traumatic Brain Injury  Group. 

 

 

Popcorn Fest in Valpo. 

 

 

An IU game where Ashley got to sit with Mile for the first time (he was always filming games while he was a student.  In addition she caught up with three of her Center for Courageous Kids (TMA Camp) counselors during the pre-game tailgate.

 

ALS Walk for Aunt Donna in Indianapolis. 

What were you doing on the first day of fall.  Ashley tested the theory that at equinox you can balance a raw egg on it end.  Turns out it works! 

 

Ashley showed her cousin Angela around St. Mary’s College and Notre Dame University on game day prior to the USC game.  We managed to be right at the front of the formation of the marching band's march to the stadium.

 

 

As 2013  draws to a close Ashley and the rest of the Harringtons send wishes for you to be able to look back on the year with a smile on your face and excitement for what 2014 will bring you.  May God bless you and all that you do.

Six Years

Let’s take a look at what Ashley has been up to the first half of this year…

Ashley is still going to Lutheran for voice therapy five days a week.  She continues to make slow but steady progress in getting her voice back.  Her focus is on breathing to get her diaphragm stronger.

Ashley is now going to Turnstone for physical and occupational therapy.  She is only going two days a week, but she is excited to capitalize on the change and continue to make progress.

After more than five years working with many of the same therapists it was emotional to change, but Ashley still gets to see her old therapists since she still goes to Lutheran for voice therapy.

Part of the marked progress Ashley has made has been walking with a walker.  Before transitioning from Lutheran Ashley walked more than 150 feet without assistance or stopping using the walker.

Ashley continues to improve maneuvering around the house with her walker.
 

Ashley continues to stay in touch with her friends.  Visiting with Holly and Adrienne.

Ashley read ‘Dog Days’ by Barbara Satler this winter.  We met Barbara at Victory Junction.  Barbara has Transverse Myelitis and is very involved in TMA.  She combined her experience as a former judge and her love of animals in writing her first novel.  She is working on her second book and we are anxiously awaiting its release.

In May we ventured down to Bloomington to watch brother Miles graduate with honors from Indiana University.  Ashley is excited that her brother will be moving home to being his career now that his training in Indianapolis is complete.

Since baptism, a month after being born, Ashley has been a member of Saint Vincent’s Church in Fort Wayne.  Ashley went to grade school and junior high at St. Vincents (mom was her junior high religion teacher) and her strong faith has been nurtured in this wonderful parish.

Monsignor John Kuzmich has been the pastor for 29 years.  He retired this week and before leaving Fort Wayne he paid us a visit.  He gave Ashley a blessing, said Mass and gave us communion.  After words he gave Ashley a statue of Mary.

Monsigner John built our parish into the wonderful community that has provided us with so much support.  We will never be able to express how truly blessed we have been to have so much love and prayer poured upon us.  From the bottom of our hearts we thank, and will keep Monsigner John in our prayers. 

This weekend we attended the graduation party of Cameron Tripp.  Cameron is the son of Renee Sherwood Tripp (the ghostwriter’s cousin).  All of the Sherwoods and all of the Harringtons were there. 

Ashley is pictured here with her Great Aunt Donna who has ALS (Lou Gerhig’s Disease).  They have a special bond since, among all of us, only the two of them fully understand what it is like to have your abilities robbed by a neurological condition.

Although Ashley will continue to work hard all summer she will find time to wander next door and take advantage of the Markley’s pool. 

Pool time is guaranteed to put that famous smile on Ashley’s face.

 

In about a month we will be going back to the Center for Courageous Kids in southern Kentucky for the Transverse Myelitis Association camp.  It will be a time to catch up with friends and to learn the latest in the advancing research on demyelinating conditions.

Ashley appreciates all the prayers you offer up for her.  She feels the power of those prayers and she, along with all of her family, thank God for you!

P.S. Thanks for the flowers Emily!

Happy New Year

Since Ashley was stricken on June 29, 2007 the end of the calendar year marks the 5.5 year mark of her recovery.  With God’s blessing Ashley continues to make progress.  The most dramatic visual progress is her ability to transfer from the bed to her wheelchair all by herself. 

Most mornings dad brings Ashley downstairs from her bedroom and she catches a bit more sleep in the bed still in the living room until she and mom begin their day.  Until recently Ashley would call out if she wanted to get up early.  Not anymore.  We now place her wheelchair next to that bed along with placing slip-on shoes in front of it.  Now if Ashley wants to get an early start she is able to sit up in bed, slip on her shoes, stand up, grab ahold of the chair’s armrests and pivot to sit in the chair.  She propels herself forward with her feet.

She may pick out some clothes, go into the kitchen and grab a water bottle, or even turn on the TV.

Speaking of stairs Ashley is sure-footed enough that mom is now comfortable guiding her up and down the stairs.

Her coordination with her left arm and hand is also improving.  Using a fork or spoon Ashley continues to become more independent with eating.

Voicing is still a challenge.  One of many hurdles Ashley is still focused on overcoming.  Ashley is still in outpatient therapy every weekday.  In Speech she is continuing to work on the formation and, just as hard, on the articulation of sounds and words.  Slowly but surely Ashley is increasing the range of speech. 

When Ashley can coordinate her breathing with her voicing there are wonderful results.  She can clearly state a short sentence.  Even on phone calls she has been able to state things that are clearly understood. 

Communication can be frustrating at times.  Then again when we are patient with Ashley her personality will often come through.  While visiting relatives in Valpo this past weekend Ashley suffered through a corny joke dad relayed to her Aunt Beth.  As a follow up Ashley stated (some words clearly and some with spelling), “I have to live with him.”

Now it is time to get caught up on the last half year.  We will let pictures do most of the talking…

 

It was a warm, make that hot summer.  Thank you Markley’s for the pool time!

 

Nothing beats a visit with Grandma and Grandpa at the lake during the summer.  Ah those lazy days of summer…

Standing for a stretch at Holly’s wedding shower

 

Visiting with St. Mary’s classmate Andrea

 

Center for Courageous Kids camp in Kentucky with the Transverse Myelitis Association.  Can you guess the theme?

Wild, Wild West.

 

 

 

Making a pink race car

Ashley and Libby, go IU!

 

Dancing with camp director Ed

 

Two very serious men… Sandy, President of TMA; Dr. Kerr, leading expert in acute disseminating disorders.  They must have taken a shortcut through the paint war on their way to a board meeting.

 

Let’s ride

Let’s paddle

 

Come on in the water is warm

 

Ashley should be designing race cars.  Her ‘Pink Panther’ car sprang down the track

 

Ashley first heard of the Center for Courageous Kids from her childhood friend Adrienne who worked there during summers during college.  Adrienne still had several friends working at camp so we took this photo and Ed emailed it to Adrienne who was still serving with the Jesuit Volunteer Corp in Nicaragua. 

As a sidebar, the author takes some solace in the guilt he feels for this record gap in posting an update.  That’s because Ashley saw Adrienne for the first time in two years at New Year’s Eve Mass.  Adrienne recently got back from her service in Nicaragua.  Ashley provided Adrienne with a ‘two-arm’ hug as promised!

 

Just had to throw in this photo of Ashley’s favorite flower; the gerber daisy.  Although it is an annual this flower bloomed for a second year.  It endured the record heat of summer and remained blooming through the first frost of the year.  Perhaps it was inspired by Ashley.

 

Between August and November Ashley attended two weddings for friends and was a bridesmaid in another.

Rachel and Ashley dancing at Rachel and David’s reception.  These two girls swam year round and worked together at Glenaqua pool during the summers.

 

There was a lot of catching up with other swim friends including the Parker sisters.

 

On labor day weekend we met up with all the extended Harrington family and went to St. John’s Indiana (S.W. of Valpo) to the Shrine of Christ’s Passion.  This was a half-mile narrated walk including 40 beautiful bronze statues.  At the top of the hillside of the shrine is this 33 foot tall statue of Mary, "Our Lady of the New Millennium" at St. John's church.

 

No Fall is complete without a trip down to an IU game and a visit with brother Miles. Ashley you look like you own the place.

 

During an IU football bye week we met up with Miles in Indy to watch Wade Markley’s Butler Bulldogs put the bite on the Campbell Camels.

 

In October Ashley had the honor of serving as a bridesmaid in Holly and Tyler’s wedding.

 

 

 

Miles made it up and shared a dance with Ashley.  You should have seen his Gangnam Style dancing!

 

 

Dad loves it when Ashley bakes during therapy.

 

A visit with Emily during Fall break.

 

Halloween with Ann…

And Nixon?  Oddly 18 minutes of Halloween candy was missing.

 

With Erika and her parents at Erika and Brett’s wedding reception. 

Sam, Holly and Ashley

Finishing up Christmas decorations with Aunt Lynn…

And Angela.

 

Christmas means cookies and Ashley is on it.

 

A trip to Grandma and Grandpa’s winter home in Naples, FL is always a welcome break from the Indiana winter.  For the first time in six years Miles was able to make the trip with us.

Lunch with the grandparents in Marco Island.

Taking in the sun at Fort Myers Beach.

Who dropped by but Santa.

Sunning at the pool beats shoveling show.

 

That can only be topped by sunning on the Gulf of Mexico…

 

or watching a sunset.

 

 

 

This is hard to make out, but it is a 180 degree panoramic photo of the sunset over the gulf to the right with Ashley and Miles watching it from beach chairs on the left.

 

With Notre Dame going to the BCS football Championship Game ND T-shirts had to be among the Christmas presents.  Hopefully we will be wearing Indiana University T-shirts for the NCAA basketball championships.

 

Thank you for all your prayers and support during 2012.  We ask for your continued prayers for Ashley's recovery in 2013.  We will keep all of you in our prayers for a blessed, healthy and prosperous 2013!