Five Years

Yes it has been five years since our world turned upside down.

The good news is Ashley has had a strong upswing in rehabilitative progress. Ashley is fully aware of where she has been and she knows exactly where she is heading; toward a full recovery.  In just this week Ashley has accomplished the following:

-          In therapy she walked using only a standard cane and minimal balance support.  She didn’t merely take a couple steps.  Ashley walked from the furthest corner in the therapy gym to the lobby; approximately 80 feet without having to sit down.

-          With a microphone headset on, Ashley ‘plowed’ through multiple single-syllable spelled out sounds.  Even with the amplification it was soft, but she was adjusting and properly annunciating the majority without having to restate them.

Ashley received a big surprise that no doubt has had an extremely positive psychological impact on her recovery.  Her good friend Holly is getting married this fall.  Ashley thought she was going to a bridal shop to see Holly try on her wedding dress.  Once there Holly asked Ashley to be one of her brides maids.  Needless to say Ashley said yes (through a lot of happy tears).

Speaking of friends, Emily (creator of the Walk, Talk Eat Ashley mantra) is home from law school for an internship this summer and visits with Ashley each week.  They are reading another book together and talking about their weeks.

We have experienced a warm spring since the last posting.  Ashley helped with the Easter decorations. 

While brother Miles was home over spring break we spent a day up in Chicago.  In front of the Hancock Building Ashley posed for this picture.

Speaking of hope, here is Ashley with Hope Ashley.  Hope will turn two this July.

It was a nice day to be outside on St. Patrick’s Day as well.

This August we will be going to a different camp for the Transverse Myelitis Family Camp.  It will be at the Center for Courageous Kids in Kentucky.  Coincidently a former high school classmate of Ashley’s, Adrienne, was a counselor there for two summers while she was in college.

We are looking forward to seeing Sandy, Pauline, the doc’s and all of the friends we have made at the four camps we attended at Victory Junction in North Carolina.  We will be sure to tell you about our experiences at camp.

Summer time means lake time...

In closing, thank you to all of you.  Your continued prayers and support have been what has made it possible for our entire family to keep focused on Ashley’s recovery and to be thankful that Ashley is progressing; even after five years.

March 1st

It has been a mild winter at the Fort. Ashley’s continued motivation to recover has been anything but mild. Voicing has been the highlight most of the past four months. We’re saying ‘most’ because there have been some other areas of achievement that have stood out. Ashley is closing in on five years since that single, radical, demyelinating event stripped life as she knew it from her. We all would have hoped (we certainly have prayed) that she would have fully recovered at this point. That said we have to be thankful for the progress she has made and more importantly the fact that she shows no signs of peaking or slowing down in her efforts to improve.

Ashley, like many others we have had the pleasure to know with a similar condition, is showing that conventional wisdom regarding the time-window of recovery can be shattered when the will to improve is present. So we will get into specifics, but let’s take a look at what Ashley has been up to…

Mid November we were out on 4 mile walk organized by a couple of Ashley’s speech therapists that raised funds for a local food bank. It was sunny and although the picture shows Ashley and Mary bundle up the coats were quickly shed.

Ashley knows how to keep her dad happy. For his birthday she baked him a pecan pie adding extra pecans to it. That works!

Within a month of tailgating before a Notre Dame football game with St. Mary’s classmates Ashley met up with Andrea for lunch and a visit in Ohio. We split the distance in the drive between Fort Wayne and Youngstown. We thoroughly enjoyed our visit.

On the way home, we took 2-lane highways with a few turn offs, Mary and I were talking about something when Ashley interrupted. She got my attention and pointed back over her shoulder. I looked at the GPS (had the volume off) and sure enough it flashed ‘recalculating’. I had missed our turn. Thank goodness Ashley paid attention and remembered our route. It’s anyone’s guess how long we would have wandered along before realizing it.

Ashley’s artwork from our October trip to Victory Junction was front and center as part of Thanksgiving decorations.

Little brother had to work over Thanksgiving (videographer for IU football) so we traveled to Bloomington so the family could be together. With the students home for the holiday it made getting around town on a home football weekend a breeze.

Just prior to Christmas we had the pleasure of helping pack donated items for Christmas dinners going to local families. Susie, who Ashley worked with when she volunteered at Mathew 25, asked if we would help and we are grateful she did.

Santa was good to Ashley and Miles.

During Christmas break IU and Notre Dame faced off in Basketball. The ‘house divided’ was apparent! IU prevailed, but Ashley thinks that Notre Dame’s performance since shows they could take them. Perhaps they will meet again during March Madness.

Did we say it was a mild winter? You wouldn’t know it from this shot,

but Ashley is all smiles because she knows warmer days are ahead and in the not too distant future.

At the end of January we visited Grandma and Grandpa in Florida. Sun every day and temps in the upper 70s and low 80s. Ashley had no problem acclimating.

No trip to Florida would be complete without a visit with George and his family in Miami.

George was stricken with ADEM about a year before Ashley. He and Ileana treated us to lunch at a Cuban restaurant. The food was sensational. The visit was priceless.

Ashley made fresh orange juice with grandma looking on.

Did Ashley get to the beach? You betcha!

So what has been the latest with Ashley’s therapy…

First of all the fact that Ashley is still getting Physical, Occupational and Speech Therapies every weekday is a testimony to her hard earned, continued progress. Every 90 days Ashley has to reach pre-determined goals to justify the continuation of therapy. Mid January marked 4 years of out-patient therapy.

She continues to work on coordinating the mechanics of speech. Usually her voice is quite soft, but at other times she has everything working as it should and will actually state a word or even a short sentence clearly and loud enough to be heard across the room. There are still letters and word structures that Ashley struggles with but we now know that speech is coming back and she is making improvements each week.

Ashley has speech home work and it not shy to initiate it on her own. One exercise is making a loud short ‘a’ sound. She can now do it for up to five seconds. The most challenging speech exercises involve controlling her breathing. Ashley struggles with holding her breath and inhaling and exhaling with a specific rhythm. As with the other challenges she has faced Ashley will conquer this one as well. Being able to ‘rejoin’ the conversation will be a wonderful achievement. There is a lot Ashley has to say and a lot of folks that are waiting to hear her tell it.

When it comes to physical therapy Ashley is not afraid to let them see her sweat. She's working hard for extended periods on the treadmill and elliptical machine. Ashley has now walked a couple of times totally independently with a walker.

Ashley is working on getting in and out of her wheelchair without assistance. She has been able to transfer from her chair to the raised exercise platform in our family room a few times.

Shifting to Occupational Therapy Ashley is making progress with her right arm that still has a lot of tone. Last Father’s Day she reached out and grabbed a cookie with it. She has now been able to grab other objects and move them, but it takes a lot of concentration and effort. Of course Ashley is putting in the extra effort.

Hopefully as the weather improves we will get out more and have other great stories to share with you soon.