Thursday, December 9, 2010

December 9th

What a couple of months Ashley has had.

Our last update was just prior to our Victory Junction Camp Weekend with the Transverse Myelitis Association. Our third trip; what a blessing. We caught up with several old friends and established many new ones that we will treasure.


Out on the dance floor with Crew Chief Vandy and Mom


Ashley is asking Crew Chief Bill if she can have the Taylor Swift pickup truck when Victory Junction isn't using it.

So are we close or what? (l-r) Jeff, Pauline, Mary, Dr. Sim, Ashley & Sandy

Pauline and Sandy's son Dave and his wife Kat volunteered and kept Ashley's smile bright.

What made this trip stand out was that it provided an opportunity for a historic gathering of people with ADEM. Below is a photo of 6 individuals with ADEM (not counting Betty Boop in the VJ theater). At no other time, or place, have there been as many gathered. It certainly puts into perspective how rare it is. With that said we are extremely fortunate to have such a dedicated support group and collection of doctors, researchers, therapist and specialists that are dedicating themselves to healing demyelinating illnesses.

Nice October weather allowed Ashley to take a spin on her bike. Yes, bike. Ashley now has a 3-wheel bike. We have every expectation that come spring Ashley will be ready to do some real biking.

Ashley assumed the role of handing out candy on Halloween. She had a busy night. She donned her UVa Medical Center Neurosurgeon garb as a costume.

Ashley’s new netbook (gift from Midwest Orthodics) is getting a lot of use. We have loaded MicroSoft Office and will be installing speech therapy related tools. We have joined the legions of folks that are now Skyping on line (what a great way to communicate). Ashley is hoping for more eBooks for her Kindle for PC application (we can adjust the font size and Ashley can advance pages by touching the screen) and audio books that she can also play on the portable PC. We feel pretty confident that she is on Santa’s good list this year.

We had a download issue on the WNDU news story link that covered Ashley getting her PC. That has now been fixed and can be viewed from the link in the right column on the blog.

On November 2nd Ashley cast her first vote. As such if she wants to complain about anything political she has earned the right.

The crowning event in November is a significant milestone that Ashley reached. Just before Thanksgiving Ashley had her feeding tube removed! Since mid July Ashley has taken all her nutrition and hydration orally so she was given the green light to have it removed. It was an quick in-office procedure and it has healed up nicely.

December 2010 will be marked in the Ashley archives as a pivotal time in her speech recovery. The mechanics are coming together. Ashley is forming words and is making dramatic improvements in pushing air through her vocal cords to get recognizable sounds. While there is still a long way to go the progress in the last couple of weeks has been amazing.

Another area of major improvement is with Ashley’s right arm. This is not a photo-opp. Ashley is now able to hold the posts on the stationary bike with both arms and petal continuously. Note that she does not need an ace bandage on her right hand to keep it on the post.

We continue to be in awe as Ashley perseveres in her recovery. We receive words of encouragement everywhere we go and know that you are all continuing to pray for Ashley. We thank God for you all.

Have a Merry Christmas, Happy Hanukkah and a blessed New Year!

8 comments:

Adam said...
This comment has been removed by the author.
Adam said...

Ashley! I'm thrilled to see the exceptional progress you're continuing to make! Despite my busy school schedule down here in Indy, I make sure to never miss an update on you. Rest assured, I will continue to not miss a single one in the future. All my best!

-Adam Whitman

Emily said...

Ash--

An update! Yay! And what an update! I am so excited! (Hence the overabundance of exclamation points this early in the post!)

I am so happy for you that your feeding tube was removed. There was no doubt in my mind you'd be able to meet your doctor's goal of oral liquid consumption. Once again, a goal was placed in front of you and you said Bring It On. You have such wonderful determination and strength. You are my inspiration whenever I feel overwhelmed. You keep fighting-- and winning. You're amazing.

And did I read correctly? Big progress on vocal works? That's so great. I cannot wait to hear your beautiful voice. I know it's only a matter of time!

What a cute new bike! I bet that will be nice in the spring, a little change-up for the exercise routine. And your neighborhood is so nice-- perfect place to ride!

Everything has been hectic on my side. Two weeks of finals! One week down, one to go (four finals total, 2/2). I understand and appreciate the time they give us to adequately prepare for our exams, but it feels like the sloooow rip of the band-aid... Dragging it out is driving me nuts! Soon I will be in Fort Wayne, for almost a month! We get a little bit longer than the undergrads. I hope that you will find time in your busy schedule to see me. I haven't seen you since your birthday!

My entire schedule will slow down next semester. Fall semester we had 17 credit hours; Spring semester we will have 12. It will be a most welcomed change of pace. Hopefully that means I'll get to go to FW more often and see your beautiful face.

Well, studying calls its horrible siren song.

I love you, I miss you. Keep smiling that beautiful smile. Day by day, you make progress. Keep up the amazing work.

God Bless,
XoXo,

Emily*

fuzzywaters said...

Ashley

It is so exciting to see the feeding tube was removed. I cant help but think this will make many things easier. We wish you a Merry Christmas and a blessed New Year. You are in our thoughts and prayers every day Ashley.You are an amazing person, don't forget that, I don't.
I hope to run into you one day in the near future.
Love Chris and Helen

Adrienne said...

i love you ash! just wanted to remind you of that! i´m so proud of all your accomplishments. just because i am far away does not mean you are not close to me in my heart. keep working hard!
love and good wishes,
adrienne

Anonymous said...

Ashley,
It is so nice to read your updates. You are doing an awesome job in rehab and I am so proud of you! I look forward to each posting to follow your progress. Keep up the great work.
God bless,
EMartin

Anonymous said...

Dear Ashley,
I'm sorry that I haven't been in touch recently! I've been reading up on your progress and I'm so happy to learn that your recovery is going so well. I can't wait until we have a conversation again and laugh about the good times freshman year. Although you haven't heard from me recently, know that you are ALWAYS in my thoughts and prayers. Keep being strong Ashley! I look forward to the next time I see you. Happy 2011!
Love,
Kelly Hogan

Anonymous said...

Thinking of you and hoping you are keeping warm despite all the snow Mother Nature is bestowing upon your part of the country. I'm looking forward to reading about all the great progress you are making!

Trish (FL)