An apology is due to the faithful followers of Ashley’s blog. Once again the editor failed to get out the weekly update. Quite frankly the busy holiday weekend has me feeling like Cinderella trying to beat a midnight deadline to get this to the presses.
Had I posted an update last week the lead would have been the outcome of her check up with her neurologist the Friday before. Once again medicines for Ashley have been reduced. To give you an idea of how well Ashley is progressing consider this…
When Ashley came home in January of this year she was on fourteen (14) different medicines. Today she is on four (4) different medicines. One of those is an antacid she takes due to her liquid nutrition. Of the other three one has had its dosage reduced 50%. The other two have had their dosages reduced 75%! This is good news on two fronts. The obvious is that Ashley is progressing to the point she needs less medication to address the affects of her condition. The other is that she is not encountering the side affects that came with some of these medications. The biggest issue was drowsiness.
It is hard enough when your body isn’t cooperating with what you are telling it to do. It only made it harder with have to fight off constant fatigue. Now with this latest round of medicine reduction we are confident that Ashley will make even more gains.
We just returned from spending the holiday weekend at the lake. We have been blessed with wonderful weather this summer and have taken advantage of it. Ashley has loved every minute when she has had an opportunity to get outside.
Ashley has been moving her left arm in a more coordinated fashion lately. When we got home today she reached up and removed her sunglasses from her face. Later we asked her to put down her right arm. She reached over with her left are to her right shoulder and worked her way down her arm to her wrist and pushed on her arm. We watched in amazement.
It was wonderful to hear from Jodie (who is from London, England) who had ADEM and can relate to what Ashley is going through. She is one more person that is a role model for Ashley
Thank you for your prayers. We hope as we head into September you have all had a wonderful summer.
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5 comments:
Ashley--
Hey, girl, heeey! I miss you so much. I have been meaning to call you, but my phone's charger is in Cleveland and holding a phone conversation was not really doable with the battery deal. I apologize a million times over, though, for not talking with you yet!
It's been forever since I've seen you, but I've been pretty darn busy and it sounds like you have, too! That's so great that you're moving your left arm more "coordinatedly" (I just made up a word). And taking your sunglasses off your face? Um, AMAZING!! Yay!
I hope you're enjoying this weather and taking full advantage to go on walks. How's your new computer coming along? And how have you been doing with walking around the kitchen/foyer/bedroom/dining room?
That's so great to hear about the medicine reduction! I'm praying for you all the time, Ashley. I miss seeing you every week, but I'll be home again in a few weeks-- hopefully I'll get to squeak in a visit! My cousin Mike is getting married! Yay!
Alright, homework calls (in a loud, annoying voice), and I must answer.
I love you. Keep up the amazing work. Walk, Talk, Eat! WOO!!
XoXo,
Emily*
PS. Wasn't it just a GREAT lake weekend?! Oh, I hope you were soaking it all up!
Terrific News Ashley,
Glad to hear you had a fantastic weekend at the lake. I bet you've got a pretty good tan line going there. We are thrilled about the reduction of your medications! What a Big plus for you and for your family. I'm sure it seemed as tho everytime your mom or dad looked your way they were making you take another medicine, well now....guess what... they can give you a smile and a hug instead!! Hugs afterall... are the best medicine (after PRAYERS that is!!!!)You are AMAZING Ashley.. your family and friends couldn't be more proud of all of your achievements.One day and one step at a time, Kiddo! The Kruse Auction didn't seem that busy yesterday! Lots of food and cars but not that many people. Maybe they spent the big bucks on Sat. and Sun. Oh well... all of us Music Booster families made the best of our time together. Who would have thought Trash Busting could be so much fun!!!! BBQ Pulled pork and A Lemon Shake up can make any day a better one!! Ha Ha Give your brother and mom and dad a GIANT HUG and a Big Smile from the Schnurr's! You remain in our prayers daily!!! Claudia and company
Hey Ash!
I know its been awhile since I've commented on here, and I apologize for that, but as you saw when you visited Glenaqua that's where I was holed up most of the summer. Boy it was great to see you there when you came and visited, everyone was so excited to see you and how much progress you have made:)
Speaking of progress.. WOW! have you been kicking butt in that aspect lately, from 14 to 4 medications in 7 months.. from not being able to sit to walking around with a little assistance and moving your arm and adjusting your sunglasses?!?!?! that's AMAZING! you motivate, inspire and leave me in awe each time I think about you!
I was thinking that I would soon licensed enough as a PT so that I could help you out more, but you are going to be WAY past the need of my services by the time I get there! you will always be my favorite example to tell my patients of where perservererance can get you!
I'm so glad you got to enjoy the BEAUTIFUL labor day weekend! we sure did luck out with the summer holidays this year.. 3/3 in the weather department!
Well I'm going to go to a bit of swimming, boy its crazy how fast I got out of swimming shape, then some homework.
Give my best to your mom, dad and SENIOR brother... wow! Chelsea is getting settled as a freshmen at purdue.. COLLEGE GIRL! and Joel is now officially a CADET!! OH MY! when did they all grow up?? wow I feel old!
I'll be praying for you and thinking of you Ash!
Love you,
Rach
Hi Ashley, It's Mrs Schnurr again...
Just wanted to give you a shout out and tell you I was thinking of you!!! This week has been a quick one because of the holiday weekend, but that's OK with me!! We are expecting company from GERMANY tomorrow. My old neighbors and great friends of my family! I am very excited to introduce them to Holly and Lauren! When they left to go back home to Fulda, I wasn't even dating Jerry yet ! It's been a long time since we've seen them! I have been getting the house all spic and span and preparing my menu for their visit. Lots to catch up on!! Holly is heading back to Saint Francis tonight for a 9:00pm meeting about her pilgimage to ROME this December. She will be gone for 10 days, and will be traveling with other Catholic Students from several Universities. Lots of Prayers will continue for you in this most Holy of Places!!! Lauren is up in her room studying for 3 different tests.... Senior year is a killer especially with all of the show choir practices she has been attending! You continue to amaze us with all of your progress, and always with a SMILE!!!! You go Girl!!! Give your family a hug from the Schnurr's!
Sweet Dreams Ashley!!!
xoxoxoxoxoxo
Good morning Ashley, Jeff, Mary, and Austin,
Everyone is still asleep, so I quietly came down to the computer to get some school work done and thought of you! I hope you are having a great weekend. We had a wonderful visit with our friends from Germany,we enjoyed having them over for dinner and to share some great memories... and good food!
No matter how far apart a friend may be when we all get together it's like they never left. Now we are busy planning and getting the house ready for relatives who will be coming to spend the weekend very soon. Wow! We're really popular lately! Who ever thought Fort Wayne could be so exciting!! Holly has been busy Cheering on the cougars the past couple weekends, they've won both games thus far! She's taking 19 credit hrs this semester and will be traveling to 2 different schools for practicum work ..... lots to do and lots of kids who need kindness in their life!! She has been fighting off a bad cold and sinus infection this past week. Lauren will be performing at the Bluffton Street Fair this Thurs. evening With the BD Show Choir, We wont get home until Midnight . There's going to be lots of tired kids at school on Friday!. That's For Sure!!!! How's the Pink computer working for you??? Hopefully it's getting alot of action and making your life alitttle easier!! Everytime I read your Blog, and see how far you've come on your journey, I am inspired. Ashley you are an AMAZING young woman! One day at a time... one step at a time.... One SMILE at a time .... We continue our prayers for you ! Love to all your wonderful family!!!
Claudia Schnurr
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