Ashley has had a busy December. We hope to publish the highlights and post some pictures over the weekend. That said Ashley didn't want the New Year to begin without her wishing all of you a Blessed and Prosperous New Year. Each one of you, through prayers and other support have been important part of you on going recovery.
May God Bless You! Ashley, Austin Miles, Mary & Jeff
Thursday, December 31, 2009
Monday, November 30, 2009
November 30
One of the most common topics over the Thanksgiving weekend from family and friends alike was, “When are we going to see an updated posting?” There is no excuse for the extended hiatus. It has been a month and a half. I hope the Ashley blog following faithful will pardon me. Of course after reading the latest with Ashley I’m sure the wait will have been worth it.
Ashley has kept busy and has been working hard.
She has been standing on her own with increased frequency (not holding anything). She has exceeded six minutes at home.
In therapy she has walked three lengths of the parallel bars with the only assistance being to turn around to begin the next stretch.
She has walked with a therapist just holding a hand for support.
In the past couple of weeks Ashley has increased the control she has over muscle groups. She has shrugged her shoulders on request and, no doubt in her bid to get back on the dance floor soon, she can shake that grove thing!
Another important advance has been with drinking liquids. Ashley is gaining more control over her jaw and lips and is drinking more each week. She still needs the tube for sufficient hydration and to get her few remaining meds and vitamins. We don't know when, but it is obvious now that the tube will be going away.
While we are still waiting on those first words Ashley is communicating more and more via her computer, spelling and glancing at objects. While it can take awhile to communicate we are moving from simple necessities to more quality of live conversations with Ashley. She is able to tell us in more detail what she wants, how she is feeling and even comment on discussions we are having. She has certainly come a long way.
Often times we lose focus getting a meal ready and forget what is important. Whenever we are at the kitchen table ready to eat Ashley looks up at the cross over the doorway to remind us to say grace prior to the meal. This young lady is focused on her faith and she is seeing that her prayers along with the multitude coming from all of you are being answered.
We were able to make a trip over to Notre Dame and Saint Marys earlier this month and had splendid weather and an opportunity to see several of her classmates and friends. Although Navy spoiled the day for the football team Ashley had a great time visiting.
A late birthday gift for Ashley was attending the Trans Siberian Orchestra concert in Fort Wayne. We were in the forth row center. What a show!
Austin was home for thanksgiving and Ashley loved spending time with him. In addition to talking about his course work and ‘life-in-a-day’ of an IU student he talked about his videographer duties with the football team. He traveled with the team to Penn State and was on the field filming with over 100,000 screaming fans surrounding him.
Ashley had the opportunity to get up close to watch Austin work (that's him with the video camera) during the Oaken Bucket game between Indiana and Purdue a couple of weekends ago.
Some of Ashley’s high school friends visited over the holiday weekend adding to the special time she had.
We have a lot be thankful for. As we prepare for Christmas we wish all of you to have a most blessed season. From Ashley and all of us!
Ashley has kept busy and has been working hard.
She has been standing on her own with increased frequency (not holding anything). She has exceeded six minutes at home.
In therapy she has walked three lengths of the parallel bars with the only assistance being to turn around to begin the next stretch.
She has walked with a therapist just holding a hand for support.
In the past couple of weeks Ashley has increased the control she has over muscle groups. She has shrugged her shoulders on request and, no doubt in her bid to get back on the dance floor soon, she can shake that grove thing!
Another important advance has been with drinking liquids. Ashley is gaining more control over her jaw and lips and is drinking more each week. She still needs the tube for sufficient hydration and to get her few remaining meds and vitamins. We don't know when, but it is obvious now that the tube will be going away.
While we are still waiting on those first words Ashley is communicating more and more via her computer, spelling and glancing at objects. While it can take awhile to communicate we are moving from simple necessities to more quality of live conversations with Ashley. She is able to tell us in more detail what she wants, how she is feeling and even comment on discussions we are having. She has certainly come a long way.
Often times we lose focus getting a meal ready and forget what is important. Whenever we are at the kitchen table ready to eat Ashley looks up at the cross over the doorway to remind us to say grace prior to the meal. This young lady is focused on her faith and she is seeing that her prayers along with the multitude coming from all of you are being answered.
We were able to make a trip over to Notre Dame and Saint Marys earlier this month and had splendid weather and an opportunity to see several of her classmates and friends. Although Navy spoiled the day for the football team Ashley had a great time visiting.
A late birthday gift for Ashley was attending the Trans Siberian Orchestra concert in Fort Wayne. We were in the forth row center. What a show!
Austin was home for thanksgiving and Ashley loved spending time with him. In addition to talking about his course work and ‘life-in-a-day’ of an IU student he talked about his videographer duties with the football team. He traveled with the team to Penn State and was on the field filming with over 100,000 screaming fans surrounding him.
Ashley had the opportunity to get up close to watch Austin work (that's him with the video camera) during the Oaken Bucket game between Indiana and Purdue a couple of weekends ago.Some of Ashley’s high school friends visited over the holiday weekend adding to the special time she had.
We have a lot be thankful for. As we prepare for Christmas we wish all of you to have a most blessed season. From Ashley and all of us!
Friday, October 16, 2009
October 16th
Ashley has continued to progress, stay busy and have fun!
Last weekend Ashley participated in a workshop that culminated in a play for children and young adults with ‘Augmentative and Alternative Communication (AAC) Devices. One of the local TV news stations came out and filmed them while they were practicing. The link to that is in the right column of the blog under ‘Ashley on Broadway… Almost’ Within the link is a button to view the video that played on the news.
It was a fun weekend. There were five boys/guys and Ashley. Mary and I, along with the other parents painted the stage backdrops while a class of senior IPFW speech therapy students worked with Ashley and the others programming their lines into their communication devices.
The play was called “Imogene’s Antlers” by David Smith. A girl (Ashley) wakes up to find she has grown antlers. She takes it all in stride, but her family and the school principal are not as accommodating.
It was fun to watch. Ashley had a dozen lines that were programmed into her PC. She did a great job of selecting the correct line which was then heard throughout the auditorium.
Prior to getting involved we didn’t know what to expect from the play. As they rehearsed we realized that this was going to be an interesting show. Between family, friends and therapists we invited we probably accounted for a bulk of the audience when they performed on Sunday.
Another benefit was meeting and talking with other families that are dealing with alternative means of communication with a child. It is always helpful to talk with others that have, ‘been there; done that’.
Ashley is continuing with the serial casting on her right leg only. This is helping her posture and making it easier for her to walk. Her left foot is to the point that it does not need the extra help of a cast. She still wears her Ankle, Foot Orthosis (AFO) during the day and at night. Her right foot has made major progress. She is now able to ‘reach neutral’ which means she is able to stand flat on her foot at a ninety degree angle. She will continue doing the castings (replaced each Tuesday and Friday) through October 27th. No doubt this has helped Ashley reach the significant milestone of being able to stand and balance on her own.
Next weekend we plan to drive over to St. Mary’s and Notre Dame to visit with her classmates prior to the Boston College game. This would be Ashley’s senior year. She has a great group of friends there that have been very supportive.
We are still waiting on those first words. Ashley continues to increase her vocalization. She is getting more control of her diaphragm. We have every confidence that her voice will return.
Last weekend Ashley participated in a workshop that culminated in a play for children and young adults with ‘Augmentative and Alternative Communication (AAC) Devices. One of the local TV news stations came out and filmed them while they were practicing. The link to that is in the right column of the blog under ‘Ashley on Broadway… Almost’ Within the link is a button to view the video that played on the news.
It was a fun weekend. There were five boys/guys and Ashley. Mary and I, along with the other parents painted the stage backdrops while a class of senior IPFW speech therapy students worked with Ashley and the others programming their lines into their communication devices.
The play was called “Imogene’s Antlers” by David Smith. A girl (Ashley) wakes up to find she has grown antlers. She takes it all in stride, but her family and the school principal are not as accommodating.
It was fun to watch. Ashley had a dozen lines that were programmed into her PC. She did a great job of selecting the correct line which was then heard throughout the auditorium.Prior to getting involved we didn’t know what to expect from the play. As they rehearsed we realized that this was going to be an interesting show. Between family, friends and therapists we invited we probably accounted for a bulk of the audience when they performed on Sunday.
Another benefit was meeting and talking with other families that are dealing with alternative means of communication with a child. It is always helpful to talk with others that have, ‘been there; done that’.
Ashley is continuing with the serial casting on her right leg only. This is helping her posture and making it easier for her to walk. Her left foot is to the point that it does not need the extra help of a cast. She still wears her Ankle, Foot Orthosis (AFO) during the day and at night. Her right foot has made major progress. She is now able to ‘reach neutral’ which means she is able to stand flat on her foot at a ninety degree angle. She will continue doing the castings (replaced each Tuesday and Friday) through October 27th. No doubt this has helped Ashley reach the significant milestone of being able to stand and balance on her own.
Next weekend we plan to drive over to St. Mary’s and Notre Dame to visit with her classmates prior to the Boston College game. This would be Ashley’s senior year. She has a great group of friends there that have been very supportive.
We are still waiting on those first words. Ashley continues to increase her vocalization. She is getting more control of her diaphragm. We have every confidence that her voice will return.
Friday, September 25, 2009
Happy 22nd Birthday Ashley
Yes Ashley has reached the ‘double duce”. As you can see Ashley celebrated with the therapists this afternoon. She has received a bunch of cards and phone calls. On behalf of Ashley, “Thank you!”
Ashley's Favorite-Carrot Cake
Since our last update we have a lot of exciting Ashley news.
Standing and Balancing – Ashley is now able to stand up under her own strength from the therapy table and not only that she is able to balance without anyone, or thing, supporting her. Ashley has stood on her own without assistance for more than two minutes. Way to go Ash!
On the therapy table Ashley was also able to go from being on her hands and knees to raising her self to being on her knees. Again without any assistance. At times it seems like Ashley’s progress is moving too slow, but when we see her do things like that it reminds us that we are on God and Ashley’s time. We just have to keep the faith and provide Ashley with the tools and support she needs to continue to improve. Thanks to all of you that keep her in your prayers.
We had front row seats to the IU Western Michigan football game when we went down to visit Austin. What was neat about that is the handicap seating is behind the visitor’s bench which enabled us to see Austin at the top of the press box where the IU videographers are. In turn he was able to see us and his grandparents that were further up from us in the same section.
Ashley is in the front row while Austin is at the top of the press box. 
Spotting Austin
There he is at the top with the red shirt with white sleeves. Below him are the announcers from the Big Ten Network.Following the game we did another first with Ashley. We went out to dinner, nothing new there, but we ordered off the menu for Ashley and she ate pasta. This is the first time we have gone out and not had Ashley’s food pureed. Her serving was easy to work with to get to the texture she needed.
Ashley has had more medications removed. Ashley from now on receives two meds and both are at very low levels. When she came home from Chicago Ashley was on thirteen different medications. It certainly makes a difference in her energy level.
Ashley had a complete workup and all of her levels were in the normal range. When it came to things like cholesterol and blood pressure she has readings most of us could only dream of. When you couple that with the motivation Ashley has it means there is no stopping her.
We have a busy fall lined up for Ashley. We are going to make a trip over to St. Mary’s and Notre Dame on October 24th when they host Boston College. We are looking forward to seeing Ashley’s classmates that are in their senior year. We are also planning on going to Columbus, Ohio in early November to visit Sandy and Pauline and to meet Al who was struck with ADEM but is now in medical school.
Have a wonderful Fall.
Monday, August 31, 2009
August 31st
It seems like it has been nonstop action since we got back from Victory Junction Gang Camp two weeks ago. We have enjoyed sharing our experience with many family and friends. It was such an inspiring experience for all of us.
First things first we want to share some more photos from Victory Junction…
Hello Kazu!
Ashley met two other people at Victory Junction with ADEM. Chris and Kate are the first people Ashley has met in person that can relate first hand to what Ashley is facing. While every case of ADEM is different, since the specific areas of the brain that suffer demyelization correspond to the outward affects of the condition, Ashley was able to relate with both of them and it was a tremendous boost to her already positive attitude.
We had a wonderful opportunity to meet with the doctors that specialize in these myelin related auto-immune conditions. We received both encouragement and guidance from each of them. As Ashley continues to work to get her speech back she will be focused on three sounds, “la-la-la, ma-ma-ma and ga-ga-ga”. Now thing about what was physically unique about each of those sounds. Times up! La-la-la involves the tongue (Ashley does a great job in positioning her tongue for that ‘L’ sound). Ma-ma-ma gets your whole mouth moving and ga-ga-ga gets your throat into the act. We were also told that Ashley maybe able to sing a familiar song before she can talk. I remember that George from Miami recovered his voice this way. He initially could sing, but following the song could not talk. Eventually he got his speech back as well. Poor Ashley having to listen to mom and dad sing off key.
This photo was taken in the hotel we stopped at half way home from Victory Junction. Since we did not have our standing frame Ashley improvised. Notice that Ashley is holding the back of her wheel chair for support. Also notice that there is no one else in the picture. Ashley stood for several minutes before requesting to sit down. All the while we never had to assist her for balance.
No sooner did Ashley get home and several of her friends organized a shopping trip at the mall. Although mom has good taste we know Ashley appreciated having her peers pick out some clothes for her.
Ashley had a visit as well from Kelly on her way back to Notre Dame for the start of her senior year. Of course we will certainly be planning a visit this fall to St. Mary’s and Notre Dame to see Ashley’s classmates and other friends.
Austin started classes today at IU. We all went down last Wednesday to complete his move from the hotel he was staying at with the football team (Austin has a work-study job as a videographer with the team) to his dorm. Ashley was kind enough to loan Austin some of her college supplies and dorm appropriate appliances. We look forward to coming back down for a football game in a couple of weeks.
Since this was a mild summer in Fort Wayne we are hoping for a warm fall so we can continue to get out and enjoy a variety of activities before the cold weather is back.
First things first we want to share some more photos from Victory Junction…
Ashley and our 'crew chief' Barbara taking in a view of the camp
Chris, the first person Ashley has met face to face that also has ADEM along with Mom
Ashley with one of the world's most caring and giving people, Sandy
With Maggie our cabin mate from Alaska
With Pauline and her service dog Kazu
Hello Kazu! Ashley met two other people at Victory Junction with ADEM. Chris and Kate are the first people Ashley has met in person that can relate first hand to what Ashley is facing. While every case of ADEM is different, since the specific areas of the brain that suffer demyelization correspond to the outward affects of the condition, Ashley was able to relate with both of them and it was a tremendous boost to her already positive attitude.
We had a wonderful opportunity to meet with the doctors that specialize in these myelin related auto-immune conditions. We received both encouragement and guidance from each of them. As Ashley continues to work to get her speech back she will be focused on three sounds, “la-la-la, ma-ma-ma and ga-ga-ga”. Now thing about what was physically unique about each of those sounds. Times up! La-la-la involves the tongue (Ashley does a great job in positioning her tongue for that ‘L’ sound). Ma-ma-ma gets your whole mouth moving and ga-ga-ga gets your throat into the act. We were also told that Ashley maybe able to sing a familiar song before she can talk. I remember that George from Miami recovered his voice this way. He initially could sing, but following the song could not talk. Eventually he got his speech back as well. Poor Ashley having to listen to mom and dad sing off key.
This photo was taken in the hotel we stopped at half way home from Victory Junction. Since we did not have our standing frame Ashley improvised. Notice that Ashley is holding the back of her wheel chair for support. Also notice that there is no one else in the picture. Ashley stood for several minutes before requesting to sit down. All the while we never had to assist her for balance. No sooner did Ashley get home and several of her friends organized a shopping trip at the mall. Although mom has good taste we know Ashley appreciated having her peers pick out some clothes for her. Ashley had a visit as well from Kelly on her way back to Notre Dame for the start of her senior year. Of course we will certainly be planning a visit this fall to St. Mary’s and Notre Dame to see Ashley’s classmates and other friends.Austin started classes today at IU. We all went down last Wednesday to complete his move from the hotel he was staying at with the football team (Austin has a work-study job as a videographer with the team) to his dorm. Ashley was kind enough to loan Austin some of her college supplies and dorm appropriate appliances. We look forward to coming back down for a football game in a couple of weeks.
Since this was a mild summer in Fort Wayne we are hoping for a warm fall so we can continue to get out and enjoy a variety of activities before the cold weather is back.
Saturday, August 15, 2009
Victory Junction Day 3
What a blessing Victory Junction has been. We had another great day. Ashley was even in a play. We have a lot to say and many more pictures to post, but our day ran long and now we have to pack to head home. As such we will post today's and tomorrow's half day of activities until next week.
Friday, August 14, 2009
Victory Junction Day 2
Another wonderful day. It poured down rain twice, but we didn't get wet, our activities were timed perfectly. So what did Ashley do today?
She rode a horse; this time without the help of a co-rider behind her.
She rode a horse; this time without the help of a co-rider behind her. She shot archery with a fixed crossbow and was just a fraction away from popping the balloon for a bullseye.
Painted a mural that would be the envy of any museum of modern art.
Created a cuccumber boat racer that placed a respectable third place!
Covered the entire camp grounds. And is ready for another full day Saturday.
Thursday, August 13, 2009
Victory Junction Day 1
The first full day at Victory Junction. So what did Ashley do?
She floated around in the pool and sat in the hottub.
Went for a spin on a paddle boat.
Got a 'lovely' do at the Fab Shop.
Had three squares at the Fuel Stop.
Got involve with the post meal fireups.
Lined up for the group picture.
Watched two NASCAR pit crews compete with each other.
Got a ballon tattoo to match the balloon giving rides on the main lawn. Just to name a few!Wednesday, August 12, 2009
August 12th
We have arrived at Victory Junction Gang Camp in North Carolina. We can't wait to detail our adventures and post some pictures!
Saturday, August 8, 2009
August 8th
Everyone had a great time Thursday night at the Tincaps game. The new stadium has a great atmosphere and Fort Wayne's single A team (affiliated with the San Diego Padres) has the best record in minor league baseball at 76-34. We couldn't have asked for better weather and boy did it bring the crowds out. They sold out and had the largest attendance of the season. Fortunately we planned ahead in purchasing tickets!
Ashley and Erika don't seem too worried that a foul ball might come at them across the first base line as they visit with their backs to the game.
Ashley and Erika don't seem too worried that a foul ball might come at them across the first base line as they visit with their backs to the game. Several of Ashley's friends were at the game and dropped by to say hello.
They even got their photo with Johnny, as in Johnny Appleseed, one of Fort Wayne's own. He served as the inspiration for the team's name.
Another attaction that brought us out was the fireworks launched from a trailer pulled out into center field right after the game. We could not believe how many aerial shots came from it.
Austin is now down at Indiana University since he is working with the football team. He's being put up in a hotel until school starts. They will have to drag him kicking and screaming to the dorm when they tell him there is no maid service and he has a roommate!
Ashley, Mary and Jeff will be venturing down to Victory Junction in North Carolina next week. On Friday Ashley got her casts off (on her lower legs and feet for posture) so she will be able to take advantage of the pool while we are there. We can't wait to tell you about our adventures.
Monday, August 3, 2009
August 3rd
Hello baseball fans! Ashley will be sitting in Row 'Z' of section 101 (first base line) for Thursday's Fort Wayne Tincaps game. We hope to see you there!
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