Good news. Ashley does not have to go back to Chicago this Friday. The procedure she was going to have is available here in Fort Wayne.
Ashley’s temporary quarters in our home are getting more civilized. She how has a real floor under her and drapes rather than sheets dividing the rooms for privacy. With the balance of her furniture coming in this week she will be all settled in.
Ashley has adapted well to being home. We continue to be encouraged by the therapy staff Ashley is now seeing here in Fort Wayne. The only significant milestone this last week is that Ashley coordinated both a leg and arm and turned her self from her back to her side. Similar to her first spoken word a week before, we have not witnessed a repeat of this, but it is further evidence that Ashley continues to expand her fine motor skill ability. The best news since we have been home is that Ashley continues to progress and has not taken any steps back.
Ashley’s ability to communicate via her ‘Yes’ button has been the greatest blessing so far. It confirms that she is aware of her surroundings and able to make choices. She chooses her clothes in the morning, selects what she has for her eating exercises. Tells us if she wants to listen to music, watch a movie, hear a story, or simply wants some peace and quiet.
We continue to be humbled by all the love, prayers and support that continue to come our way. You all remain an inspiration that helps us keep our focus on aiding Ashley as she continues to recover.
Monday, January 28, 2008
Monday, January 21, 2008
January 21st
Although Ashley has been home less than a week she is heading off to her third day of therapy. As I speak the flooring in Ashley’s temporary bedroom is being laid. She will be coming home from therapy to a much improved living environment.
Ashley had company this weekend in the form or both relatives and friends. It is obvious that she is enjoying being home. Several times now we have brought Ashley out to the family room where she could sit on a sofa to watch a movie, and yesterday a little football. Since Ashley can communicate to us via her ‘Yes’ button we are able to ask her what she wants to do and then do it.
Along the topic of the yes button, Ashley reached a new milestone on Friday; speech. While at therapy and in the presence of not one, but three speech therapists, Ashley whispered a response to one of them. The question was what her favorite sport was. The therapist nearest Ashley told Mary (who was temporarily out of the room) she thought Ashley might have said tennis, but that the only unmistakable sound was an ‘S’. Mary told them that Ashley has been a competitive swimmer for years. The therapist said that must have been it. While it was difficult to understand it was not just sound it was the formation of speech.
We have not heard Ashley annunciate since (you can imagine that we are coaxing her) but the therapist said that she most certainly managed to get the complex signals to all the muscles that were necessary to create more than just a sound. To say we were excited is the biggest understatement so far this year!
While it is wonderful to have Ashley home she will be going back to Chicago (Northwestern Memorial) at the end of the month for a medical procedure. The procedure is to implant a pump that will provide Ashley with controlled doses of the muscle relaxant she receives. At this time she takes the medicine orally (though her peg-tube) which requires higher dosing with a side affect of drowsiness. Following the procedure she will go back to Rehabilitation Institute of Chicago (RIC) for a week to 10 days for evaluation to get the dose just right before coming home.
The original plan was for Ashley to have the procedure before coming home (at least that is the excuse I am using for not having the house ready for her) but the scheduling did not work and we were anxious to get both Ashley and Mary home even if there would be a return trip. Looking on the positive side we can consider the nearly three weeks Ashley will be home as the trial run. We will be able to ask questions about the transition to home care from the hospital setting we would not have thought of until we experienced it.
Father Jason from St. Vincent’s came over on Sunday to provide Ashley with Holy Eucharist. All you need to see is the smile on Ashley’s face to realize how important her faith is to her. It is that faith, combined with your loving prayers and her unwavering motivation, that will she her through this challenge to a full recovery.
Ashley had company this weekend in the form or both relatives and friends. It is obvious that she is enjoying being home. Several times now we have brought Ashley out to the family room where she could sit on a sofa to watch a movie, and yesterday a little football. Since Ashley can communicate to us via her ‘Yes’ button we are able to ask her what she wants to do and then do it.
Along the topic of the yes button, Ashley reached a new milestone on Friday; speech. While at therapy and in the presence of not one, but three speech therapists, Ashley whispered a response to one of them. The question was what her favorite sport was. The therapist nearest Ashley told Mary (who was temporarily out of the room) she thought Ashley might have said tennis, but that the only unmistakable sound was an ‘S’. Mary told them that Ashley has been a competitive swimmer for years. The therapist said that must have been it. While it was difficult to understand it was not just sound it was the formation of speech.
We have not heard Ashley annunciate since (you can imagine that we are coaxing her) but the therapist said that she most certainly managed to get the complex signals to all the muscles that were necessary to create more than just a sound. To say we were excited is the biggest understatement so far this year!
While it is wonderful to have Ashley home she will be going back to Chicago (Northwestern Memorial) at the end of the month for a medical procedure. The procedure is to implant a pump that will provide Ashley with controlled doses of the muscle relaxant she receives. At this time she takes the medicine orally (though her peg-tube) which requires higher dosing with a side affect of drowsiness. Following the procedure she will go back to Rehabilitation Institute of Chicago (RIC) for a week to 10 days for evaluation to get the dose just right before coming home.
The original plan was for Ashley to have the procedure before coming home (at least that is the excuse I am using for not having the house ready for her) but the scheduling did not work and we were anxious to get both Ashley and Mary home even if there would be a return trip. Looking on the positive side we can consider the nearly three weeks Ashley will be home as the trial run. We will be able to ask questions about the transition to home care from the hospital setting we would not have thought of until we experienced it.
Father Jason from St. Vincent’s came over on Sunday to provide Ashley with Holy Eucharist. All you need to see is the smile on Ashley’s face to realize how important her faith is to her. It is that faith, combined with your loving prayers and her unwavering motivation, that will she her through this challenge to a full recovery.
Wednesday, January 16, 2008
January 16th
Ashley is Home!!!
For once we had a moving day unhampered by a fever or bad weather. We can attribute that to all the prayers that must have been said by all of you!
We got home late last night. Ashley handled the ride quite well. Her new room is still under construction but Ashley doesn't seem to mind; she had a good night's sleep.
On Thursday Ashley will meet her new therapy team here in Fort Wayne. We are confident that being home will have even more positive impact on Ashley's continued recovery.
It is great having the family back together!
For once we had a moving day unhampered by a fever or bad weather. We can attribute that to all the prayers that must have been said by all of you!
We got home late last night. Ashley handled the ride quite well. Her new room is still under construction but Ashley doesn't seem to mind; she had a good night's sleep.
On Thursday Ashley will meet her new therapy team here in Fort Wayne. We are confident that being home will have even more positive impact on Ashley's continued recovery.
It is great having the family back together!
Monday, January 14, 2008
January 14th
Ashley is coming home!!!!!!!!!!!!!
After working with a couple of different vendors we finally got Ashley's bed delivered and installed this evening. Tomorrow we will be driving Ashley home. On Thursday she will have her first appointment with her out-patient therapy team here in Fort Wayne.
Ashley (and Mary) are anxious to get home. While there will be a whole new set of challenges to adapt too it will be great to have the family back together again.
While it was not easy having Ashley so far from home yet we were blessed that she was admitted to the Rehabilitation Institute of Chicago. It will be hard to say goodbye to all the loving and supportive staff that did so much for Ashley.
Ashley continues to keep her focus on recovering and we have faith that she has reached the stage where she can be at home and properly continue her rehabilitation.
A heartfelt thank you to all of you for your on going prayers for Ashley and our family. Your support has helped us to keep our faith strong and to provide Ashley with the encouragement she needs.
After working with a couple of different vendors we finally got Ashley's bed delivered and installed this evening. Tomorrow we will be driving Ashley home. On Thursday she will have her first appointment with her out-patient therapy team here in Fort Wayne.
Ashley (and Mary) are anxious to get home. While there will be a whole new set of challenges to adapt too it will be great to have the family back together again.
While it was not easy having Ashley so far from home yet we were blessed that she was admitted to the Rehabilitation Institute of Chicago. It will be hard to say goodbye to all the loving and supportive staff that did so much for Ashley.
Ashley continues to keep her focus on recovering and we have faith that she has reached the stage where she can be at home and properly continue her rehabilitation.
A heartfelt thank you to all of you for your on going prayers for Ashley and our family. Your support has helped us to keep our faith strong and to provide Ashley with the encouragement she needs.
Monday, January 7, 2008
January 7th
Ashley continued to build momentum on her gains from the previous week. While we know Ashley has a long way to go on her road to recovery we are impressed by her progress. Both her communication and eating skills improved. At the same time she appeared to experience less pain from muscle spasms.
We are consulting with the doctors to determine if additional steps should be taken at this time to reduce some of the muscle rigidity and cramping/toning. The rigidity issues are with Ashley’s neck and right arm. That said her right arm is improving. She has much more flexibility in her elbow, wrist and fingers than she has had in the past. Ashley use to wear a brace on her right wrist and hand at night, but now we are finding it unnecessary.
On Saturday half a dozen friends from her high school days paid her a visit. There is a picture posted to the home page which also is the first picture of Ashley since her temporary upper teeth brace was removed. One of the gifts they brought Ashley was a video of several friends at a party the night before. Each friend spoke to Ashley on the video. Ashley requested seeing it again on Sunday and I am sure will want to view it often.
When her friends left she got a bit emotional which is both understandable and healthy. I am sure she was thinking, “I should be heading back to school just like they are.” Ashley does not show very much sad emotion. Her spirit is so strong. Even after six months of being cognizant of her condition she is still focused on improving and directing her energies toward her efforts to recover.
We have met several other patients and their families while we have been at RIC. Ashley has been the only one with an injury related to an auto-immune disease. The majority of the other patients have fallen into one of two categories, auto accidents among the civilians and battle injuries among the soldiers that we have met at RIC.
We have formed a bond with many of the patients and their families. We all have the same focus, seeing a loved one through recovery. The primary guiding force among those that we have met is faith in God. There is a young Muslim man from Kuwait who was injured in a car accident. His mother and Mary have spoken on several occasions. She has told us she and her family back in Kuwait are praying for Ashley. We have assured her that we are also praying for her son.
Over time we have found that the prayer support for Ashley and our family is growing. This blessing has provided us all with the strength we need to achieve our goals of bringing Ashley home and continuing her recovery.
We are still targeting Ashley’s homecoming for this month. A couple of things might extend her stay. If we pursue an additional treatment for Ashley’s muscle stiffness and spasms it could add a week. The other issue is Ashley’s uncanny tendency to spike a fever the day a transfer is scheduled. She did that both for the Virginia-Fort Wayne move (twice) and for the Fort Wayne-Chicago move. As such it might be a good strategy to keep the travel date a secret from Ashley. A big difference with this move is that there will be no ambulance involved (air or ground). We will be driving Ashley home this time.
We are consulting with the doctors to determine if additional steps should be taken at this time to reduce some of the muscle rigidity and cramping/toning. The rigidity issues are with Ashley’s neck and right arm. That said her right arm is improving. She has much more flexibility in her elbow, wrist and fingers than she has had in the past. Ashley use to wear a brace on her right wrist and hand at night, but now we are finding it unnecessary.
On Saturday half a dozen friends from her high school days paid her a visit. There is a picture posted to the home page which also is the first picture of Ashley since her temporary upper teeth brace was removed. One of the gifts they brought Ashley was a video of several friends at a party the night before. Each friend spoke to Ashley on the video. Ashley requested seeing it again on Sunday and I am sure will want to view it often.
When her friends left she got a bit emotional which is both understandable and healthy. I am sure she was thinking, “I should be heading back to school just like they are.” Ashley does not show very much sad emotion. Her spirit is so strong. Even after six months of being cognizant of her condition she is still focused on improving and directing her energies toward her efforts to recover.
We have met several other patients and their families while we have been at RIC. Ashley has been the only one with an injury related to an auto-immune disease. The majority of the other patients have fallen into one of two categories, auto accidents among the civilians and battle injuries among the soldiers that we have met at RIC.
We have formed a bond with many of the patients and their families. We all have the same focus, seeing a loved one through recovery. The primary guiding force among those that we have met is faith in God. There is a young Muslim man from Kuwait who was injured in a car accident. His mother and Mary have spoken on several occasions. She has told us she and her family back in Kuwait are praying for Ashley. We have assured her that we are also praying for her son.
Over time we have found that the prayer support for Ashley and our family is growing. This blessing has provided us all with the strength we need to achieve our goals of bringing Ashley home and continuing her recovery.
We are still targeting Ashley’s homecoming for this month. A couple of things might extend her stay. If we pursue an additional treatment for Ashley’s muscle stiffness and spasms it could add a week. The other issue is Ashley’s uncanny tendency to spike a fever the day a transfer is scheduled. She did that both for the Virginia-Fort Wayne move (twice) and for the Fort Wayne-Chicago move. As such it might be a good strategy to keep the travel date a secret from Ashley. A big difference with this move is that there will be no ambulance involved (air or ground). We will be driving Ashley home this time.
Wednesday, January 2, 2008
January 2nd
Happy New Year!
Ashley has continued to make measurable strides.
Although it is still considered training and she continues with tube feedings, Ashley now receives a food tray for every meal. Whatever is on the menu is pureed. She still has to work hard to get the right signals to the right muscles for eating. Watching Ashley work through each step makes you appreciate just how complex our bodies are and yet we take ‘simple’ tasks like eating for granted. The feeding exercises tire her out, but again when you think of all the muscles and the timing that is required you begin to appreciate how exhausting it could be.
The ‘yes’ communication button has made a huge difference. For the first time in six months we have a reliable means of communicating with Ashley and truly knowing what she is thinking and wants. Achieving this milestone has now opened other means of evaluating communications with Ashley. In the Tech Center at RIC they now can perform various test with her. They may ask Ashley to press the button anytime the therapist states a particular number. Ashley’s accuracy is quite high. She has even pulled up music videos on the Internet via a computer that can interface with the button. It offers her choices and loads whatever Ashley chooses.
The term ‘transfers’ has a particular meaning for Ashley. It is not a bus transfer. It is moving Ashley from one spot to another. It could be from bed to a wheelchair, the wheelchair to a therapy mat, or anything else. On Monday Ashley did a transfer to the front seat of a car. This was not your ordinary car though. It was just the passenger compartment and it is on the 12th floor of RIC. A new picture posted to the homepage shows Ashley in the passenger seat along with Mary in the driver’s seat. What you can’t see from the photo is that this ‘car’ faces a window. When I told Ashley not to pull a ‘Thelma & Louise’ and drive through the glass she started cracking up with laughter. That was only the start of it. The therapist told us she brought a Chicago area patient up to the ‘car’ a couple of years ago and he said it looked like a car that he reported stolen (it was a Dodge Spirit) and he wanted to know what the VIN number was on it.
Today Ashley did a transfer to a real car. We pulled up in front of RIC and a heavily bundled Ashley (it was about 10 degrees at the time) was transferred by me to the front seat. Prior to the exercise with the ‘car’ on the 12th floor I didn’t think it was possible to stand in front of a wheel chair and get Ashley in the front seat of a car. Well it is. We took a short drive thought the neighborhood to see how well Ashley would balance herself it the slightly reclined seat. She came thought with flying colors.
As some of you may know one of Ashley’s top front teeth was loosened when she was prepared for surgery back in July at the University of Virginia Hospital. She has worn a temporary brace since that time. It was not the best looking thing and it was irritating her lip. Well today it was removed and while the tooth is slightly loose it is healthy and should be correctible in the future with some orthodontia. So it looks like Ashley will be getting her award winning smile back as well!
Anything can change, but we expect Ashley to come home this month. We have been making modifications to the house and are working with the transition team at RIC to make all the necessary arrangements for therapy and procurements of equipment and supplies to carry on Ashley’s aggressive rehabilitation.
We are thankful for Ashley’s progress which now appears to be building. It will still be a long process, but Ashley shows no signs of letting up. Her determination and focus is truly awe inspiring. Coupled with the prayers and support we have had from so many throughout this ordeal it lifts our spirits and renews our faith.
We wish you all a prosperous and healthy 2008!
Ashley has continued to make measurable strides.
Although it is still considered training and she continues with tube feedings, Ashley now receives a food tray for every meal. Whatever is on the menu is pureed. She still has to work hard to get the right signals to the right muscles for eating. Watching Ashley work through each step makes you appreciate just how complex our bodies are and yet we take ‘simple’ tasks like eating for granted. The feeding exercises tire her out, but again when you think of all the muscles and the timing that is required you begin to appreciate how exhausting it could be.
The ‘yes’ communication button has made a huge difference. For the first time in six months we have a reliable means of communicating with Ashley and truly knowing what she is thinking and wants. Achieving this milestone has now opened other means of evaluating communications with Ashley. In the Tech Center at RIC they now can perform various test with her. They may ask Ashley to press the button anytime the therapist states a particular number. Ashley’s accuracy is quite high. She has even pulled up music videos on the Internet via a computer that can interface with the button. It offers her choices and loads whatever Ashley chooses.
The term ‘transfers’ has a particular meaning for Ashley. It is not a bus transfer. It is moving Ashley from one spot to another. It could be from bed to a wheelchair, the wheelchair to a therapy mat, or anything else. On Monday Ashley did a transfer to the front seat of a car. This was not your ordinary car though. It was just the passenger compartment and it is on the 12th floor of RIC. A new picture posted to the homepage shows Ashley in the passenger seat along with Mary in the driver’s seat. What you can’t see from the photo is that this ‘car’ faces a window. When I told Ashley not to pull a ‘Thelma & Louise’ and drive through the glass she started cracking up with laughter. That was only the start of it. The therapist told us she brought a Chicago area patient up to the ‘car’ a couple of years ago and he said it looked like a car that he reported stolen (it was a Dodge Spirit) and he wanted to know what the VIN number was on it.
Today Ashley did a transfer to a real car. We pulled up in front of RIC and a heavily bundled Ashley (it was about 10 degrees at the time) was transferred by me to the front seat. Prior to the exercise with the ‘car’ on the 12th floor I didn’t think it was possible to stand in front of a wheel chair and get Ashley in the front seat of a car. Well it is. We took a short drive thought the neighborhood to see how well Ashley would balance herself it the slightly reclined seat. She came thought with flying colors.
As some of you may know one of Ashley’s top front teeth was loosened when she was prepared for surgery back in July at the University of Virginia Hospital. She has worn a temporary brace since that time. It was not the best looking thing and it was irritating her lip. Well today it was removed and while the tooth is slightly loose it is healthy and should be correctible in the future with some orthodontia. So it looks like Ashley will be getting her award winning smile back as well!
Anything can change, but we expect Ashley to come home this month. We have been making modifications to the house and are working with the transition team at RIC to make all the necessary arrangements for therapy and procurements of equipment and supplies to carry on Ashley’s aggressive rehabilitation.
We are thankful for Ashley’s progress which now appears to be building. It will still be a long process, but Ashley shows no signs of letting up. Her determination and focus is truly awe inspiring. Coupled with the prayers and support we have had from so many throughout this ordeal it lifts our spirits and renews our faith.
We wish you all a prosperous and healthy 2008!
Subscribe to:
Posts (Atom)
.JPG)
