Merry Christmas!
Ashley achieved a significant milestone in the last week. On Wednesday the technology folks at RIC tested Ashley for response to yes/no questions using a button. The button is rigged to her wheelchair and placed so Ashley can hit it by raising her left arm for a ‘Yes’ answer. Upon pressing the switch an attached speaker actually says ‘Yes’. She was quite accurate on Wednesday after they set it up. By Sunday we had relatives on the speakerphone asking Ashley questions. She was 100% during those calls. Her psychologist asked her a range of questions on Monday and was quite impressed by her response.
Now when Ashley is tired, or simply on in the mood, she will not respond, but what is so encouraging is how accurate she is. Our prayers are that this is the first step in a return to full communication skills.
On Saturday Ashley did a first since becoming ill. She went to a movie. This wasn’t just a video being shown at RIC. Courtesy of the nearly 50 degree weather Chicago had on Saturday we ventured out and went to a movie theater a few blocks away. We saw “P.S. I Love You”. Ashley showed appropriate responses by laughing at funny parts and crying at the sad parts. It had to be liberating to her knowing that she can start to do some ‘normal’ everyday things.
Another major step is an increase in Ashley’s eating exercises. For the first time Ashley went to the lunch room on her floor and the speech therapist had a plate of pureed foods for Ashley to sample. All this week Ashley will be cutting back on her tube feed lunches to increase her appetite for these exercises. It is still an exercise and not a meal substitution. While Ashley is taking and swallowing thickened liquids and pureed foods there is still a lot of muscle coordination that needs to re-develop before she will be able to eat enough at a single setting to represent a full meal.
We are now targeting the middle of January for Ashley to come home. We have a lot of action items to address and Ashley’s physical health must remain stable so we can bring her home. She is anxious to come home.
Our family was together on Christmas day. Thanks to all the prayers and support we have received we can say we had a blessed Christmas. We sincerely hope that all of you feel the presence of Christ in your lives.
Tuesday, December 25, 2007
Monday, December 17, 2007
December 17th
Ashley has had a successful transition back to Rehabilitation Institute of Chicago (RIC) this past week. She has gotten right back into therapy and each of the therapists felt that Ashley was ahead of where she was when she left RIC for active treatment in November. Among the milestones this week was Ashley eating (small amounts of course) apple sauce. Although she has taken small amounts of ‘thickened’ liquids as part of her swallowing practice, her speech therapist feels Ashley has coordinated all of the muscles involved to where she can actually take several bites of a pureed food.
Ashley’s attention span and eye contact also appear to be improving. A great move forward is the return of Ashley’s sense of humor. We have not seen her laugh as hearty as she is now since she had a high fever back in October which landed her in the hospital.
In a technology session Ashley was asked to follow objects on a computer screen. The goal of the exercise is to determine if Ashley can use a computer screen which uses a laser to track her eye glances to objects on the screen that could represent words for communication. The first objects were black balls that appeared one at a time on different parts of the screen. Ashley tracked two of the five. Then the technician changed the object to a picture of a cat. Ashley tracked five of five! We are hopeful that this will lead to a successful implementation of interactive communication for Ashley in the not to distant future.
So we are seeing some rebounding, but also some marked improvement.
Ashley’s room is now on the west side of RIC. She no longer has a view of Lake Michigan, but there is not much to see on the lake this time of year. Most of her view is of the old Woman’s hospital, but she also has a clear view of Water Tower Place and the Hancock Building.
On Saturday Ashley listened to a phone call from another sufferer of ADEM. Al was stricken in 2000 just after finishing college as a chemical engineer major. Not only has Al gotten the upper hand on ADEM, it has also changed his vocation. Al started medical school this year with a goal of becoming a neurologist. Ashley’s eyes were glued to the phone as Al spoke and it reminded me of her call from Kevin who also has ADEM. We could tell that Ashley was hanging on every word they both spoke. She knows this can be overcome and both Al and Kevin are an inspiration to her.
As we have mentioned in the past the support Ashley and our family have received has been humbling. At the top of the list are our thanks for your prayers. The cards and letters Ashley receives and the comments we read her from her blog also put a smile on her face and we know that it boosts her morale. Ashley is getting cards, letters, mass intentions and notes from many people we don’t even know. The love behind each of those acts plays a critical role in Ashley’s recovery. Last week Ashley received a mail tube that was filled with Christmas posters from students in the 4th grade at St. Luke School in Boardman, Ohio. We don’t know anyone at St. Luke’s; I had to look at a map to find Boardman (it is south of Youngstown). We have a couple of guesses as to how they heard of Ashley. The fact that they have invested their time and love to show Ashley their support is priceless. The same can be said for each prayer, loving thought and communication sent our way.
It is comforting to know that there are literally thousands of caring individuals that are thinking and praying for Ashley. It makes facing this challenge possible.
In this week before Christmas our prayers will be with each of you that you will feel Christ’s loving peace.
Ashley’s attention span and eye contact also appear to be improving. A great move forward is the return of Ashley’s sense of humor. We have not seen her laugh as hearty as she is now since she had a high fever back in October which landed her in the hospital.
In a technology session Ashley was asked to follow objects on a computer screen. The goal of the exercise is to determine if Ashley can use a computer screen which uses a laser to track her eye glances to objects on the screen that could represent words for communication. The first objects were black balls that appeared one at a time on different parts of the screen. Ashley tracked two of the five. Then the technician changed the object to a picture of a cat. Ashley tracked five of five! We are hopeful that this will lead to a successful implementation of interactive communication for Ashley in the not to distant future.
So we are seeing some rebounding, but also some marked improvement.
Ashley’s room is now on the west side of RIC. She no longer has a view of Lake Michigan, but there is not much to see on the lake this time of year. Most of her view is of the old Woman’s hospital, but she also has a clear view of Water Tower Place and the Hancock Building.
On Saturday Ashley listened to a phone call from another sufferer of ADEM. Al was stricken in 2000 just after finishing college as a chemical engineer major. Not only has Al gotten the upper hand on ADEM, it has also changed his vocation. Al started medical school this year with a goal of becoming a neurologist. Ashley’s eyes were glued to the phone as Al spoke and it reminded me of her call from Kevin who also has ADEM. We could tell that Ashley was hanging on every word they both spoke. She knows this can be overcome and both Al and Kevin are an inspiration to her.
As we have mentioned in the past the support Ashley and our family have received has been humbling. At the top of the list are our thanks for your prayers. The cards and letters Ashley receives and the comments we read her from her blog also put a smile on her face and we know that it boosts her morale. Ashley is getting cards, letters, mass intentions and notes from many people we don’t even know. The love behind each of those acts plays a critical role in Ashley’s recovery. Last week Ashley received a mail tube that was filled with Christmas posters from students in the 4th grade at St. Luke School in Boardman, Ohio. We don’t know anyone at St. Luke’s; I had to look at a map to find Boardman (it is south of Youngstown). We have a couple of guesses as to how they heard of Ashley. The fact that they have invested their time and love to show Ashley their support is priceless. The same can be said for each prayer, loving thought and communication sent our way.
It is comforting to know that there are literally thousands of caring individuals that are thinking and praying for Ashley. It makes facing this challenge possible.
In this week before Christmas our prayers will be with each of you that you will feel Christ’s loving peace.
Monday, December 10, 2007
December 10th
Ashley is getting settled back into RIC. Since she was at Northwestern for nearly a month she is going through her re-evaluation by each of the therapy groups which started today.
Although we did not see dramatic changes in Ashley following the plasmapheresis she is showing improvements. She seemed more engrossed then before when we read comments off her blog to her. She had a range of emotions from laughing at the funny statements to crying at the serious passages. While no one wants to see their child cry we know that a lack of that emotion would not be normal. Ashley has very few bouts of depression and normally we can console her in a short time. She is showing a health motional range which is part of the improvement we are seeing.
Our hopes and prayers at that the staff at RIC will capitalize on those advancements and assist Ashley on accomplishing new milestones. By the middle of the week Ashley’s Physiatrist will tell us how long he is targeting for Ashley to remain at RIC. Of course our goal is to have Ashley in good health and on a track to recovery that we can continue from home via in-home and out-patient therapy.
Last week when we talked about going back to RIC Ashley would react positively, raising her arms and smiling. Obviously she was ready to leave the hospital and get back to therapy.
Mary picked up a small Christmas Tree for Ashley (a photo is posted to the bottom right of the page) and we are planning on celebrating Christmas with Ashley at RIC.
Meanwhile at home we are setting up the Christmas decorations while at the same time making preparations for Ashley’s return. The main project is the construction of a roll-in shower on the main level of the house and temporarily converting the living room into Ashley’s bedroom. The framing and electrical is done. Next comes the plumbing and then the tile work. We won’t be in need of a ramp. Ashley’s social worker said her wheel chair will be able to handle the couple of spaced out steps we have whether coming in the front door or garage.
Ashley is remaining strong which is a reflection of her faith. Each day as we approach Christmas we with thank God for the gift of Ashley. We know she has been an inspiration to so many before her illness and will continue to be as she works to recover. Thank you for your continued prayers. They are being answered and we are grateful.
Although we did not see dramatic changes in Ashley following the plasmapheresis she is showing improvements. She seemed more engrossed then before when we read comments off her blog to her. She had a range of emotions from laughing at the funny statements to crying at the serious passages. While no one wants to see their child cry we know that a lack of that emotion would not be normal. Ashley has very few bouts of depression and normally we can console her in a short time. She is showing a health motional range which is part of the improvement we are seeing.
Our hopes and prayers at that the staff at RIC will capitalize on those advancements and assist Ashley on accomplishing new milestones. By the middle of the week Ashley’s Physiatrist will tell us how long he is targeting for Ashley to remain at RIC. Of course our goal is to have Ashley in good health and on a track to recovery that we can continue from home via in-home and out-patient therapy.
Last week when we talked about going back to RIC Ashley would react positively, raising her arms and smiling. Obviously she was ready to leave the hospital and get back to therapy.
Mary picked up a small Christmas Tree for Ashley (a photo is posted to the bottom right of the page) and we are planning on celebrating Christmas with Ashley at RIC.
Meanwhile at home we are setting up the Christmas decorations while at the same time making preparations for Ashley’s return. The main project is the construction of a roll-in shower on the main level of the house and temporarily converting the living room into Ashley’s bedroom. The framing and electrical is done. Next comes the plumbing and then the tile work. We won’t be in need of a ramp. Ashley’s social worker said her wheel chair will be able to handle the couple of spaced out steps we have whether coming in the front door or garage.
Ashley is remaining strong which is a reflection of her faith. Each day as we approach Christmas we with thank God for the gift of Ashley. We know she has been an inspiration to so many before her illness and will continue to be as she works to recover. Thank you for your continued prayers. They are being answered and we are grateful.
Friday, December 7, 2007
December 7th
Ashley is transferring back to RIC today.
She has recovered quite well from the bout this past weekend. A new milestone for Ashley that occurred this week was moving from a continuous feed to what is referred to as bolus feedings. Although it is still liquid nourishment she is getting it more like a meal verses constantly.
It is difficult to say whether or not the plasmapheresis treatments helped Ashley. Again the combination of a sever infection (which she has successfully fought off) and the seizures could be masking some progress. Hopefully with a return to RIC and a resumption of her therapy there we will see that it is aiding her.
Thanks to all of you for your prayers while Ashley was at Northwestern Memorial. Just as the “12th man” advantage a football team has playing at home, you have been that 12th man helping Ashley (and us) with your prayers.
Ashley's mailing address at RIC:
Rehabilitation Institute of Chicago
345 E. Superior St. 10th Floor
Chicago, IL 60611
She has recovered quite well from the bout this past weekend. A new milestone for Ashley that occurred this week was moving from a continuous feed to what is referred to as bolus feedings. Although it is still liquid nourishment she is getting it more like a meal verses constantly.
It is difficult to say whether or not the plasmapheresis treatments helped Ashley. Again the combination of a sever infection (which she has successfully fought off) and the seizures could be masking some progress. Hopefully with a return to RIC and a resumption of her therapy there we will see that it is aiding her.
Thanks to all of you for your prayers while Ashley was at Northwestern Memorial. Just as the “12th man” advantage a football team has playing at home, you have been that 12th man helping Ashley (and us) with your prayers.
Ashley's mailing address at RIC:
Rehabilitation Institute of Chicago
345 E. Superior St. 10th Floor
Chicago, IL 60611
Monday, December 3, 2007
December 3rd
Ashley has successfully beat back the infection that landed her in the ICU a week ago. All blood tests have come back clear since the middle of last week. The combination of the infection and the course of the plasmapheresis treatments has her quite tired as she rebuilds her strength.
Ashley gave us a scary yesterday. In the late afternoon she had three seizures in rather quick succession. It is not unusual for someone in Ashley’s condition to have a seizure, but of course we were hoping she could avoid them. They seem to have been localized in that they appeared to only affect her left side. She was connected to an EEG all night last night to monitor her. She did not have a reoccurrence.
Ashley had been placed on a low dose of medication to head off a seizure, but now she will be given a larger dose. The medicine causes drowsiness so we are hoping that will not hider her in therapy.
As a precaution an anesthesiologist evaluated Ashley. He wondered about her choking reflect so he shot a syringe full of water in her mouth. Rather than choke Ashley simply swallowed it without any problem. This even after being given a high dose of medicine for the seizure. Seeing that the doctor simply said, “I don’t think we have to worry about choking.” Although Ashley has been given very small sips of water in the past and part of her speech therapy is getting her comfortable with minute amounts of liquids on a spoon she had never before had several ounces of water at once.
One of the things we noticed today is that Ashley’s right arm, which had been quite stiff from toning the last couple months, was limber. We don’t know if that is just a temporary side affect of the medication she was given last night, or if the seizure may have caused a change. Another difference was that Ashley was moving her eyes and head much more and tracking anyone that was talking to her. Perhaps this won’t be a setback for Ashley. We all know she is due for a break.
This will put a delay in Ashley’s transfer back to RIC which was scheduled for today. Hopefully she will transfer in a day or two. She spent less than 24 hours in the ICU and is back in yet another room on the 10th floor (this will be the 4th room she has been in on that floor over the last 20 days).
We know Ashley is anxious to get back to RIC and to resume full time therapy. Over the weekend we were moving some of Ashley’s clothes and other items to RIC and as we talked about it she would smile and raise her right arm to show her approval for getting out of the hospital and back to work with physical, occupational and speech therapy.
Ashley gave us a scary yesterday. In the late afternoon she had three seizures in rather quick succession. It is not unusual for someone in Ashley’s condition to have a seizure, but of course we were hoping she could avoid them. They seem to have been localized in that they appeared to only affect her left side. She was connected to an EEG all night last night to monitor her. She did not have a reoccurrence.
Ashley had been placed on a low dose of medication to head off a seizure, but now she will be given a larger dose. The medicine causes drowsiness so we are hoping that will not hider her in therapy.
As a precaution an anesthesiologist evaluated Ashley. He wondered about her choking reflect so he shot a syringe full of water in her mouth. Rather than choke Ashley simply swallowed it without any problem. This even after being given a high dose of medicine for the seizure. Seeing that the doctor simply said, “I don’t think we have to worry about choking.” Although Ashley has been given very small sips of water in the past and part of her speech therapy is getting her comfortable with minute amounts of liquids on a spoon she had never before had several ounces of water at once.
One of the things we noticed today is that Ashley’s right arm, which had been quite stiff from toning the last couple months, was limber. We don’t know if that is just a temporary side affect of the medication she was given last night, or if the seizure may have caused a change. Another difference was that Ashley was moving her eyes and head much more and tracking anyone that was talking to her. Perhaps this won’t be a setback for Ashley. We all know she is due for a break.
This will put a delay in Ashley’s transfer back to RIC which was scheduled for today. Hopefully she will transfer in a day or two. She spent less than 24 hours in the ICU and is back in yet another room on the 10th floor (this will be the 4th room she has been in on that floor over the last 20 days).
We know Ashley is anxious to get back to RIC and to resume full time therapy. Over the weekend we were moving some of Ashley’s clothes and other items to RIC and as we talked about it she would smile and raise her right arm to show her approval for getting out of the hospital and back to work with physical, occupational and speech therapy.
Subscribe to:
Posts (Atom)
.JPG)
