Christmas Day

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.

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.

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.

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

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.

November 26th

Ashley received her sixth of seven plasmapheresis treatments today. She is scheduled to receive her final treatment on Wednesday. Our hope is that she will go back to RIC on Thursday to continue rehabilitation.

We had a scare early Saturday morning. Just after midnight Ashley’s temperature started to rise. They began monitoring it more closely and they began placing ice packs on Ashley. By 7am the decision was to move her to ICU.

Jumping back a bit; on Friday she had a visit from old high school friends and later her brother Austin and relatives from Kentucky dropped by. Ashley was laughing with them and Mary and I had an opportunity to go out to dinner that evening. So the fever came as quite a surprise.

By the time the refrigerated blanket Ashley was placed on was able to reverse the fever’s climb Ashley reached a core temperate of 104.9. Needless to say we were very concerned. Ashley’s temperature slowly started to fall. It got down to 102.5 when they decided to give Ashley a break from the extreme cold she had to endure (the blanket temperature hovers around 39 degrees). When her temperature got back up to 103 degrees they turned the blanket back on, but it malfunctioned. By the time another one was placed under her and took affect the core temperature read hit 104.8.

As you might imagine our praying was going into overdrive. We also reached into the reservoir of prayers everyone has been offering up for Ashley. That brought results. Ashley’s temperature began to steadily fall she was tolerating the cold for an extended period. By 11:30 Saturday night her temperature dipped below 101. By Sunday morning her temperature was at (and sometimes below) 98.6.

On Monday Ashley was moved out of the ICU. She is still on the cooling blanket and she is still running a temperature, but nothing like Saturday.

The cause turned out to be an infection from an IV in Ashley’s arm. The doctor that first saw her Saturday morning suspected that and it was removed as soon as they could establish another IV.

Only time will tell how this latest infection will affect Ashley’s progress. She had not fully recovered from the infection that put her in the hospital at the beginning of November. The one thing that is obvious is that Ashley is a fighter. She is focused on getting better and she was not about to let this get the best of her.

We have every confidence that upon returning to RIC Ashley will jump right back into rehab and show us measurable improvement.

Ashley is in a new room with a new view. Fitting for the holiday shopping season she looks out on Water Tower Place. Now if that is not motivation for a 20 year old young lady to focus on getting better I don’t know what is!

November 19th

As I type Ashley is receiving her third plasmapheresis treatment this morning. Each of the two previous treatments have gone smoothly. They take less than one hour to complete. There will be four more treatments by Wednesday the 28th. Ashley will stay at least one more day at Northwestern Hospital for observation. It is then our hope to readmit Ashley to Rehabilitation Institute of Chicago (RIC).

Ashley’s room looks out on the Gaither building which is part of the hospital complex. But not to worry; just outside her room is a window that provides Ashley with a view of Michigan Ave at Erie St. She can watch the shoppers and see some of the lights put up during the festival of lights event last Friday.

We have been pleasantly surprised by the active physical therapy department here at the hospital. One of our biggest concerns was that for two weeks Ashley would not get physical therapy outside of what we could do in the room (basically range of motion). Not only did both physical and occupational therapists show up the first day, but they have an excellent therapy gym. Best of all Ashley has scheduled therapy times. In fact she was scheduled to go this morning, but the treatment was moved up and we had to cancel. I just received a call from the therapist saying they have her rescheduled for this afternoon. Fantastic!

One of the other differences between RIC and the hospital is wheelchairs. At RIC they measured Ashley and provided a custom set of wheels. It’s a bit different here. It’s kind of on a first come, first served basis. The model we got our hands on is interesting. It is wide enough to hold a pro football offensive lineman. The footrests on the other hand are more accommodating for a person under five feet in height. So we put pillows on Ashley’s sides to make her more comfortable. Another difference is no seatbelt, nor headrest. Mary rigged up both with sheets. The headrest is possible to put together because the chair has a high looping bar (like you see on an airport wheelchair, and makes me think of the sissy bars that were popular on bicycles when I was a kid). I don’t think we will be posting a picture of Ashley in the chair; not too flattering, but I think I have given you enough info to draw a mental picture.

While our hopes were for faster progress; this thanksgiving we will be thankful that we have Ashley, that we have been able to have her treated in some of the finest medical facilities in the country and for the comfort that has come from the prayers and support provided by all of you. Family, friends and faith. I can’t fathom anyone going through an ordeal like this without them. We are truly blessed in all three categories.

We wish you all a heartfelt and warm thanksgiving.

November 14th

Ashley was transferred to Northwestern yesterday afternoon. She will start her treatment today, or tomorrow depending on internal hospital scheduling.

The treatment is called plasmapheresis. I would compare this to kidney dialysis. For fourteen days Ashley will have the proteins filtered from her blood in hopes of removing any proteins that maybe causing her auto-immune system to interfere with her recovery. Each treatment takes about 1 hour and is done right in her hospital room once per day.

It is our hope that this will have a positive impact on Ashley's recovery and that she will return to Rehabilitation Institute of Chicago for ongoing therapy after the treatment.

Your prayers are being felt by us, and we are confident that they will be answered.

November 13th

We have decided to pursue the active treatment for Ashley. She will be admitted today to Northwestern Memorial Hospital next to the Rehabilitation Institute of Chicago (RIC). The course of treatment will be 14 days. After the treatment it is our hope she will be able to return to RIC and continue therapy.

Please pray that this course of treatment will aid Ashley in her recovery. Thank you for all your loving support of Ashley and our family.

November 12th

The highlight of last week centered on nutrition for Ashley. She has had an on-going, on-again-off-again issue with nausea. One look at the list of her medications points out the likely culprit. Almost every one of them lists nausea as a potential side affect.

As such the nutritionists and doctors have tried several strategies to overcome this problem. We don’t know if we have hit on the right combination, or if Ashley is just more able to fight the nausea back, but last week was her best week ever. We are hoping this is now one thing on the list of concerns we can put behind us.

In all Ashley did well in therapy last week. She started out strong right from the start and stayed at that level all week. The only set back we have seen since her trip to Northwestern Hospital a couple of weeks ago was her immediate head movement to track sound or movement. She is still turning her head, but not with the same frequency, nor a fluid as before.

Pain management may be what becomes a focus area. At times Ashley seems unable to get comfortable, but then with no change in medication she will sleep all night and have a good day. We think it is a combination of muscle cramps and neurological activity. Until we have a consistent communication method we can’t be sure.

This week we will likely make a major decision. We are discussing an active treatment for Ashley that may assist her recovery. Since her condition is so rare it is difficult for the doctors to even attach a percentage of likely success of it. The down side is that the treatment takes two weeks and Ashley would likely have to be transferred to the hospital. As such she would not receive therapy for that duration. Should the treatment have no measurable affect the loss of therapy during that time could be detrimental.

The neurologist is conferring with Ashley’s physiatrist (physical medicine doctor) to determine the possibility of continuing Ashley’s therapy at some level during the course of the procedure. We would appreciate your prayers for guiding us to make the right decision for Ashley.

Once again Ashley beamed as we read her the comments from the site. She also enjoyed the cards that have been mailed to her. She is fully aware of all the support she has and we know that along with all your prayers that is what has kept her spirits up. It is truly a gift that Ashley is able to keep a positive attitude and continues to persevere.

Chicago can’t wait for the traditional start to the Christmas shopping season. This Saturday Michigan Avenue hosts the Magnificent Mile Lights Festival. If the weather cooperates we plan to take Ashley out to enjoy the parade and fireworks along the Chicago River. We won’t be out too late since it gets dark so early the fireworks begin at 7:00.

November 5th

I think we can say Ashley has sprung back from the setback she had from battling the infection from last weekend.

Over the weekend and especially today Ashley was showing marked improvement. Whereas she was more irritable during the first few days back from Northwestern Hospital, the last couple of nights she slept well and was looking around more and seemed more comfortable.

Ashley had made significant progress just over a week ago in moving her head and locating sources of sound and tracking them. Then the infection threw her for a loop. Now she is making up for that.

In physical therapy today she was in a supported standing position for nearly 30 minutes. That is the longest she has had her weight on her feet yet. During occupational therapy her task was to place pegs in a board. She needed assistance, but it was apparent that she was concentrating quite hard looking back and forth from the board to the container of pegs. Toward the end she was showing frustration with her lack of eye-hand coordination, but that in itself is a sign of progress that she is focusing in on a task and has the desire to complete it.

Even though the cold weather is moving in Ashley is getting bundled up and taking on the windy city with trips to the park a block away and even going to the neighborhood grocery store with Mary.

Ashley’s original return date was a week from this coming Friday (November 16th) but now her doctor is considering an extension. We are for Ashley staying longer especially due to setback and the rebound she is now making.

October 31st

Last week through the early part of this week was a roller coaster for Ashley. She showed some strong progress in therapy. She has been tracking people with her eyes for quite a while, but her neck seemed too stiff to move in a fluid motion to follow someone or something. That changed last week. Ashley was turning to track and would turn to look to a source of sound immediately. She was also improving on her ability to reach out and grab items placed in front of her.

On Friday morning she had a high temperature and her RIC doctor decide she should go to Northwestern Hospital (one block away) for tests to be on the safe side. It turned out to be a treatable infection. They decided to keep her over Friday night for observation. Ashley’s temp and heart rate spiked again Friday night and she ended up at Northwestern until Monday afternoon.

The good news is she has responded to treatment and is back at RIC. The bout took a lot out of her and she was still pretty lethargic on Tuesday. Even so she was back to cracking a smile and chuckling to a joke Tuesday afternoon.

Each week the wonderful staff and students at St. Vincent’s school send a care package to our home. The most prized contents are cards a given class of students makes and sends along. We had to wait until Tuesday to read them to Ashley this time, but each time we do you can see in her eyes and smile the appreciation she has that so many people, even after four months, are thinking, caring and praying for her. The tremendous support Ashley continues to receive is an invaluable positive aspect in her recovery.

Since Ashley was out of RIC for four days the therapists have to re-evaluate her. She really wasn’t in a mood for it on Tuesday, but with the Speech Therapist Ashley did reach a new milestone. To set this up, Ashley has been taking sips of ‘thickened’ liquids such as OJ and Cranberry. She has also had minute amounts of pudding. The reason for thickened verses straight liquids is to insure nothing is getting into her windpipe. A thicker substance is more likely to cause a cough reflex than liquid. Well Ashley was given good old tap water on a spoon which she swallowed without any problem. Next she was given the thickened cranberry in a cup. Ashley took a sip and swallowed without incident.

So even after going through a rough and tumble weekend Ashley is fighting to get back on track to recovery.

Ashley had an appointment with an Immuno-Neurologist on Tuesday. This specialist is going to review all of Ashley’s records and do updated scans and tests with Ashley to determine what has been going on with her myelin. It will take a while for her to present her finding, but it will give us a sense of how Ashley’s brain is recovering and what likely to expect in the future.

While the vast majority of you had no idea what Ashley was going through this weekend, your prayers were being answered. The events of last Friday could have been extremely detrimental to Ashley’s recovery, but she bounced back and is getting stronger by the day. To have seen what see went through this weekend and to see her smile and respond during therapy on Tuesday is nothing short of a miracle.

October 22nd

The highlight of Ashley’s last week had to be the two and a half hours we spent out on Navy Pier on Saturday. First of all who would have thought it would be shirt sleeve weather this late in October? Two factors that were present could have made Ashley uncomfortable that was the sheer duration of time in her wheelchair without being repositioned and the second was getting over stimulated by the large crowd. Neither had an adverse affect on Ashley; she thoroughly enjoyed it.

For a follow up on Sunday we walked along the Lake Michigan shore and then visited the park that is next to Navy Pier and viewable from Ashley’s window. The sights were spectacular and Ashley was taking it all in with smiles.

On Saturday night Ashley took a phone call from Kevin. Kevin lives in Denver and is recovering from ADEM. He was struck thirteen months ago. He told Ashley to hang in there and to keep up the hard work. We appreciated Kevin’s encouragement and it was obvious that Ashley was hanging on every word he spoke. Here was someone that was in her condition and he was speaking, could walk and was able to do many things on his own. She was listening to hope; that she too can, and will recover.

During the week Ashley tried a new device in physical therapy. It was similar to an exercise bike. The difference was that this unit was set to turn with Ashley’s feet strapped in at a slow rate. If Ashley applied pressure to the pedals it would record that. The system ran for several minutes. At the end it showed that Ashley did indeed, at times, apply pressure to the pedals and was pedaling. She also appeared to enjoy it.

While Ashley has her moments of sadness and we all wish her progress was faster it is amazing how often Ashley is smiling and laughing along with us. It is not possible to know what she is going through; even so it’s hard to imagine what it would take to keep your spirits up when your body is not doing what your mind is asking it to do. It shows that Ashley is up for this challenge.

The cards she continues to receive and the posting on her blog that we read to her must be providing some of that inspiration. She is witnessing how much love and prayerful support is on her side.

October 15th

What a difference a week has made in the weather. Last weekend Ashley’s view of Lake Michigan was full of yachts, motor and sail boats. This weekend only a few die hard boaters were out. That did not keep Ashley cooped up. We took an extensive walk on Saturday (her longest yet) with Austin guiding Ashley. Ashley did not tire, or show any agitation. She would have like to stay out longer. On Sunday we braved the cool temperatures and a bit of drizzle. Again Ashley was pleased to be out. She knows it is only going to get colder (what a blessing for the extended warm weather we experienced to this point) and she wants to get out and about while she can.

We (both therapist along with Mary and me) are still working on developing a consistent yes/no communication with Ashley. We have known since Ashley first laughed back in July while we were still in Virginia that she can process the sights she sees and the voices she hears. To this point however her recovery has not permitted her to react, or initiate a communication with the reliability necessary to let us know what she wants to express.

Each weekend I read Ashley the comments she has received from her blog site. Ashley’s eyes light up and her smile expands with the reading of each person’s words of encouragement to her. It appears she is impressed that her dad figured out how to create a Blog. I’m sure she felt that was quite an accomplishment for a guy that spent about an hour just trying to figure out how to open the web browser on her Apple Mac notebook.

She continues to progress with her swallowing. While it is in minute quantities she has even tasted and swallowed pudding. We joke with Ashley that her favorite therapist is her speech therapist since she brings tasty foods (thickened cranberry and orange and now pudding). They have started Ashley out on thickened verses straight liquids to make sure she does not aspirate anything she swallows. We are confident that she is doing fine in that regard because we rarely have to suction her mouth so she is swallowing her saliva without a problem. To make sure there is a plan to actually to an X-ray film of Ashley’s throat while she is swallowing liquid. That will show if anything is getting into her trachea. To date, following countless chest X-rays, Ashley has never had an X-ray that showed fluid in her lungs.

We brought Ashley a white board and several dry erase markers. Ashley’s left arm is currently her most active (she is right handed, but that arm is not as mobile at this stage) so she we are giving her markers and letting her go at it. It is another method of stimulation for her. Before leaving Gregg Markley, upon hearing I was taking dry erases pens to Ashley, gave me his lucky green dry marker. This was the marker he used to script basketball plays during his tenure as the 7th grade coach at St. Vincent’s. Perhaps that pen was the reason for all those CYO championships. When I told Ashley that she posed for a quick photo, green pen in hand, that I messaged back to Gregg.

Please focus you prayers for Ashley to have a breakthrough in communication. Our present goal is for Ashley to have the ability to convey what she is thinking and feeling so we can start doing what Ashley wants rather than just guessing.

October 8th

Ashley is spending more time out of bed and in her wheel chair. While that might not sound significant it is. When you spend most of your time laying down it can be painful to sit up for extended periods. While each day is different with regard to what Ashley can tolerate the result is a net gain over time.

Who would have guessed that we would still be having 80+ degree days with abundant sunshine with which Ashley can be outside watching sailboats on Lake Michigan.

Ashley is moving her legs now more than ever so that will help slow muscle loss. Her right arm has been more rigid lately while her left arm is quite limber. Early on it was the opposite for Ashley’s arms.

While the technology folks have not yet narrowed down a device with which Ashley can make consistent responses there was one suggestion that is showing some promise. One of the therapist suggested using a deck of playing cards. Hold up two different cards and ask Ashley to touch an identified card. It was not flawless, but the vast majority of the time Ashley would grab the right card. At this point in her recovery a major issue is the rigidity she encounters when moving. At times she is unable to move her arm and hand directly to the card, but eventually she gets it where she wants it. At other times she is able to reach directly to a desired spot grab on to it and pull it toward her.

One thing that came out of the card exercise was some black jack playing. Ashley did quite well. She would raise her hand for a hit, or hold still or slide her hand along the table to stay. We played several times over the weekend and she thoroughly enjoyed it; smiling broadly when risky hit delivered her a winning hand.

We are reaching a critical point in Ashley’s rehabilitation. The therapists set up goals for Ashley and have been aggressive. We all have been hoping for quick progress, but that has not been the case. While Ashley is scheduled to be in Chicago until mid-November they are evaluating her progress weekly to determine if this is the best course of action for her at this time. That is not to say that Ashley will not continue therapy. She most certainly will. What we need to determine is whether she can come home and continue it on an outpatient basis, or if she will need to be inpatient at a facility in Fort Wayne for a time.

Please pray that Ashley is able to make significant progress in therapy. We know she is working hard. She is confronting battles none of us can fathom; brain signals that do not consistently travel properly which controls both logic and motor function. She experiences pain which may be physical or neurological but she cannot tell us. Your prayers have brought both Ashley and the rest of our family this far and we are ever grateful. We thank you for the prayers you continue to offer up on our behalf.

October 1st

The first communication tool the technology people attempted Friday was a three button buzzer with which Ashley could choose a desired activity. Her choices were 1) Magazine, 2) Internet, 3) Music. The magazine option was winning out each time so it does not appear that Ashley is ready for that device yet. They will go at it again this week.

We still need to work on consistency, but often times Ashley will respond to yes/no answers by raising an arm. The important thing for the questioner is to remember to pause after asking the question. Even restating the question can cause confusion as each input Ashley receives has to be processed and then Ashley has turn that request into an action. When Ashley is relaxed and the questions come at a consistent pace she does respond accurately.

We have been blessed with warm and sunny weather in Chicago. Ashley can get outside and with the lake just at the end of the block and a small city park a block away she can get a wide variety of views. On Sunday morning Ashley awoke in time to watch the sun rise over Lake Michigan. It was beautiful and Ashley was bright-eyed and smiling. It was an awesome view.

Ashley had several visitors this weekend and certainly enjoyed it.

We look forward to Ashley having more success in each therapy sessions this week. On Saturday she was able to sit up and maintain her balance without assistance for more than 30 seconds. That was a first. She is swallowing consistently now (she has to be thinking, come on folks enough with the cold spoon, bring on the frozen yogurt!).

The hardest part of Ashley’s recovery is when she seems in pain and it is not apparent what is causing it. We don’t know if it is a muscle cramp, a feeling of sadness, or just a neurological issue. Thankfully most of the episodes are short. When she has a bout just before therapy, or during a session it has a negative impact as you can imagine. Please pray that Ashley is pain free and in her best spirits for each therapy session this week.

September 27th

Ashley seems to be getting along well with her therapists. Today with speech her swallowing was very consistent. I am sure Ashley can’t wait to graduate from juice to something a bit more substantial.

Tomorrow Ashley is going to go to the ‘technology floor’. The goal there is to come up with a means or device with which Ashley will be able to consistently communicate a yes/no response. We know having a means of communicating will be a huge positive impact on Ashley and will provide her more confidence. Please pray that they have success tomorrow in developing a means of accomplishing that.

As Ashley achieves more motor skill response she also encounters issues with muscle spasms and cramps. It becomes a balancing act for her medication (over medicate and she would be to lethargic, under medicate and she might experience pain that slows her down) but over the last couple of days she seems to be more comfortable. Hopefully that will remain the case.

Ashley has received several cards and gifts for her birthday so on her behalf let me say thank you! When I go up on the weekends I fire up Ashley’s notebook Mac and read her the comments that are posted on her blog. She really enjoys that, so if you have something you would like to share with Ashley I encourage you to jot it down and you can be assured Ashley will hear it.

September 25th-Happy Birthday Ashley

Ashley started out her birthday with a smile. She had a good night’s sleep and was ready to go. Perhaps it was because she knew two of her aunts were coming today bearing gifts.

The Physiatrist (fizzy-at-trist) spoke with Mary this morning and said Ashley’s stay would likely be for 2 months. That is a couple of weeks longer than the case worker anticipated. The doctor was optimistic about Ashley’s recovery. She has a lot of hard work ahead of her and there will be both physical and mental hurdles, but Ashley still has a fighter’s attitude.

Ashley’s trachea tube has been completely removed. She could always breathe on her own; it was just placed as a precaution early on in case there was a need for emergency surgery. There is no need for stitches. Both the trachea and her skin will heal on its own. There is just a bandage there now.

Thank you for your prayers and happy birthday wishes.

September 24th

Tomorrow is Ashley’s birthday, but today is also a big day. The therapy team will meet with Ashley’s attending physiatrist (pronounced-‘fizzy at trist’) (physical medicine and rehabilitation doctor) and then they will present their goals for Ashley’s treatments.

Our case worker said that someone with de-myelination, such as Ashley’s will typically stay with them for 5-6 weeks. The typical stay for an individual with a blunt force trauma incident is 4 weeks. They will be forecasting today whether or not Ashley will be able to continue her rehabilitation at home on an out-patient basis, or if for physical reasons, she will have to continue therapy in a skill nursing environment in Fort Wayne for some time yet.

The therapy is aggressive here and is scheduled six days a week. Even yesterday on Sunday a physical therapist came by and did a ½ hour session with Ashley. They are laying the foundation for Ashley’s continued rehabilitation. We don’t know yet what to expect, but their reputation as the best rehabilitation hospital in America for the last 17 years is reassuring. Even after Ashley leaves we will be able to consult with them on Ashley’s continued rehab and rely on their guidance.

Ashley went shopping on Michigan Avenue yesterday! We knew she wanted a carrying case for her Apple Mac notebook computer so we went to the Apple store and got one. Needless to say Ashley enjoyed the outing. At just over 1.5 hours this was by far the longest Ashley has spent out doors since being afflicted. It did wear her out, but back at her room she could unwind looking out her window at motor boats, sail boats and yachts as they plied the waters of Lake Michigan.

Thank you for keeping Ashley in your prayers. It is not easy to have our family separated, but we feel all that loving support and it continues to reinforce our faith and hope.

September 20th

Ashley has met with all of her therapists and they have completed their evaluations. Ashley will have therapy in four categories: 1) Physical- restoring movement and rebuilding strength. 2) Occupational- Focusing on specific skills as her physical and mental states improve. 3) Speech- this is a subset of occupational since it is such an important and intricate sense. 4) Psychological- Addressing the emotional issues that are present while dealing with the stress of acute rehabilitation.

Active therapy actually began yesterday for physical and speech. Between the therapists at Select plus Mary and I we have been able to keep Ashley limber. Now they will build on that and as Ashley increases her participation, add more treatments that involve muscle restoration. In speech it started with testing Ashley’s swallow status. For the first time in nearly three months Ashley allowed someone to place something in her mouth without biting down. That alone was remarkable. In this case it was a cold metal spoon. The therapist placed it on Ashley’s tongue. This has a tendency to encourage a swallow. Ashley did not swallow yesterday, but she did today! Actual ‘speech’ therapy will certainly take longer than that. The therapist explained that Ashley has not used any of the muscles in her throat or month to form words in such a long time that it is not possible for her to speak without rebuilding those muscles let alone having the right signals reaching the right targets in her brain. Ashley makes vocal sounds so it is just a matter of time.

Ashley’s birthday is Tuesday (25th). If you want to send Ashley a card you can mail it to:

Ashley Harrington 10th Floor
Rehabilitation Institute of Chicago
345 E. Superior St.
Chicago, IL 60611

September 18th

We are in Chicago! The first impressions are all very positive from the staff to the facilities and the unobstructed view of Lake Michigan from Ashley’s room is also quite pleasant.

We arrived yesterday in the early afternoon (the traffic was not bad and Ashley handled the ride well). We met with Ashley’s Physiatrists (Physical Medicine and Rehabilitation doctor), both attending physician and chief resident physician shortly after arriving. They had reviewed Ashley’s medical records and after an examination and a Q & A with us they put together Ashley’s evaluation schedules for the rehabilitation therapists; which are occurring today.

That will form the basis for developing the strategies and tactics that will be implemented in all aspects of rehabilitation to achieve Ashley’s goal of complete recovery.

We have already had an opportunity to meet other people with family members here and a nurse who, prior to having a brain injury himself, was going to be an engineer. Their encouraging stories coupled with what we have researched and heard about Rehabilitation Institute of Chicago (RIC) have us convinced that this is the best facility for Ashley. We also are confident that Ashley is ready for the acute (active participation) therapy she will receive here.

Thank you…
Ashley is here because of your prayers. They continue to be answered and Ashley continues to progress because of your appeals for her full recovery. We humbly ask for you to continue praying for Ashley’s ongoing success in therapy. It will take time and it will be difficult, but we know Ashley is up to the task and with your prayers supporting her she will triumph over the obstacles.

If you want to send a card to Ashley you can send it to the following address:
Rehabilitation Institute of Chicago
Ashley Harrington 10th Floor
345 E. Superior St.
Chicago, IL 60611

September 14th

Yesterday was one of those roller coaster days. Fortunately it ended on a high note. Ashley was quite irritable in the morning. Nothing seemed to make her comfortable. Morning therapy did not go so well and no matter what anyone did Ashley was just not in a good mood.

That all changed by late afternoon. Mary and Ashley went outside and she enjoy it. Upon going back in it was time for another therapy session. This time Ashley was up for it. At one point a therapist placed a kickball in Ashley's lap and asked her to move it. She did. The therapist asked for a 'high-five' and Ashley complied. When her attending physician came by and asked for a 'high-five' Ashley did it again.

Later that evening we were watching TV and joking around. Ashley was all smiles and giggles.

We have our rescheduled transfer date. If all goes according to plan (since Virginia we have had four cancellations so we have learned to go with the flow) Ashley will be road-tripping to Chicago Monday morning.

We know you will be keeping her in your prayers for a safe trip and successful rehabilitation; thank you!

September 12th

Ashley has bounced back strong. Seeing her today you wouldn't guess she was feeling 'under the weather' on Monday. Even so, to give all the tests their time to come back with results (this is one situation in life where it is appropriate to think negative, as in negative test results for infection) we have postponed the move to Chicago until Monday.

Ashley has been moving more today and looking around more than I have ever noticed before. She remained in a supported standing position for 30 minutes in addition to other therapy tasks. Following her morning therapy session Ashley went outside. Sitting in her workout sweats you would think she was ready to jump up and go for more.

Again we are blessed that the the people at Select are pouring their hearts and souls into helping Ashley get better. The more we hear about R.I.C. in Chicago the more we are reassured that they too will bring out the best in Ashley and lead her to a full recovery sooner than anyone else.

September 11th

Well folks, she did it again...

Yesterday morning Ashley's temp shot up and she got nausea again. So far all the tests have come back negative for an infection, but as we learned in Virginia, no one moves until they know what is going on.

On the bright side it is much easier to reschedule a 3.5 hour ground ambulance trip verses one by air ambulance. We have to wait on the rest of the tests so it could be Wednesday, or it might take until Friday.

Ashley is right back at it with therapy today since her stay at Select has been extented. Even though she is not feeling the best she is still participating since she knows that is what it is going to take to fully recover.

As we took down the cards and pictures that decorated Ashley's room over the weekend it gave us time to reflect on all the support Ashley has from all of you. We haven't taken the time to do an exact count, but by rough estimate we know Ashley has received over 700 cards and letters in the last ten weeks. When you consider all the love and prayers that come bundled in each card, letter, note and now, blog site comment, it is an awesome thought.

Please continue your prayers for Ashley to be healthly for her move and to have a successful rehabilitation in Chicago.

September 10th

This is Ashley's last full day in Fort Wayne for the foreseeable future. The folks at Select Specialty Hospital have cared for and aided Ashley in her rehabilitation for seven weeks.

Ashley's birthday is not until the 25th, but one of the nurses shares her birth date, and knowing that she would be leaving before that decide to throw Ashley a surprise party yesterday. She brought a large cake, balloons and a card signed by many of the staff that have worked with Ashley. Ashley was sitting up at the time and the glow and smile that came over her face was priceless. We will post a picture soon.

Ashley is participating in her last therapy sessions at Select today. It will be hard to say goodbye to those wonderful people. They have become like family.

Tomorrow Ashley will be traveling to the Rehabilitation Institute of Chicago (www.ric.org). It has been rated as the best rehabilitation hospital in America for the past 17 years. Once again we have been blessed that Ashley will receive the best possible care.

Mary will be staying in Chicago with Ashley. Austin and I plan to visit on the weekends.

Please continue to pray for Ashley's speedy and full recovery.

September 6th

Ashley will be leaving for Chicago next Tuesday.

She was a 'bit under the weather' over the weekend and at the start of this week, but she appears to be feeling better now. Ashley has had her trachea tube 'down sized' which is a sign of progress. We can now hear Ashley since air can once again pass her vocal cords. She is not speaking yet, there will be therapy for that, but after nearly 10 weeks it is a joy to hear any sound from Ashley.

With each day we are more confident that Ashley is ready for the next, more aggressive stage of rehabilitation. She smiles when we tell her that the progress she is showing means she is moving up to the next level.

It is a slow process, but it is obvious that the myelin is regrowing and Ashley is gaining more range and consistency in what she is able to do.

Your prayers for Ashley's safe travel and successful rehabilitation leading to a full recovery are appreciated.

September 3rd

Labor Day weekend has brought a lot of visitors to see Ashley. We know she appreciates seeing familiar faces and voices.

Ashley is aware that she will be moving soon. When we tell her she is ready for the next stage in rehabilitation it puts a smile on her face. We are still considering two options and have already had some follow up conversations to make sure we have all the information we need to make the best choice for Ashley.

She continues to move more on her own and, while not steadily consistent, Ashley is responding more frequently to requests. She is impressing family and friends that have not seen her in over a week with just how much progress she is making.

This may be Ashley’s last full week in Fort Wayne for some time. Please continue your prayers for a safe and conformable transition when she moves and for the next stage in Ashley’s rehabilitation to be a great success.

August 30th

Ashley is ready for the next stage in her rehabilitation.

The doctors and therapist agree that Ashley is ready to be moved up to the next level of rehabilitation. I am updating the blog from Chicago where I have just finished a tour of the facility here. Also today a representative from a Rehab in Indy was visiting Ashley in Fort Wayne.

We will be deciding shortly, based on what we discern is the best for Ashley which facility to move her to.

While we know both facilities are world class with caring staff please pray that we are guided by the Holy Spirit in choosing the best setting for Ashley.

August 29th

Ashley is now venturing outside.

On Tuesday and Wednesday Ashley went outside. Other than during her transfer from Virginia this is the first time Ashley has been outside. Even with the heat and humidity Ashley enjoyed getting out.

On the medical front all of Ashley’s tests have come back clear so no more yellow gowns and gloves for visitors.

The social worker and medical staff at the hospital have been conferring with potential rehabilitation facilities for the next stage of Ashley’s recovery. I will be visiting a facility in Chicago tomorrow. We don’t know when, but given Ashley’s progress she may be moving soon to increase the level of therapy.

Ashley is showing marked progress so far this week. While it is still difficult for her she is following requests from the therapists and us with more frequency. We made up small signs that have statements and include pictures such as ‘wiggle your toes’ and lift your right arm’ and, when she is in the mood she is doing it.

Folks your prayers are working. Thank you and please continue to pray for continued progress leading up to Ashley’s full recovery.

August 25th

Today marks eight weeks with ADEM for Ashley. She spent four weeks at the University of Virginia Hospital and now four weeks in rehab in Fort Wayne.

Before giving an Ashley update, one of her friends asked if we read the comments left by visitors to the site to Ashley. The answer is yes! If you take the time to send Ashley a loving thought we will certainly relay it to her, and we guarantee you will bring a smile to her face.

At times Ashley's progress seems agonizingly slow, but she is making progress. We are noticing more movement by Ashley, and she is focusing in on visitors much more frequently and for longer intervals. She had a visit today from both her college roommate and a high school friend. She seemed much more engaged with them.

With therapy it is interesting to see all the different techniques they have. If one method is not getting a response they try a different approach with different tools. The result is they are getting more interaction from Ashley. The determination of the therapy staff is truly a blessing for us.

As visitors know we have posted scores of the cards Ashley has received and dozens of pictures to put Ashley in familiar surroundings. We have now added to the color palette of the room. We have added a half dozen various sized pillows that Ashley can use and covered them in cases of her favorite color, pink.

We know you are keeping Ashley in your prayers. We feel it and it is giving Ashley, as well as us, the strength we need to persevere.

August 23rd

Ashley is moving a lot more. She even stretches when see wakes up. That myelin is regrowing. Of course we would like to see more progess sooner, but Ashley can't control that. Her therapy continues to be intense and they are coordinating with the ADEM experts at Johns Hopkins to make sure Ashley has the best therapy regime possible.

In mid September we will be taking Ashley to I.U. Hospital in Indianapolis for an evaluation by Dr. Mattson, a neuroimmunology there.

Our prayer theme continues to be rapid myelin regrowth and the return of motor skill controls for Ashley.

August 20th

NOTE: This site displays the most recent postings. To view previous postings click on the date links on the right side of the page.

Ashley showed some encouraging signs this weekend. It all boils down to that myelin regrowing and that the 'connections' that are re-established allowing for the mental and motor portions of her brain to coordinate in a visible task.

Mary read a chapter from a book that was a gift to Ashley. It was obvious that Ashley was listening and comprehending since she responded with giggles to appropriate passages.

While Ashley is not yet responding to commands the movements of her arms and legs are becoming more frequent and fluid (less rigid).

On the nutrition front Ashley is moving from an constant drip feed to scheduled feedings. These are still directly to her stomach via the 'peg' and is referred to as a bolus feeding. This is also how she 'drinks' water.

One major challenge for Ashley is the temporary 'capping' of her trachea tube for speech therapy. Breathing through the trach tube means very little air passes by her vocal cords. Ashley breaths on her own, and the 'collar' (an inflated balloon between the trach tube and the wall of her trachea) is deflated so some air is already is passing through her nose and mouth all the time. Yet even when Ashley is prepared for the 'capping' the sensation of breathing only through her nose and mouth feels different and creates anxiety.

For the next couple days they are just going to talk about the goals of capping in hopes that Ashley will be a bit more settled when they resume.

Please continue to pray that Ashley's myelin regrows rapidly and completely, and that she has a full recovery.

August 18th

NOTE: This site displays the most recent postings. To view previous postings click on the date links on the right side of the page.

Therapy for Ashley has been very aggressive in the last week. She has been out of bed either in active therapy or sitting at least four hours each day.

We are noticing more movement of her legs. It is apparent that Ashley is gaining more motor movement ability. She is not yet controlling that movement at a conscience level, but that will come.

Speech therapy has been working with Ashley by 'capping' her trachea tube. Ashley has always been able to breath on her own. She had a tracheostomy as a precaution to prevent possible aspiration is she got nausea. This is allowing air to pass back through her vocal cords.

This does not mean Ashley is speaking just yet. These are the initial steps to prepare her for speech rehabilitation.

Among her physical therapy activities this week was laying on her stomach upon a large ball. She tolerated that well and we imagine it had to feel good to stretch out her back.

Many of Ashley's friends are heading back to college this weekend. Ashley will join them again someday.

Please pray for Ashley's continued myelin regrowth and that she begins to display conscience control of some motor skills this coming week.

August 15th

NOTE: This site displays the most recent postings. To view previous postings click on the date links on the right side of the page.

So far it has been an eventful week. Ashley's neurologist has asked physical therapy to step up the aggressiveness of her activities. They certainly did that today. Ashley either in active therapy, or in a therapy chair from 8:00am to 1:00 pm. She also had several visitors today. What was also interesting is that she is no longer receiving a stimulant during the day and yet stayed alert all day.

Yesterday Ashley was standing up in a special device that allowed the therapists to work with her upper body while she was reintroduced to the affects of gravity. The first time this was done with Ashley she had a drop in blood pressure which is not unusual. This time she tolerated it without any problems.

While we are hoping to keep Ashley at Select Specialty in Fort Wayne we are investigating other rehabilitation centers including Hook Rehab in Indy and the Rehabilitation Institute of Chicago (RIC). RIC actually has a Neuro-Rehab in Mishawaka. That would be convenient for her classmates at St. Marys to visit. The reason for checking out other programs is to identify the best rehabilitation program for each stage of Ashley's recovery.

As many of you know her brother Austin has had another bout with Rhabdomyolysis (form of heat exhaustion). He will be missing the first day of school on Friday to have further testing. We are confident that he will be okay. It is just going to take longer than recovering from a typical case of heat exhaustion.

Please focus your prayers for Ashley on her increasing her ability to respond to stimulus and follow commands during therapy. For Austin please pray that he can quickly return to football at full strength.

At that same time we will continue to offer up prayers of thanksgiving for all the support we have been blessed with.

The following represents the August updates that had already been emailed. Following this batch each update will be posted directly to this Blog.

To see the July original posting and daily updates click on 'July' on the right side of this page

August 1st
This update is delayed because Austin had a case of heat exhaustion from football practice (he wasn’t the only one) so I didn’t have a chance yesterday to do the update. I am typing this from Dupont where he having a follow up test to make sure he is 100%.

Ashley looks better everyday and seems more engaged with her visitors. We are confident that she will meet, or exceed the goals that rehabilitation therapists are setting for her.

We keep saying it but it cannot be said enough. Your prayers, cards, kind words and other support have changed our lives for the better. We don’t know how long Ashley’s recovery will take, nor do we know what other obstacles we will encounter along its path. What we know absolutely is that our faith, reinforced by all of you, will aid us in overcoming them.

We appreciate the offers for additional help such as preparing meals. The Markleys are keeping an eye on Austin to make sure he gets his three squares; Mary is with Ashley most of the day and I head up there after work. At this time we aren’t at the house enough for a scheduled meal. When we do have a need we will not be shy about asking for assistance and know we can count on your caring help.

The News Sentinel ran an article on Ashley today. They got the date of the benefit incorrect (it is Friday the 10th), but the article its self was well done. You can view it on-line at:
http://www.news-sentinel.com/apps/pbcs.dll/article?AID=/20070801/NEWS/708010315&SearchID=73288959307057

August 2nd
While we were at Dupont Hospital near our home for Austin’s follow up blood test for his heat exhaustion a few people came in with golden retrievers. They were from Three Rivers Visiting Dogs. Austin was petting one of the dogs and I asked the owner if they went to the hospital Ashley was in. She said they went to specific floors. When I asked if they went to the floor Ashley was on she asked if we were the Harringtons? I was taken aback. Turns out she looked at the Bishop Dwenger logo on Austin’s gym shorts and had just read the newspaper article on Ashley.

Well the answer to the question is yes. They will be visiting Ashley. Now I guess we can add dog therapy to the list of treatments Ashley will be receiving.

Ashley did have a special visitor today. A guy a few years older than her who suffered a sever brain injury about a year ago and went through rehabilitation at the same facility came in. He and his mother spoke with Mary for awhile. They spoke highly of the care and rehab he received while he was there. It just reinforces our confidence that Ashley is in the right place.

For Ashley’s part she had a good day. She continues to show us that she is fighting hard to recover. Now that Ashley has been here a few days Mary and I are getting into the swing of things with Ashley and the care/therapy staff. The therapy folks continue to introduce new techniques that, as a layman, I would never have thought of. They manage to get Ashley’s attention, and cooperation which shows that Ashley is making progress.

Progress… Your prayers are playing a major role. We are buoyed by your prayers; given the strength to see that Ashley gets the care she needs, and while Ashley is a fighter, your prayers most certainly are fueling Ashley.

Please keep Ashley in your prayers and know that you are making a difference.

August 3rd
The swimmers Ashley coaches at Glenaqua begin competing in the city-wide meet tonight. We have a Glenaqua poster in her room directly across from her so it is always in view. It’s a given that the whole team will swim their best to make Ashley proud of them.

Ashley’s youth is an advantage in her recovery. Her eleven years of swimming year-round plays an even larger role. We spoke with Ashley’s Cardiologist today and he reaffirmed that her physical condition is strong.

Each day Ashley looks better. As with every endeavor in life there is not a long list of new accomplishments each day. Achievement comes with hard work. Ashley has always been a hard worker and that determination is what will bring her to a complete recovery.

On Sunday, at the conclusion of the city swim meet, we look forward to talking to Ashley and letting her know that the hard work she put into coaching this summer once again paid off resulting in the scores of children she coaches having had an enjoyable summer of fun.

We appreciate the work all of you are doing praying for Ashley’s speedy, complete recovery.

August 4th
This Saturday went much smoother for Ashley than last week’s when she and Mary flew in from Virginia. It is also easier on the rest of the family not being 600 miles from home.

We think Ashley is getting comfortable with her care takers in Fort Wayne. The fact that she has begun physical therapy must be helping. Please pray that Ashley meets the aggressive goals the doctors and therapists have for her rehabilitation.

Austin on the other hand, after being given the all clear by his doctor to resume sports, found out he wasn’t quite up to snuff for the city swim meet. It appears the form of heat exhaustion he had, Rhabdomyolysis, (there will be a prize for the first person to pronounce that correctly on the first try) had more of an affect on his muscles than he first thought. He is going to have to ease himself back into competitive shape.

August 5th
It was hot, muggy and rainy out today; a good day to be in an air conditioned hospital room. We have covered the walls Ashley can see from her bed with the cards she has received and 8 x 10 photographs we think she would like to look at. It seems to have her looking around the room more.

This afternoon from Ashley’s room I spoke with an ADEM sufferer. He was struck while attending college at the University of Michigan. His plans for a career were to be a chemical engineer. ADEM did have an affect on him. In two weeks he begins med school at Ohio State. He plans to go into Immuno-Neurology. He also did an internship at Johns Hopkins this summer and work with Dr. Greenberg who provided the confirming second opinion on Ashley’s case. It is a small world.

Al, the soon to be med student, shared his story with us. Every case of ADEM is different, but if Ashley comes out of this wanting to be a physician, we can live with that! On a serious note it will be nice to stay in touch with Al and get his unique prospective on rehabilitation and other steps we can take to insure Ashley has the smoothest recovery possible.

Please pray that we are able to apply all the appropriate advice we encounter for Ashley’s full and speedy recovery.

As for Austin. He is doing fine. He didn’t compete today, but he did go to the city swim meet finals. For those of you familiar with the Austin-City Meet tradition, we did find time to give him a ‘hair sculpture’ for today. He has his traditional ‘GA’ letters in the back, and since their teams theme this year was ‘racing’ the rest of his head was done in a finish flag checker.

August 6th
Back to work for Ashley. Like most of us, Monday now means a return to work for Ashley; therapy that is. They are being aggressive with Ashley which is good. She seemed to handle it well.

Ashley had three of her high school friends visit her this evening. They can acknowledge that Ashley was engaged with them via humor. What a gift to see Ashley laughing along with her friends.

An aside; a nurse came in this evening and asked if we had any country CDs. We have been using Ashley’s iPod so we only had a couple of CDs for a player we leave overnight. It turns out there was a 95 year old gentleman named Bob that was just admitted. He was having a bit of a tough time adjusting and mentioned he like country.

Mary went down with the nurse to put in a CD and asked what music he liked. He said Johnny Cash. When Mary came back to the room she said we have to get this man a Johnny Cash CD and bring it up tomorrow. Then we thought, why wait? I ran out and got a ‘Best of Johnny Cash” CD set and brought it to Bob.

His eyes lit up.

We have been so blessed to be on the receiving end of so much generosity that it felt good to ‘pass it on’ to Bob this evening.

As you say your next prayer for Ashley please say a prayer that Bob feels comforted and at peace.

August 7th
We have a combined update. Ashley continues to progress with therapy. It is slow going, but good things are worth the wait. On Tuesday they placed Ashley in a chair that then converted to a level surface. At that position they raised Ashley, strapped in of course, to a near vertical stand. Having not been in a standing position for nearly 6 weeks it had to be unique feeling.

The therapists are great with Ashley. They push her to new levels, but always with positive reinforcement.

We continue to hear of more individuals and companies getting involved with Ashley’s benefit at Glenaqua this Friday. It is humbling to think of so many lending their support. The stories we hear of how Ashley has left a positive impression with so many along various paths she has crossed is reaffirming of how special she is.

We are thankful for all the wonderful folks that helped form Ashley’s optimistic and uplifting view of life.

Please continue to pray for Ashley’s continued progress in therapy and for a full recovery.

August 9th
Ashley had nearly three hours of therapy today. Our ADEM (Ashley’s condition) specialist said what she needs most is aggressive therapy. We thank God that she is in a place where that is happening.

They are talking about taking Ashley outside soon (if this heat wave ever snaps). We can’t wait to see her when she gets outdoors we know that will bring a big smile to her face. We will be sure to get that event on film.

With the benefit tomorrow we are looking forward to seeing and thank many of Ashley’s supporters. We are awestruck by the support and appreciate the dozens of volunteers that are pitching in to assist.

If you are going I would strongly suggest parking in one of the school or church lots at Reed and Vance so as not to clog the neighborhood streets in Glenwood Addition.

Please keep Ashley in your prayers for a full recovery.

August 12th
Thank you!

Our family is so blest by those that surround us. Many of you we will never meet, and for several others it will be a long time before we can thank you personally, but your prayers and support have made an everlasting positive difference in our lives.

On Friday evening the Glenaqua Swim Club (where Ashley worked summers as a life guard and swim coach) hosted a benefit for Ashley. We were not surprised at the tremendous turn out because we had so many indications leading up to it.

That does not mean we were not amazed. It was beyond awesome. Starting with the weather; all week it was hot and humid with isolated thunder storms popping up unannounced. This night the weather was what they call ‘Department of Tourism’ perfect. The sun was shining, but the humidity seemed absent and there was a gentle breeze blowing.

The entire atmosphere was spectacular. This event was so well coordinated. Nothing was overlooked. You would have thought the Glenaqua families and those that joined in as volunteers did this as their profession. Kids were having fun in the pool and with the numerous games and activities that were provided. The food was fantastic. The live music was exceptional. As I surveyed the crowd throughout the evening I had to keep reminding myself that all of this was for Ashley. Although I was seeing it, and I knew there was a lot of support, it was hard for it to sink in.

We will never be able to say thank you enough to the sponsors, volunteers and participants . I did speak at the event. (Luckily I wrote out my thoughts ahead of time, I never would have made it without several deep breaths and sticking to that script.) I expressed, as well as I could, how much your prayers and support have meant to us.

This week we will be discussing Ashley’s next step in rehabilitation. While she may be able to stay in Fort Wayne for the time being it is possible that we will have to transfer Ashley to a facility outside the area. The support from so many will make it possible for Mary to take a leave of absence from work and to reside wherever Ashley will be. Thank you.

As for Ashley and her condition we are happy to report that physically she is doing quite well. Over the last six weeks she has fought off some infections and other ‘by-products’ of her condition and being in a hospital environment. On most days she does well in therapy and shares a laugh (and occasional cry) with her visitors. There are challenging days, but that is to be expected. Once again we count our blessings that Ashley can have a full recovery and with all of you behind her that will happen.

Please continue to keep Ashley in your prayers, and we will continue to thank God for the gift you are to us.

The Beginning

On June 29th Ashley flew out to Charlottesville, VA to visit with her boyfriend who was taking summer classes at the University of Virginia. Upon arriving in the early afternoon she felt sluggish, which is understandable considering she got up at 3:00am to start her day and had a four-hour layover during the trip. After taking a nap they went out to dinner. Ashley didn't feel too hungry. Later they met up with her boyfriend's friends. Ashley notice that her speech was becoming incoherent. Her boyfriend took her back to her hotel room chalking up the day's events as travel fatigue.

At 4:30am Ashley called us at home. Her speech was very labored. She said she was unable to sleep and her arms and hands tingled. We told her to call her boyfriend and have him take her immediately to the hospital. While quite concerned we reassured ourselves that they would give her a sedative and by mid-afternoon Ashley would be refreshed and enjoying her visit.

At the University of Virginia Hospital the admitting physician noticed symptoms of a neurological concern. We were called and they requested to do an MRI. We consented and were still confident that Ashley would be okay. A few hours later we received a call from a neurologist saying there was a problem.

Within an hour I (her dad) was at the airport waiting for a flight that would get me to Charlottesville. When I arrived that evening Ashley was mostly non-responsive. I wasn't sure if she could tell I was there.

The next day my wife joined me in Charlottesville along with my sister who is a nurse. (Sidebar comment: being a nurse my sister brought us great comfort in answering our questions and assuring us that the care staff took the right actions.)

Initially the doctors thought it might be a stroke, but the first MRI indicated that the affects to her brain were Symmetrical. That pointed to either an auto-immune or toxic response.

Ashley was immediately put on steriods since it appeared the myelin (fatty protein that insulates the axons, or nerve fibers) was affected. When the myelin is inflamed or damaged the electrical signals that travel along the axons can not get to the appropriate areas of the brain where those signal would be processed.

Ashley was place in the same Neurological ICU that Christopher Reeves was flown to following his horse riding accident.

For the next several days Ashley would mostly only respond to noise. Loud noise would startle her, but she would not respond to commands.

I began to email daily updates on Ashley's condition and progress from Virginia.

Here are the July Updates...

July 4th
Ashley is not out of ICU yet. She was just placed on a ventilator as a precaution, in case she would choke. Even though she is on a ventilator she is breathing entirely on her own.

Ashley had a good day yesterday (7/3). She was opening her eyes more and moving one of her arms more than just a 'reflexive' distance. We realize we are on 'Ashley' time. She is fighting to make those new neuron connections and it appeared that there were patterns to what she was doing later in the day. Her vital signs remain quite strong and we have every confidence she will make a full recovery.

Since they still don't know the cause (some of the cultures can take 5 days to show a positive indication) Ashley will be having a brain biopsy this morning. While any surgery is risky we have full confidence in the Neuro-Surgical team that will be involved. We ask that you pray for Ashley, the Surgeons and the Medical Staff today.

Today is Independence Day and for us that will mean Ashley will move one step closer to resuming her independence. We will never be able to properly thank all of those praying for us. Believe me when I say we can feel it all the way out here in Virginia, and we know Ashley does too.

July 5th
July 4th was Ashley's Independence Day.

Ashley came through the biopsy extremely well. Although we would have liked to have gotten an answer to the cause immediately it will take time, perhaps days, and in the end we may never no the cause.

What is important is that Ashley is fighting this. She was responsive very quickly after the surgery. She moved both arms on the 4th beyond reflexive stage. Her Grandparents paid her a visit and you could tell she recognized them by the increase in her heart rate.

We started posting the E-cards on the wall across from Ashley and I can tell you that Glenaqua has taken the early lead in the number of cards. I want to thank the Curry's. We did not even know the hospital offered this until their e-card showed up!

Please continue to pray for Ashley. We are all lifted by the power of your prayers.

Ashley's vital signs remain strong on Thursday (5th), so even though we do not know what the cause is yet we are confident that Ashley will have a full recovery. She has a wonderful team of medical experts that are leaving no stone unturned to get to the bottom of this and speed up her recovery.

Thank you all for the e-cards. We have nearly covered an entire wall with them. We love reading them to Ashley. Along with those e-cards please keep Ashley in your prayers for a full recovery.

July 6th
Ashley has had a big day this Friday. She showed improvement in both eyes response and motor skill today. We have passed the 100 E-card mark and believe it or not we fit them all on the wall that Ashley can see. If you haven't sent one, we will still find room for yours as well.

Now for some Austin news. He spent some time with out-of-town relatives, but he will be back at Glenaqua for prep team coaching, and based on scheduling, life guarding. It is likely he will be coming out to Virginia on Friday of next week for a weekend visit with Ashley, Mom and Dad.

While we still do not have an diagnosis we do know that the doctors have not discovered any irreversible damage.

July 8th
Ashley had a visit from her college roommate and another classmate from St. Mary's yesterday. They came down from Eastern Ohio. Once again we noticed a rise in Ashley's heart rate as she heard yet another set of familiar voices.

We heard from the Merz family who plans to head a little further south then originally planned during their West Virginia vacation. We expect to see them today, so upon their return they will be able to tell you more about where Ashley is and how wonderful the outpouring of support and prayers have been.

Please continue to pray for Ashley's full and SPEEDY recovery. It is not a matter of if, but a matter of when Ashley will recover, and your prayer support combined with Ashley's fighting nature have been the biggest contributing factors.

The Sun is starting to set over the Blue Ridge Mountains.

We can see it from Ashley’s new room view. That’s right Ashley has moved. She is out of the ICU and in a regular hospital room. As we have stated all along Ashley’s vital signs have always remained strong. (We can probably thank 12 years of year-round swimming for that!) While she is still in a ‘sleepy’ state she does not need constant monitoring.

Ashley had some early visitors today; the Merz family. They took a bit of a detour on their way to the New River in West Virginia. They drove all night dodging dozens of deer to visit with us. Shelly visited with Ashley so she can tell you that every E-Card from Glenaqua members is indeed posted in Ashley's room. They told us to expect the 'package' today, but I think that fact that Ashley changed rooms my delay that delivery to her until Monday. We are anxious to receive it.

There is no final verdict on a cause of Ashley's illness, but the doctors are leaning toward an auto-immune disease as the likely culprit. In all likelihood this is something that will take a few more weeks for Ashley to beat back, but then she will be no more likely than anyone else to experience this again. We are confident that Ashley will make a full recovery.

At St. Thomas Aquinas church this morning after reading the petitions they asked the congregation for special intentions. We asked for prayers for Ashley’s speedy recovery. I don’t recall being in a church that asks the parishioners to offer up intentions. It was just one more sign among a multitude that prayer is playing a major role in Ashley’s recovery and providing us with the strength to see her through this.

On a related note would you believe that the Charlottesville newspaper is call the ‘The Daily Progress’? That is what we are seeing from Ashley, slow though it may be it is still daily progress. We know we do not have to ask, but we will never take your prayers for granted. They are invaluable to us.

Please continue to pray for Ashley’s quick full recovery and return home.

July 9th
The ‘box’ from Glenaqua made its way to Ashley’s room today. We read every single card to Ashley. We immediately posted the “We Miss You Ashley” and “Glenaqua Swim & Dive” posters. We greatly appreciate the love that went into every card. What a wonderful blessing it is for us as well as Ashley to be associated with such caring people.

We learned today that Ashley’s daily schedule does not necessarily match ours. She seemed rather sluggish this morning. Turns out she was sleeping. Rather hard to tell in her condition. By mid-afternoon she was opening her eyes wide, and while she did not follow us around the room she was shifting her eyes and even moving her head slightly to see where we stood as we spoke to her.

Little things like that are giant steps in Ashley’s recovery. Austin said it was good to be back to the pool today. He appreciated the warm welcome back everyone gave him. Thank you for your unending prayers for Ashley’s recovery. They are certainly being answered, and we are ever so grateful to each of you.

July 10th
July 10th Ashley yawned today!

Until now she wasn’t opening those pearly whites for anyone. Her eyes were opened for most of the day. This morning she was placed in a chair (with a slight recline) for nearly four hours today. It’s great to see her sitting up. We worked with the physical therapist today. Ashley has managed to stay limber. Mary and I took a crash course in motion exercises and now Ashley has two personal trainers.

A thunderstorm rolled through mid-day today. It managed to cut down on some of the humidity that was hanging so thick since yesterday evening and restored the mountainview outside Ashley’s window. Whenever she looks toward the window we make sure the shades are adjusted to improve her view. The student volunteers that deliver Ashley’s E-Cards say they have never seen one patient receive so many. What is special to us is not the quantity, but the love and prayers for Ashley’s speedy recovery which is reflected on each one. Your prayers have brought us peace, and we ask God’s peace upon you.

July 11th
Wow, what a day!

We received the final pathology report on Ashley and they have found no permanent damage. While we may never no the cause (virus or auto-immune disease) Ashley has suffered demyelination which means a loss to the myelin sheath that insulates the axons, or nerve fibers. With those fibers exposed they are unable to transmit their signals correctly throughout the brain. The body is able to rebuild myelin easier than it can repair damaged nerves. As such Ashley can have a compete recovery. How long this will take no one can say. At this point we are looking into the possibility of moving Ashley closer to home. Right now the doctors here are conferring with doctors at the IU Hospital in Indianapolis. It may be possible for Ashley to come to Fort Wayne. We don’t know yet. Such a move could occur early next week. Ashley is not out of the woods yet. All of you have played an important role with your prayers for Ashley. Please continue to pray for a full recovery.

July 12th
It looks like Ashley will be coming back to Fort Wayne on Tuesday. We still have to work out the logistics, so we will confirm it as soon as it is finalized.

Ashley continues to open her eyes more. While it is difficult to say she is progressing each day, what is much more important is that she is not declining in her abilities. Initially Ashley will be staying at a skilled nursing and rehabilitation facility in Fort Wayne. She still needs round the clock care and will being physical therapy. The doctors say that Ashley can have a 100% recovery. What no one can say is how long that recovery will take.

We continue to ask for your prayers that Ashley’s treatment in Charlottesville will speed her recovery and that Ashley’s determination to heal herself remains strong. Your prayer support has given us the strength to see Ashley through this challenge. We will never forget the outpouring of love we are surrounded by.

July 13th
We are coming home on Tuesday.

Ashley, Mary and I will be flying into Fort Wayne. What we don’t know is where we are going. It is simply a matter of the insurance company and the two facilities we are considering coming to terms which will happen on Monday. We have done our research and are confident that either one will provide Ashley with the medical and rehab care she needs at this stage.

Mary's brother and sister-in-law safely delivered Austin this morning. In addition to visiting with Ashley I acted as tour guide taking them through the ‘grounds’ of the University of Virginia (it is taboo to use the term ‘campus’ here). Austin will be back at GlenAqua on Monday.

For the first time Ashley reacted to a shot. She didn’t like it and pulled her arm away. It it the most deliberate reactions we have seen yet. It is yet another indication to us that Ashley is healing and on the path to recovery.

Ashley had a visit from another St. Mary’s classmate from the D.C. area today. We may be 700 miles away but Ashley has friends everywhere. Just now as I was typing up the update the musician in residence (yes this hospital has a musician on staff), a harpist, came into the room and played for about 20 minutes. The music was beyond beautiful. I never thought a hospital room could provide concert hall acoustics, but somehow Ashley’s did. There is no doubt Ashley heard the music. She moved more than I have ever noticed. As we get nearer to heading home please pray that all goes as planned and we are able to get back home on Tuesday.

July 14th
Ashley showed us again today that she is going to fight her way back. While it would be stretching it to say that Ashley has shown marked improvement over the last couple days what is most important is that she certainly is not losing ground in her battle.

We received reassuring feedback today from experts at Johns Hopkins. They have seen and studied more cases of demyelination then any other medical group in the world. They concur with the course of action that has been taken by the doctors here in Virginia. They will continue to be involved in Ashley’s case after we get back to Fort Wayne.

Austin and I took advantage of a beautiful day to go to Monticello (as in Thomas Jefferson’s house in Virginia verses the home of Indiana Beach). As we walked the grounds of the man who penned the words, “life, liberty and the pursuit of happiness” in the Declaration of Independence I felt confident that we would return someday with Ashley. Those words will have a whole new meaning to our family.

Austin will be returning to Fort Wayne on Sunday with his Aunt and Uncle. Please pray for them to have a safe trip.

Once again we ask that you keep lifting us up as you have with your prayers for Ashley’s full recovery. You are the wind in our sails and God is at the helm.

July 15th
For the first time we saw Ashley track something with her eyes. I took a picture of her and Mary. I turned the camera around to show it to her. As I moved it Ashley followed it. She was fixated on it.

We also played the CD of pictures her friends sent. While her eyes would wonder away from the screen she kept coming back to it as the slide show looped through the pictures.

The highlight of our day was a telephone call from Dr. Greenberg from Johns Hopkins. He is one of the top experts in auto-immune diseases that affect myelin (the insulation over the brain’s neurons that were damaged). He was sent all of Ashley’s scans, biopsy results and medical data. He will be guiding us in making sure we get Ashley the right resources back in Fort Wayne for her recovery. Hearing him say that that Ashley’s chances for recovery, even a full recovery, are good was monumental. We are now being armed with the data we need to insure we develop a physical medicine and rehabilitation team in Fort Wayne that will work with Ashley to speed her recovery.

If the Pope and the President were calling I would have put them on hold to talk to Dr. Goldberg. In addition to providing us with direction on Ashley’s ongoing care and his willingness to stay involved, he also told us how fortunate it was that Ashley had this occur in Charlottesville. He said the U. of Virginia Neuro ICU she was admitted to sets world’s gold standard for emergency neurological care and diagnosis. Mary and I thank God for bringing Ashley here since this likely would have occurred regardless of her traveling, or having been at home.

However; we thank all of you for the events that followed which have been so positive. We owe it to your prayers that collectively are being answered everyday.

My vocabulary is too limited to express the gratitude we hold for each of you that have prayed and supported us during this trying time. We humbly ask you to continue the blessing of your prayers for Ashley’s full and speedy recovery.

Austin is now back safely in Fort Wayne thanks to his uncle and aunt, Dave and Julie. Austin brought a large basket full of cards, gifts and treats from numerous folks back home. Thanks to all of you for your thoughts and gifts.

July 16th
Well folks it looks like our travel plans are being bumped to Wednesday. At first the hold up was getting all the necessary pre-certifications done with the insurance company. Then Ashley ran a slightly raised temperature (it came down on the next reading). The team here didn’t want to take any chances so they are holding her one more day while they run tests to insure Ashley is fit for travel.

As we have stated before, the entire hospital staff is fabulous. The social worker made sure we got the facility in Fort Wayne we wanted even though it was ‘out of network’ with our insurance company. The nursing, and related care staff, treat Ashley as if she were their daughter. The doctors display genuine concern and make us feel as though Ashley were their only patient. What reinforces this is the fact that so many hospital staff including nurses and doctors that were in other departments (ER and ICU) and no longer are caring for Ashley go out of their way to visit with us and Ashley nearly every day.

Ashley is looking around the room more. Hopefully that is an indication that she is processing more signals.

Thank you again for keeping Ashley and her full recovery in your prayers.

July 17th
Ashley’s temperature has been dancing around a bit. As such the doctors want to check everything and make sure Ashley is not sent home until they know she is totally stable. So far the tests have come back clear, so it just might be that Ashley’s own system is ‘playing with the thermostat’ as it goes about its work of repairing itself.

We keep telling ourselves that we are on ‘Ashley time’. All indications are that she is healing herself. We read an interesting short story on ‘God’s Delays’. One statement read, “Faith never gives up. It knows that despite appearances, all is well. It can wait without signs or significant indications that God is at work, because it is sure of Him.”

Our delay is to see if there is a possible infection (hospitals are a breeding ground). It is not that Ashley’s neurological condition has declined; in fact, I dropped the power converter to my notebook PC and the noise startled her. She reacted just as anyone else would to a sudden noise. She was moving her arm more today than any other time.

We thought we would be back in Fort Wayne today, and now even Thursday looks iffy given all the details that go into scheduling an air ambulance for a non-emergency flight. As such we aren’t going to predict when we will be coming back. It will be when both Ashley and God are good and ready.

Austin is going to heading back to Valpo following the prep meet tonight (Tuesday) to stay with his cousins until we know for sure when we are heading back. He doesn't like being away from all his swimmers, but its not easy with the rest of us away for so long.

Your prayers reinforce our faith to be patient with God’s delays. Please continue to pray for Ashley’s full recovery, as we offer up prayers of thanks for all the support you are providing us.

July 18th
Ashley laughed today.

That’s right she laughed. The doctors are not sure if it is just a reflex, or a response. My unscientific tests point to the later. She only laughed when something humorous was occurring. Only Ashley knows for sure. We will simply have to ask her later on.

Ashley’s temperature has moderated today and every test result that is in (they test for everything) has come back negative. We will get the final write up in the morning.

Hopefully the hospital’s social worker can get our flight arranged and we can back to Fort Wayne soon. With all the starts and stops on scheduling the flight we are referring to him as our travel agent now.

We don’t expect to ever know what caused Ashley’s condition, so we focus on aiding her in her recovery. We take solace in the reading from John 16:33 (Jesus said,) “In the world you will have tribulations; but be of good cheer, I have overcome the world.”

With your prayer support we will keep our spirits up and concentrate on the positive signs we see along the path to Ashley’s recovery.

July 19th
Other then a slightly raised white blood cell count the tests that came back today were also clear. Even so the doctors want to wait until all the test results are in. That means we are staying in Charlottesville at least until Saturday and it could roll into early next week based on scheduling the flight back.

Ashley continues to increase her movements. She is also showing more emotion, a combination of laughing and some frustration. We don’t know what is reflex and what is a deliberate reaction at this point. We keep focused on the positive. When we get Ashley to laugh (which we just did by dancing along with the penguins in ‘Happy Feet’ that is on TV right now) we cheer. When she expresses frustration we hold her hand, give her a kiss and tell her everything will be alright.

An EEG (electroencephalogram) showed increased brain activity from one taken two weeks ago. That tells us Ashley is indeed heeling. It cannot predict how quickly she will recover. Then again, we are on Ashley time, and God is directing that. Everyday Mary and I hear another story about Ashley being added to a prayer group and someone relaying a story about someone they have heard about that had her condition, Acute disseminated encephalomyelitis (ADEM), and making a full recovery.

Thanks to all of you for your unrelenting support for Ashley. We are so blessed!

Please continue to pray for Ashley’s full recovery.

July 20th
Another Friday in Charlottesville.

Ashley arrived three weeks ago today. This morning when we came in the doctors had already visited with Ashley. They were a few doors down from Ashley’s room, but they waved at us to come down.

None of the doctors had seen Ashley laugh so they weren’t sure if it was a reflexive action or an immediate response to stimulus. We told them that when Ashley was in the mood she would react to something funny on TV, or us doing something humorous, like dancing to the ‘Happy Feet’ movie.

Well this morning Dr. Southerland decided to test Ashley’s sense of humor. He went in alone and, well, he got goofy. (Being a self respecting Neurologist he won’t tell anyone what he did.)

Ashley responded.

When he stopped she stopped laughing. When he simply walked around she did not laugh, but when he did his stuff Ashley responded appropriately.

The team agreed this was a good sign of making progress toward recovery. All week Ashley was awake for longer periods each day. Today she barely snuck in an hour long nap before being woke up for vitals testing.

She remained active the rest of the day.

While we know there is a long way to go we are encouraged by the steady progress. Please keep in mind the vital role all of you play in Ashley’s recovery.

Your prayers’ have power that we are witness to as we see Ashley progress each day. Your continued prayers for Ashley and asking God to give us the strength to see her through to a full recovery is greatly appreciated.

July 21st
It was three weeks ago this morning that Ashley came to the University of Virginia Hospital emergency room. We thought she was just suffering a case of insomnia brought on by a long day of traveling. We all now know that was not the case, and while we will likely never know what caused Ashley affliction we are thankful that it occurred when she happened to be visiting near one of the world’s leading neurological hospitals.

Ashley rested more today than yesterday. We did enjoy a good laugh with Ashley just now when we were flipping through the channels and paused on an episode of ‘Dog the Bounty Hunter’. After a few comments on Dog’s appearance by Mary, Ashley was almost bouncing off the bed in laughter.

We would agree that laughter is the best medicine. (There must be a lot of prayers out there asking that Ashley laugh more!)

Ashley’s temperate hasn’t had a high temperature reading in the past 48 hours so we are confident that we will get the green light to return early next week. Thank you for keeping Ashley in your prayers.

We say it repeatedly, because it has had such a positive impact on us everyday, your prayers are so powerful and are the reason we can cope and focus on what is best for Ashley.

Austin will be at the league meet on Tuesday, and will be returning (once again) to coaching and guarding.

Thank you everyone for your support of Austin while we have been in Virginia.

July 22nd
Ashley finished her preventative antibiotics today, and she is not running a temperature. Now we are just waiting to find out tomorrow when we can get a flight back to Fort Wayne.

After three weeks we are more than anxious to get back home.

Ashley was a bit restless today. As she progresses she sometimes get frustrated because it is not fast enough for her. Even so we did get some smiles and laughs out of Ashley today.

We know a lot of prayers were said for us today on the Lord’s day. Please say and extra prayer that we get a flight scheduled quickly and have a safe trip back to Fort Wayne.

July 23rd
Well folks, we’re coming home! Many of the doctors that have seen Ashley came into the room this morning for the announcement, “Ashley can go home!” Dr Southerland even revealed the special moves and funny face he made to get Ashley to laugh, and it worked again!

We were so blest to have this care staff and these facilities available to Ashley. As we have done research we have seen several cases where the diagnosis, and thus appropriate treatment, took several weeks or even months.

The bar has been set high for Ashley’s care in Fort Wayne, but we are confident that we won’t be disappointed. Once again given all the people praying for Ashley our faith and hope are strong.

We will be flying out of Charlottesville for Fort Wayne tomorrow. We will have Ashley settled in by late afternoon. We may miss the league championship meet at Glenaqua (Austin will be swimming) tomorrow, but we will be anxious to hear the results; especially a GlenAqua victory!

Once we get our bearings back in Fort Wayne and determine the visitation rules we will say were Ashley will be for the next step in her recovery. Please be patient. We want Ashley to see familiar faces and we want to see and thank each one of you. We would not have made it this far without all the prayers and support each of you have provided. That said, our focus has to remain on Ashley’s recovery and there are so many details we have to tend to upon our return.

The last prayer we will ask of you from Charlottesville is for a safe flight and for those that will be caring for Ashley upon her return to Fort Wayne that they use their God given skill and talent to aid Ashley in reaching a full recovery quickly.

“Not that we are sufficient of ourselves to think of anything as being from ourselves, but our sufficiency is from God.” 2 Corinthians 3:5

July 24th
Yesterday I said we were sending the last update from Charlottesville. Well, yes and no.

I just got home, but unfortunately Ashley’s temperature spiked this morning and the doctors said no go. The transport people were literally in the hallway when they decided it wasn’t wise to move her with the sudden high temperature. The good news is that Ashley is resting comfortably tonight. The bad news is she is still in Charlottesville and not Fort Wayne. More tests are being run to try and identify what has caused the temperature to spike again. On a humorous note Ashley has only had two spikes in her temperature and both came within 24 hours of being scheduled to leave. We are starting to wonder if she doesn’t want to give up the mountain-view she has out her hospital room window.

Mary is staying with Ashley, but we decided that I needed to get back to Fort Wayne. My company is very supportive and had no problem with me working remotely out of Virginia, but after three weeks it became difficult since I could not access our secure internet sites from the hospital. That meant I was trying to stay caught up at night. More importantly Austin was expecting us home a week ago. Although he was managing well it was time for a parent to be with him as well.

So are we disappointed? Yes, but of course we could not take a chance that Ashley might become unstable in the middle of the flight. It may be an ambulance plane, but it is not a flying hospital. We also know that on the road to recovery we will be facing other setbacks and we will simply have to deal with them. We have focused in on what Dr. Greenberg, the ADEM expert from Johns Hopkins told us. “There will be setbacks and your duty to Ashley is to minimize them when they affect her recovery.” The staff at the U.V. hospital is doing everything to minimize this setback. We are aware of many of the generous offers to assist in various ways.

We are humbled by the gracious support being shown by so many. We know we will need help, but as you can imagine we are thinking of little else but Ashley’s return to Fort Wayne and starting her rehabilitation. One effort we are supporting is a benefit being organized by the Glenaqua Swim Club. Ashley swam for, coached and has been a life guard at Glenaqua (near Snider H.S.) for several years. The event takes place on August 10th. You can learn more about it in the near future on the internet at: http://glenaquaswimdiveprep.wetpaint.com/ (see the link for ‘Ashley’s Benefit’ on the left side of the home page).

Right now, as always, we ask for your continued prayers. Specifically that Ashley remain stable so she can fly back to Fort Wayne.

As we look back on the last three plus weeks it is pretty much a blur. What we do know is that all the prayers and support we have behind us is keeping us going. We thank you and we thank God for putting so many wonderful people in our path.

July 25th
The doctors think they may know what caused Ashley’s temperature spike yesterday. One of the tests came back positive showing an infection. Normally you don’t get excited about finding an infection, but this means it can be treated and if Ashley responds to that treatment it will allow for revisiting the scheduling of her return to Fort Wayne sooner. Nothing firm yet, but we are hopeful.

One thing I do know for sure; Ashley will be proud that Glenaqua won the league meet. Way to go!!!!

Mary is not on her own in Charlottesville; both of my sisters drove out yesterday to be with her. My youngest sister is a nurse and she came out with Mary on July 1st. We can’t tell you how much it meant to have Beth there at the beginning. You see someone you love hooked up to multiple monitors and every time there is a beep, or change in a reading you wonder if there is a problem. You can ask the nurse, or doctor about it and they will be honest, but you can’t help but wonder if they are just trying to keep you calm. Beth explained what they would be watching for in trends and ranges. Other than Ashley’s two temperature spikes her vital have always remained strong. She also has not had an adverse reaction to treatment.

Please pray that Ashley responds to her treatment and that her transport to Fort Wayne can be rescheduled quickly.

July 26th
The third time’s the charm. Isn’t that the old saying? Tomorrow we will make our third attempt to get Ashley back to Fort Wayne.

Her temperature has moderated so please pray that it stays down so the doctors give the okay for Ashley to fly back.

Ashley made major progress today. She responded repeatedly to the request to wiggle her toes. She had to work at it; it wasn’t easy, but it shows Ashley is fighting hard to recover.

It will be a relief to have Ashley back in town. In Virginia the focus was on active treatment to insure the affects of Ashley’s auto-immune response were arrested. That has been accomplished. Now once Ashley is back we will begin the rehabilitation stage.

We continue to be encouraged by Ashley’s improvement. The combination of her determination and your prayer support are apparent.

We are humbled by the response and the involvement by so many in the benefit being organized by the Glenaqua Swim Club. Too often the negatives in our world seem to get the attention. What we’re seeing merely reflects the reality of the world we live in. Our world is full of loving and caring people. For more information on what the club is doing you can go out on the internet to http://glenaquaswimdiveprep.wetpaint.com/ (see the link for ‘Ashley’s Benefit’ on the left side of the home page).

Thank you for pouring out your love to Ashley. We cherish your prayers and support.

July 27th
Ashley was ready. The weather was not.

Thunderstorms kept popping up between here and Charlottesville. Ashley’s temperature has stayed down so the weather is the only factor at this time. There is a chance of rain tomorrow, but thunderstorms are not likely, so Mary and Ashley should be flying out Saturday morning.

Ashley will have been at the University of Virginia Hospital for 4 weeks. She will be leaving a second family behind. The staff was great; they treated Ashley as if she were their own daughter. We look forward to the day that we can travel back to Charlottesville and Ashley can walk in a personally thank them.

I just got a call from one of our family members who went to the facility thinking we would be there this evening. While she was disappointed that Ashley didn’t arrive today the staff did show her Ashley’s room and let her know that they are prepared to receive Ashley.

Thank you for your prayers for Ashley and Mary’s safe flight. Please repeat those prayers for one more day.

July 28th
Ashley is in Fort Wayne!!!

Mary and Ashley flew in at about 2:00 pm today. It was a smooth flight and Mary said the alternating view of the countryside and cloud formations was beautiful. The flight medical staff was very caring with Ashley. The paramedics that transferred Ashley worked thoroughly with the flight medical folks to insure she was set up for the short transfer ride.

Thank you for your prayers for a safe return to Fort Wayne.

We were immediately impressed with the staff at the Fort Wayne facility. They were ready to assess Ashley and they had already reviewed her standing medical orders. The personnel in Virginia really impressed. We are happy to report that our first impressions here are very positive.

Thank you for your prayers for good care in Fort Wayne.

We are so happy to have Ashley back in town and for our family to be back together. Tonight Ashley is resting comfortably and will soon begin the rehabilitation phase of her recovery. We had a few false starts getting Ashley home, but none of that impedes her recuperation. They were mere inconveniences.

Thank you for your prayers for our family to have strength and for Ashley’s full recovery.

July 29th
It was Ashley’s first full day back in Fort Wayne. She had visits from some relatives and we met with the Neurologist. It was a busy day and a good day.

For the first time in a month Mary, Austin and I were able to go to Mass together. It felt good to be back to the parish that has provided us with so much support. The Gospel was an affirmation to us; especially verses 9-10 (Luke 11), "And I tell you, ask and you will receive; seek and you will find; knock and the door will be opened to you. For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened.”

Tomorrow we will be talking to the Physical and Occupational Therapy folks about Ashley’s rehabilitation.

Your prayers and support have brought us this far. Now as we get to see some of the people that have been praying for us we are getting an opportunity to express our appreciation. We know that we can count on your continued prayers for Ashley’s full recovery.

July 30th
Physical and Occupational Therapy started today for Ashley. They did their initial assessment, reviewed the activities we were doing with Ashley and should continue to do, and explained some of the exercises they would be doing with Ashley during this initial stage. They have several exercises that they will involve Ashley in during the aggressive therapy program to accelerate her recovery.

Ashley seems to be settling in well now that she is back in Fort Wayne. Upon her arrival the doctors ordered up several tests to insure her physical health was good. So far all the tests are coming back with favorable results.

One area where Ashley is excelling in is her sense of humor. Sometimes even when we are not talking directly to Ashley she will pick up on something funny being said and start laughing. It puts joy in our hearts to see her smiling and happy.

We continue to thank our heavenly Father for the blessings we have received along the path to Ashley’s recovery. We pray and hope for the best in Ashley’s care. Each day we encounter more compassionate healthcare providers that through their words and actions provide us with affirmation that our daughter is indeed receiving not only the best care, but loving care.

We also are thankful for the prayers said on Ashley’s behalf by all of you. With every prayer each one of you is playing a major role in Ashley’s healing.

July 31st
Physical therapy is wasting no time in implementing an aggressive rehab plan for Ashley. They conducted a myriad of tests and we were surprised at just how responsive Ashley was. One therapist placed a brush in Ashley’s hand and asked her to try and brush her hair. Ashley complied, and while she couldn’t actually brush her hair she raised it to her head each time she was asked. Visually they tested her ability to follow different objects with her eyes. A small bag of ice was placed on different parts of her body to see if she would attempt to move to displace it.

We never thought about things like that to test her responsiveness. Of course that is why there are professionals. A blessing upon us is that these professionals have a passion for what they are doing. They are investing themselves in Ashley and it shows.

I registered Austin for school today at Dwenger. I received a warm welcome from everyone I encountered as I knew I would. I also saw the genuine concern on each person’s face. The school allowed the Glenaqua benefit for Ashley to set up a table to provide information, and upon hearing that the benefit would need volunteers for various tasks the administration informed freshmen and sophomore students that volunteering would count toward their community service goal. This is another blessing that we are experiencing.

When asked how Mary, Austin and I are holding up we always acknowledge that it is an emotional rollercoaster, but we also point out that the ongoing support we receive is nothing short of phenomenal. Everyday we see new signs of faith, hope and love. It is truly awe inspiring.

Thank you for your continued prayers.