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.
Wednesday, October 31, 2007
Monday, October 22, 2007
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.
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.
Monday, October 15, 2007
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.
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.
Monday, October 8, 2007
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.
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.
Monday, October 1, 2007
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.
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.
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