Willie Nelson - Still Going Strong
Ashleigh bought her Mom tickets for Willie Nelson at the Fraze in Kettering a week or so ago. I gave Ashleigh a number of suggestions for presents and she chose the concert. Of course, it helps that she likes Willie's music also. My wife really loves Willie and his music so she was thrilled.
We knew we would have a good time but thanks to Willie we had a great time. They upgraded our seats and provided us with backstage passes where we got to meet Willie and his family and the great guys from 40 Points.
To show you how un-cool my wife and I are we were like "OK, what does backstage passes mean?" So after 40 Points did their opening set, which we all really liked, my wife went backstage to see what we could do. She met Lukas Nelson and 40 Points and they said if we come backstage in about a half-hour we may be able to meet Willie. So, we went backstage with Ashleigh and ended up hanging out with 40 Points (Lukas Nelson, Guitar, Merlyn Kelly, Bass, Micah Nelson, Drums, and Tato Melgar, Percussion). We have pictures with Lukas, Tato, and Merlyn and they were really nice to us.
Merlyn was very patient with us and he stayed with us by the rear door and kept us company. I think he would have tackled Willie to get him to stop and say hello but such drastic steps proved unnecessary. When Willie came through the door he came right over and gave my wife a hug and gave Ashleigh a great big hug. We also got to meet the rest of the band and Willie's sister and wife.
We watched a little of the concert from the wings and then went back out to our seats. Willie was great and is still going strong and it was very cool that his boys were playing with him as well.
You would think that would be enough but there was even more. At the end of the show Willie came out to the edge of the stage and shook hands with fans from one side of the stage working over to the other side. When he got to our side, people realized what he was doing and they rushed the stage in front of us three or four deep. My wife and I were trying to keep people from tripping over Ashleigh's wheelchair and falling on her and so we did not try to get closer. But then, one of the band members came back and handed me something in his closed fist. I wasn't sure what it was and then I saw they were guitar picks embossed with Willie's picture, very cool.
I handed one to Ashleigh and she put it to her mouth. I was a little worried she was going to eat it or something because I did not tell her what it was. Then, I looked and she was kissing it. We had her kiss it again while we took the picture. So, I guess she really liked it.
One of the other people at the stage saw Ashleigh with the pick and said something like it was great that Ashleigh got a pick. Since we had four of the them, Ashleigh said we could give him one and my wife went back and gave it to him and he said we made his day. When we got home, Ash was very tired from the long day but she said she loved it.
Thanks very much to everyone who pulled this together for us and to all of the great folks we met from Willie Nelson and his band to 40 Points and the staff. My wife says if you are back this way let us know and she will do up a great home-cooked meal for everyone.
Evening With the Woodruffs
We were very fortunate to be able to meet Bob and Lee Woodruff when they came to Cincinnati for an event titled "An Evening with the Woodruffs" which supported The Drake Center. They were very gracious and asked us to meet them in their room between events. We got to spend about a half hour with them and we came away feeling like we had been friends forever they were so nice and caring.
Bob and Ashleigh had a special bond as soon as they met. Bob held her hand for a long time and Ashleigh had a big grin on her face. My wife had contacted Lee and other family members before by phone and email after Bob's injury to try to provide any help or comfort we could provide and this led to their invitation.
We stayed for the dinner event and Ashleigh was really worn out by the time we got home that night. However, in the middle of the night when my wife was tending to her, Ashleigh did more talking. My wife asked her if she had enjoyed herself and Ashleigh said yes. My wife asked her what her favorite part was and Ashleigh said "Having Bob and Lee to ourselves" She then said meeting Carol Williams and meeting all of the nice folks at our tables was the next best part.
A funny thing happened after Bob and Lee had to leave our visit to go down to a VIP book signing event. After the VIP book signing was the dinner and their speech. Bob and Lee asked if we would like to stay in their room until we went down to the dinner so Ashleigh would be more comfortable. We stayed for a while and then decided to head downstairs for the dinner. However, when we got on the elevator we were busy getting situated and before we even pushed the floor button the elevator stopped and the door opened. A lady, who we learned was from The Drake, was in the hall and asked if this was Ashleigh. We said yes, and she said come out and join the others. It turned out to be the VIP book signing and so we went in and had some hors devours and sodas while hobnobbing with the sponsors who paid hundreds or thousands to be there.
While at the book signing my wife ran into Carol Williams, a local TV anchor who was emceeing the event, and my wife asked if she would come over to meet Ash. But, before she could came over we were all asked to go downstairs for the dinner. Ms. Williams was very nice and went through the trouble of seeking us out later in the crowded dining room and came over to meet Ashleigh. She did not have to go to the extra effort and we really appreciate it.
Below is the description The Drake used regarding the event. Bob and Lee are working very hard to support our troops and improve care for our wounded. We thank them for the hard work and will continue to do what we can to support their effort and if any way possible help them personally. They are very nice people and we are very happy Bob has made such a wonderful and almost miraculous recovery.
In January 2006, ABC News Anchor/Reporter Bob Woodruff became an American news anchor wounded in a war zone when he sustained a life-threatening traumatic brain injury (TBI) from a roadside bomb in Iraq. Bob and his wife Lee, author, freelance writer, and contributing editor at ABC's Good Morning America, chronicled their family’s journey to recovery in the best-selling memoir In An Instant: A Family’s Journey of Love and Healing. The Woodruffs have since dedicated themselves to putting a face on the serious issue of TBI, especially among America’s injured military personnel. They have formed The Bob Woodruff Family Fund to support this cause.
April Showers (and May, and June, and ...)
Ashleigh Talking - More Than the Moon...
Ashleigh did some talking in the middle of the night again the other day. My wife asked how she was doing and she said fine. My wife said she loved her and Ashleigh said she loved her too. My wife said she loved her more and Ash said no, she loved her more. My wife said she loved her a whole sky full and Ashleigh replied she loved her a whole moon full. This went back and forth a few times until my wife said well we both seem to love each other a lot so let's call it a tie. Ashleigh said great because she couldn't think of anything bigger.
Ashleigh also told my wife that my wife did not have to make chicken and dumplings the next day for Mother's Day. My wife said she wanted to make them and Ashleigh said she would do it if she knew how. My wife told her she looks forward to the day that she and Ashleigh can cook and do lots of things together in the kitchen.
Brain Injury Research Grant Reviewer
I was very fortunate to be a participant in the Department Of Defense grant review process. Congress allocated special funding for research into Traumatic Brain Injury and Post Traumatic Stress Syndrome TBI/PTSD for our troops in 2007. I participated in three of the four sessions from Nov. 2007 through Jan. 2008. The funds have recently all been awarded.
Researchers from around the world were invited to submit research proposals for projects that would lead to better identification, treatment, and rehabilitation from TBI/PTSD.
I felt a little intimidated as I read through some of the proposals that could be very technical and very dense coupled with the fact that I was going to have to read my reviews aloud in the meeting rooms filled with top experts from around the globe on brain injury.
When I filled out my reviews online before the actual meetings the submission software does not allow you to see what the principal and secondary reviewers have written until after you submit your own review. I would cross my fingers and hope I was not totally out in left field on a review. Luckily,or should I say amazingly, my reviews were almost always consistent with the experts.
I did have some disagreements with others regarding scores but after the discussions at the meetings the group usually reached a consensus on the scoring. Anyone disagreeing was welcome to write the reasons for their dissent. The scores for all of the projects from the groups went to a next level review where the funding was awarded.
AIBS managed the process and did a very good job. Staff from the military were there to oversee the proceedings. I am very thankful to all of the experts who served as reviewers and to the researchers who took the time to submit proposals, all with the goal of helping brain injury and PTSD victims. I am hoping this research leads to improved care for all brain injured people. Below is the press release regarding the panels.
Press Release Re: Consumer Participation on Scientific Peer Review Panels
For Immediate Release
SCIENTIFIC PEER REVIEW FOR THE DEPARTMENT OF DEFENSE (DOD) POST TRAUMATIC STRESS DISORDER AND TRAUMATIC BRAIN INJURY (PTSD/TBI) RESEARCH PROGRAM’S TBI FOCUSED PROPOSALS
TBI advocate Ernie Szabo, Director of The Brain Injury Recovery Network, www.tbirecovery.org recently participated in the evaluation of TBI focused research proposals submitted to the 2007 DoD PTSD/TBI Research Program. As a consumer reviewer, Mr. Szabo was a full voting member, along with prominent scientists, at meetings to determine the scientific merit of these proposals.
Consumer reviewers are asked to represent the collective view of TBI survivors, patients, and family members when they prepare comments on the impact of the research on issues such as injury prevention, screening, diagnosis, treatment, and quality of life after treatment. Mr. Szabo was one of nine consumer advocates who participated in the January 2008 peer review meetings and provided comments and scores for over 100 research proposals.
Commenting on his role as a consumer reviewer, Ernie Szabo said that “We at the Brain Injury Recovery Network are very proud to be able to provide additional support for our troops who have suffered brain injuries. This was my third peer review session for this research funding program and I was impressed each time with the professionalism and dedication of the expert reviewers and very excited at the novel and innovative research projects that were proposed by some of the top experts on TBI in the world.”
“This research funding Congress has allocated offers a major influx of research dollars into one of the cruelest and most debilitating of injuries in TBI. As a parent of a daughter who suffered a very severe TBI, I can say first-hand that this injury changes the lives of its victims and their families forever. We are very hopeful that the research projects to be funded under this program will result in improvements in diagnosis, acute treatment, and long term rehabilitation for those suffering from brain injuries. Advances in care for TBI victims should provide positive benefits for both military and civilian TBI victims.”
Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research proposals for the DoD since 1995. To date, over 900 consumer reviewers have served on research panels alongside scientists in the review process. Colonel Janet R Harris, Director of the Congressionally Directed Medical Research Programs, expressed her appreciation for the consumer advocates’ perspective in the scientific review sessions. “They have provided valuable insight into funding decisions and helped the scientists understand the consumers’ perspective of innovative research.”
More information about the Department of Defense Congressionally Directed Medical Research Programs is available at the Website: http://cdmrp.army.mil.
Attached is a recent digital photograph provided that may be used in conjunction with this press release. The picture is of Mr. Szabo assisting his daughter, Ashleigh, in her therapy session as she works towards recovery.
Ernie and Ashleigh Szabo
840 Central Ave. Carlisle, OH 45005
877-810-2100
www.tbirecovery.org
email: help@tbirecovery.org
Media Contacts:
Gail Whitehead, Public Affairs, 301 619 7783
gail.whitehead@det.amedd.army.mil
Ernie Szabo, The Brain Injury Recovery Network, 877-810-2100
help@tbirecovery.org
Teaching a New Dog New Tricks
Here are some pictures of Ashleigh in her standing frame playing with her dog Sophie. In the first two pictures Ashleigh is getting Sophie to stand on her hind legs and dance. She spins around a couple of times for the treat. Very cute.
In the following pictures Ashleigh is getting ready to throw the ball for Sophie to fetch.
www.tbirecovery.org
Neurosurgeon Check-Up
Ashleigh just had a check-up with her Neurosurgeon Dr. Zuccarello. The good news is that her CT shows everything is stable after her brain injury. In fact, Dr. Zuccarello said that her ventricles even look a little smaller. Here is a picture with Ashleigh and Dr. Zuccarello.
Getting a good report from the neurosurgeon is such good news as we really worry that her shunt may malfunction again. Ashleigh has had to have her VP Shunt replaced three times and it sets her back dramatically each time.
Dr. Zuccarello took over for Ashleigh's previous doctor, Dr. van Loveren, who took a new position in Florida. Dr. Zuccarello had big shoes to fill as Dr. van Loveren was one of our favorite doctors ever. Dr. Zuccarello has not disappointed and it is easy to see how much he really cares for Ashleigh.
www.tbirecovery.org
Wii Brain Injury Rehab Therapy
You may have seen articles in the paper recently where rehab centers have been using Nintendo Wii's as part of their brain injury rehab program. Thanks to our PT, Julian, Ashleigh has been doing her own Wii therapy since last year. Here are a couple of photos showing Ashleigh playing her favorite "cow-racing" game.
Ashleigh's Physical Therapist, Julian suggested that there may be some games that Ashleigh should be able to play with the Nintendo Wii. He got his kids one and thought it might help Ashleigh as well as bring more fun into the therapy sessions.
The Wii can interpret movements made by the controller as input into the games. This is much more advanced than the previous game systems where you had to push buttons to send a signal. With Ashleigh's hemiplegia she can only use one hand and that one with limited movement. There are however a few of the games that she can use and she seems to enjoy it.
Ashleigh's little niece and nephew also love to play and they will get up in Ashleigh's bed and play with her. Some games they take turns on and a couple they play at the same time. For example, the boxing game uses one controller for the right hand and the other for the left. Ashleigh will be one hand and one of the kids will be the other. It can get a little hectic but Ashleigh enjoys the kids.
www.tbirecovery.org
A New Addition
Ashleigh recently bought the cutest puppy! The dog is a mix between a toy poodle and a Bichon Frise. Ashleigh named her Sophie.
We have had an English Mastiff for a number of years now. The problem is he is too big to really be with Ashleigh that much plus he has become very protective of Ashleigh since her accident. So, we have been keeping him in the kitchen away from the doctors and therapists and others who come to the house.
Sophie should stay pretty small and will be a good lap dog for Ashleigh whether in her bed or in her wheelchair. She has gone to soccer games with us and rides along in Ashleigh's lap. Very cute.
We are hoping she hurries and grows out of the biting stage but other than that she is a good dog.
Therapy - Standing Frame
Ashleigh got an Evolv Standing Frame from EasyStand that she has been using in therapy. This stander has a lot more support for her when standing. She has been able to increase the time she is able to stand.
The biggest difference in the stander is the support for her back and laterally. The other stander she used had a strap across the bottom. This stander gives full support for her back and has adjustable lateral supports on the sides.
Pap's Passing
We recently had a death in the family as we lost our patriarch, Dave, who all the grandkids and great-grandkids simply called "Pap". He was a wonderful man, very intelligent, caring, and soft-spoken. Dave is my wife's father and his death was unexpected and is still devastating to our very tight-knit family.
Dave was hospitalized for one problem and while in the hospital tests found he had terminal cancer. He was at first given a few months and then the next day the doctors reduced that prediction down to days. He went from the hospital to Hospice for two days and then came here to our house with a Hospice nurse until he passed away a few days later.
We really weren't sure how to deal with it in regards to Ashleigh because we were getting conflicting and confusing information from the doctors. We ended up just telling her everything we were told along the way. Ashleigh visited Pap in the hospital and stayed with me at home while I converted her therapy room into a bedroom for her Pap and Grandma. This allowed my wife to spend as much time as she could at the hospital.
Having Pap come to our house with Hospice made it nice for Ashleigh so she was able to be with him but have her bed and equipment available. We had lots of family visiting both while Pap was in the hospital and for the funeral and again having our home as the meeting place was helpful for Ash to participate.
A sad but interesting note is that Ashleigh has not been able to cry since her accident. She gets upset and tries to cry but had not cried any tears. While we were at the funeral and our cousin was singing two beautiful songs Ashleigh did cry with tears for her Pap.
It is a loss that will never be overcome but we are glad that so many of the kids and grandkids got to know Pap and feel his love for them.
Moving Her Left Hand
Ashleigh gave me a great birthday present yesterday. When I got home from a job my wife said Ashleigh had a surprise for me and she was able to purposefully move the pointer finger on her left hand. This is really the first time she has been able to do that since her accident in 1999. This was the hand that she had to have tendon lengthening surgery on just so the hand was not drawn up.
My wife said she had actually done more movement earlier in the day. She was able to move her hand up on her chest and then move it back down to touch my wife's hand. She was also able to move the fingers on command. She duplicated some of the movements today for her OT. It wasn't huge movements but it is progress and we will be happy to take it.
New Bed
If any of you have had a medical bed at home you know what the beds are like. They look like they are from WWII with the clunky metal frames and fake woodgrain panels. The motors are slow and squeaky and always sounds like the hamster needs to be changed. Sometimes you don't even qualify for a motorized version and you have to use a hand crank. The mattress was very uncomfortable.
The siderails are one of the biggest problems. They lock onto the frame and there is a gap between the mattress and the rails. The thumb springs broke on our siderails and we ended up using mouth swab sticks to hold them up.
We found the real potential danger with the siderails when we woke up one night and found Ashleigh lodged in the gap between the bed and the rail. She was able to hold herself up with her right arm otherwise it could have hung her. She was not able to call out because of her inability to speak.
Since that time we have been trying to get a better bed. We finally were able to replace her bed with a fantastic Hill Rom bed. This is one like you would have in the hospital and it even has a low air loss mattress with it. It is like going from a Model T to a brand new car. The motors are so much faster and it has a number of features we have found very helpful such as the "chair" feature and the built-in scale. The side rails are fit to the mattress and is much safer. The Hill Rom folks were just great and I have attached a pictures of them below delivering the new bed.
The Hill Rom folks have a Home Care Division although you could never prove it by our insurance company or our home health equipment provider. When we complained about our old bed we asked why we couldn't get a bed like they have in the hospital and we were told basically that it just wasn't done and the WWII style beds are the only things available. Obviously that is not the case...
Ashleigh is now so much more comfortable and she is sleeping better at night and so are we knowing she is also safer.
Mother's Day
We had a very nice surprise right before Mother's Day. We got a call from a reporter, Rick McCrabb, who asked if they could talk with us regarding a profile for Mother's Day. The attached is the article that appeared in the Middletown Journal this past Mother's Day. Very deserved praise for a very good mother.The text of the article: CELEBRATING%20MOM.htm
Order to Go - More Voicing
I was coming home from doing some measurements at a house where I will be building a wheelchair ramp. My phone cell phone rang but at first I did not hear anyone on the other end.
Then, I heard a whispery voice say "Hi Dad". It was Ashleigh on the other end. I asked if she felt OK and she said she had a headache. Her Mom then came on the phone and said Ashleigh wanted to ask me something. Ashleigh asked me for a cheeseburger and fries. After I got done laughing I told her of course and made a turn to head to McDonalds. We exchanged "I love you's" and then I headed to get her to-go order.
Ashleigh's voicing has continued to follow a pattern where she might speak for a few minutes at a time for a period of a week or so. Then we may go a couple of weeks where there is very little voicing. The voicing mainly occurs after she has been asleep.
Ashleigh has been able to voice more lately without being asleep first. The other night she talked for a very long period, probably 20-30 minutes. As she got tired it got much more breathy or whisperery but we could still understand her. A few days before Ashleigh was awake after midnight and my wife came into the room and Ashleigh was saying her prayers out loud.
That was the same night she told my wife she wanted peach cobbler. My wife said she did not have all of the ingredients but was there anything else she wanted. Ashleigh said "Yes, peach cobbler". My wife asked if she wanted her to wake me up and have me go buy the ingredients. Luckily, Ashleigh said no since it was two o'clock in the morning. Needless to say, the next day we got the stuff and Ashleigh enjoyed her cobbler.
We are just so thrilled every time she talks that we would get her anything she wants since she can so rarely voice her needs. As long as it is cheeseburgers or cobblers we are OK, if she starts asking for new cars I could be in trouble.
We are no closer to understanding this phenomenon but we sure do enjoy it every time it happens. Her mother and I believe things would be so much better for her if she could just speak to us all of the time.
Lokomat Gait Trainer
People have asked for more on the Lokomat Gait Trainer. We were able to use the computerized Lokomat Gait Training system while at The Rehab Institute of Chicago. While Ashleigh was only on it twice, it was very cool. The robotics combined with the computer system puts the user in perfect position to walk even if they are not able to help.
Ashleigh tried the Lokomat and we thought she was doing pretty good. But, the therapist thought Ashleigh's ankle was turned in in such a way as to risk getting a broken ankle if we contintued. Now, you have to remember Ashleigh can't speak but she gave this therapist a look that would kill. We saw an orthopedic surgeon at Northwestern a few days later and he recommended tendon lengthening surgery followed by casting to relieve the contractures. The surgery went better than the doctor hoped and he did not even do one procedure because the others worked so well.
The successful surgery was the good news, but being in a cast for the next five or six weeks was the bad news. Ashleigh stood in the stander the day after surgery and kept it up even in the casts. She got to try the Lokomat one more time after the casts came off and the therapists were amazed she did so well.
Ashleigh walked for about fifteen minutes and kept her effort up above the machine level the whole time. Fifteen minutes may not sound like a lot but there is probably twenty minutes beforehand standing getting the equipment on and then getting everything adjusted. All in all, she did great. Maybe when we hit the lottery, we will buy one of the Lokomats so she could really see the benefits.
For more: www.ric.org or http://www.hocoma.ch/
Continuing to Vocalize
People calling our support line (1-877-810-2100) have asked whether Ashleigh has spoken again. See bottom of blog for audio files.
Ashleigh has continued to speak aithough it is usually a week or so more frequent followed by a week or more of less frequent. Again, mainly after she has been asleep. The speech is appropriate, she initiates conversation, and she always answers correctly.
Here is a cute one.
Right before Christmas we asked what she wanted as a gift. She said she wanted a puppy. As background, Ollie was a basset hound puppy we got her a few years before her accident. Sadly, he got out into the street and got hit by a car. Ashleigh gave the dog mouth-to-snout recesitation all the way to the vet but he did not make it.
So, when we asked Ashleigh what kind of a puppy she wanted she said "I want a basset hound like Ollie. Only alive..."
Rehab- - We Love the Drake...
Ashleigh spent about six weeks in in-patient rehab that The Drake Center in Cincinnati. Our Phsyiatrist recommended it and one of the main reasons was that he wanted to try to work on her vocalization.
We were very happy with Ashleigh's progress in rehab and the therapists were some of the best we have had anywhere. They really cared for Ashleigh and she made some nice gains in strength and endurance. She also worked with a Speech therapist who has a background in computer aided speech technology and they worked with Ashleigh on her computer access.
Probably the most fun Ashleigh had was in the therapy pool. The Drake Center has a very large warm water pool for the patients to use. The most amazing part is that half of the pool floor raises up to the level of the pool deck so that patients can stay in a shower wheelchair and roll in to the pool. The floor is then lowered to the appropriate height for the patient. Very cool.
Ashleigh was able to move her body much more while in the pool. She was able to walk across the pool, with help. She was able to initiate movement even with the leg on her left side which is much weaker.
The best part of the pool is that Ashleigh really enjoys it. My wife worked with Ashleigh to come up with a few new signs so Ashleigh could sign to the doctor that she wanted to swim more. Dr. Watanabe then asked for Ashleigh to vocalize her request. It took a while but Ashleigh was able to say with her voice that she wanted to swim more. One of the only handful of times she has been able to speak without being asleep first. I have attached some pictures from the pool.
If you are not a Seinfeld aficionado then the title might not make sense. If you recognize the Seinfeld reference then you may be as big of a dork as Ashleigh says I am.
Jewel / Rob Thomas Concert
We surprised Ashleigh with a trip to see her favorite singer Jewel in Columbus. We did not tell her about the concert until the morning of the show because she doesn't sleep very well if she gets excited and anxious about things.
We had another huge surprise that did not come together until minutes before we left for the concert. My wife had been trying for weeks and weeks to contact someone with Jewel's staff to see if there was a way to meet Jewel. We got a call confirming things right before we walked out of the door. We did not tell Ashleigh in case it did not work out.
When we got to Columbus there was a line all the way down the street of people waiting to get in. One of the security staff then came and got us and escorted us to the front of the line. We were asked to wait by a gate and told they would come and get us.
No one came and the warm up band started and we were beginning to get worried. Even though we were told that Jewel upon hearing about Ashleigh said she wanted to meet her, we were worried that maybe the timing was not going to work out. Just then, someone came and got us and took us back among the buses. Jewel came out and talked with Ashleigh and Ash was in heaven. We then got the above picture with Jewel. It was almost bittersweet for her Mom and I as I remember her playing Jewel's CD's in her bedroom and singing right along. Now we just wish she could speak again to at least tell us when something is wrong.
We stayed for Jewel's concert and figured Ashleigh would be tired but she said she wanted to stay so we stayed for Rob Thomas' concert as well. Jewel even came back out and joined him for a few songs. I know Ashleigh was exhausted by the time we got home but she said it was worth it. We really thank Jewel and her staff for being so kind and taking time out to make Ashleigh's day.
Bernardo's Wedding
Bernardo was Ashleigh's PT for a number of years. He became much more than a therapist and is a close family friend. We traveled to Canton this weekend for the wedding. It was quite a trip but Ashleigh had a great time. Here are the first pics, I will add more to this post later.
Unique Table Manners
Ashleigh has continued to talk on an intermittent basis. Again, it is typically in the evening after she has dozed off for a while. She did it again the other night after I went to bed and unfortunately my wife did not get it recorded. Turns out Ashleigh was having an interesting dream.
My wife noticed that Ashleigh was waking up and that she had a smile on her face. My wife asked her if she was having a good dream. Ashleigh said yes and my wife asked what it was. Ashleigh said that my wife and Ashleigh were at a McDonalds. But while they were at the McDonalds Ashleigh was eating with her feet. My wife asked if people were looking at them and Ash said "Not really".
Any dream interpreters out there? I have heard of the classic dreams like falling or in front of people in your underwear but I have never heard of eating with your feet. Email me if this makes sense. This does shoot down one theory from a doctor that Ashleigh was just repeating random words and not really conversing. Anyway, we don't care what she says as long as she keeps talking.
Ernie - The Brain Injury Recovery Network
help@tbirecovery.org
Vanessa Visit
A long time family friend stopped by when she was back in town from Chicago. Vanessa is a very smart and funny woman who now works and lives in Chicago.
Vanessa was a fantastic host for us when we were in Chicago last year for Ashleigh's stay at the Rehabilitation Institute of Chicago (RIC). When we were scheduled to go to RIC we went up a couple days ahead of our Evaluation appointment at RIC so that Ashleigh could have a full day to rest and hopefully be very impressive in her evaluation.
Vanessa arranged an apartment for us in her building which was really nice and much better than a hotel room. It was pretty unusual for someone to be accepted at RIC so long after their injury but luckily after Ashleigh's evaluation, the doctor recommended a two week stay, that was extended to about eight weeks. The only problem was the evaluation was on a Thursday and they would not have an open bed until the next Tuesday. We decided to stay in Chicago rather than drive home and back again.
Part of the decision to stay was that Ashleigh had developed the start of a skin breakdown on the initial six hour drive to Chicago. So, we extended the stay in the apartment and did some sightseeing while we waited for the room at RIC.
While we were in RIC, Vanessa would stop by to visit and she alwas seemed to have a Chicago delicacy of some kind for us to enjoy. We really appreciate her friendship and I know Ashleigh appreciates her love and support.
Celebrity Encounter
People often get very excited when they have a celebrity encounter. Well, get ready to be jealous. Ashleigh had an encounter with a highly recognizable celebrity at the Dayton Dragon's minor league baseball game.
You guessed it, the San Diego Chicken. Ashleigh's lawyers from Dyer, Garafolo, Mann & Schultz, gave us some tickets to the game and we had a good time. Ashleigh did tire out so we left after the first few innings of the second game of a double header but not before she got to meet the San Diego Chicken.
-750613.JPG)
The Chicken did some really funny stuff on the field with his crew of little chicks behind him. It is not quite a Tom Cruise sighting but at least the Chicken did not give us any grief about any medications we may be taking...
-736492.JPG)
-725534.JPG)
-717989.JPG)
Care Flight Celebration
Miami Valley Hospital held a celebration for their Care Flight helicopter transport. All of the patients transported by Care Flight were invited and the hospital had a picnic lunch for everyone. We took Ashleigh and had a good time. It was the first time she got to see the helicopter since her accident.
We have to credit the nurses and pilot of Care Flight with saving Ashleigh's life. The local paramedics called for Care Flight very quickly after arriving on the scene. The Care Flight nurses were able to stabilize Ashleigh enough for transport. She was intubated at the scene. Without their skill and experience, I don't think she would have made it.
Donna Young, the Careflight nurse in the picture below, continued to follow Ashleigh's care for her brain injury while she was in the hospital. She really helped my wife cope with things by coming to Ashleigh's room in the middle of the night and talking with my wife. They would sometimes go for coffee and give my wife a little bit of a break. Whenever she was on duty she would stop by Ashleigh's room to check on her and lend support.
I don't want to sound real ethereal here but we have seen Ashleigh have such an impact on people through this ordeal. I think the care and concern that Donna showed that was above and beyond the norm is another example. She took one of Ashleigh's senior pictures and laminated it to the clipboard she carries with her at work. So many times people have been just extraordinary when dealing with Ashleigh.
We ran in to Donna at a high school football game our sons were playing in. Sorry to say her team won but it was good to see her. She just stood and held Ashleigh's hand the whole time she was talking with us.
Five Year Class Reunion
Ashleigh attended her Five Year Class Reunion. She seemed to have a good time and saw a number of friends she had not seen in a while. Below are a few photos.
Quite frankly, my wife and I had a lot of trepidation about the reunion. We were worried she would feel out of place, or depressed, or left out.
Some of that fear was based on the fact that when some of Ashleigh's friends have visited her, they really don't know how to handle the fact that she can't speak. We have tried to tell them to just talk about things they would normally talk about. My wife or I usually stay in the room for a while to start things off and then we leave the room to let them continue talking. With most people, the room soon turns quiet. We come back in but the conversation often is with ourselves and the visitor.
So not knowing if Ashleigh would be ignored or if she would become upset seeing the others we made the trip. At first, we felt a little ignored but then a couple of girls came over and started talking with her. It is interesting that both of the girls are in nursing. As the night wore on it got better and it ended up being pretty comfortable.
Near the end of the party one of Ashleigh's favorite teachers dropped in to say hello. Mr. Fogle has been battling problems of his own as he has successfully survived a life threatening battle with cancer. He came over and spoke with Ashleigh and she really appreciated it.
For me, I kept thinking that it was right after Mr. Fogle's English final exam that Ashleigh and Celeste went to lunch and then had the accident that has changed all of our lives.
Here is Ashleigh with a couple of her girlfriends. Don't email, the beer in Ashleigh's hand was just a prop. She couldn't drink even if she wanted to with her seizure meds.
Jennifer Visit
There are a few pictures below from a visit we had from Jennifer and her mother, Bev and father, Randy. We knew Jennifer for weeks before she ever knew us.
You see Jennifer was injured in an auto accident the same day as Ashleigh was and was in an ICU room down the hall from us in a coma. Ashleigh and Jennifer both suffered brain injuries and their recovery was following a similar path.
Jennifer's car hit a tree in the early morning as she was headed back home. She suffered a severe brain injury. Ashleigh's brain injury brought us to the hospital some eight hours later.
We bonded with Jennifer's family as both of our families were living in the ICU worrying if our daughters were going to live or die. Jennifer's constant companions were her parents, her brother, and her boyfriend. We all became friends and tried to help each other.
It was very helpful for us to compare notes and learn from each other as we struggled with coping with this terrible situation. To show you how fickle brain injuries are, Jennifer seemed more seriously injured in the early phases. Ashleigh was showing more early movements and had less severe side effects such as the neuro storms and foot drop. However, Jennifer has since recovered many more of her abilities and is doing fantastic. She is still working hard on her recovery and is trying to overcome some continuing issues. We are so happy for her and her family. She is the sweetest girl you could ever meet.
An example of their kindness was when we had to attend our niece Celeste's graduation and Jennifer's family was kind of enough to care for our son while we spent a couple of hours away from the hospital. When we got back, our son jokingly gave us grief and said that Jennifer's parents even brought in pizza while we always make him eat in the hospital cafeteria.
Jennifer and her family continue to pray for Ashleigh and still call and come to visit her. They live over an hour away but still make the trip to see us. We appreciate their concern and commitment so much.
-757925.JPG)
-744101.JPG)
-730743.JPG)
-721039.JPG)
