Wednesday, January 28, 2009

Natalie's Baptism



Godfather Jason with Natalie

We had a fun outing recently as we attended little Natalie's baptism. There was a party after and Ashleigh had a very good time. Natalie slept through the beginning of the ceremony but woke up just in time for her blessing. She looked very pretty and was perfectly behaved. No surprise as she is always smiling.


The baptism was right after the regular Mass time and so we went early to attend the Mass as well. Ashleigh once again showed her spirit during the Communion. She likes to participate in Communion and when she gets Communion at home they usually give her just a quarter of the wafer. In church they gave her the whole thing so my wife and I were holding our breath that she did not choke. Then came the wine. Now, my wife is very concerned about Ashleigh getting exposed to germs of any kind so the thought of drinking from the community cup, especially in winter, was out of the question. But, true to Ashleigh's nature, she just reached up and grabbed the chalice and took a drink. I thought her Mom was first going to slug me for letting her do it and then faint.

The church we go to is quite old and not very wheelchair accessible. The aisles are very narrow and there was not anywhere to park a wheelchair without blocking the aisle. Because of that Ashleigh received home visits from the church.

A friend from church said things are better now as they have recently made a space for a wheelchair by removing part of a pew. While we did fit Ashleigh's chair into the space by turning sideways, it is still very tight and she could not see the baptism very well, if at all. We will probably stay with the home visits.



Ashleigh and Celeste (Natalie's Mom)




Poppy (Hank) with Natalie





posted by Ernie Szabo @ 4:35 PM   5 comments

Caroling


It was a few days after Christmas and Ashleigh had been dozing when I noticed she was moving her lips trying to say something. Since she can not typically vocalize and when she does it is often very breathy, I put my ear very close to her so I could hear.

I asked her what she was saying and she said she was singing. I asked what she was singing and she said it was Silent Night. I asked if I could hear some more and she ended up singing the whole song, albeit in very whispery way. It was the best present we had this year







posted by Ernie Szabo @ 1:57 PM   0 comments

Thursday, November 06, 2008

Hope Everyone Voted



Hope everyone was able to get out and vote on Tuesday. Whether your candidates won or lost, casting your vote is very important. Below are a couple of pics of Ashleigh at the polls. She has not missed an election since her accident. If she can do it, the rest of us don't have any excuses.

Voting for the disabled is a priority in most states and is very easy. Because of Ashleigh's motor skill issues I filled out her ballot for her after she gave me the signal for which candidate or choice she wanted. I think she is very proud to be part of the process.






posted by Ernie Szabo @ 12:52 PM   7 comments

Saturday, October 25, 2008

Greeting Gov. Palin



Ashleigh was selected to be a Greeter for Governor Sarah Palin when she arrived in Cincinnati for a rally and a fundraiser. The very helpful staff of the person hosting the fundraiser set everything up for us. Ashleigh was in a small group of people who welcomed Gov. Palin as she arrived at the airport before boarding the bus to the rally.

It may be risky to bring up politics and you may not agree with our political leanings but hopefully you can appreciate the fact that Ashleigh's ability to be aware and engaged in the election is something we see as a positive no matter which candidate you may support.

Ashleigh is excited that there is a woman VP candidate and she really likes Gov. Palin. She has watched all of the debates and watches coverage on the news channels as well. She has voted in every election since her accident.

Governor Palin is very nice and very caring. She thanked Ashleigh for coming and said she really appreciated the effort she knew it took for Ashleigh to be there. When I told her that Ashleigh watched her all the time she told Ashleigh she would try her best knowing that she was watching.

Governor Palin then shared a few words with my wife and I looked up and they were hugging. I think it was that bond that mothers of special needs children have. She then came back and gave Ashleigh a big hug and a kiss and thanked her again for coming out to welcome her. Ashleigh signed that she loved it.

A funny thing is that the event the Governor came to Cincinnati to participate in was originally scheduled earlier in the month but the remnants of Hurricane Ike had come through the area and knocked power out across the state. We had to take baths out of a bucket but we drove to the airport to meet the Governor. We found out after we arrived at the airport that the event had been cancelled. Luckily we were able to make it to the re-scheduled date.



The Enquirer/Malinda Hartong

Alaska Gov. Sarah Palin descends the stairs from her plane and greets local supporters. She hugs Treva Szabo, mother of Ashleigh Szabo, of Carlisle, who suffered a brain injury. Ashley was in attendance in a wheelchair.

The Enquirer/Malinda Hartong

Sarah Palin descends the stairs of the plane and greets local supporters on her way to the Roberts Centre for a Road to Victory Rally.

The Enquirer/Malinda Hartong

After greeting Ashleigh Szabo of Carlisle, Ohio, who suffered a brain injury at the end of her high school senior year, Sarah Palin boards the bus to go to the rally.





posted by Ernie Szabo @ 5:06 PM   2 comments

Friday, October 24, 2008

Ashleigh's Security Force



Here is a great picture of Ashleigh with the Ohio State Troopers who made up the motorcade riders when we went to the Gov. Palin arrival I think you would feel awful safe with these guys on your side.

My wife saw some of these patrolman inside of the airport terminal while we were waiting on Gov. Palin. She went up asked if she could get thier picture with Ash. They were so nice and suggested we go outside by their motorcycles. A lady from the Cincinnati Enquirer was there and she agreed to take the picture. Of course it didn't hurt that my wife and Ashleigh thought the guys looked very good and my wife especially liked their riding boots.





posted by Ernie Szabo @ 11:01 PM   0 comments

The Not So Simple Things...


We had a scare the other night that just reminded me again of difficulties people face when their bodies are compromised. It sure does not seem fair, but even the simplest things become a challenge.

Ashleigh was having trouble urinating the other day to the point that we decided if she did not go in the next half hour we were going to have to take her to the ER. Luckily, we did not have to take her especially when she almost always gets an infection whenever she is catheterized.

People with paralysis also face these type of difficulties. Bowel programs are needed to keep the individual healthy. And it doesn't stop there. We are real sticklers about trying to keep people away from Ashleigh when they are sick because it is just so hard on Ashleigh when she gets even a little cold. First, she is not able to tell us when something is wrong. Secondly, small things like blowing your nose, clearing your throat, and all the other things we take for granted can be difficult or impossible.

Ashleigh has trouble moving so she can sometimes get in an awkward or even dangerous position and not be able to move herself. On her old bed she slipped between the bed rails and got stuck. While I try to keep a good attitude, this is the kind of stuff that really kills me. Here the person with a severe brain injury or paralysis or other compromising problem has so many challenges to face and here on top of everything else they can't even go to the bathroom or rub their face when it itches.

I know there is supposed to be a reason, but, can't these folks just catch a break and have a few of the simple things stay simple things?

posted by Ernie Szabo @ 7:33 PM   3 comments

Thursday, October 23, 2008

Hurricane in Ohio


We had some really bizarre weather recently. The remnants of Hurricane Ike came through Ohio wit a vengeance. We had wind gusts at eighty mile plus an hour and sustained winds in the forty's and fifty's. Power was out across the state. We had a lot of limbs down but none damaged the house.

We had a double whammy in that we are on a well for our water and without electricity we do not have water either. The storm hit on Sunday afternoon and we did not have power again until midnight on Thursday. The good thing is that we had purchased a small gas powered electric generator that allows us to to keep Ashleigh's room with electric.

We had used the generator a few times when electric was out for a few hours but we never had anything like this before. Our primary concern was keeping the pulse/ox machine going so we could monitor Ashleigh's stats and to keep her bed inflated to avoid the risk of pressure sores. Another big positive was we had the refrigerator powered and we even had the TV working although we had to use the DVD only as the cable was out.

The city had a huge tank of water and the residents on wells could come and get water to use. We found bottled water at the groceries that were open. At first I had to drive quite a ways to find gasoline for the generator but eventually more stations got their power back.

Certainly not fun, especially for Ashleigh, but we were still a lot better off than the people in Texas who had to suffer the flooding waters from Ike while all we got was the wind.

posted by Ernie Szabo @ 7:14 PM   0 comments

Monday, September 01, 2008

Rascal Flatts Concert



Ashleigh was able to go see another one of her favorite bands, Rascal Flatts. Not only did she get to go to the concert but she also was able to meet them backstage.

No surprise to anyone that knows us, but we are always late. And now that my wife has to get herself ready and then get Ashleigh ready, we are now usually really late. But on the day of the concert my wife had everyone ready right on time. That was before we got to the freeway. The freeway was backed up for miles. What made me mad was that I had a plan to avoid the accidents they mentioned on the radio that were closer to Cincinnati but they did not report this accident.

We went about 5 miles in twenty five minutes and I knew we were in deep trouble. We were supposed to be in line for the Meet and Greet at 7:15 and it was becoming obvious we were not going to make it. But luck was with us as we arrived at the line at the gate at 7:30 and there were still people in line. Luckily they were having two sessions and we had made it! With Gary LeVox and Jay DeMarcus hailing from Columbus I think there were extra people which helped us not miss meeting these great guys.

You can see by Ashleigh's great smile she was loving meeting these guys. It would have been very much human nature for them to rush through the their obligations like the Meet and Greet to spend time with their visiting family members. But, instead they took their time and really welcomed Ash and made her feel good. Jay even gave Ash a little blessing as we started to leave.

Their music is just great and the show was excellent. Ashleigh had a great time. Being up in her chair so long is very tiring for her and she slept a lot the next day but she signed that it was worth it.

There were a couple of caring people that made this trip possible for Ashleigh and I really want to thank them for her and from the people that love her. (but I won't name names to protect their inbox)

One thing for sure is if Ashleigh keeps this up you can forget Kevin Bacon, it is going to be Six Degrees of Ashleigh Szabo.









posted by Ernie Szabo @ 1:20 PM   5 comments

Sunday, August 31, 2008

Wedding Fun


We recently attended a cousin's wedding. We had a very nice time and Ashleigh seemed to enjoy herself.

Ashleigh is so cute in that she likes to participate in all of the wedding rituals. She almost caught the bouquet, she did the dollar dance, all that stuff. We got to visit with family we don't get to see often enough which was great.

My wife and I have special feelings for the parents of the groom and their extended family. This family was so supportive to us when Ashleigh was first hospitalized immediately after her brain injury. The father of the groom has two brothers and along with their wives and the boys' parents this group drove the 3-4 hour round trip numerous times to try to comfort and support us at the hospital. We are very grateful to them for helping to provide us the strength to go forward.










For more information on traumatic brain injury visit our site www.tbirecovery.org

posted by Ernie Szabo @ 8:45 PM   0 comments

Saturday, August 16, 2008

Brad Paisley / Jewel Concert




We went to another concert recently. Ashleigh has been a big Jewel fan forever and Jewel was in concert in Cincinnati with Brad Paisley.

We had a really good time made a lot better when my wife was able to get Ashleigh into the Meet and Greet sessions with both Jewel and with Brad Paisley. Trying to find the right people to get permission to be in the Meet and Greet is very difficult. I asked my wife if she was sure it was worth it. She said that when she saw Ashleigh's big smile when she met Jewel and Brad that it was definitely worth it. There is so little Ashleigh can do for entertainment that anything that brings her joy is well worth any trouble on our end. I just wish we could do more.

When we got to meet Brad Paisley after his show we had even a bigger surprise. My wife told Brad that we were disappointed that we did not catch the hat Brad threw into the audience. She said Ashleigh would be happy to take his shirt instead. (I think she was joking but she and Ash both think Brad is very handsome) Brad said he didn't know about a shirt but that he thought he could come up with something. He said he would get a hat from the bus and give to her. He sent the hat back autographed to Ashleigh.

Ashleigh picked the hat off of her lap and I thought she was going to try and look at it. No way, she tried to put the hat on her head. I helped her a little and she wore that hat all the way home, smiling all the way. Ashleigh's brother keeps trying to trade her something for the hat but she keeps signing no deal to all of his offers.

The other acts at the concert were Julianne Hough and Chuck Wicks both of whom were very good. However, when I suggested my wife arrange a Meet and Greet with Julianne Hough I got punched in the arm for asking.

We knew from meeting Jewel before how sweet she is and she was just as gracious this time. Ashleigh gave Jewel a copy of a picture we took with Ashleigh and Jewel from one of her concerts a few years ago. Ashleigh gave her cousin Celeste's husband, Chris, one of the pictures Jewel gave us and he is very happy.

Brad Paisley is also very, very nice. He was so kind to Ashleigh and wanted to make sure she had enjoyed the show and had a good time. He went out of his way to give her the cowboy hat and we are very appreciative. My wife said it felt like we had known him for a long time even after spending just a few minutes with him.

Thanks again so much to Jewel and Brad and all of the people that helped us get Ashleigh back to meet them including the people at Hersheys who made some calls.



posted by Ernie Szabo @ 12:09 PM   3 comments

Friday, August 15, 2008

eVO Pedaler

video

Ashleigh has a new piece of exercise equipment that we think is producing some good results. It is an eVO pedaler from Assistive Therapy Solutions Inc. www.assistivetherapy.com This machine is an exercise bike but it is motor driven and has handles that also exercise the arms. Since Ashleigh has hemiparesis where one side is much weaker than the other as a result of her brain injury, the motor helps pedal the bike on the weak side. We have already seen increased endurance and strenghtening and well as reduction in tone in her left arm. When Ashleigh first started her left arm could not even be stretched to remain on the handle bar. Now she can keep her hand (with assistance) on top of the handle through the range of motion. We have found that her left arm stays more relaxed even hours later when she is back in bed. Ashleigh really enjoys the eVO and it is now her first choice when the therapists ask her what she would like to do in her therapy sessions. Ashleigh typically pedals for about 40 minutes in her therapy sessions. We start off slow and then ramp up fairly quickly to the higher speeds. Then after fifteen minutes or so, we turn the machine off and she pedals the bike manually for about five minutes. There is now just one little area in the rotation where we have to help the left foot lift the pedal through the cycle. After the manual period we rest for a minute or so and then she does more pedaling for the rest of the session. The pictures include Ashleigh and her therapists - Jan OT, and Julian PT, and me.




posted by Ernie Szabo @ 2:50 PM   0 comments

Thursday, August 14, 2008

Poor Old Reggie...



Ashleigh's English Mastiff Reggie has passed away. The life span for a Mastiff is 8-10 years but Reggie lived to be about 13 years old. Even though it was time it is still upsetting. Ashleigh cried for Reggie who we had since he was a baby.

Reggie was having a lot of trouble with his hips and it got to the point where we decided we were going to have to have him put to sleep. It got so bad that he could not even support his weight at times to stand up. Before we could take him to the vet he passed away over the weekend.

Reggie was such a big baby his whole life. All he wanted was to be with us. When you went to another room he would get up and follow you and then lay back down at your feet. Sometimes on your feet. He was also a leaner. He loved to lean up against you. The problem is he out-weighed everybody in the family.

We got Ashleigh a Bichon Frise / Poodle mix about a year ago so that the little dog could be with her more than Reggie. Reggie even though he would have relished it, was too big to get in her bed or sit on her lap in her wheelchair. We hope little Sophie will help Ash get over losing Reggie.






posted by Ernie Szabo @ 3:24 PM   2 comments

Wednesday, August 13, 2008

Walking In the Gait Trainer



Here are some pictures of Ashleigh walking in the gait trainer (LiteGait). She was doing so well with the walker that we tried it one day without it. I think she looks great!

She still has some trouble with trunk control so her PT, Julian, and I were helping her to stabilize. She has a knee brace on to help her weaker leg. The LiteGait will protect her from falling.

In the walker we typically do four passes at about fifteen feet per pass. Lately she has been able to go five passes.






posted by Ernie Szabo @ 4:07 PM   1 comments

Wednesday, August 06, 2008

Ashleigh's Birthday


Ashleigh recently celebrated her 28th birthday. it is hard to believe it has been nine years since her accident. These are certainly not the circumstances we imagined for her.

While we are happy for all of the progress Ashleigh has made, sometimes anniversaries or birthdays also serve as a painful reminder that your loved one has not recovered from their brain injury as much as you hoped. Nevertheless, all we can do is keep moving forward.

Anyway, here are some pictures of Ash opening a couple of her presents. One picture has her little God-daughter, Paige, with the birthday card she drew for her. The other picture is Ashleigh's niece and nephew and her cousin's three kids who were here on her birthday.





posted by Ernie Szabo @ 5:27 PM   1 comments

Wednesday, July 16, 2008

A Beautiful Baby Girl



Our niece Celeste and her husband Chris recently had a beautiful baby girl, Natalie Grace. We are lucky that they live close and Ashleigh gets to see her a lot. Ashleigh loves holding her and taking care of her. Here are some pictures of Ash and the baby.











posted by Ernie Szabo @ 4:52 PM   0 comments

Sunday, July 06, 2008

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.






posted by Ernie Szabo @ 9:40 PM   2 comments

Saturday, May 10, 2008

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.



posted by Ernie Szabo @ 11:38 AM   4 comments

Friday, May 09, 2008

April Showers (and May, and June, and ...)




Here are some pictures of Ashleigh in her roll-in shower. She really enjoys it and it really relaxes her. Once we figured out how we could do it in our old house, we are sorry we waited so long.

It took us forever to finally build Ashleigh a roll-in shower. The problem is the layout and structure of our house. We have an old farmhouse built in 1868. The interior and exterior walls are all three brick thick walls. Great for having a solid house but bad for any plumbing or electrical modificatons. We ended up tearing out a pantry area in the kitchen and turning it into the shower.

My brother-in-law, Hank helped me tear out the old floor and we cut down the floor joists to lower the floor area so the shower chair could roll right in without a lip. The drain and water lines were moved. We then created a custom mud pan so the floor slopes to the drain. First a pre-slope, then a shower pan liner, and then the top layer of mud angled to the drain. I then had to put concrete board on the walls before tiling the floor and walls. I also installed an anti-scald valve and hand-held sprayer. My wife picked out the subway tiles and coordinating floor tile. I think it turned out pretty good.

Ashleigh uses a reclining PVC commode/shower chair to shower in. My wife created a homemade device to keep the water out of her eyes which works pretty well.







posted by Ernie Szabo @ 2:58 PM   0 comments

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.





posted by Ernie Szabo @ 2:36 PM   2 comments

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



posted by Ernie Szabo @ 8:43 AM   0 comments

Monday, March 17, 2008

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

posted by Ernie Szabo @ 7:14 PM   2 comments

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

posted by Ernie Szabo @ 6:48 PM   2 comments

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

posted by Ernie Szabo @ 5:41 PM   3 comments

Sunday, October 28, 2007

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.

posted by Ernie Szabo @ 12:31 PM   16 comments

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.







posted by Ernie Szabo @ 10:11 AM   2 comments

Friday, June 22, 2007

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.

posted by Ernie Szabo @ 5:47 PM   5 comments

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.

posted by Ernie Szabo @ 5:42 PM   3 comments

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.





posted by Ernie Szabo @ 5:41 PM   5 comments

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








posted by Ernie Szabo @ 5:39 PM   1 comments

Friday, April 27, 2007

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.

posted by Ernie Szabo @ 3:54 PM   4 comments

Sunday, March 11, 2007

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/





posted by Ernie Szabo @ 9:40 PM   2 comments

Sunday, March 04, 2007

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..."





posted by Ernie Szabo @ 7:44 PM   0 comments

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.

posted by Ernie Szabo @ 5:16 PM   0 comments

Sunday, June 18, 2006

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.







posted by Ernie Szabo @ 10:22 PM   13 comments

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.







posted by Ernie Szabo @ 10:12 PM   2 comments

Saturday, May 27, 2006

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

posted by Ernie Szabo @ 10:13 AM   1 comments

Thursday, May 04, 2006

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.





posted by Ernie Szabo @ 11:18 AM   0 comments

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.


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...





posted by Ernie Szabo @ 11:16 AM   0 comments

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.





posted by Ernie Szabo @ 11:15 AM   2 comments

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.

posted by Ernie Szabo @ 11:14 AM   0 comments

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.









posted by Ernie Szabo @ 11:10 AM   0 comments

Arboretum Visit


Below are some pictures from the Cox Arboretum. We went ot visit the arboretum the weekend before Celeste's wedding to check the place out and see how accessible it was. This place was going to be the site of Celeste's reception.

This kind of points out some of the challenges when caring for a disabled person. First, you need to make sure the building is accessible for wheelchairs. Not usually a problem for public spaces but almost always a problem for homes. Secondly, there are extra considerations to think about. In our situation, Ashleigh's aunt and uncle arranged a space at the reception hall where we had a hospital bed delivered so she could lie down when she was tired or needed to change.

You often need to bring equipment, like a suction machine or other things like medications, blankets, etc. Some things are easy to forget until you find yourself away from home and realize you need a straw for a drink. Many of the simpler things we take for granted prove to be difficult when you are disabled. It's up to the family to try and anticipate those needs to make things as comfortable as possible for your loved one. More fun facts of having to deal with brain injuries.






posted by Ernie Szabo @ 10:58 AM   0 comments

ENT Visit


Ashleigh had an appointment with an Ear Nose & Throat specialist. Her doctor wanted the ENT to do a videoscope of her throat just to make sure there were no problems with her vocal cords that could be preventing her from speaking more.

Ashleigh has not been able to speak since her brain injury. See the post below "Ashleigh's Voice" to hear Ashleigh speak.

Our visit to the ENT was actually the second trip in the last few weeks. The first visit the doctor took the history and said come back later for the videscope. Very frustrating since we thought we were there then for the scope.

They squeezed us in with an 8 AM appointment for the videoscope. That meant my wife and I got up about 5 AM to start getting ready. I am not an early riser. Then of course when we got to the doctor's office, the doctor who was going to do the procedure wasn't even there yet.

After the procedure which is fairly quick and no too difficult for Ashleigh we went back to the other doctor's treatment room for him to read the results. He said that there does not seem to be any problems or any areas where Botox injections would help.

The doctor basically said that Ashleigh's vocal cords seem to be working fine as her recordings show. The bump that is visible in the pictures below is a cyst but he said not to worry about it. He said it could make her voice a little raspy but given all of the other issues we should just continue to watch it over the next few months.

He did say one thing that drove my wife nuts. He said when Ashleigh talks to just encourage her. I took that as the doctor really not having much to say and was just kind of saying something to wrap things up. My wife took it more literally like the doctor really thought he was giving us some new direction. Did he think that when she started talking for a few minutes after not talking for six years that we were not trying to encourage her? That was why we were in his office in the first place trying to learn if there was anything else we could do to get her talk more.

We joked that here, after six years of no voicing, that without the doctor's wonderful insight we would have kept telling Ashleigh to keep quiet every time she tried to talk.




posted by Ernie Szabo @ 10:50 AM   0 comments

Rehab Institute of Chicago


My wife saw a report on TV about the Locomat, a robotic gait trainer that was being used at The Rehab Institute of Chicago. We called and set an appointment to go to Chicago for an evaluation.

We decided to go up the day before the appointment so Ashleigh could rest from the drive. next day we went to the appointment and were told the doctor we had been working through had been called out of town for a family emergency. Luckily, they had another doctor do the eval but he did not know any of the groundwork we had laid to try to get Ashleigh accepted.

I think he was pretty reluctant, but Dr. Phillip agreed to bring Ashleigh in for two weeks to see how it goes. The only problem was that there was not going to be an empty bed until about three days later. We decided it would be easier on Ashleigh to spend the weekend rather than drive back and forth twice. And as things always go, we were doing the sightseeing thing o the Miracle Mile when Ashleigh's wheelchair broke and would now only go in circles when using the power drive on her wheelchair.

The rehab was great. They really took care of Ashleigh and the facilities and equipment are fantastic. We ended up staying for six weeks until our insurance coverage ran out. The staff in the Tech Center wanted to keep her even longer.

The Tech Center worked with Ashleigh daily to get her access to a communication system with the computer. They decided on the CyberLink headband for the input device with Boardmaker software.

Ashleigh ended up having tendon lengthening surgery on her legs and ankles to help the contractures. But even with casts on her legs and a cast on her left arm for serial casting she still went through all her therapy every day. Then in the late afternoon or evenings, she still wanted to participate in the recreational therapy sessions doing crafts, making paper, and other fun stuff like the therapy dogs. All in all we had a great time and saw lots of improvement. We can understand why the Rehab Institute of Chicago is the top rated rehab in the country.










posted by Ernie Szabo @ 10:49 AM   1 comments

Oprah Show Taping


Ashleigh is a huge Oprah fan. She watches her every day. We really admire Oprah's compassion and the way she uses her celebrity to help others. So, when we were in Chicago at the Rehabilitation Institute of Chicago my wife decided to try to get tickets for an Oprah show. Let me just say, that getting tickets is easier said than done.

Somehow my wife got tickets lined up for us. The next step was the hospital staff. We were very worried that with insurance or hospital policies it was going to be a big hassle. As you may have run into, some of the folks in the medical world are real sticklers for policies and rules.

It turned out fine. The doctors said they were okay with it as long as each of the therapist signed off on the idea. The therapists were great. When it came time to leave RIC for the taping we had every therapist and nurse offering Ashleigh their service as her personal medical staff as long as they could come along to the show.

So we made the trip to Harpo Studios and Ashleigh was probably the only hospital patient to attend an Oprah taping. The Oprah staff was just fantastic. We did not even get all the way across the street from the parking lot before we were met by a staffer.

Ashleigh was escorted inside out of the cold immediately and we got right through to the head of the line and then to the waiting area. A ramp was set up in the studio and Ashleigh and another lady in a wheelchair were seated. The other audience members then came in and the show began. Oprah was very personable and we thought she looked even more attractive in person. Ashleigh really enjoyed herself.

The only negative was that the show topic was about cheating husbands. Maybe not the best day to be one of the few guys in the audience. If you can go by the schedule of when the shows aired then we just missed the Tom Cruise "jump on the couch" show. Ashleigh would have really enjoyed that show.

After the taping my wife asked if there was any way for Ashleigh to meet Oprah. They checked but Oprah was already changing for the second taping. Instead, Oprah signed a copy of her magazine that I scanned in below. Ashleigh really treasures that magazine and the whole Oprah experience. My wife is still hoping for Ashleigh to be on Oprah as a guest one day. She thinks Asleigh's story and her spirit and determination she has displayed sincer her acident is the kind of story Oprah's audience would enjoy.

One last note, when we saw the show air on TV we were never shown in any of the audience shots. The show featured a number of taped segments where Oprah had interviewed the guests elsewhere so there were fewer opportunities to get on TV, but, we were hoping Ashleigh would have been on TV at least once. Maybe next time...

posted by Ernie Szabo @ 10:49 AM   0 comments

Hand Therapist


Ashleigh has been seeing a hand therapist in conjuction with the orthopedic surgeon who did the tendon lengthening on her hand and wrist.

In the photos below you can see therapist Bob Schnieder fitting Ashleigh with some new splints he created for Ashleigh. These splints have been crafted to also try to relieve some of the high tone and spasticity caused by the brain injury. Bob made a splint that keeps the wrist straight. In addition, it has a soft tube that hooks on to the wrist splint that is being pulled against the thumb to break up the tone. Finally he created individual finger splints to relieve the "goose necking" that is going on with her fingers as a result of the surgery. It is like the fingers have hyperextended at the second joint.

We use to have to worry about her fingers curling into her palm and now we are working to get them to curl. But, that is a minor price to pay. The tendon lengthening surgery has made a huge difference in the positioning of her hand and wrist. It has to be so much more comfortable.

If you or your loved one has hand or foot contractures I would urge you to see an orthopedic surgeon and a hand therapist for a consult. Even if the situation is not bad enough for surgery, the hand therapist may be able to construct some splints that will ease the contractures. Keep in mind that it will take a couple visits to get everything fitting well and continued check-ups as the situation changes. Watch the skin carefully for redness or breakdown and follow the guidelines the therapist gives for how long to keep the braces on.











posted by Ernie Szabo @ 10:34 AM   0 comments

Wednesday, May 03, 2006

Little Jake Pays a Visit


Jake is Ashleigh's cousin Jason and his wife Tina's little boy. They came down from Columbus and paid a visit. Ashleigh enjoyed holding him and Jacob seemed pretty content. Jason is Celeste's older brother.

My wife's parents Maxine and Dave also were over for a visit. I have included some pictures below.




Ashleigh and Jacob



Great Grandma Maxine and Jacob



Great Grandpa Dave (Pap) and Jacob

posted by Ernie Szabo @ 10:08 PM   0 comments

A New Arrival - Evan


Celeste and her husband Chris had a beautiful baby boy. Ashleigh loves helping taking care of babies and really has a good touch. The kids just calm right down and usually drop off to sleep. Below are a few pictures of baby Evan's first visit.

When Celeste had her first baby, Paige, Ashleigh was at the hospital for the birth. This time we babysat for Paige. Celeste and Chris stopped by our house on their way home to show off the new arrival.



Cute little Evan



Evan and the proud Dad, Chris



Celeste, Evan, Poppy Hank, and Grandma Pam



Ashleigh and Evan



Ashleigh and Evan holding hands.



Big sister Paige and Evan



Marsha and Evan

posted by Ernie Szabo @ 9:13 PM   0 comments

Another Wedding


Although Marsha and Ashleigh loved the movie the "Wedding Crashers" we were invited to this wedding. Our daughter-in-law Vickie's brother, Michael was married. Although it was only a week after Celeste's wedding, Ashleigh was up for attending and had a good time. Below are a few photos.



Ashleigh dressed for the occasion.



The happy new couple, Michael and Kim.



Ashleigh dancing with the groom, Michael.



Vickie and Rachel, our daughter-in-law and granddaughter.



Vickie with our grandkids, Rachel and Morgan on the dance floor.

posted by Ernie Szabo @ 4:48 PM   0 comments

The Wedding Pictures - Vol. I


Ashleigh was Maid of Honor at her cousin Celeste's wedding. She looked really beautiful and had a good time.






Here is Ashleigh, her younger brother, Brenton and his girlfriend Megan.



From left to right; Vickie (sister-in-law), Rachel, niece, Lee, older brother, Ashleigh, younger brother, Brenton and his girlfriend Megan.





From left to right; Lee, older brother, Morgan, nephew, Vickie (sister-in-law), Rachel, niece.



The beautiful bride, Celeste and her daughter, Paige.





posted by Ernie Szabo @ 1:49 PM   0 comments

Surprise PT Visit


Ashleigh had a great surprise over the weekend when her old PT dropped by for a visit. Bernardo had been Ashleigh's Physical Therapist for about four years before moving away for a different position with the VA hospital near Cleveland.

Bernardo became much more than a therapist to us. He is such a great person and really cares for Ashleigh. In addition, his family was mainly in New Mexico so at holidays he didn't always have family around so he became a fixture at our house at holidays and birthdays whenever he stayed in town. The whole family enjoyed his company.

This might embarass Bernardo a little but I have to say all of the women in the family didn't mind having him around at all. If you ask Ashleigh she will give her "woo-woo" eyebrows where she kind of raises them up and down. Some of my wife's relatives from Florida met Bernardo when they were in town visiting and they still always ask if Bernardo is going to be around when they come for their next visit.

Bernardo hand delivered an invitation to his upcoming wedding in mid-June. Ashleigh really enjoyed the visit and is looking forward to attending the wedding. It is going to be a challenge because the wedding is about three hours north of us. We haven't quite figured out the details yet but we will probably go early and find somewhere where Ashleigh can lay down a little for a while after the trip and before the wedding.

Knowing Ashleigh, I am sure she will want to dance with Bernardo at the wedding. That should work out fine as Bernardo is knowledgeable enough to help her from her wheelchair. I danced with Ashleigh at Celeste's wedding but I was thinking she probably would have rather been dancing with someone else, like a boy her age. I was going to find someone else but we were worried what might happen if she got too tired and needed to sit back down quickly and the boy wasn't familiar with what to do.





Below is an older picture of Ashleigh and Bernardo during therapy.




posted by Ernie Szabo @ 10:35 AM   0 comments

Sunday, January 29, 2006

Shunt CT


After the hand appointment we went and had a head CT series done to try and check on Ashleigh's shunt. She has seemed more sleepy and not as quick with her movements the past few weeks. In the past these very subtle changes have been a precursor to a shunt failure which requires a shunt replacement and inevitably a major setback in any gains she has made.

(A tip for families when getting CT's or x-rays. Ask the technicians for a copy while they are printing the one for the doctors. We always have success getting a copy and this will allow you to build a set that you can have to take with you to the ER if necessary.)

This is Ashleigh's fourth shunt in six years. Some people have shunts that work trouble free for years and years. She has had no such luck. Ashleigh's problems have mainly been with the shunt tube clogging where the shunt drains in the abdomen. The first failure was the worst. We could not convince our neurologist that there was a problem. We did talk him into checking with the neurosurgeon. The neurosurgeon said no, shunts do not partially fail or slowly fail, they are either on or off. And, if hers was off there would be rapid, significant symptoms leading to coma. Meanwhile we saw Ashleigh getting more lethargic, less responsive, and losing some of her movments.

This was the last straw for this doctor and his pompous, negative attitude. We called a doctor who consulted on Ashleigh when she was in rehab in Cincinnati. Dr. Van Loveren stunned my wife and I when he suggested we test the shunt. There is a test? Why hadn't our other doctors suggested such a test? A radioactive dye was injected into the shunt and a series of x-rays taken to see how long it took the dye to pass through the shunt and its tubing and into the abdomen. In her case, the dye never came out of the tube. A surgery was scheduled and her first shunt revision took place.

Dr. Harry van Loveren was the total opposite of the neurosurgeon we had been dealing with. He would walk into the room and pull up a chair and ask a ton of questions and wouldn't leave until all of our questions were answered. He talked to Ashleigh directly and often would hold her hand while we talked. This from a well-known doctor who often had other doctors from around the world shadowing him and traveled extensively yet when he was in the room with you, you felt you had his total attention and as much time as needed. He is as good of a person as he is skillful as a doctor.

We were very disappointed when he moved to Florida but we wish him continued success. Ashleigh still hopes to hold him to his offer to take her tandem skydiving with him one day. She would go tomorrow if she could.

posted by Ernie Szabo @ 7:53 PM   6 comments

Saturday, January 28, 2006

Tendon Lengthening Check-Up


Ashleigh had a check-up on Wednesday with the surgeon who did the tendon lengthening on her left arm . Dr. Peter Stern, an excellent orthopedic surgeon with the Hand Surgery Specialists in Cincinnati checked Ashleigh and thought she was doing very well.

He sent us across the hall to the hand therpay area where her hand therapist Bob Schneider made a set of individual finger braces to try to help correct some hyperextension Ashleigh has on two of her fingers. Bob was kind enough to work her in even though we did not have an appointment.

I have attached a couple of pictures to show the dramatic change the surgery has had.




In the waiting room, we asked Ashleigh if she wanted us to tell Dr. Stern about her talking and she signed yes and then used some signs to tell us she wanted to speak to him. So, the next time she spoke we tried to tape her message to Dr. Stern. The files below are not her best voicing but if you listen closely you can hear her say "Hi to Dr. Stern".

AshTalk7 AshTalk6

posted by Ernie Szabo @ 4:24 PM   0 comments

Wednesday, January 25, 2006

Ashleigh's Voice

Ashleigh has not been able to speak since her accident over six years ago. She does not even make sounds or noises. A video endoscope showed that although the vocal cords did not close all of the way they were not paralyzed.

An odd thing has been happening that so far no one has been able to help us with. Sometimes, typically after Ashleigh falls asleep for a while, she will awake with a start. Her eyes are wide open and she is very alert. If you ask her questions at that time she can speak! The answers to questions are always appropriate and she also offers spontaneous speech.

We have asked every doctor and therapist we come in contact with and no one has ever heard of this. We are trying to figure out what exactly is happening during these periods so we can try to encourage it more. Is it better breathing, relaxed tone, better initiation? If anyone has any ideas please email us at help@tbirecovery.org

These speech periods only last a very short time. It seems it just gets harder and harder for her until she can't speak anymore. A few times she was able to speak long enough that we called people and she spoke with them. Needless to say they were thrilled. We have tried to record it numerous times but at first we are so fascinated and try to keep her talking that we don't grab the equipment in time. We tried to record it with a tape recorder and it ate the tape. We tried with a video recorder and we were always too late.

We finally have captured a few instances with a microphone attached to our computer. These are not really very good instances as she wasn't as clear as she can be but at least we have it recorded. Also, the first words are always the best and it takes us a while to pull it together so we usually miss recording those. Just a note, at times in the recording we ask a question and you may not hear a response. Typically she is mouthing a response but does not seem to have the breath support to vocalize it. Also some of the louder responses are a little garbled because the dummy with microphone (me) has the microphone too close to her mouth.

Below are links to the audio clips. The first is from a few days ago and the second and third are both from yesterday. If anyone has any insight please email or call us, thanks.

http://www.tbirecovery.org/ashblog/AshTalk1.wav

http://www.tbirecovery.org/ashblog/ashtalk4.wav

http://www.tbirecovery.org/ashblog/AshTalk5.wav

posted by Ernie Szabo @ 9:09 AM   21 comments