Ashleigh's Blog

The Brain Injury Recovery Network

Ashleigh did a few months of aquatic therapy recently.  She really enjoys the water and would probably go every day if we could. Below are a couple of videos we shot:

We have been going to the Drake Center in Cincinnati and they really have a great set-up with their pool.  At one end of the pool the floor can be raised level with the surrounding floor so that patients can be wheeled out in a shower wheelchair and then the floor lowered to the desired depth.

The water is in the 96 degree range and the air temperature in the entire pool area and changing rooms is very warm as well.  Ashleigh was so relaxed after her swim as it really helped with her high tone.  We went to a local Y for a while and while the pool area was warm the dressings rooms were freezing.  It was so bad that our PT said it was not worth the increase in tone she was getting and we should stop.  At the Drake she stays nice and loose for hours.

We received an email from a visitor to our website, Sonja,  about a treatment her daughter, Lindsay,  was getting from a chiropractor.  She said her daughter has made some significant improvements from her Maximized Living practitioner.  We spoke with her doctor and ended up finding someone near us, Dr. Ryan Berlin at Baker Chiropractic in West Chester, OH.

Dr. Berlin is a great person, very kind and caring.  Believe me it was not easy to stand by as he did the manipulations the first few times.  We have not seen as big of improvements yet that Lindsay has but we have seen much better breathing and better relaxation and less tone after the treatments.  We are going three days a week.  Below are a couple videos from a session:

You can look at http://maximizedliving.com/ to learn more and to find someone in your area if you are interested.

Ashleigh continues to do some voicing.  In fact, it is a little better overall as her breath support has improved a little.  She also continues to have periods where she will typically wake up and be able to voice very strong for a few minutes.  Right before Christmas she was able to speak with one of her friends that lasted for five minutes or so and then she called her aunt and uncle and kept going for another five minutes. continue reading…

Ted from Hanger Prosthetics and Orthotics in Fairfield, OH did another great job on a brace for Ashleigh that is a big help in her recovery from TBI.  The new brace includes control of the knee on her weakened left side and has made walking with her roll-ater easier.  Ted watched Ashleigh walk in his clinic and then casted her for the brace. Ted suggested Ashleigh get something besides just boring white and he handed us a book that had colors and patterns of braces you can get.  We looked at butterflies and the U.S. flag when Ted said he knew what Ashleigh wanted.  He paged back in the book to one called tattoo.  It was very cool because Ash with all of her artistic talent really appreciated the style.  Check out the pictures below. continue reading…

We went to see Willie again. He is very nice and a great singer.  I don’t know how he keeps up such a difficult schedule and yet sings with such energy and joy.  It was great for us because our good friend was up from Florida just in time to go with us.  Thanks to all the staff for setting this up.

 

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My wife has been worried for some time that Ashleigh may have some thyroid issues as a result of her TBI.  She had a battery of blood tests but the results came back within the normal range.  It was not until months later when she read more about the thyroid tests that we found out that you may need to test for a few other factors to get a more detailed answer.  The doctor added the Free T3 and Free T4 tests.  Ashleigh did show a problem with the Free T3 and Free T4 tests and has started on a low dose of Armour Thyroid medication.  Remember that you know yourself or the TBI survivor in your family best, so if you have a concern be persistent.

I pasted some details below from the About.com page on thyroids.  There is a lot more info out there on the Web and from your doctor if you suspect any thyroid issues. continue reading…

I don’t want to jinx anything but Ashleigh has been on a roll lately in her therapies.  She has been walking across our living room floor with the help of a roll-ater.  When she started a few years ago she could do maybe three trips.  In the past month or two she has been breaking records like crazy.  She has now done 14 trips as her current record.  She could probably do more but the 14 takes us over time in her therapy session. continue reading…

If you are like us you have a collection of medicines and supplies that you take with you wherever you go.  Ours includes a suction machine, oxygen tank, anti-seizure emergency meds, pulse ox reader, inhaler, nebulizer, oral swabs, and various eye drops . On top of that we have extra clothes, gloves, hats, drinks and whatever else we can fit into the bag.

Please take a few minutes and make sure you check all of the medicines for their expiration dates.  We needed to do a breathing treatment recently and found the medicine in the nebulizer bag was expired.  We called the manufacturer who said it was still okay to use but it added more stress to an already stressful situation as Ashleigh was feeling like she couldn’t breathe.

(BTW – We did end up in the ER but they could not find anything and after a couple of hours she felt better and we got to go home)

Our PT, Julian, set up a trial for us with a fellow PT who teaches at a local university in the Physical Therapy department.  This person with his partner developed a harness and pulley system to use in therapy.  It would help us when Ashleigh walks not have to worry about her falling.  It could also allow us to reduce the number of people we need when Ashleigh walks.

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My wife started all of us on Krill Oil a few months ago.  It is easier for Ashleigh to take and seems to have less side effects than the fish oil we had tried in the past.  Ashleigh recently got her blood work done and her cholesterol was significantly down. The Krill Oil was the only change so needless to say we have become fans.  We will be interested in seeing if the positive results continue over the next few months until she gets her labs re-tested.

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We bought a  Transfer Pivot Disk that is great for a person who can do a stand and pivot transfer.  The helper places the disk under the person’s feet and does the stand as usual.  Then, with one of the helper’s feet partially on the disk to act as the brake you can spin the person to align with the wheelchair or bed for the transfer.  We use an extra strip of non-skid to make it safer.

We have had a number of people ask us about the disk so I thought I would post about it.  One hospital we go to for Ashleigh’s scans and CT’s got the info so they could order some for their whole department.  We are going to add it to our webstore or you can email help@tbirecovery.org   There are a few manufacturers out there but below is the info the model we purchased.

SafetySure Transfer Pivot Disc

SafetySure Transfer Pivot Disk

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We were Christmas shopping and we saw a couple of Marines in the mall.  Ashleigh and her Mom asked if she could get her picture made with them.  Very nice guys but they look so young.  It was funny because after we asked for a picture other people were asking them for a picture as well.  I hope it made them feel good and we pray for their safety.

Ashleigh’s cousin’s little boy, Evan, is at our house quite a bit and we all love it.  His birthday was coming up and he decided he wanted a Spiderman suit.  So Ashleigh and I searched online and we ordered the suit for his birthday.  I guess the first few days he wore it non-stop.  His grandmother even got this thing that shoots webs from his wrists to go with the suit.

He has now started to carry the suit with him and he decided to pay Ashleigh a visit in full regalia.  Too cute!

Ashleigh and her Mom always make a point of going up and thanking any uniformed service members they see.  I always give Ash a hard time that she is just trying to meet cute guys.

The young lady in the picture below is the daughter of a lady who works for an agency that provides some of Ashleigh’s care.  My wife had told her Mom that Ashleigh is very supportive of the military.  She and my wife then got the two girls together when she was in town on leave.

 

I have a Google alert set up for news on brain injuries.  One thing I have noticed over the years is that there have been a number of stories about miraculous recoveries from brain injuries.  Lately there have been a number of news stories about Congresswoman Gifford’s “miracle” recovery. continue reading…

Ashleigh saw a different PT for a few visits and that PT suggested bracing for her trunk.  The softer versions they tried did not provide much support so they suggested a hard shell type brace.

We then spoke to our orthotist, Ted, who did a great job on her previous AFO’s and he suggested we get our PT and OT to come to the orthotist’s office so he could see Ashleigh’s body in motion as she walked. continue reading…

We went to a town hall rally where we got to meet Gubernatorial candidate John Kasich and his Lt Gov. candidate Mary Taylor.  We even got to shake their hands and get a picture with them.  Ashleigh likes to keep up with things on the political front.

Ashleigh was very excited when she got to meet Glenn Beck when he came to Columbus with Bill O’Reilly.  She watches Glenn daily and really enjoys him.   It was a crazy day and we had to rush to Columbus and barely made it in time to see him.  She was really tired by the time we made it back home late that night but she said it was worth it.

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We were recently invited to a surprise birthday party to be held at an upscale, popular restaurant.  Ashleigh was excited to attend and frankly these family get-togethers are one of the few sources of entertainment for her.  However, it was not to be.

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Ashleigh recently celebrated her birthday.  We did not have a big party, just family but she seemed to enjoy it.  Below are some pictures.

 

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High muscle tone is a big problem for many people after brain injury.  It can be painful, limits movement, and if left unchecked can lead to long term issues such as joint problems and skin breakdown. 

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Here is Ashleigh in bed with her cousin’s three kids.  The kids visit often and Ashleigh loves it as you can tell by the smile on her face.  On this day the oldest, Paige, had a day off of school and got to join Evan and Natalie piled in bed with Ashleigh.
Paige used to spend hours in bed watching movies with Ashleigh when she was little and now she says even though she is a grown-up first grader she still loves it. 

 
One of the reasons I have been slow to post lately is Ashleigh has recently had surgery to remove her gallbladder. Although it is normally a pretty routine surgery, with Ashleigh and the complications as a result of her brain injury things became more complicated.
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Ashleigh’s niece and nephew were working at their school’s festival so we picked up Ashleigh’s cousin Paige and drove up to check it out.

 
We had the cutest little trick or treaters stop by. Ashleigh’s cousin Celeste and her husband Chris brought their kids – Paige (the Vampire Princess) Evan (the Dinosaur) and Natalie (the chicken or maybe duckling?).  Ashleigh is passing out the goodies.

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Ashleigh went to her ten-year high school class reunion recently and she said she had a real good time. She saw a number of friends and even saw one of the boys she used to have a crush on in high school.

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We took Ashleigh to a Pulmonologist partly because of bronchial spasm attack she had and partly to see if they could suggest something that could increase her breath support when she tries to speak. He examined her and suggested she go in for a sleep study.

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We found a great new harness for our gait trainer totally by accident. We went to meet a therapist for an evaluation of the Bioness products and saw this very nice harness system hanging in the therapy area. Being nosy I looked at the nametag and checked out their web site when we got home.

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Ashleigh celebrated her 29th birthday this year. Here she is blowing out her candles and taking a lick of the icing. Her brother got her the new Wii Resort game which does seem pick up her more limited movements better when playing.
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Two partners at the law firm who handle Ashleigh’s affairs had a fiftieth birthday this year. They decided to celebrate together and have an Oscar related party where attendees could dress up as Hollywood stars from their favorite movies or black tie.
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Ashleigh’s neices and nephew come to the house almost every day and Ashleigh really enjoys it. We were taking advantage of the really mild summer weather and took the kids out to swing.
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We took our grandson bowling for his birthday this year.  We had fun and Ashleigh beat her Mom in one of the games and was right behind me.  The lanes have a ramp down to the floor and a rack that lets you roll the ball down towards the pins.  No one lost an arm ala “King Pin” so I consider that a success.

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One of the partners in the law firm that has been taking care of Ashleigh, Mike Dwyer, got married this summer and invited us to the wedding.  It had a very fun south of the border atmosphere and everyone had a great time.  The ceremony was fun and the food was fantastic.  All of the folks from the firm lauded over Ashleigh and made her feel great.  She got tired but she still wanted to stay for more of the party.  Congratulations again Mike and Olga.

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Ashleigh enjoyed getting out to her niece Paige’s T-Ball games this summer.  At least when it wasn’t too hot.  Here are a few pictures.  Paige is too cute!

 
Ashleigh got a couple of new knee braces that have helped with her therapy. The braces provide needed support and stop a problem she had with hyperextension.
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Godfather Jason with Natalie

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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







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.



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.



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 their 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.





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

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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.
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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!
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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.
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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.
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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.
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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.





 
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.
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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.

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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.
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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.
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Ashleigh recently bought the cutest puppy! The dog is a mix between a toy poodle and a Bichon Frise. Ashleigh named her Sophie.
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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. continue reading…

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.
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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.

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.
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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. continue reading…


 
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.
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People calling our support line (1-877-810-2100) have asked whether Ashleigh has spoken again. See bottom of blog for audio files.
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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.
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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.
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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. continue reading…

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.
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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.
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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.

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.

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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.

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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.

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. continue reading…

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.
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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.

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

 

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. continue reading…

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. continue reading…

 
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. continue reading…

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

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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.

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.
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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.
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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.
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