The Brain Injury Recovery Network

Friday, January 29, 2010

Full House

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.

Gall Bladder Surgery

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.

Since Ashleigh cannot normally voice it made identifying the problem more difficult. One day we were walking during her therapy session using the gait harness. For some reason that day we were having a lot of difficulty getting the new harness to fit properly (definitely operator error as it worked fine other times).

About three o'clock that morning my wife woke me and said that Ashleigh was complaining of pain in the abdomen and and signed yes that she needed to go to the hospital. This was very unusual as she typically always dismisses going to the ER. I worried that we may have broken her ribs with the harness because of her osteoporosis. Talk about feeling terrible.

At the ER they found Ashleigh had a UTI and perhaps gall stones. It then took multiple tests over the next two weeks to confirm the gall stones and for the doctors to decide whether she should have the operation now or whether it could wait. The decision was made that she should have the gallbladder removed.

The surgery plans were complicated because Ashleigh has had a number of surgeries in that area due to her shunt replacements and g-tubes. The doctor was worried the scarring might preclude him from doing the surgery laparoscopically. A bigger risk was that the shunt empties into the abdominal cavity and if the gallbladder was to leak into the abdomen it could cause the potential to infect the shunt and travel into the brain. As a precaution the surgery was scheduled so Ashleigh's neurosurgeon could be available if necessary for any shunt issues. This scheduling requirement resulted in a couple week delay and Ashleigh suffered a number of other gallbladder attacks while waiting.

Poor Ashleigh was on a diet of chicken broth and Jello for a few weeks before the surgery and a few weeks after the surgery but with this diet and some medication we were able to minimize the attacks.

The surgery itself went well and the neurosurgeon was not needed. Her Mom and I always freak out though as any time someone has anesthesia there is a major risk. The common thread among our family members who called and visited her seemed to be "Hasn't she already been through enough?" My answer is yes but that is not the way it works. You just have to keep moving forward.

Ashleigh had a few very rough days after the surgery but she finally now seems back up to par. Ever the trooper, she is building her stamina back up and are walking across the room again in therapy. Pretty soon we will be able to try walking with the gait trainer harness again.

Monday, November 30, 2009

Church Festival

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 a good time on the rides and eating some good junk food. Rachel and Morgan took a little time off of their volunteer jobs of face painting and rode with Paige on the rides. Ashleigh used to love the rides and loved to go on the biggest, scarist coasters at King's Island. I am sure if they had wheelchair accessible rides she would still want to ride them.

Sunday, November 01, 2009

Trick or Treat

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.

Ashleigh has a mask on because one of the kids had been sick and we are very cautious (read paranoid) about Ashleigh catching anything. Just having a cold is so difficult for her we really try to avoid it however we can.

Monday, October 05, 2009

10 Year Class Reunion

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.

We were going to go to a football game on Friday night where the class was going to have special seating in the end zone but there was a big storm that delayed the game so we decided to skip the game rather than risk Ashleigh getting caught in a thunderstorm.

The dinner was on Saturday and we had fun. Ashleigh looked great. A number of her classmates came over to talk with her. My wife and I always worry because some people don't know how to react with Ashleigh being non-verbal. But once a few people stopped to talk with her a number of others did as well. We stayed for the meal and even for some of the karaoke before Ashleigh got too tired and we had to leave.

Ashleigh got emotional at one point when one of her friend's mother said that her son was going to sing a song to Ashleigh. Ashleigh actually ended up being able to voice at that time and she told him she loved him.

A couple of the guys we spoke with are in the service and we pray they stay safe. One person in particular has already had multiple tours in Iraq and Afghanistan and his younger brother is still over there. I don't know how their parents stand it.

All in all Ash had a good time. The next day her Mom asked what she thought of seeing the boy she liked and we got what we call her "hubba-hubba" eyebrows.

Wednesday, September 02, 2009

Breathing / Sleep Issues

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.

Ashleigh did the sleep study and they found that she did indeed have moderate sleep apnea. We had to go back for another night in the UC sleep lab to have her fitted with the proper masks and equipment.

The results have been mixed. She does seem to sleep better and we see that her heart rate is lower while sleeping with the mask on. There have been some issues with the mask moving in the middle of the night but other than that she tolerates it pretty well.

The bad news is that she has developed a respiratory infection that she can not seem to shake. The doctor thinks maybe she aspirated and he is trying to stop it before it develops into pnuemonia. Ashleigh had never aspirated in ten years and now we are wondering if the CPAP pushed the fluid into her lungs. We were told to stop the CPAP until the infection is stopped. We just had an X-ray done to look for pnuemonia. Hopefully, the infection will clear soon and then we will re-evalaute the CPAP.

New Harness for Gait Training

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.

It turned out to be from M.A.S.S. Rehab very close to us in Clayton, Ohio. One of the principals even came to the house to help fit Ashleigh and then came back to help train our therapists. (And beleive me we are slow learners so it took a while.)

The harness has worked very well and supports Ashleigh in walking without causing the skin problems our other harness did. As you will find in your loved one's rehab there are going be bumps in the road, and we have run into one as Ashleigh is fighting some medical issues right now and has been restricted by the doctors from using the harness but I think when we get back to it it is going to be a real winner. Below is thier info.

M.A.S.S. Unloading Harness

The Unloading Harness provides maximum support for patients needing consistent body-weight unloading. It also provides increased trunk stability. The two panel design and detachable pelvic support piece allows for a wide range of adjustability and easy application in sitting and supine positions. Our unique pelvic support piece also prevents excessive pressure in the groin area. One size fits most (waist size 24-54”) Weight capacity 350 lbs.

http://www.rehabharness.com

The pictures are of the harness and of Steve and his daughter who came out to help us with the fitting.

Ashleigh's Birthday

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.

The picture above of Ash licking the icing reminds me to add that my sister-in-law introduced us to this bakery near us, Ele' Cake Co., that has great cakes with the old fashioned buttercream icing. I love cake so this is BIG news. Now, if the folks at Ele see this post and want to provide us a cake every month for the free advertising, we accept.

On a personal note, I guess I have to say that these kind of events always bring out mixed emotions. While we are happy to celebrate her birthday it is a painful reminder of her circumstances. But, enough of that, we are just happy for every day she is still with us.

Oscar Birthday Bash

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.

We were happy to be invited and Ashleigh was very excited to go. My wife thinks she looked a lot like Elizabeth Taylor. The first picture is with Ashleigh and Doug Mann, one of the partners, and one of the nicest people you can ever meet. We have become friends with Doug and his whole family and they do anything they can for Ashleigh.

Going Out To Swing

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.

Evan said he wanted Ashleigh to come outside and see him swing so we all went out for a while. Little Natalie had to get the dog ready to go out with us and had to have some sunglasses on as well.

Monday, August 31, 2009

Bowling Trip

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.

A Wedding Fiesta

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.

Batter Up

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!

Friday, July 31, 2009

Knee Braces

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.

We use the braces when Ashleigh is walking with her rollater. I think the braces also let her trust her weaker left leg more and she steps better with the right having more confidence that the left is not going to buckle. These braces were not that expensive so it is not too bad even if they are not covered by insurance. Ask your therapist what will work best for you.

Monday, July 20, 2009

Pool Party

We had a good time at a pool party for Ashleigh's niece, Natalie's birthday. The party was at the father(Chris's) parents house and they have a really nice place and a great pool. Chris and his brother just built the tiki bar which is very nice.

The kids had a great time splashing and playing and Ashleigh enjoyed herself as well. The food was great and Natalie had a ton of gifts to open. It got pretty warm but Ashleigh was able to stay comfortable. This is what summer is all about.

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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

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

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.