It was two years ago today that we last saw Ashley walk, talk and eat as she did everyday of her life up to that point. She flew out to Virginia early in the morning and the affects of ADEM began their horrific attack later that evening as Ashley started to feel ‘different’.
Now that we have reached the two year point is this the new normal?
We confidently say no. In addition to the faith we have that Ashley will speak again, and that she will continue in her other areas of recovery, we can reflect on the following to affirm that hope…
Two years ago Ashley was in a coma.
We never knew if Ashley would make another audible sound. After two weeks she was laughing appropriately.
We did not know if Ashley understood us and in turn we had no way of knowing her wants. That changed around Christmas 2007 when Ashley began consistently using her right arm to indicate yes. She now nods yes and no as well as using her modified PC to communicate.
Until January 2008 we did not know if Ashley could tolerate sitting in a car to travel. Since then she has flown a couple of times and taken a cruise in the Caribbean.
That same month Ashley came home. We did not know if she would remain medically stable enough to stay at home. Since then she has been taken off the majority of her medications and has not had to be readmitted to the hospital for any reason.
Before August 2008 we didn’t know if Ashley would initiate a step on her own. With support she can walk up the stairs to her bedroom where she is now sleeping on weekends.
It wasn’t until this year (January) that Ashley regained enough control to take all her food orally. She still needs her tube for medications and hydration, but now she gets to eat what the family is eating (pureed).
Ashley has made great strides on the Eat and Walk portions of the Eat, Walk and Talk mantra. Even so she still has a ways to go with both of those. Although Ashley has not spoken that first word she is more vocal every week and we are hearing new sounds. That is exciting and it even excites Ashley.
We are not yet to the new normal and for that we are grateful. We are on God’s and Ashley’s timeline for each of those major areas. Ashley’s determination and faith combined with all of your prayer support will get her back to independence.
So what do we look forward to most when Ashley starts talking again? It’s quite simple; just hearing her lovely voice again. What will have the most impact on us? You guessed it, hearing, “I love you!”
As we start the third year of Ashley’s recovery she would like to say a couple things to each of us:
First that we should treasure and be thankful for the gifts God has given us. She wants to express that each time you tell someone you care about that you love them please say it with a conviction that will imbed your voice and words indelibly in that loved one’s mind. Love is after all the greatest of God’s gifts. It is also the one gift you can continuously share with others and never run out of. Ashley suggests you take advantage of that fact and show your love to all whom are special to you frequently.
Secondly, never lose faith. Ashley is as strong, if not stronger in her faith. Like the rest of us she doesn’t know why this has happened to her, but she does know there is a reason. All the effort Ashley is making, and each time she shares her smile with someone she knows that she is inspiring others as she continues on her own journey.
Over the last two years we have felt how special your love is through your support and prayers. We are blessed to have each of you from our closest family members and friends to people we will never know personally that have given of themselves in different ways for Ashley and our benefit. God bless each and every one of you. One day Ashley herself will be doing these updates and she will be able to thank you first hand.
Monday, June 29, 2009
Tuesday, June 16, 2009
June 16th
Another milestone for Ashley.
As followers of the blog know we have assisted Ashley on several occasions in her efforts to walk up the steps to see her bedroom. Well, two weekends ago she did so well we decided that she could sleep in her own bed for the first time in nearly two years!
She slept upstairs both Friday and Saturday night. Our plan now is for Ashley to sleep upstairs each weekend. This past weekend she showed us her motivation. Normally Ashley takes a step up and then brings the second foot up to the step she just reached with the other foot. Well this time, on about half the steps, she took a new step with each foot.
Quite frankly Ashley consistently takes better steps when going up stairs then when on a level surface. Getting to her own bed appears to be quite the motivation.
Ashley is also improving on going down the steps. She is getting use to bending the knee of the leg that is staying in place on the upper step so her other foot can reach down to the next step.
We are certainly seeing the time coming when Ashley will move upstairs permanently.
In the continuous efforts to improve Ashley’s balance and walking she is now wearing an advanced pair of Ankle-Foot Orthotic boots (AFOs) at night. These are hinged and spring loaded to apply continuous pressure on her Achilles tendons. In addition she is wearing knee immobilizers to keep her legs straight while in bed (those blue foam pieces held together with velco that you see on someone who just had knee surgery.
You know that summer has arrived when it is time to dash next door and take advantage of the Markley’s pool. What a change from last year. Back then we would place Ashley’s wheel chair near the pool while placing a pool chair at the corner of the pool. We would transfer her from the wheelchair to the pool chair. The next step was to have two people lift the pool chair and set it about two feet from the pool’s edge at the steps. We would place a towel on the ground and lift Ashley from the chair and set her on the towel with her feet now in the water. We would then lift her and lower her step by step until she was sitting at a level that was comfortable.
This year? Ashley lifts herself out of her chair with minimal assistance. With balance support she walks to the pool and steps in and down to the step she wants. Of course we don’t just sit there; she walks, and most enjoyably, floats in the pool. Since Ashley has pool therapy once to four times a month she is no stranger to the pool, but next door it is relaxation time not work time.
In therapy this week Ashley stood behind her wheel chair with her left hand holding it for support. Her therapist was right there, but was not supporting her in any way. So how long did Ashley stand without starting to waver? More than three minutes.
On the nutrition front Ashley is not missing a beat. Now with berries coming into season she is requesting that fresh fruit often and enjoying every bite. Progress on drinking is slow, but is progressing. Each week Ashley is improving on fighting gravity and swallowing more sips.
It looks like Thursday night is going to be friends’ night this summer. Although many of Ashley’s friends are scatter about doing internships or attending summer semester out of the country she still has a dedicated group that want to hang out with her. Obviously Ashley chose her friends well.
We have a road trip coming up soon for Austin’s orientation at Indiana University. Ashley will be going with us and checking out the campus. We have also received confirmation that we will be able to attend the Transverse Myelitis week at Victory Junction in North Carolina in mid August.
As followers of the blog know we have assisted Ashley on several occasions in her efforts to walk up the steps to see her bedroom. Well, two weekends ago she did so well we decided that she could sleep in her own bed for the first time in nearly two years!
She slept upstairs both Friday and Saturday night. Our plan now is for Ashley to sleep upstairs each weekend. This past weekend she showed us her motivation. Normally Ashley takes a step up and then brings the second foot up to the step she just reached with the other foot. Well this time, on about half the steps, she took a new step with each foot.
Quite frankly Ashley consistently takes better steps when going up stairs then when on a level surface. Getting to her own bed appears to be quite the motivation.
Ashley is also improving on going down the steps. She is getting use to bending the knee of the leg that is staying in place on the upper step so her other foot can reach down to the next step.
We are certainly seeing the time coming when Ashley will move upstairs permanently.
In the continuous efforts to improve Ashley’s balance and walking she is now wearing an advanced pair of Ankle-Foot Orthotic boots (AFOs) at night. These are hinged and spring loaded to apply continuous pressure on her Achilles tendons. In addition she is wearing knee immobilizers to keep her legs straight while in bed (those blue foam pieces held together with velco that you see on someone who just had knee surgery.
You know that summer has arrived when it is time to dash next door and take advantage of the Markley’s pool. What a change from last year. Back then we would place Ashley’s wheel chair near the pool while placing a pool chair at the corner of the pool. We would transfer her from the wheelchair to the pool chair. The next step was to have two people lift the pool chair and set it about two feet from the pool’s edge at the steps. We would place a towel on the ground and lift Ashley from the chair and set her on the towel with her feet now in the water. We would then lift her and lower her step by step until she was sitting at a level that was comfortable.
This year? Ashley lifts herself out of her chair with minimal assistance. With balance support she walks to the pool and steps in and down to the step she wants. Of course we don’t just sit there; she walks, and most enjoyably, floats in the pool. Since Ashley has pool therapy once to four times a month she is no stranger to the pool, but next door it is relaxation time not work time.
In therapy this week Ashley stood behind her wheel chair with her left hand holding it for support. Her therapist was right there, but was not supporting her in any way. So how long did Ashley stand without starting to waver? More than three minutes.
On the nutrition front Ashley is not missing a beat. Now with berries coming into season she is requesting that fresh fruit often and enjoying every bite. Progress on drinking is slow, but is progressing. Each week Ashley is improving on fighting gravity and swallowing more sips.
It looks like Thursday night is going to be friends’ night this summer. Although many of Ashley’s friends are scatter about doing internships or attending summer semester out of the country she still has a dedicated group that want to hang out with her. Obviously Ashley chose her friends well.
We have a road trip coming up soon for Austin’s orientation at Indiana University. Ashley will be going with us and checking out the campus. We have also received confirmation that we will be able to attend the Transverse Myelitis week at Victory Junction in North Carolina in mid August.
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