Ashley had a wonderful birthday week.
The outpouring of love was amazing and deeply appreciated. Her therapists at Lutheran Hospital threw a surprise party for her; she received dozens of cards and gifts; there were numerous phone calls and visits from family and friends; and of course several wonderful postings on this blog. The highlight was when Ashley received and took a call on her birthday from her friend Adrienne who is currently spending a semester in Uganda Africa. Yes she called from Uganda!
Ashley took advantage of the extended summer weather we are having by taking several strolls through the neighborhood during the week and weekend.
On the Walk, Talk and Eat front Ashley is making steady progress.
As a visiting friend, Erica, was saying goodbye Ashley pushed her vocalization to new heights. We are praying for audible words, but to see the effort, and more importantly, the smile that was on Ashley’s face as she ‘sang’ her goodbye it was apparent that this was a sign of good things to come.
Over the weekend we did an interview for Fort Wayne Living Magazine. The article will be an update on Ashley and the efforts of members of our church parish to raise funds for a wheelchair accessible van. The story will run in their November edition.
To add to the exciting news we just received word that Ashley (and the family) has been accepted to the Victory Junction Gang weekend camp for young adults suffering from conditions like Ashley’s in North Carolina. In addition to spending time with others that Ashley can relate with we will be able to confer with the same medical specialists that were at the International Conference on Rare Neuro-immunilogical Disorders. Austin and I also had the pleasure of meeting the camps’ medical director at that conference in July. In a future posting we will tell you more about this wonderful facility that the Petty family of NASCAR fame has poured their love and treasure into. It has been a blessing for thousands of children, young adults and families that are facing various medical challenges. You can visit them at www.victoryjunction.org.
As we face each new day we are thankfully aware of all the love and support we have and will continue to receive. Saying thank you feels woefully inadequate, but please know that you are also in our prayers. We know first hand that prayer is the most valuable gift one person can provide to another.
Monday, September 29, 2008
Tuesday, September 23, 2008
September 23rd
On Saturday Ashley danced at her cousin’s wedding. More precisely Dad danced and Ashley was holding on for dear life. In any case one of the motivators we used when patterning Ashley for walking was that we wanted to see her dance at her Jessica and Joe’s wedding. This always brought a smile to her face.
Well on Saturday night she got out of her chair on the dance floor and to the cheers of onlookers Ashley held her self up and we did some limited moves dancing.
On the Walk, Talk and Eat front, Ashley continues to take more and more unassisted steps each time we pattern her. While she still needs support from her walker or someone else it is so encouraging. Her consistency of eating, as well as the volume she is taking orally has definitely improved over the last few weeks. While we are still waiting on that first clear word Ashley is increasing the frequency of making sounds as well as an increasing the variety of pitch.
Ashley will celebrate her 21st birthday this Thursday. We could not be more proud. Just a little over a year ago we would have anticipated her starting her junior year at Saint Mary’s and starting to narrow down her school selections for her masters as a Physician’s Assistant. Now we know that God has other plans for Ashley. She is taking a hiatus from college, but as we watch her slowly progress and witness, what is to us, Ashley’s miraculous motivation and positive attitude it is becoming clearer that she will have a special vocation.
May we never fail to mention our awareness that there is a special partnership between Ashley’s hard work and the prayers and support we have received. It is blessed combination that knows no earthly limitation.
Well on Saturday night she got out of her chair on the dance floor and to the cheers of onlookers Ashley held her self up and we did some limited moves dancing.
On the Walk, Talk and Eat front, Ashley continues to take more and more unassisted steps each time we pattern her. While she still needs support from her walker or someone else it is so encouraging. Her consistency of eating, as well as the volume she is taking orally has definitely improved over the last few weeks. While we are still waiting on that first clear word Ashley is increasing the frequency of making sounds as well as an increasing the variety of pitch.
Ashley will celebrate her 21st birthday this Thursday. We could not be more proud. Just a little over a year ago we would have anticipated her starting her junior year at Saint Mary’s and starting to narrow down her school selections for her masters as a Physician’s Assistant. Now we know that God has other plans for Ashley. She is taking a hiatus from college, but as we watch her slowly progress and witness, what is to us, Ashley’s miraculous motivation and positive attitude it is becoming clearer that she will have a special vocation.
May we never fail to mention our awareness that there is a special partnership between Ashley’s hard work and the prayers and support we have received. It is blessed combination that knows no earthly limitation.
Tuesday, September 16, 2008
September 16th
Hi all!
It has been quite busy around the Harrington household, but I felt a short update was better than no update at all.
Courtesy of a neighbor that is a therapist Ashley now has a walker (pictured). This walker has raised arm supports so Ashley can have support for her forearms and hold handles in front of her and walk. This is a huge advancement for Ashley. Although we still right there to assist her if needed Ashley is not st raped in like the gait trainer. The only support she has from the walker is with her forearms.
Ashley is making strides with walking that exceed any other area of improvement to date. She is even taking reciprocal steps (one step followed immediately by another). It is biggest high to watch her do that! She still needs patterning, but the progress she is making is truly breathtaking.
We have always had faith that Ashley would walk again. Now we have the proof that she will indeed do it.
Please keep those 'Walk, Talk and Eat' prayers coming because they are working. God Bless!
It has been quite busy around the Harrington household, but I felt a short update was better than no update at all.
Courtesy of a neighbor that is a therapist Ashley now has a walker (pictured). This walker has raised arm supports so Ashley can have support for her forearms and hold handles in front of her and walk. This is a huge advancement for Ashley. Although we still right there to assist her if needed Ashley is not st raped in like the gait trainer. The only support she has from the walker is with her forearms.
Ashley is making strides with walking that exceed any other area of improvement to date. She is even taking reciprocal steps (one step followed immediately by another). It is biggest high to watch her do that! She still needs patterning, but the progress she is making is truly breathtaking.
We have always had faith that Ashley would walk again. Now we have the proof that she will indeed do it.
Please keep those 'Walk, Talk and Eat' prayers coming because they are working. God Bless!
Monday, September 1, 2008
September 1st
An apology is due to the faithful followers of Ashley’s blog. Once again the editor failed to get out the weekly update. Quite frankly the busy holiday weekend has me feeling like Cinderella trying to beat a midnight deadline to get this to the presses.
Had I posted an update last week the lead would have been the outcome of her check up with her neurologist the Friday before. Once again medicines for Ashley have been reduced. To give you an idea of how well Ashley is progressing consider this…
When Ashley came home in January of this year she was on fourteen (14) different medicines. Today she is on four (4) different medicines. One of those is an antacid she takes due to her liquid nutrition. Of the other three one has had its dosage reduced 50%. The other two have had their dosages reduced 75%! This is good news on two fronts. The obvious is that Ashley is progressing to the point she needs less medication to address the affects of her condition. The other is that she is not encountering the side affects that came with some of these medications. The biggest issue was drowsiness.
It is hard enough when your body isn’t cooperating with what you are telling it to do. It only made it harder with have to fight off constant fatigue. Now with this latest round of medicine reduction we are confident that Ashley will make even more gains.
We just returned from spending the holiday weekend at the lake. We have been blessed with wonderful weather this summer and have taken advantage of it. Ashley has loved every minute when she has had an opportunity to get outside.
Ashley has been moving her left arm in a more coordinated fashion lately. When we got home today she reached up and removed her sunglasses from her face. Later we asked her to put down her right arm. She reached over with her left are to her right shoulder and worked her way down her arm to her wrist and pushed on her arm. We watched in amazement.
It was wonderful to hear from Jodie (who is from London, England) who had ADEM and can relate to what Ashley is going through. She is one more person that is a role model for Ashley
Thank you for your prayers. We hope as we head into September you have all had a wonderful summer.
Had I posted an update last week the lead would have been the outcome of her check up with her neurologist the Friday before. Once again medicines for Ashley have been reduced. To give you an idea of how well Ashley is progressing consider this…
When Ashley came home in January of this year she was on fourteen (14) different medicines. Today she is on four (4) different medicines. One of those is an antacid she takes due to her liquid nutrition. Of the other three one has had its dosage reduced 50%. The other two have had their dosages reduced 75%! This is good news on two fronts. The obvious is that Ashley is progressing to the point she needs less medication to address the affects of her condition. The other is that she is not encountering the side affects that came with some of these medications. The biggest issue was drowsiness.
It is hard enough when your body isn’t cooperating with what you are telling it to do. It only made it harder with have to fight off constant fatigue. Now with this latest round of medicine reduction we are confident that Ashley will make even more gains.
We just returned from spending the holiday weekend at the lake. We have been blessed with wonderful weather this summer and have taken advantage of it. Ashley has loved every minute when she has had an opportunity to get outside.
Ashley has been moving her left arm in a more coordinated fashion lately. When we got home today she reached up and removed her sunglasses from her face. Later we asked her to put down her right arm. She reached over with her left are to her right shoulder and worked her way down her arm to her wrist and pushed on her arm. We watched in amazement.
It was wonderful to hear from Jodie (who is from London, England) who had ADEM and can relate to what Ashley is going through. She is one more person that is a role model for Ashley
Thank you for your prayers. We hope as we head into September you have all had a wonderful summer.
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