Happy Easter!
We had a wonderful Easter. All four of us went to Easter Mass together. Ashley was fully engaged. She held her head up and looked to her left and right often. Ashley even received communion during mass.
That was the start of a full day. We hosted Easter (with a lot of help from relatives) so Ashley could be comfortable and yet visit with everyone. She had a wonderful day full of smiles and listening to stories as she got caught up on what all her visitors were doing lately.
So what’s new…
Ashley got a new pair of ankle-foot orthotic boots (better known as AFO boots). These help keep her Achilles tendons’ stretched to avoid any problems when she stands now and to insure she keeps the flexibility she will need when she is able to walk again. She wears them at night. We have to ‘break’ these in so she wore them for short periods and this week the specialist is making some adjustments to insure the fit comfortably.
A few times last week Ashley’s eating exercises did not go so well. The speech therapist told us not to worry; Ashley is actually building up her tongue and cheek muscles and moving them differently. We were concerned that this might be a set back, but it is merely another phase of recovery and they are confident that Ashley will restore the coordination she needs to be back on track with eating soon. Of course we can’t wait for the day that Ashley can receive all her nutrition orally.
Thank you for your continued prayers; your appeals have been answered and we feel the presences of the Holy Spirit guiding Ashley as she continues to exhibit unwavering focus in her efforts to recover. May you have a blessed Easter Season.
Tuesday, March 25, 2008
Monday, March 17, 2008
March 17th
From Ashley and all of us, “Happy St. Patrick’s Day!”
St. Patrick was actually born in Britain to a wealthy family. He was kidnapped in his teenage years by Irish raiders that attacked his family’s estate. It was during his captivity that Patrick turned to his faith for solace. Eventually in a dream, he felt was inspired by God, Patrick was told that he could return to Britain and he simply walked away from this captivity. Ashley, like St. Patrick, is facing a loss of independence, but she to will rely on her faith to heal her.
Ashley did a lot in the last week.
She got a preview of what the software on her new computer will look like. It will take a while to master, but it will raise communication to a new level. Ashley made sure her speech therapist understood that she only saw the computer as a temporary communication device and that she wanted the therapy’s focus to remain on reestablishing her vocal speech.
On Wednesday Ashley was the model for a couple of different standing frames that her rehabilitation facility is considering. Luck for us they are from the same manufacturer as Ashley’s standing frame and they can assemble hers at our house. On a related note - when we transfer Ashley from one location to another we ask her to support her weight in a standing position for a short period of time and then, when she is in front of the object she is going to sit on, we ask her to slowly bend her knees and sit down. We have to support her at all times, but lately it has been much more support of balance than holding her up. She will often support her own weight and then sit down in a slow fluid motion.
The weather has been nice enough that Ashley has been out for walks in the neighborhood a few times in the last week. We look forward to those walks occurring more frequently in the future. Like the rest of us, Ashley has had enough of winter and loves to get outside.
As most of you know, Ashley communicates by moving her left arm. She has a button that, when pushed by her arm, activates an audible ‘Yes’. On Sunday Ashley started to raise her right arm as well as her left arm to answer yes. Needless to say we were excited and proceeded to ask more questions and Ashley continued to raise her right arm.
We have not seen Ashley raise her right arm to a request since prior to going to Chicago in September. Ashley was beaming with pride and we provided her with a standing ovation. It takes her great effort to raise her right arm, but she insisted that her communication button be moved to her right arm Monday morning.
This is Holy Week and we have much to be thankful for. May God fill you with the Holy Spirit and bring you peace.
St. Patrick was actually born in Britain to a wealthy family. He was kidnapped in his teenage years by Irish raiders that attacked his family’s estate. It was during his captivity that Patrick turned to his faith for solace. Eventually in a dream, he felt was inspired by God, Patrick was told that he could return to Britain and he simply walked away from this captivity. Ashley, like St. Patrick, is facing a loss of independence, but she to will rely on her faith to heal her.
Ashley did a lot in the last week.
She got a preview of what the software on her new computer will look like. It will take a while to master, but it will raise communication to a new level. Ashley made sure her speech therapist understood that she only saw the computer as a temporary communication device and that she wanted the therapy’s focus to remain on reestablishing her vocal speech.
On Wednesday Ashley was the model for a couple of different standing frames that her rehabilitation facility is considering. Luck for us they are from the same manufacturer as Ashley’s standing frame and they can assemble hers at our house. On a related note - when we transfer Ashley from one location to another we ask her to support her weight in a standing position for a short period of time and then, when she is in front of the object she is going to sit on, we ask her to slowly bend her knees and sit down. We have to support her at all times, but lately it has been much more support of balance than holding her up. She will often support her own weight and then sit down in a slow fluid motion.
The weather has been nice enough that Ashley has been out for walks in the neighborhood a few times in the last week. We look forward to those walks occurring more frequently in the future. Like the rest of us, Ashley has had enough of winter and loves to get outside.
As most of you know, Ashley communicates by moving her left arm. She has a button that, when pushed by her arm, activates an audible ‘Yes’. On Sunday Ashley started to raise her right arm as well as her left arm to answer yes. Needless to say we were excited and proceeded to ask more questions and Ashley continued to raise her right arm.
We have not seen Ashley raise her right arm to a request since prior to going to Chicago in September. Ashley was beaming with pride and we provided her with a standing ovation. It takes her great effort to raise her right arm, but she insisted that her communication button be moved to her right arm Monday morning.
This is Holy Week and we have much to be thankful for. May God fill you with the Holy Spirit and bring you peace.
Tuesday, March 11, 2008
March 11th
Ashley's long awaited standing frame arrived yesterday evening...
in parts.
Since it was a special order item the supplier did not assemble it. After opening the two large boxes and laying out the parts I grabbed the owners manual. After a quick perusal of the instructions I said to Ashley, "It's kinda like a bicycle. All I have to do is follow these 36 illustrated, some what straightforward, steps!"
Needless to say it is not yet assembled.
On Wednesday Ashley's therapy facility is getting a standing frame (they use a 'tilt' table now to raise clients to a standing position). Since Ashley used a standing frame in Chicago they have asked her to 'model' their new one. Ashley was more than happy to oblige.
Aside from the standing frame Ashley has had a good week. There were a couple of days were she was drowsy during the day so we are going to consult with her doctors to determine if we can yet again reduce some of Ashley's medications. She is having fewer painful spasms and no problems with nasuea. The most common side affects of the meds are drowsiness and nasuea. Ashley seems to have the upper hand on one. It will be nice to reach the point where she is lucid all day everyday.
While we are waiting on Ashley's computer (probably has a similar leadtime as her standing frame) we have been using paper examples of the screens she will see that her speech therapist provided. Ashley is getting more comfortable with them and it is apparent that once she has the computer she will be able to communicate to us what she wants and needs much quicker than our current hit-n-miss approach of questioning.
Related to the computer Ashley makes it clear that she doesn't want the speech therapist to let up on the exercises they are doing to return Ashley's speech. Often times Ashley will hum. She smiles when we ask if she is warming up her vocal cords. She continues to make progress with her eatinig exercises and that will lead to developing the muscle strength needed to speak again.
This is the last week of lent prior to holy week. We can feel all the prayers that you are sending our way. Our pray in return is that God conveys to you His blessing and that you feel His loving guidance.
in parts.
Since it was a special order item the supplier did not assemble it. After opening the two large boxes and laying out the parts I grabbed the owners manual. After a quick perusal of the instructions I said to Ashley, "It's kinda like a bicycle. All I have to do is follow these 36 illustrated, some what straightforward, steps!"
Needless to say it is not yet assembled.
On Wednesday Ashley's therapy facility is getting a standing frame (they use a 'tilt' table now to raise clients to a standing position). Since Ashley used a standing frame in Chicago they have asked her to 'model' their new one. Ashley was more than happy to oblige.
Aside from the standing frame Ashley has had a good week. There were a couple of days were she was drowsy during the day so we are going to consult with her doctors to determine if we can yet again reduce some of Ashley's medications. She is having fewer painful spasms and no problems with nasuea. The most common side affects of the meds are drowsiness and nasuea. Ashley seems to have the upper hand on one. It will be nice to reach the point where she is lucid all day everyday.
While we are waiting on Ashley's computer (probably has a similar leadtime as her standing frame) we have been using paper examples of the screens she will see that her speech therapist provided. Ashley is getting more comfortable with them and it is apparent that once she has the computer she will be able to communicate to us what she wants and needs much quicker than our current hit-n-miss approach of questioning.
Related to the computer Ashley makes it clear that she doesn't want the speech therapist to let up on the exercises they are doing to return Ashley's speech. Often times Ashley will hum. She smiles when we ask if she is warming up her vocal cords. She continues to make progress with her eatinig exercises and that will lead to developing the muscle strength needed to speak again.
This is the last week of lent prior to holy week. We can feel all the prayers that you are sending our way. Our pray in return is that God conveys to you His blessing and that you feel His loving guidance.
Monday, March 3, 2008
March 3rd
It is always easiest to remember what just happened. That is certainly the case looking at this last week. Today Ashley seemed to really coordinate with eating and swallowing. If you think about all the mechanics involved it helps you to appreciate what Ashley has to think through and then hope all the signals get through. Gee, I thought remembering all the steps (and properly executing) for a good golf swing was difficult.
Ashley have been taken off of a three different medicines since being home and has had the dosage reduced on another. She has not had any problems with digestion and she seems more alert. We will be pursuing treatment for stiffness in Ashley’s neck and right arm, but with Ashley’s reduced episodes involving spasms we are on hold with the procedure for an internal pump to provide that medication.
Ashley had several visitors this weekend and enjoyed the company. Her mother and I even managed to slip out to dinner on Saturday night for our 25th anniversary. We went to a restaurant that Ashley chose and we both agreed it was an excellent suggestion.
We expect Ashley’s standing frame to arrive at our home this week. A standing frame is a device that Ashley sits in and then via a pneumatic pump raises her to a supported standing position. Currently when we transfer Ashley from one spot to another we usual support her in a standing position for a few minutes. Now she will be able to put weight on her legs and feet for a half hour a couple times a day. It helps her circulation and also helps her build muscle tone.
Had it not been for the rain today it would have been a great morning for Ashley to get out for a walk (nearly 50 degrees), but now a cold front is coming back. Spring will soon be here and you can count on Ashley wanting to get out in it!
Ashley have been taken off of a three different medicines since being home and has had the dosage reduced on another. She has not had any problems with digestion and she seems more alert. We will be pursuing treatment for stiffness in Ashley’s neck and right arm, but with Ashley’s reduced episodes involving spasms we are on hold with the procedure for an internal pump to provide that medication.
Ashley had several visitors this weekend and enjoyed the company. Her mother and I even managed to slip out to dinner on Saturday night for our 25th anniversary. We went to a restaurant that Ashley chose and we both agreed it was an excellent suggestion.
We expect Ashley’s standing frame to arrive at our home this week. A standing frame is a device that Ashley sits in and then via a pneumatic pump raises her to a supported standing position. Currently when we transfer Ashley from one spot to another we usual support her in a standing position for a few minutes. Now she will be able to put weight on her legs and feet for a half hour a couple times a day. It helps her circulation and also helps her build muscle tone.
Had it not been for the rain today it would have been a great morning for Ashley to get out for a walk (nearly 50 degrees), but now a cold front is coming back. Spring will soon be here and you can count on Ashley wanting to get out in it!
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