Wedding ring is now on his pinky =)
Sunday, August 29, 2010
Saturday, August 28, 2010
Update from GW ALS Clinic
Our visit began with seeing our Pulmonologist. The lung capacity test revealed that John was at 40%. It had gone down from 60% 3 months ago. The doctor recommended that he try using the B Pap device at night. This will hopefully help him to not work so hard breathing at night, will allow him to sleep better and have more energy during the day. They will be fitting him for that soon. After that we were seen by our Physical and Occupational Therapists, as well as our speech therapist, Neurologist, social worker, ALS association rep, medical equipment rep and last of all our psychiatrist. John entertains most of these young fresh out of college therapists and they don't quite know what to do with him. We had a new ( our 3rd ) shrink this time so we were able to once again share with her all the ways we are being cared for, the hope we have within us in Christ and the joy we are experiencing in the midst of this illness. She was quite taken aback and said " what a happy story, that is not the norm". What joy it gave us to declare God's goodness towards us. What a change we have seen in our own hearts as we are not only not dreading going, but are actually filled with anticipation as to who we can share with while we're there. This a work of grace and the result of all the prayers on our behalf when we are there. Thank you!
The waiting room is a mixture of people of various ages who also have ALS. Lord willing, we want to try and introduce ourselves to some of them next visit. Having Amanda along worked out really well as she's the primary caregiver when I'm at work and the PT lady was able to show her how to stretch out John's arms and legs. The Medical equipment rep is looking into getting John a device that supports your arm when you can no longer lift it on your own. This could be helpful for eating and drinking.
Due to fluid build up in his hands and feet his wedding ring was very tight and unable to be removed. Our Neurologist was so concerned that she tried to slide it off using soap right in the exam room. After than didn't work they sent us down to the hospital ER to see if they could remove it. But we realized this would take too long and our ride would be there soon. So, thinking we'd take care of it next week we headed home. That night our friends Marc and Terry joined us for dinner and as we mentioned it and they saw John's finger which by now had even become more swollen, Marc got his heavy duty wire cutters and a pair of plyers and cut away. Woohoo! There was just enough room that he didn't cut John's finger. At times these ALS clinic visits may tempt us to be a little discouraged because of the "semi-'futile" nature of the care that is available for this condition. BUT, the reason we are not is that we really believe God in His sovereignty has a purpose for our participation. Again we thank you so much. We feel your prayers!
The waiting room is a mixture of people of various ages who also have ALS. Lord willing, we want to try and introduce ourselves to some of them next visit. Having Amanda along worked out really well as she's the primary caregiver when I'm at work and the PT lady was able to show her how to stretch out John's arms and legs. The Medical equipment rep is looking into getting John a device that supports your arm when you can no longer lift it on your own. This could be helpful for eating and drinking.
Due to fluid build up in his hands and feet his wedding ring was very tight and unable to be removed. Our Neurologist was so concerned that she tried to slide it off using soap right in the exam room. After than didn't work they sent us down to the hospital ER to see if they could remove it. But we realized this would take too long and our ride would be there soon. So, thinking we'd take care of it next week we headed home. That night our friends Marc and Terry joined us for dinner and as we mentioned it and they saw John's finger which by now had even become more swollen, Marc got his heavy duty wire cutters and a pair of plyers and cut away. Woohoo! There was just enough room that he didn't cut John's finger. At times these ALS clinic visits may tempt us to be a little discouraged because of the "semi-'futile" nature of the care that is available for this condition. BUT, the reason we are not is that we really believe God in His sovereignty has a purpose for our participation. Again we thank you so much. We feel your prayers!
Tuesday, August 10, 2010
John's Testimony at CLC
John was asked to give his testimony at Covenant Life Church. Here's the link if you'd like to watch the video.
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