This message was received and posted on January 31, 2008
Note to all the parents out there: if your child is healthy and happy enough to sleep well at night, be grateful. Don't take such a simple thing for granted. Yes, we've all worried about grades, behavior, career paths, etc., but count your blessings if your child sleeps well.
2008 has gotten off to a rocky start for Danny. During the last week of December and first several weeks of January, he experienced painful stomach cramps and sweats that required constant changes of shirts and sheets.
We made a couple of trips to a gastroenterologist who could not diagnose the problem despite tests and x-rays. Due to the pain, Danny was pressing his hands so tightly together that a huge blister formed on his thumb. When it became infected, our physician friend Sylvia was fearful that Danny might have contracted the staph infection which is resistant to antibiotics and can be lethal if not caught in time. A trip to the emergency room on a Saturday night revealed that while Danny did have a staph infection, thankfully it wasn't the dangerous strain and antibiotics quickly cleared it up.
In the past week, Danny's been doing much better, sleeping through the night, with very little sweating and only occasional bouts of discomfort, like this morning.
He's been too tensed up to do much ranging and stretching, but even in the most uncomfortable times, he seemed to relax while sitting up on the therapy table. Although he was often too exhausted to work, on those days when he had the energy, he spelled out several sweet messages, including yesterday when he touched the letters, "I LOVE YOU MOM". Last week, when Lynn asked if he had a message for me, he spelled "YOU ARE GREAT". This was nice since I'd been feeling far from great, having a hard time surrendering my anxiety and frustration for the past month.
While we hope that his pain will continue to abate in the coming days, we're cautiously excited about a new possibility. Our friend Jerry Hylander happened to catch a program on the Discovery channel about a machine that allows the user to interact with a computer through the use of a headband equipped with sensors that detect electrical signals from facial muscles, eye movements, and brainwaves. The device has been a big success with severely-disabled users. The company that makes it has a fascinating website: brainfingers.com which features articles and video demonstrations.
Jerry, who has a background in engineering, contacted the manufacturer and arranged to borrow a unit for six weeks. When it arrives next week, he'll learn to use it himself, then help Danny get set up on it. If it works for Danny, we'll purchase a machine. It will be a long, slow process and we have no idea whether Danny can benefit or not, but it has the potential to allow him to communicate more and more, as well as to write music, play video games and do all sorts of other things.
Several times during Danny's bouts of discomfort this past month, I asked him if he was happy. The answer was always "Yes". Are you sad? "No." He's also indicated that he constantly feels the presence of God. During his most painful days, I thought about sending out a plea for prayers and good thoughts from all of you, but given his professed happiness and sense of the divine, I sometimes feel I should just ask Danny to send prayers and good thoughts for the rest of us who aren't always blessed with his certainty. Here's a deal: you send him prayers and/or good thoughts for his stomach and for success at Brainfingers and I'll ask him to pray for all of us. We'll keep getting through it together.
Much love, Jeff
Attached are 3 photos:
1) Danny with a sweet smile for his cousin Katie who often provokes grins from him.
2) Aunt Teri, Lynn, Danny and Katie, during Teri's recent 10 day visit.
3) Danny with our friend Meherwan Irani (great-nephew of Meher Baba) who played some wonderful original songs for Danny.
to write to Jeff: manonash@verizon.net to write to Lynn: lynnswan7@verizon.net
Note to all the parents out there: if your child is healthy and happy enough to sleep well at night, be grateful. Don't take such a simple thing for granted. Yes, we've all worried about grades, behavior, career paths, etc., but count your blessings if your child sleeps well.
2008 has gotten off to a rocky start for Danny. During the last week of December and first several weeks of January, he experienced painful stomach cramps and sweats that required constant changes of shirts and sheets.
We made a couple of trips to a gastroenterologist who could not diagnose the problem despite tests and x-rays. Due to the pain, Danny was pressing his hands so tightly together that a huge blister formed on his thumb. When it became infected, our physician friend Sylvia was fearful that Danny might have contracted the staph infection which is resistant to antibiotics and can be lethal if not caught in time. A trip to the emergency room on a Saturday night revealed that while Danny did have a staph infection, thankfully it wasn't the dangerous strain and antibiotics quickly cleared it up.
In the past week, Danny's been doing much better, sleeping through the night, with very little sweating and only occasional bouts of discomfort, like this morning.
He's been too tensed up to do much ranging and stretching, but even in the most uncomfortable times, he seemed to relax while sitting up on the therapy table. Although he was often too exhausted to work, on those days when he had the energy, he spelled out several sweet messages, including yesterday when he touched the letters, "I LOVE YOU MOM". Last week, when Lynn asked if he had a message for me, he spelled "YOU ARE GREAT". This was nice since I'd been feeling far from great, having a hard time surrendering my anxiety and frustration for the past month.
While we hope that his pain will continue to abate in the coming days, we're cautiously excited about a new possibility. Our friend Jerry Hylander happened to catch a program on the Discovery channel about a machine that allows the user to interact with a computer through the use of a headband equipped with sensors that detect electrical signals from facial muscles, eye movements, and brainwaves. The device has been a big success with severely-disabled users. The company that makes it has a fascinating website: brainfingers.com which features articles and video demonstrations.
Jerry, who has a background in engineering, contacted the manufacturer and arranged to borrow a unit for six weeks. When it arrives next week, he'll learn to use it himself, then help Danny get set up on it. If it works for Danny, we'll purchase a machine. It will be a long, slow process and we have no idea whether Danny can benefit or not, but it has the potential to allow him to communicate more and more, as well as to write music, play video games and do all sorts of other things.
Several times during Danny's bouts of discomfort this past month, I asked him if he was happy. The answer was always "Yes". Are you sad? "No." He's also indicated that he constantly feels the presence of God. During his most painful days, I thought about sending out a plea for prayers and good thoughts from all of you, but given his professed happiness and sense of the divine, I sometimes feel I should just ask Danny to send prayers and good thoughts for the rest of us who aren't always blessed with his certainty. Here's a deal: you send him prayers and/or good thoughts for his stomach and for success at Brainfingers and I'll ask him to pray for all of us. We'll keep getting through it together.
Much love, Jeff
Attached are 3 photos:
1) Danny with a sweet smile for his cousin Katie who often provokes grins from him.
2) Aunt Teri, Lynn, Danny and Katie, during Teri's recent 10 day visit.
3) Danny with our friend Meherwan Irani (great-nephew of Meher Baba) who played some wonderful original songs for Danny.
to write to Jeff: manonash@verizon.net to write to Lynn: lynnswan7@verizon.net
