Very encouraging news! First of all, it's me (Mike) writing this blog update. I started back to work on Wednesday (Dec. 2) on a part time schedule. Things look good and I should be back to a full time schedule in mid-January.
When I think of all that has happened over the last 8+ months, it's amazing to think that I'm back at work. For a while they thought I might not survive, and then for some time it was thought that I wouldn't be able to work my job again. Then a few months ago a therapist voiced that she could see it might be possible to get back to my job. And now I'm working again. Wow.
There are so many thanks to give. God has worked through so many people to help me and my family. There is no way I could express to each of you the thanks due for the many ways you have helped us (prayers, cards, visits, calls, advice, empathy/tears, babysitting, rides, ... and much more).
As I said, there are so many thanks to give, but I want to especially mention Patty (she doesn't know I'm writing this). She has persevered through so much over the years, and over these months she has worked and struggled all the more for our family. For some time I was unaware of so much of what was going on because I was so out of it. As I have learned more and more (without getting into the many details) I am amazed at her endurance and her love to me and Luke and others. I have a wonderful wife!
Things have been difficult for Luke at times, but I have have really seen him mature. I am so proud of him! We have had such great talks and I enjoy so much our time together. We were even throwing a football back and forth together the other day.
Overall, the medical people have been so good to us. As one neurologist at UCSF described, the condition I have and its treatment is "uncharted waters" because it is so extremely rare. Medical monitoring is ongoing. Please continue to pray for us.
Without getting into detail, there have been so many ups and downs, but God has worked through so many and blessed us so much! Thank you again for all the ways you have helped me, Patty, and Luke.
Happy Holidays!
Mike
Friday, December 4, 2009
Tuesday, October 6, 2009
Emotional roller coaster continued...
On the cusp of returning to work part-time, Mike was readmitted to UCSF for a long weekend due to declining symptoms. Maybe he was missing the food service. Joking aside, I didn't update the blog because I was too discouraged to report it.
But now that he's showing signs of improvement (again), here's what happened:
He was tapering off a high dose of Prednisone (rocket-fuel-like steroids) and he got to a level his body couldn't manage. At first we tried to deny what was happening. Maybe he just needed another nap. Or more exercise. But then we couldn't ignore what we were seeing. So luckily Dr. Cree's nurse practitioner agreed to see him last minute (Cree's next availability is April 2010) and within 10 minutes she had him readmitted.
He came home last Monday.
Giant reset button activated, he's showing the same determination as usual. He's back on the rocket fuel, plus more immune suppressants to try and keep the antibodies at bay, and he's working his way back to health. The great news is that his latest MRI shows a "beautiful" (technician's word) brain with no swelling.
We cling to the hope that this time's for real and that his quality of life will continue to sky rocket :).
On the cusp of returning to work part-time, Mike was readmitted to UCSF for a long weekend due to declining symptoms. Maybe he was missing the food service. Joking aside, I didn't update the blog because I was too discouraged to report it.
But now that he's showing signs of improvement (again), here's what happened:
He was tapering off a high dose of Prednisone (rocket-fuel-like steroids) and he got to a level his body couldn't manage. At first we tried to deny what was happening. Maybe he just needed another nap. Or more exercise. But then we couldn't ignore what we were seeing. So luckily Dr. Cree's nurse practitioner agreed to see him last minute (Cree's next availability is April 2010) and within 10 minutes she had him readmitted.
He came home last Monday.
Giant reset button activated, he's showing the same determination as usual. He's back on the rocket fuel, plus more immune suppressants to try and keep the antibodies at bay, and he's working his way back to health. The great news is that his latest MRI shows a "beautiful" (technician's word) brain with no swelling.
We cling to the hope that this time's for real and that his quality of life will continue to sky rocket :).
Thursday, September 3, 2009
Lots of great news to report on Mike's progress.
Last Friday marked his 6th week at home and his final week of in-home therapy. Not only did he graduate from speech, occupational and physical therapy, but the experts don't think he needs outpatient therapy.
He's up to 26 minutes on the stationary bike, and able to walk 3 'loops' around the neighborhood in the morning with his cane.
He completed his neuropsych testing in 2 sessions, which consisted of a battery of cognitive tests to check his work readiness, and the doctor felt great about his abilities. Now he's just working on increasing his mental stamina.
Last but not least, Dr. Cree ordered an MRI on Friday because Mike was having some sensation issues. We spent the weekend a little apprehensive, especially since he's been progressing so well lately. On Monday we went for the follow-up appointment and saw the MRI results. The frontal lobe swelling is almost completely gone--only a 'sliver' remains! It was great to get such positive feedback.
We're so grateful for all the prayers and good vibes that have carried us these past 5 months. Again and again, thank you.
Last Friday marked his 6th week at home and his final week of in-home therapy. Not only did he graduate from speech, occupational and physical therapy, but the experts don't think he needs outpatient therapy.
He's up to 26 minutes on the stationary bike, and able to walk 3 'loops' around the neighborhood in the morning with his cane.
He completed his neuropsych testing in 2 sessions, which consisted of a battery of cognitive tests to check his work readiness, and the doctor felt great about his abilities. Now he's just working on increasing his mental stamina.
Last but not least, Dr. Cree ordered an MRI on Friday because Mike was having some sensation issues. We spent the weekend a little apprehensive, especially since he's been progressing so well lately. On Monday we went for the follow-up appointment and saw the MRI results. The frontal lobe swelling is almost completely gone--only a 'sliver' remains! It was great to get such positive feedback.
We're so grateful for all the prayers and good vibes that have carried us these past 5 months. Again and again, thank you.
Saturday, August 8, 2009
After a very steep learning curve, we have lots of good news to report since he's been home.
The cluster of in-home nurses and therapists have been invaluable regarding his improvement. They think he's met his in-home goals and should move on to outpatient therapy.
On Thursday he graduated from using a walker full time to using a cane. Yesterday he was walking on the grass with just a cane and no additional support!
His cognitive function has markedly improved including reading, using the phone, and remembering certain details.
This Tuesday we have an appointment with Dr. Cree who hasn't seen him since June 2nd. If Dr. Cree has any new findings we'll post them.
P.S. We spent a chunk of the day reading the cards he's received over the past 4 months. He was so overwhelmed by all the love and good wishes he needed to take a nap afterwards! So thank you. The encouragement just keeps flowing...
The cluster of in-home nurses and therapists have been invaluable regarding his improvement. They think he's met his in-home goals and should move on to outpatient therapy.
On Thursday he graduated from using a walker full time to using a cane. Yesterday he was walking on the grass with just a cane and no additional support!
His cognitive function has markedly improved including reading, using the phone, and remembering certain details.
This Tuesday we have an appointment with Dr. Cree who hasn't seen him since June 2nd. If Dr. Cree has any new findings we'll post them.
P.S. We spent a chunk of the day reading the cards he's received over the past 4 months. He was so overwhelmed by all the love and good wishes he needed to take a nap afterwards! So thank you. The encouragement just keeps flowing...
Friday, July 17, 2009
Wednesday, July 15, 2009
All the good thoughts/prayers/well wishes have caught up to him! There's so much good news to report. He's making monumental progress everyday.
Now it's one thing for me to be awed by his improvement because I'm partial. But the best testimony is the looks on the staff members' faces as they see him walking without any assisted devices. He's getting lots of encouragement as he cruises around.
One of the exercises requires clutching an inflated beach ball while he walks down the hall. The therapist is next to him, lightly holding up the back of his pants for support while he walks. He was able to do this once around the 7th floor. Then the therapist made it harder by placing a small stuffed animal on top of the ball--not glued or taped, just freestanding on top of the ball. Mike made it around the floor 1-3/4 times before the animal dropped. Pretty amazing!
Cognitively he's improving each day with simple exercises like following a recipe, and his reading continues to improve.
He's hopes to be home ASAP.
Now it's one thing for me to be awed by his improvement because I'm partial. But the best testimony is the looks on the staff members' faces as they see him walking without any assisted devices. He's getting lots of encouragement as he cruises around.
One of the exercises requires clutching an inflated beach ball while he walks down the hall. The therapist is next to him, lightly holding up the back of his pants for support while he walks. He was able to do this once around the 7th floor. Then the therapist made it harder by placing a small stuffed animal on top of the ball--not glued or taped, just freestanding on top of the ball. Mike made it around the floor 1-3/4 times before the animal dropped. Pretty amazing!
Cognitively he's improving each day with simple exercises like following a recipe, and his reading continues to improve.
He's hopes to be home ASAP.
Monday, July 6, 2009
Everyday brings some form of good news. He's working really hard in all areas, even going to the physical therapy room on days when he doesn't have any scheduled sessions. He's so eager to get home. He knows how important each day is.
The results from the Mayo Clinic came back. Brace yourself for more confusion. He's negative for the GAD-65 antibody in his spinal fluid ("csf") but positive in his serum (blood). Thankfully the neurologist admitted twice that they "just don't know enough about the GAD syndrome to draw any new conclusions." So the plan remains the same: to focus on overcoming any deficits through rehab.
His handwriting and short-term memory are improving, and his occupational therapist found a way to help him compensate for the "shaky head" sensation by working on his core muscles and posture. (I'm learning how much I take the little things in life for granted, like feeding and taking care of myself.) His positive attitude and endurance continue to amaze me.
The results from the Mayo Clinic came back. Brace yourself for more confusion. He's negative for the GAD-65 antibody in his spinal fluid ("csf") but positive in his serum (blood). Thankfully the neurologist admitted twice that they "just don't know enough about the GAD syndrome to draw any new conclusions." So the plan remains the same: to focus on overcoming any deficits through rehab.
His handwriting and short-term memory are improving, and his occupational therapist found a way to help him compensate for the "shaky head" sensation by working on his core muscles and posture. (I'm learning how much I take the little things in life for granted, like feeding and taking care of myself.) His positive attitude and endurance continue to amaze me.
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