John passed away at home at 1:55 in the morning on Thursday. He was surrounded by many friends and family members. It was a very peaceful passing and he did not suffer.
There will be a visitation at 1:00pm on Monday, May 30th at Family of God Lutheran Church in Brooklyn Park, Minnesota. There will be a memorial service at 2:00 pm the same day. Afterwards, there will be desserts and refreshments.
May 27 2011 | Uncategorized | 1 Comment »
Last night, many of John’s friends got together and roasted John. There was much storytelling, many digs and a gigantic amount of laughter. What was evident, was how much John and Stephanie are loved. They are great people and an even greater couple. Please feel free to share your stories, or roasting, of John and/or Steph in the comments. I’m sure they will love hearing everyone’s personal experiences with them.
April 16 2011 | Uncategorized | 2 Comments »
Wow! Two posts in one week!
One of the things John wanted to do before he goes is to go to The Shout House in Minneapolis. Not knowing how much time we actually have, Steph called there to see how hard it would be to get a reservation. They told her that they were booked out many Saturdays in advance. She told them John’s story and they made room for us. All fourteen of us. They were extremely accommodating and they were so awesome the whole night. Our waitress was the bomb. They just made us feel like we were special and we had a great time all night. They were the epitome of great customer service.
We had a great time. Please give The Shout House your business if you’re looking for a night out. It was fun and hilarious and is a good time.
April 11 2011 | John | No Comments »
Wow! It’s been over a year since the last update. I’m sorry about that. Where does the time go? Here’s an update on John’s health from Stephanie:
John signed up for hospice last week. He has noticed some pretty big changes in his breathing and is having a lot of trouble with the mucus in his throat. He is no longer able to tolerate the cough assist machine because he feels like he can’t breathe when we use it. He has put off signing up for hospice for a long time because he was afraid that there would be too many restrictions, but we were both pleasantly surprised when we learned more about it. The doctor was very clear about the fact that John is the one who is in control of his treatment. John does not want CPR, intubation or hospitalization but he also wanted the doctor to know that he has not given up. He still wants to be treated for things like pneumonia or other infections. Hospice will give him whatever he needs at home, including antibiotics or any other drugs (literally). Any drug that John asks for is at our doorstep within a couple of hours. The doctor even prescribed 3 shots of Vodka instead of 2, which made John flash a big grin.
John is much more tired these days, but he is happy. The nurse is at our house right now giving him morphine for the first time, so I imagine he is even happier than usual! The doctor explained to him that morphine will help him to feel like he is not fighting for breath and they want to find the right dose so that John can be more relaxed but not too sleepy. They started with a very small dose and added another one a half hour later. The nurse said John did very well on it and it did not change his breathing or heart rate at all. Once we know what dose to give him, he can have it whenever he asks for it. Nathan already suggested a related method of funding Sabrina’s college tuition, but that’s another story.
Hospice also brought oxygen for John that he can use when he wants to. It does not really change his breathing, but it does help him feel a little better. They also prescribed two more medications to help with mucus and another medication to help him sleep. He will have a nurse visit once a week and a home health care aid will come 2 days a week for an hour. I am told it will be a big man named Fidel, so there should be a couple of good stories about that! A social worker will come every couple of weeks and hospice is on call 24/7.
Everything I read about ALS tells me that once a patient gets to the point John is at and starts to go downhill, things progress pretty quickly. The kids are both aware of this and are doing well. John is quite stubborn and full of surprises, though, so you never know.
I’m sure that John, Steph, Sabrina and Logan could all use your thoughts, prayers and well wishes now more than ever. And thank all of you for being there for them on this journey.
April 05 2011 | John | No Comments »
An update on John’s health from Stephanie:
John’s last appointment at the ALS clinic was in Feb. His breathing is somewhere around 38%. He seems to test all over the charts with different blows, so it is hard to say for sure. It has become very difficult for John to speak. Some days are better than others, but he often has to use his computer to communicate. He is still using the bi-pap machine only at night for breathing, which is good. He has very little use of his arms and legs, but he does still go on the computer every day. He has a great set-up on his computer that allows him to go on internet, control the T.V. and lights, and even answer the phone. It’s hard to believe that it’s been three years already, but it has.
March 26 2010 | John | Comments Off
The above slideshow consists of some pictures taken at the Nickelback concert that John attended with Sabrina and some other friends and family members. Everyone had a good time. The other pictures are from a party at Steph and John’s house with Kip and Shannon, who have become good friends. The party was in “the loft” and it was tricky getting John and Kip up there, but was worth it. You can see the pictures bigger and in greater detail by clicking here.
As for John’s health, here’s an update from Stephanie:
“At his last appointment his breathing was down to 47%. The doctor put in orders for him to go on bi-pap during the night and occasionally during the day. He also wants John to start using the feeding tube because he feels that John is using too much time and energy to eat meals. A nurse will be coming out to show us how to use the feeding tube (again). He also visited the Courage Center and they have ordered him a computer that will talk for him. If the ALS loan pool has the forehead dot attachments, he will use the computer with the dot. If not, he will use a mouse for now. The nurses at Courage Center are hoping that John will be able to get eye gaze in the future for using the computer.”
As always, John continues to enjoy life and has a supreme sense of humor.
May 10 2009 | John | Comments Off
This picture was taking 2/13/09. John caught this fish while on an ice fishing trip with Dan, Paul and Joel.
March 01 2009 | Uncategorized | Comments Off
I just wanted to share this photo that Amy Vleck sent me that was taken on the recent hunting trip that from John, Bob and Dan had last weekend. Looks like it was a pretty successful expedition! And they had fun, too, I’m told.
November 15 2008 | John | Comments Off
John had his quarterly check up on October 2. His breathing capacity was at 70%. They wanted him to have the feeding tube put in before his breathing is below 60% and so it is scheduled for November 17th. He will be in the hospital for a couple days while recovering. He is still able to eat normally after he has the tube put in, but he needed to have it put in before needing bipap or other breathing help. His weight continues to drop 5 or 6 pounds with each appointment, mainly due to muscle loss. He still has a good appetite.
The remodel is mostly done and John and Steph are completely moved to the basement. John mostly uses his new wheelchair to get around, but he can walk a short distance with help or a walker. They are looking into getting hospital bed and a Hoyer lift to help get him in and out of bed.
John hasn’t driven for several weeks now and until October 31, his parents were driving him to and from work. On Halloween, John had his last day of work. So far, he seems to be enjoying his retirement. He has even continued the family deer hunting tradition by accompanying his dad and brother on the trip.
Please keep John and Steph in your thoughts and prayers, especially next Monday when he has surgery.
November 10 2008 | Uncategorized | Comments Off
Just click on an item if you like it or if you want to see all of the items available at John’s store you can find it by clicking here. If you find a design you like, but it’s not on a product that you like (for instance you want the I <3 John on a coffee mug) you can customize it like that for yourself. If you have questions or can’t figure out how to do that, email me at shellimil@gmail.com.
Hopefully this will bring emotional and financial support for John, Steph and the kids, garner interest in the website, Lou Gehrig’s disease and John’s personal cause.
Please see post below for information about the Walk to Defeat ALS.
September 30 2008 | Uncategorized | 1 Comment »
