Friday, August 29, 2008

just when all was well . . .

Dan has been in classes a few days, putting many miles on his chair, and studying very hard. [see his study hard, looking photo >>>]
He also has been helping with getting help for things like laundry [McKinney girls only need apply], relief and over night help. He has had about 10 guys in so far to learn about his life, his DPS [pacer], spasm helps, etc. It will allow him to go to lunch and dinner with more people. This piece of his return to CU was flowing smoothly until Wednesday PM.

There is a thing called Autonomic Dsyreflexia [AD] that only SCI people have. We had never experienced it, know about it, but didn't really give it too much thought, until Dan was in the middle of an AD episode this past Wednesday evening. Needless to say, we ended up at the hospital, and after 4 hours he was back to almost normal. A CAT scan, and EEG showed him to be 100% a okay, with no seizure activity. [They thought it was Neurological related, as many smaller hospitals never deal or are familiar with AD] So we teach again ... along with the DPS.

This scare has caused us to aggressively "up" AD training and awareness to anyone who is around Dan. He was aware of what was going on BEFORE it started happening, Garrett and I, along with EMT's worked to get it under control. Thanks to the CU and Cedarville paramedics and EMT's for their quick response. It just so happens that there are 9 of them in Dan's dorm building, including 1 across the hall from us. God continues to protect and watch out for him.

Please know that we wanted to wait until Dan had an okay bill of health before posting. I know all of you understand. The CU family knew immediately, guys gathering for prayer as we were en route to the ER, and staffers who were notified and prayed. Thanks to Dean Brad Smith for hanging around the hospital until the wee hours of the morning [I forgot to sign your your chapel excuse], and others of you who called, or texted me, etc. The many notes on Dan's dorm room door, were extremely encouraging to Dan, Garrett and me.

I remember a comment awhile back from a blog reader who said she was up in the middle of the night and prayed for Dan. I thought at the time, "Hmmm, all is well right now!?!" in the early hours of Thurday morning, I was very thankful, for those unknown, random prayers, that go up for Dan. Thank You.

We NEVER do know what a day will bring.

Tuesday, August 26, 2008

desk, beds, tuition and lifts

Dan has a few items for which to be thankful. First of all, here is the plaque that is outside his dorm room in McChesney Hall. Thank you Class of 2008 officers and graduates (now working hard, at real jobs and paying taxes), the various school vip's, deans, building advisers, construction people and so many others, for your generous gifts and time, to make this special dorm room happen for Dan and future students.

#1) Dan needed a bed for school. Someone found a used bed at an agency in Dayton that helps special needs people. BUT for a few years, Barb [mom of Emily, another CU handicap student] has been soliciting requests from medical bed manufacturers to DONATE a bed or two to CU for these special needs dorm rooms. Well, last Monday 2 beds arrived from Joerns Medical, and Dan has a new bed. I think the cost would have been around $15K. A long time before Dan needed any kind of hospital bed, God was preparing the way for his future sleep comfort.

#2) Dan needed a table for his computer. He uses a hospital bed table at home, but it is not wide enough for him to get under it, or close to the screen. This request was made know, and the next day, an electric computer desk was provided for his dorm use. [we HAVE to get one of those for at home] Thanks again God, for those who helped provide this need.

#3) Garrett, Dan's assistant, and newest OPE member is taking a class with Dan. One class at CU does not qualify a person for any federal assistance. The need was made known, and OPE students and alumni came to the rescue, by providing all of his tuition for classes. [His food is covered by us] Thank you God for how OPE guys around the world continue to "encourage one another".

I, Bill, am still at CU, busy setting up Dan's schedules, finding nurses to check in on some of his daily care, tutors for class room and online [6 extra hours], small things like laundry, dorm cleaning, assistance for meals, and especially time off for Garrett. It's difficult for any one person to take care of any special needs adult 24/7, and as my mom would say, "Many hands make light work."

There is another big project underway that will directly benefit Dan, Emily and other needs students at CU. We thought we could get away with a simple 1 track ceiling lift for these rooms. Cost would only be about $4-5K.

[With limited space, using an over head ceiling lift vs the floor lifts, is like pushing your car around, vs driving it where ever. I know that I have run over too many toes of helpers, while trying to get Dan in or out of bed, and also holding up his legs so they don't bump the lift, then pivoting and positioning to a sitting position in his chair, but not pinching his legs with the lift either. ANYWAY ...]

All of the ceiling lift companies will not install a single track in flex core ceilings because of safety and liability reasons. Thus a unit which attaches to the side walls and does cover the entire room [it's much more helpful and flexible] has been quoted at around $11k. Unfortunately, no companies have come forth to provide a free one of these, but just by word of mouth, funds have been adding up. The ceiling lift fund for Emily's room, [Dan's will be next], is only $2k shy of the $11K that needs to be reached. There is a CU fund set up for this, Ceiling Lift Project. SEE THE SIDE BAR FOR MORE INFORMATION, if this is something that you would like to help with.


Wednesday, August 20, 2008

Reprieve Reprieve

I got a call today that told me that Dan has a reprieve from the State of IL. DHS will be able to continue to fund Garrett, Dan's Personal Assistant [PA] through Dec 31st, 2008. The "appeal letter" that Dan submitted was noted and agreed with by the DRS. [How could they NOT be persuaded by Dan]

In the meanwhile we are scrambling to get some type of PA assistance in the state of OHIO. The state of IL comptroller will not pay directly, because they cannot properly monitor in another state, but they will pay via an IL approved care agency. We have already researched this with a national agency that we used when we first got home from RIC last year. [There's always "one more thing"]

Isn't God good ! ! !

Friday we were met by a host of "Getting Started" students who emptied out 2 vans in 5 minutes. Some helped set up Dan's room. [More on that later] We made the usual Walmart run, and Dan spent his first night back at the 'ville.

During Monday night's Bible Conference session, Pastor Rohm, CU Students' Pastor, was announcing praises from recent MIS trips and events, "And another praise is that Dan Knudsen is back on campus." The auditorium broke out in a big round of applause, whistles and hollering for Dan. You had to be there. :D

This is the place for Dan right now. Students, faculty, staff and alumni stop him everywhere, say "Hi, we're so glad you're back at CU". Thank you, Thank you, Thank you from the bottom of our hearts.

Friday, August 15, 2008


We are going to Cedarville University on FAITH. God has brought us too far to give up. You can't believe all that CU has done to prepare for Dan. The state of IL will give caregiver funding for 2 weeks. That's the maximum they give for out of state. We have phone numbers for officials; Bill will be on the phone once again practically non-stop. We're not understanding why IL will pay for out of state tuition but not for the needed nursing care. We're trusting God to lead us to the needed resources. Perhaps YOU will be part of that help!
Keep praying!
God is so good -- all the time.

Thursday, August 14, 2008

Please Pray for Funding

Our plans are to leave first thing in the morning to take Dan to Cedarville, but just now received word that there is no IL money, for Dan's personal care [Garrett or others] if he is out of the state of IL.

We have no idea why no one in the related departments did not understood this policy sooner, as we were told many months ago that Dan's college care would be taken care of. We are scrambling, constantly on the phone, and writing letters of appeal to various state agencies and officials, trying to find the resources from IL or OH that he needs. Please keep this situation in your prayers.

Monday, August 11, 2008

Go Cubs Go Dan

Hey Hey Holy Cow !!!

Dan finally made it to a Cubs game this year. Sunday evening to be exact. And what a game! Did he ever enjoy seeing the Chicago Cubs win, 6-2, against their rivals- the St. Louis Cardinals. [Take that, you Cardinal blog readers.] It was even televised on ESPN

We will try to put captions under the photos, but the blog site is messed up, and it's really difficult to post ANY photos. [Matt, we need your help] Also the "good camera" was not available, thus the photos are only cell phone quality.

Dan and I [Bill] had great seats in the handicap section behind home plate. The tickets had to be picked up game day at the ball park. We parked the van in handicap parking lot on CUBS property. Dan navigated his way, with excellence, through the crowds. We were instructed to look for the handicap signs, just inside the ball park. An usher took us down a long steep ramp, almost field level, then there was a chair lift to take us up to our seats. It seemed easy for Dan, and the ushers in the handicap area went out of
their way to help. The only negative was that when the crowd stood, which they did many times, Dan couldn't see the field. I tried to capture the game via the camera on his cell phone, but that didn't work the best either. Dan did not really seem to mind. He is great in crowds, and seems to pay no attention to the "gawkers".

Of course you CANNOT go to CUBS game without the proper clothing. Dan was wearing his CUBS t-shirt, CUBS long pants, CUBS boxer shorts, and CUBS hat, AND brought his hand made [Lyle kids] CUBS blanket. Bill just wore Dan's CUBS Zambrano jersey, a CUBS cap and brought the CUBS flag to wave. [the same flag that flew behind Bill's bike, on a 487 mile ride from Minn, MN to Elgin, IL]

Dan enjoyed all the foods of a baseball game: a hot dog, lots of peanuts, water, and fries with nacho cheese. It did turn cold about the 5th inning, so the OPE sweat "hoodie" came out of his back pack. How could you go ANYWHERE with out OPE?


We have not had much response for nursing help. A few nursing students have contacted us, but thats about it. It is not recommended, that we rely on student for Dan's care. Yes, many of them will be able to help with school work, note taking, laundry, cleaning, physical therapy, nursing care, and hanging out, etc, but most are full time students, and they too have very busy schedules, and Dan's care is 24/7. Please continue to pass the word about Dan's part-time nursing needs, especially in doctors offices, clinics and hospitals.

We know they are out there, AND that God will provide for us at the right time. Thanks from all of us.

Tuesday, August 5, 2008

Ohio Help Needed

For the past 9 months, Dan has had 2 faithful nurses: Kathy comes every single Tuesday, and Trish cares for Dan 3 days a week during the school year. These women have rescued the Knudsen family by going above and beyond the call of duty to take care of Dan. We could not do it without their help. You cannot imagine the hours it takes to care for a quadriplegic (24/7, actually). In addition to our nurses, we have numerous others who weekly or occasionally stop by to bring Dan lunch, watch a ball game, do some physical therapy, clean, sit with Dan while we get some house things done or go out to eat. Again, we could not do it without their help.

Since the beginning of Dan's accident, many from the Cedarville area have asked for a tangible way to help Dan. We need another Trish and Kathy and Sue (stayed with Dan when we were in Costa Rica.) as well as new volunteers to help in those other areas. Dan is on target to return to Cedarville this semester; in fact he leaves in less that 2 weeks. Dan has his personal assistant who will be with him, but he still needs some help in the following areas: personal morning care (nursing or nurse assistant-type person), some physical therapy (to give Garrett some breaks), and a few other areas. The nursing/CNA care is a paid position and requires approximately 2-3 hours per day. You can sign up for even one day a week or so, or even as a substitute once a month. Please spread the word to health care professionals you know who live in the Cedarville area. If you are willing to help, we will train you -- nothing is too difficult. Bill will be staying at Cedarville University until Dan's full schedule is established. Email us at: for more information or to leave your name.

The Lord has provided for our family in amazing ways, and we eagerly await to see who He brings our way!!

Monday, August 4, 2008

Baltimore Memories

Following is the post Jen put on her blog.
Sunday, August 3, 2008
Dan in Baltimore
I've kept wanting to blog about Dan's visit, so finally it's here!
In the 8 weeks Dan was out here at KKI, we got to see him about 2 times a week, which was such a blessing - catching up on his life and his therapy and all he wants to do.
Overall Dan is doing so well. The biggest joy over the past few months is that Dan is every bit his cheery, sarcastic, witty self and is a blast to be around. Sometimes when we would visit, he was so exhausted from intense therapy and lack of sleep he would forget what he was saying mid-sentence. Yes, we laughed at him - it really was hilarious! I've never encountered someone so tired, yet trying so hard! (Love you, Dan!)
But most of our visits he was pretty much awake. We played Yahtzee one visit, Monopoly another, and of course, the Cubs game was usually on when we were there. Visits always included touching up his nails, usually a shave, and even once a buzz haircut by Jeff (who also does his own hair). And Dan's favorite - a homemade meal!
My favorite times were when we went out to eat. No TV, no nurses distracting, just sitting around eating and LOTS of talking! The weekend before they left for home, we met up with Dan, Dad and Garrett at Don Pablo's. Again, it was such a blast sharing memories and finding out about the people Dan met while out here. In the car on the way there I had asked Jeff if we had ever been there together. Then I remembered - oh my goodness - the only time we had gone to Don Pablo's was March 9, 2007. While waiting in the lobby for our table we got a phone call from Dad that Dan was hurt. We didn't then know it was a neck injury or even that it was very serious so we continued our dinner. Dan had plenty of jokes to make about that when I told him that story! What a cool reminder of God's faithfulness - just over a year later from when we got the news that life would change forever, there we were laughing hysterically together in the same place.
Every time I'm out somewhere with Dan I think of how rare it is to see a person with his injury out and about. I think a big reason is that Dan has never minded being in public and what a huge blessing that is for us to be able to enjoy his presence anywhere! I think the biggest reason others don't get to go out much is because they just don't have the means or the support system that Dan does. Enter Dad and Mom and all their work to give Dan the best transportation, home, education, therapy, and all in all life that he can have.
Family is really a blessing and Dan encourages our hearts so much. Not necessarily because he's an "inspiration" or is "strong" (although those are all part of it), but as his family it's because he can laugh and keep us laughing. Because he's still Dan.

It was in Baltimore that we all realized that our Dan was "back." I had missed that laugh.