Merry Christmas 2008

Merry Christmas & Feliz Navidad, to all of our CheckInOnDan friends. We trust you are enjoying time with your families and all the festivities of the Christmas Season.



We ask you to be in prayer for a few pressing issues:
1. Dan to continue to have a consistent blood pressure.
2. State of IL, funding/approval for Dan's personal assistant, Garrett.
3. State of OH, to be expedient in approving care for Dan.
(Dan currently has NO support, medical care, etc, from either state)


Dan had an article in the Cedarville University, Alumni Inspire Magazine, His article is on page 16. Enjoy

PS - If you are not able to open this link, email us, for a PDF copy of Dan's article.

Holiday Help

Dan is done with his first semester, post accident. He has hopefully passed all 9 of his credit hours. That being said, Dan could use help, here at home, to replace the 25+ people who help him at school. His care assistant, Garrett, will be gone for a 2 week vacation with his family, for a much deserved rest. Very few people know of intensity in taking care of a person with a high level of injury, such as Dan has. Garrett does, and Dan could not have completed this semester with out him. Thanks Garrett. It's been wild at times ;D

This request for help, is mainly for those who live in the Elgin, Fox Valley area. Below are the areas of help that we could use. Most of these items would only take 1-2 hours of your time. It could be just one time, or weekly. ONLY respond to IF you are able to help.

We ARE looking for regular help when Dan is at home, for now and the future. This is a paid position.

Thanks as always for your prayers & love,

Bill, Debbie & Dan Knudsen


1. Lunch, your left overs, our lunch food, or purchased [feeding Dan is not necessary, but very helpful]
2. Dinner [preparation only]
3. Range of Motion - Exercising Dan's arms and legs [no experience required - Dan will explain as you go]
4. e-Stim [exercising with electric stimulus device] its easier than it sounds.
5. Getting up in the AM - 1.5 to 2 hours
6. Helping into bed in the PM - .5 to 1 hour
7. Visiting or Hanging out with Dan while Bill & Deb get away to do some shopping.

Finals Week

Where has the time gone since Thanksgiving?

4 sleepless nights, 4 days in the hospital, Doctors who tested & monitored, poked and prodded, many consulting with specialists, etc, 3 days recovery at home, and all the while, loads of studying by Dan for his Finals. [pray that he remembers all that he has studied]

Since all systems seem "GO" Dan, Garrett and Bill headed back to CU on Sunday. [Eating pizza most likely right now] Dan has a final exam to complete this Monday, and then say his good-byes for this semester. It's hard to believe that the semester is already over. Lots of major changes and adjustments for Dan, CU staff, professors and Deans, Garrett, OPE guys, dorm buddies, nursing students, physical therapists, etc. It has taken "many hands (to) make light work" as Dan's Grandma K. would say.

Oh Yes, you want to know ALL of Dan's medical issues? [what about those HIPPA laws?] His high blood pressure and AD episode were from the usual irritating issues, except his toes, which got a very clean bill of health. His bladder, surbra pubic continue to be an irritant, so a new med was prescribed.

Why did all of this happen at this time? Only God knows. We are thankful to Dan's SCI Dr. Khim Yin. We had access to her at 2am, to talk us through unstable moments, saw Dan at the hospital daily, with many other phone updates, and orchastrated all of Dan's care, tests, with the 5 other specialists. Spinal Cord injuries are different from person to person, and so we continue to learn for the future.

We continue to give Dan to God, knowing that he is still with us "for His purpose".
Thanks for your continues prayers, even when "all seems okay".

hospital visit

After 4 restless nights, Dan checked into our local hospital today. EVERYTHING is being checked by his SCI doctor, urologist, podiatrist, cardiologist, and internal doctor. He should be back at CU this week for final projects and exams.
we will keep you posted.

Happy Thanksgiving

Many things happen so slowly around here, then much happens in the blink of an eye.

Dan is home for a week of Thanksgiving break, and it is good to have him around here. We have been able to let Garrett off for a few days of much needed rest, and are quickly reminded of the care Dan needs on an hourly basis.

This was the first Thanksgiving in this home. And the final count was 15.(smallest Knudsen holiday on record!) Absent this year was Dan's cousin Cory, who went home to Heaven this past spring, after many years of battling Muscular Dystrophy. His quick whit and innocent smile were missed.

We had a quiet evening, but were awakened at 1 AM Friday, by Dan, who complained of a pounding headache. Within minutes, he was in the middle of his 2nd ever, Autonomic dysreflexia [AD] Episode. [For those who helped out with the first one in August, this was not as long lasting or intense.] Thus began a flurry of events including, a 911 call, nitro paste, 170+ BP, low oxygen level, holding up a non responsive son, ambulance ride, ER, informing Drs. and nurses of AD, and waiting. We got home about 5AM. and had a sleep-in day.

Dan's subra pubic was the probable cause, and it was replaced by the ER Dr. It was something a nurse was scheduled to do last week at CU, but the insurance cut all of Dan's nursing care, as he is considered "stable" and not in need of any skilled nursing care. Please pray with us that those denying this need, would reverse their decision and grant this crucial need in Dan's weekly care.

All seemed okay on Friday, except dizziness from a new med for his UTI, but at 1:30 AM, Dan woke us up again with the beginnings of a headache. This time we applied 2 applications of nitro paste, called his SCI dr., gave him a few extra meds, and put him in his chair, to keep him more upright. His BP dropped to under 130 and we breathed a slight sigh of relief. Dan slept in his chair the rest of the night.

We continue to search for answers, and fight for Dan's medical needs. We were glad this happened when Bill was around, but it's not a good event to see your child go through. It's definitely not good for Dan, or anything that he can control.

It's events like this that we realize our inability to control, or know everything there is to know about this complex injury. Continue to pray that doctors, medical people, care givers, insurance companies, IL & OH state aide agencies would be able to address and meet, Dan's physical care.

Bill, Deb * Dan

"Let It Snow .. Let It Snow .. Let It Snow .."

"Oh the weather at CU turned frightful"

Finally, the long awaited posting from Dan about his being back at Cedarville U. "now that the semester is a few weeks from being over ...

How's life at the ville? "It's been great being back at Cedarville, connecting with friends old and new. There are about 25 people, local nurses, students, and others, who help Garrett with my daily care. Not to mention the McKinney [dorm] girls who help out with my 3-4 loads of laundry each week. "

How many classes are you taking? "3: Christian Worldview Integration [classroom], US History II [online CU], and Managerial Accounting [online - community college]

How are they going? "Very good. It's been a lot of work, but being back and doing classes sort of make me feel somewhat back to normal"

How is it getting around campus? "not too bad as CU is intentionally wheel chair accessible. i put on about 2 miles a day, and charge my chair almost nightly. I am not looking forward to the cold weather. It takes more time to go anywhere outside"

How is the food at Chucks? "MEH" "It tastes like I never left" "i always eat breakfast in my room, and the dorm fridge is stocked with food, for when i can't get out.

How is dorm life? "CU has set up a "suite" for me to live in McChesney Hall. 2 bedrooms, a large handicap bathroom and direct outside access, for the nurses who help out daily." [Thank you again Class of '08]

If you want to ask a questions about life back at college, leave it below in the comments, and i will answer you. ~ Dan

Mini update

Dan was home last weekend for fall break. He looks great and is still enjoying school. As Dan and Garrett were planning to leave Monday morning, Dan's wheelchair broke. A very specialized part was needed, had to be ordered, and so they were not able to leave until Wednesday night.

Dan has made it through the first half of a semester! His work load is heavy, but he's plodding away. Doing assignments takes more than double the time as before his accident, so we are extremely proud of him for working so hard.

Dan has an amazing attitude. He shared some ministry ideas when he was home. I can never forget that Dan should not be alive, so we know that the Most High God has spared him for some purpose.

Please pray for him: lack of sleep, work load, all 3 wound sites cause pain (trach, pacer, supra pubic). I always tell him that it doesn't seem quite right that he can't move or "feel", yet he has pain.

Thank you, faithful ones, for continuing to check on Dan, especially since we don't update often enough.

Family News

We are happy to announce the engagement of Dan's twin brother Mike, to Liz (CU '08). So, I am going to "borrow" a family news item from Jen's blog site!!! (You have to love 'copy and paste'.) Here goes:


Mike and Liz are engaged!!!!!
Yay!!!! We are so excited for another wedding, but more so for Liz - for those of you who haven't met her, this girl is incredible! And for those of you who have met her, even for a minute, you see right away she is one of the sweetest, most genuine people out there...but she does have that little hint of "feistiness" that must be evident in all Knudsen girls. :-D
It's pretty surreal thinking of my little brother getting married! We have no doubts that he is going to be a great husband. Mike is probably the most easy-going out of any in our family (well, before Jeff came along!), although also has that passion and sometimes impulsiveness that most of us have! For those who don't know, he has just started his 2 year graduate program in Athletic Training at Western Michigan. That alone was pretty surreal - my little brother is in graduate school - wow! We are so proud of him for grabbing on to something he found out he loves and going after it with such hard work and excitement. And now even more excited that he found someone he loves and is grabbing onto her for life!
Mike and Liz: we know you are going to do so well in whatever you take on - just keep putting the Lord first in EVERYTHING! We're so excited for you!!!!

I was just thinking about how so many of you were "with us" as we were planning Jen's wedding at the time of Dan's accident. We were just looking at photos of her wedding and were amazed at how Dan was sitting up so straight, because he was not able to again for about a year. We know the Lord held him up for that special day. We're excited for another Knudsen wedding in the summer '09.

Dan said...

Hey everybody, I'm gonna post myself soon... The line about the Cubs is untrue. I am in mourning. It's all about the playoffs.

-Dan October 11, 2008 10:56:00 PM CDT

Welcome to Checkinondan!

It's been awhile, hasn't it?
We've struggled to put our thoughts together, so I just wanted to share a few things that have been special.
Although I spent several weeks with Dan when he was at Kennedy Krieger this summer, I didn't do much of his care. When he got home and I started to do his range of motion with him, I was in shock at how much muscle mass he had in his shoulders! His shoulders and upper arms felt so strong! I was so thankful for the therapies in Baltimore and really hope we are some day able to get the equipment he needs to continue the exercising.
Dan recently had a procedure to cut back his toenail to prevent in-grown toenails. He may have some severe spasms for awhile, but then greatly reduced spasms. In-grown toenails have been the cause of most of Dan's spasms. He really is trying to reduce his medication. (Exercising reduces spasms also.) He will have his other toe done soon.
I just asked Dan yesterday how classes were going, and he replied "good." (Same reply as before his accident -- hmmm, real answer or pat answer to appease mom!!! [he usually does well])
I guess my favorite incident was when we took Dan to college. When friends came up to him, welcoming him back, they only saw Dan, not a wheelchair. My heart was enriched.
Thanks for continuing to check for updates. How about if we update sooner next time?!!
(We are not in mourning over our Cubs. There's always next year . . . . ) The truth is they had a great season.
Deuteronomy 31:8 The Lord Himself will go before you. He will be with you; He will not leave you or forget you.

Who Turned out the Lights?

The aftermath of Hurricane Ike brought days of rain [8.5"] around the Chicago area and was also responsible for high winds in southwest Ohio. The winds were responsible for power outages at Cedarville, so Dan was without power Sunday afternoon until early Tuesday.

Dan uses a bit of electricity, including things like his bed's "low air-loss" mattress, so the dorm guys loaned him a futon mattress with extra pillows to prevent pressure sores. Dan's cold, which is clearing up, caused the need to be suctioned more, and so his portable suction machine was used. However, Dan needed his cough assist, so Garrett had to get it from the dorm to the student center, where there was a generator. They also had to recharge cell phones and Dan's chair at the student center, along with the suction machine.

When I called Dan, his concern was that he couldn't check his Fantasy Football standings!! (or watch CUBS games.) Nothing like college students "roughing it" for a few days.

We are SO thankful for the pacer vs. the vent. What an experience that would have been! We were told soon after Dan's accident that after 5 hours of loss of power that a vent patient has to head to somewhere with an alternative form of power.
Thanks again, Dr. Onders. Thank you, Lord, for guiding medical professionals to greater understanding.

Big thanks to Garrett, Dan's PA, who has had a few too many challenges thrown at him, in this 1st month of school. Bill, who had been at CU since August 15th, finally came home last Wednesday. We are both filled with mixed thoughts and emotions, because ... just because we're not close to Dan. We have confidence to know that Dan is in God's watch care, and that many at CU are helping out on a daily basis. Garrett, we are so grateful for your constant concern, and watch care over Dan. Do pray for Garrett's stamina to endure, and for help with scheduling regular time off for him.

A Lift for Emily

This is an answer to prayer, that was passed on to me by Barb Shanahan, mother of Emily Shanahan, a sophomore at CU, who has disabilities like Dan. Here is Emily's website, for those of you who would like to read more about her journey.

"Dear Emily's Achievement Council,

This has to be one of the coolest emails that I have been able to send out yet!

As I look back at my project journal notes, it was May 24, 2006 that Ed Homan (owner of New Visions) met with us at Cedarville University to begin the discussions and draw up plans for a Ceiling Lift in Willet Hall. Even earlier, was on July 8, 2003 when God breathed into me the whole vision of the female; male dorms which would provide a supportive environment to those students living with disabilities! I do have to say that I have felt like Abraham along the way~

I am thrilled today to reveal to you the final plans and amazing final quote for the Ceiling Lift at Willet Hall. To be honest, I am happy and pleased (as is Tom) with Plan B.

The final quote is: $8,101 which leaves a $1,974 overage in budget! This money can now be "seed" money towards the male dorm ceiling lift project. Dan Knudsen is now living on campus at Cedarville U; actually across the street from Emily! We went from not having "enough" money to having seed money for the Male Dorm Ceiling Lift Project. My head is spinning and my heart is hopeful! Hebrews 11:1 Now faith is being sure of what we hope for and certain of what we do not see.

Project Installation Goal Date is Fall Break: October 16, 2008. They are going to quote out Dan's room at the same time, to get an idea of where the lift placement would work for Dan.

Look Forward to Hearing From You,

Barb Shanahan
Emily's CEO (Chief Equipment Officer)"

We are very excited for Emily, and the ceiling lift that will be installed in her dorm room. Only those who have used floor lifts, including CU students who are helping Dan and Emily, can fully appreciate all the added benefits of this ceiling equipment. If you are interested in contributing to Dan's ceiling lift fund, please see "how to" instructions in the side panel.

Dan and friend, going in the back entrance of his dorm.

Correction: Dan & Emily's beds came from Joerns who bought out Sunrise Medical

Cubs game #2

This has been a busy week with classes and homework, and meetings with: a local nursing / PT agency, CU campus medical director, and EMT personal. Dan has also had the guys from his hall in each evening to help get him in bed and for them to get more familiar with the medical aspects of his life.

A few CU nursing students are helping out for a few hours each day, helping out with vitals, medical charting, keeping track and ordering meds and supplies, cleaning trachs and other equipment, physical therapy, etc.

Again we are thankful for "many hands", who sincerely love to help another fellow student. What a servant's heart they display, truly a tribute to them and their parents.

FYI - Dan has a slight cold, causing him to be suctioned multiple times each day for the past few days. More juice, fruit and vitamins are being consumed.

Dan, Garrett and I went to the Chicago Cubs - Cincinnati Reds game, in Cincinnati today. There were more CUBS fans [or so it seemed] than Reds fans, and the game was great, untill the bottom of the 9th. Cubs lost 3-4. :( Regardless, we still had a great time. Yes, that's Dan's flag from his dorm door. GO CUBS GO

Weekend with Dan

I (Debbie) was able to fly to Ohio this past weekend and loved getting to see Dan, especially after the scare last Wednesday. You know how most of us have a big celebration for the Fourth of July? Well, since Cedarville is the "birthplace of Labor Day," they have a big celebration for Labor Day. It took us awhile to grasp that concept, but Bill, Dan, and I drove down to Cincinnati on Sunday, enjoyed a fair-like atmosphere, and watched a spectacular fireworks display. Mike and Liz, Liz's family, and lots of Cedarville friends were there as well.


I am continually amazed at how many people still keep up with this blog. There is actually a whole new following because the parents of my new students, have a tender spot for Dan and delight in hearing about him and praying for him. I am in awe of their support and concern for me.

My class verse this year: "In Christ are hidden all the treasures of wisdom and knowledge." Let's make Christ our passion -- we'll be amazed at the understanding He gives us for all of life. That's where we want to live!

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.

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.

<<>>

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.

Faith

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.

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.

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?

GO CUBS GO

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.

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: checkinondan@gmail.com 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!!

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.

Settling In

Dan has now been home just over a week. You can't believe how wonderful this new house is for Dan. He is able to go into every single room and has abundant room in the open kitchen/family room area. Dan had never seen the house until last weekend, and he came in and was able to wheel around the entire kitchen island and move freely about the furniture. It may seem like a little thing to most of us, but having enough room to navigate and not be "stuck" in one spot enables a wheelchair-bound person to feel more "normal." We are greatly blessed. Thank you again Greg and Remington Builders. Most of all, thanks be to our amazing God who provides.

On the Road Again

But, we are not going directly home. We traveled to Cleveland Thursday afternoon, without much incident until we came upon a 5 mile backup, 2 hour delay just south of Pittsburg, PN. Arrrrg! While most people turned off their cars, got out and walked around, Dan needed to stay in the air conditioned van. We are getting good at doing most medical or physical procedures, or eating while in the van.

Thursday was Dan's release date from Kennedy Kreiger Institute. Having been there for 8 weeks, he, we, are ready to go home. [Another Post for another slow week]




Friday we saw Dan's pacer doctor, Ray Onders at Case University Hospital. This was a 10 month check up since the pacer was installed. Incidentally, the DPS has finally received approved by the FDA. A new study for those under 18 will probably be started very soon.

We celebrated 8 weeks at KKI, Garrett's very fast 2 weeks of initial training [he's really good] by going to one of those Brasil steak places. Since we had really not eaten since breakfast, it was delicious. We all stuffed ourselves.


Saturday Dan will be near Cleveland, attending the wedding of a very good CU [& OPE] friends Bobby '08 & Nikki '08. After the ceremony, Dan got to talk with many Cedarville & OPE graduates.

We are driving HOME now. :D

Thanks for your continued prayers, for God's watch care over our travels.

Jordan got married !

There are always new defining moments in the lives of your kids. The first tooth, riding a bike, starting school, learning how to drive, going off to college, GETTING MARRIED. So I [Bill] felt a lot older because one of Dan's & Mike's best friends, Jordan, got married this past weekend in PA. [Jordan, Dan, Mike & Adam >]



Dan and Mike were both groomsmen, along with Adam [the 4th musketeer], Jordan's brothers Josh & Jeremy, and 2 other college friends. Jordan and Jana were so helpful and concerned the past few months to make sure Dan's quad status would be
accommodated for the ceremony and reception hall. Thanks.

The wedding ceremony went off without a problem, and we were off to the reception. Sometimes the best plans do get foiled. So the sizable church had one of those stair glide lifts to get to the lower level. We have never been on one of those, but life with Dan is an adventure. Dan rolls on, arms come down around the chair, the ends go up, a lady on some speaker above starts repeating "the lift chair is in use", and so down we creep. Rounding one corner, toward the second ... everything [except the repeating voice] STOPPED. The guy helping us to operate it could only get the lift to go up. So we went up a few stairs, tried to go back down, but no go. We could only go up. No problem. We'll just start over from the top.

We got to the top, Dan rolled back off, the platform folded up, and the system [and finally repeating voice] shut down. Zero, zilch, nada. OH NO, we broke the lift. The church maintenance guy drove over, but confirmed that for some reason it was not going to work. Well, I had Garrett go get some food, and I was trying to not take the whole incident too personally for Dan. I thought we could eat and head back a bit early. The father of the groom and friend, Dan, came up and reported that one side of the church, only had 13 cement steps direct from the parking lot to the reception area.

I explained that Dan was not the problem, it was his 350# chair that was. We ate, heard some intros of the wedding party going on, and I quipped something stupid like, "I guess these things will happen in your life, Dan". When I thought we were ready to depart, the 6 groomsmen and the bride's brother [big military guy] came up the stair well and stated "WE'RE READY TO CARRY DAN DOWN". I tried to explain again about the chair weight and Dan, but they didn't buy it. They wanted Dan to be with them downstairs.

What went on in the next 20 minutes was exactly like the NT story in Mark 2: 3) Some men came, bringing to him a paralytic, carried by four of them. 4) Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus and, after digging through it, lowered the mat the paralyzed man was lying on.

Through brainstorming, we transferred Dan to a small plain wheelchair that they found, then 6 guys lifted and carried Dan's power chair down the 13 stairs. They came back up and 5 guys, lifted Dan [while Garrett was holding Dan's head up] and proceeded down the stairs. Another transfer back into the power chair, lots of straighting of tuxes and wiping brows, and the entourage proceeded into the reception hall.

Yes, it was a defining moment in time, but not because one of the 4 best buds got married, but that many friends did not let a handicap or a failed lift, keep one of them from enjoying life.

Thanks, BIG THANKS, guys for loving a brother.

Meet Garrett, Dan's Personal Assistant

Boy, is this a big answer to prayer folks.

We've known for some time that Dan needs a full time personal assistant for him to attend college. Dan's injury level is such that he really can never be left alone, or too far out of earshot of us, a nurse, a friend, etc.

We have known Garrett's family for many years via church and AWANA. High school and college years distance many grade school friends, but last summer when we needed relief help at RIC, Garrett and his mom Sue [a nurse], drove an hour each way to help us out. Dan was not into many visitors during those days, but he did ask Garrett about his latest missions trip to India and the missions courses he was taking at a college out west.

Scroll ahead to this past January '08, when the HBC college group paid a visit to Dan. There was Garrett, who called us a few days later, expressing an interest in helping Dan get to some of the college studies and gatherings. We asked Dan, he said sure, and Garrett started dropping by a few hours each week, to learn things about Dan's care.

It was during one of these visits that Dan asked Garrett if he would be interested and pray about assisting him back to Cedarville U. in the fall. Garrett prayed about it, talked it over with his parents, and told Dan the good news on his next visit. Of course, we were ecstatic for Garrett and for Dan and his being one step closer to returning to college.

Garrett flew to Baltimore this past Saturday to be with Dan during Dan's last few weeks at KKI. Garrett will learn how to operate the e-stim device that is now a daily part of Dan's therapies. He will also learn everything he can about Dan's daily care.

At CU, Garrett will have a room of his own, in the same suite of rooms as Dan. He will be in charge of Dan's daily care schedule, and fill in for any gaps in the help schedule. He will be our eyes and ears as Dan transitions to being in charge of his own personal care.

We still plan on having nurses or CNA's [from the Cedarville area] come in and assist with Dan's daily care routine. Dan will also rely on fellow students for class helps and other school related care.

Please pray for Garrett, for his physical, mental and spiritual strength, especially these next few weeks, as he has much to take in about Dan's care. Pray that both of them continue to bond together, as they will be in close quarters 24/7.

Please give a big 'checkinondan' welcome to Garrett Boyer.

Good News

Dan does not have pneumonia! (most likely) Yesterday evening we were talking to one of the doctors here at KKI, and he said he wasn't convinced it was pneumonia, but was probably a mucous plug. (Whereas we can easily cough up and sneeze, Dan cannot.) After much vigorous suctioning, using the cough assist every few hours, and good rest, Dan is already feeling much better. Dan really wanted to run to the mall this afternoon, but the medical team was not quite comfortable with that yet. (understandably) Dan is up in his chair today and attending therapy. He continues to have such a great spirit.

Thank you for praying for Dan.

Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5,6

DAN HAS PNEUMONIA

Deb just got in Baltimore Sunday afternoon, after a 5 hour flight delay, and said Dan seemed very congested. [He has had colds before, which means lots of suctioning and trach changes.].

She got a call around 11:30 pm, that KKI respiratory felt it would be good for him to have a c-scan to check for a pulmonary embolism. They went across the street to Johns Hopkins ER last night from 11:30 pm to about 8 am. where they sat in a corner most of the time waiting for doctors to see him. [it's a busy, inner city ER, with 5-6 ambulances in dock at all times.]

He did not have any blood clots, but he was diagnosed with pneumonia. He is having difficulty breathing, and has gone on the vent as I type this. He just feels extreme shortness of breath, so this may help him to feel more comfortable, and so respiratory can add vaporizing treatments also.

Keep him in your prayers. We'll try to update ASAP.

The Final Move

Well folks, not sure why there has not been a big interest in blogging about a new new house .... but ours is finally done.


What was started last September with Remington Homes, a local Chicago home builder, was finally delivered to us last Friday. Greg RH V.P., a member of Harvest Bible Chapel, and all around nice guy, saw this as a labor of love, to help our family. This was the first builder we met who had actually made many of the modifications Dan needed in other homes. Big thanks to Dave, the foreman, for many hours of attending to our modifications and changes.

We took one of their ranch floor plans, and widened hallways, added 2' to Dan's bedroom, took out dining room pillars that would be somewhat in the way, deleted an extra door off the garage [Dan's main access point] and modified the kitchen island to accommodate Dan's chair. Oh, the hardwood floors. After working on a carpet floor here at the condo, we knew without a doubt that carpet was difficult for all of us to operate on.

This next Monday, [fingers crossed that the floors will be dry by then] we hope to make the move with all of our basic living stuff, from the condo to the new house. [The 2 PODS will be delivered and unpacked the following week.]

IF any of you brave souls have a few hours on Monday or anytime next week, please send an email to checkinondan@gmail.com with "moving help" in the subject line. We'll start at 9:00 am and work till ?

We appreciate how so many of you helped last time, and made quick work of the 1st move. Our new address is in the side info bar.

Happy Birthday Dan & Mike

Happy Birthday Dan & Mike

22 years of giving us incredible fun, much laughter, too many celebrations and sporting events to mention, countless blessings, and making raising twins . . . seem quite easy for us. (OK, there were a few times . . .!)




Mike, you have a great new future at WMU working on your master's degree. Those high school kids where you'll be working this year are really going to look up to you and see your leadership and your Godly wisdom. You're making wise choices, and we're excited to see where the Lord directs you.




Dan, you have always enjoyed persuading others to agree with your opinion. Now you have such a wide platform to speak and give testimony for God's grace in your life. We know that you are pressing forward and continuing life, and despite a major set back, you are not letting that injure your spirit. You still make us all laugh.

Enjoy this next year, as both of you are on the right paths of life.

We Love You, and are very proud of both of you guys,
Dad & Mom

Helpful Info

I'm back home, and Bill is in Baltimore. I wanted to share with you the significance of the photos from the June 18 post. The cycling video shows Dan in his warm up stage where the motor is doing the work. After the 10-minute warm-up, the electrodes attached to Dan's muscles kick in, and soon it is only Dan doing the cycling, not the machine. This is important because it is no longer passive movement, but active. Dan is building muscle, plus his brain/nerves are trying to relearn that movement.


The sitting up photo is also good news. The goal was for him to hold his head up, using all the muscles in that area, for 4 minutes. He was able to hold position for 7 minutes. Easy for us, quite difficult for C1/C2 SCI patient.

Following is a very basic explanation of the Asia scale used to classify spinal cord injury:

American Spinal Injury Association (ASIA) Impairment Scale
A = Complete: No motor or sensory function is preserved in the sacral segments S4-S5.

B = Incomplete: Sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5.

C = Incomplete: Motor function is preserved below the neurological level, and more than half of key muscles below the neurological level have a muscle grade less than 3.

D = Incomplete: Motor function is preserved below the neurological level, and at least half of key muscles below the neurological level have a muscle grade of 3 or more.

E = Normal: motor and sensory function are normal.

New Friend/BMX/June 19-23

Hey everybody, it’s Dan again. I don’t have much time to post, but I wanted to tell you about a friend I recently met in rehab, Stephen Murray. Here are the links for Stephen’s MySpace and family website. You can read about his former extreme BMX sports and his injury on his websites. He works hard at rehab, which inspires me, and he strives to work hard for his family’s sake.
The main reason I write this is that Stephen will be commenting on the AST Dew Tour BMX Dirt Finals in Baltimore, MD. You can watch him on NBC June 19-23 (check your local listings). Stephen has merchandise you can purchase (follow the link on his family website) and in a matter of weeks a pair of Oakleys are coming out in dedication to him. Each purchase helps support Stephen and his family.
Please read his story and continue to pray for his family and recovery. Also watch the games and watch for Stephen.
I’ll be posting more soon when I have some more time.
- Dan

http://www.stephenmurrayfamilyfund.com/
http://www.myspace.com/murraystrong

KKI week 4

Each time I have tried to post, the internet connection here at KKI has been low. I sometimes can't even get to see the most recent photos of grandchildren. :o(

Let me just list for you some of the things going on with Dan.
*Dan has had a series of casts on his legs to correct turned feet.
*He now has removable casts that he will gradually wear several hours a day to keep his feet positioned well.
*He has good hand/arm splints.
*He cycles every day -- one day legs, one day arms.
*He's had x-rays and ultrasounds. (pacer company won't OK an MRI)
*Dan does have a torn rotator cuff -- he's had shoulder pain since his January hospital stay. Recovery will be long since his muscles do not have the strength on their own to hold position.
*Dan loves the food here.
*Sleep is slowly improving.
*We learned that the reason his neck is always sore is because he uses those muscles to augment his breathing to be able to speak longer sentences without a break. He is learning how to work with that.

I read Christopher Reeves' book when I first got here and was amazed at how much recovery he had gotten back. I had no idea that he could lift his fingers, hands, and arms, as well as take steps when he was in the pool. I know it was because of the exercise he did every day. We are learning where to place the electrodes to stimulate Dan's muscles and will work with him the same way when he gets home.

Dan and I went to church with Jeff and Jen Sunday and then out to eat.

By the way, Dan is not Asia A, complete, but Asia B, incomplete! (The Asia scale is used in "spinal cord injury world.")

Hard Work

Mom reporting from Baltimore!
This place is wonderful! Dan has therapy from 9 in the morning until 5 in the evening, with only a 2 hour break for lunch. Even during the break, a massage therapist or other therapist or staff person comes in for a short session or discussion. You can't believe how hard Dan works, keeping an amazing attitude the whole time. I'm worn out, and all I do is watch!

Dan is taking an on-line course as well, so his evenings are spent writing papers for his philosophy class. He is busy! And of course, the televised Cubs games are always on.

I'll write more soon, but Dan needs the computer for his class.
Thanks for praying. (He is still not sleeping well -- even after his workout.)

6 months of Pacing with the DPS

Hey Hey, Dan has been pacing with his
Synapse - Diaphragm Pacing Stimulation (DPS)
for 6 months non stop.
AND the CUBS are in first place again. Life is good for Dan.

Dan and all of us who care for him can never say enough good things about the freedom and better quality of life without those dreaded ventilator tubes. Thanks Dr. Onders for not giving up on this "experimental device".

Ben, a college buddy, sets up Dan's Jouse for his computer


Mike came home Tuesday from Kennedy Krieger Institute KKI, even brought some photos back, but his photo card disappeared. It might have something to do with the fact that we are in the midst of packing up AGAIN for another move at the end of the month.

Deb is headed out to KKI Saturday 7th, to be with Dan for the next 10 days. She is not used to being in strange surroundings by herself. We recently got accepted into Ronald McD0nald of Baltimore housing. Is only $15 a day, [a fraction of what we were paying] and includes a dinner meal. God always provides for us.

Psalm 36:7
How precious is your unfailing love, O God!All humanity finds shelter in the shadow of your wings.

Dan continues to do well with his new therapies, and each day brings new challenges, such as putting him on his stomach. Sound easy, but it involves seldom used movements, and his breathing is a bit more difficult. BUT the benefits of a back massage or chiropractic treatment, or a back rub, etc. is priceless for a quad.

Dan has regularly been able to be on the "cycling machine", for a full half hour and not run out of energy. He now has a 3rd pacer, set at 18 breaths per minute [BPM] to help with the increased need for air and oxygen. It's just like you and I doing a run, or cycle ride.
Get your heart rate going folks.

His doctor called on Friday, explaining that Dan was on an IV medication drip, as he has another UTI. We are going to try another vitamin on him, more citrus and lots of water. Pray that this clears up.

^Messing around with Steve, another college buddy & honory member of our family. Gotta love the pizza box behind Dan.

Easter '06 - Steve colors easter eggs for the first time in his life [not a Trinidad tradition], and everyone gets beat by Grandma K in a game of Chinese Checkers.

KKI Week 2

Dan has completed his 2nd week of intensive exercises and therapies at Kennedy Krieger Institute [KKI] in Baltimore, MD.

Sunday Mike flew in town to stay with Dan during this week #2. Jen and Jeff joined us, as we went down to the Baltimore Harbor, which has old ships, shopping and ESPN Zone. We played arcade games, while Dan got a good laugh at the old people trying to race cars. Jen wrote a few notes about it on her blog. Eating out with a wheelchair bound person takes some effort at times, like convincing the hostess that a narrow table down a crowded aisle, was not good for Dan as he could not see any of the TV screens. It's just something that we're getting used to when going out. "Prepare the way first"

After lunch, which included watching the Cubs game and the Indy 500, we did some shopping, and Dan picked up some clothes for his extended stay.

Extended stay you said? Yes, we were a bit surprised to have Dan's stay increased from 4 weeks to 8 weeks, which we learned at the first week's "steering committee" meeting. They include the 10 departments that are involved in Dan's care and therapies at KKI. Everything in Dan's life is on the table for review and revising, i.e. internal issues, therapies, medications, exercising, daily care, respiratory, eating, sleeping, etc.

Dan's therapies increased this week with the tilt table, which increases his tolerance for being upright at a 90* angle. The heart rate and blood pressure go up with each increase of 10*, the PT's wait until all goes back down to normal, and increase the bed another 10*

Other medical notes for Dan's nurses and care givers back home. His trach has been reduced to a #4 Shiley. His pacer breaths per minute [bpm] is up to 15 for everyday use, and 18 for exercise. His toes about the same, his spasms under control, and his sleep a bit better this week, getting about 4-5 hours of uninterrupted sleep. He had a 4 injection of Botox, [he felt the needles] to his left leg, to relax the muscles, thus helping the foot to stay flat instead of curving in.

The video below is Dan moving his arm with e-stim help, ever so slight, and it's tiring work on his part, but he is glad for the progress.



Dan also started 2 online classes this week. He says it's harder and different than before his accident. He needs the most help with turning pages. arrrrrgh to thick text books.

. Keep us all in your prayers, as the next 6 weeks hold, the closing on our home, modifications for Dan, moving, many trips back and forth to KKI, a wedding or 2 that Mike and Dan are involved in ...

That's all for now