Spring Semester & Nurse Katy

Despite "no funding" from IL or OH for Dan's caregiver, Garrett, or others who care for him on a daily basis, Dan is determined to finish his education at Cedarville U. We seem to have made in roads to IL state officials, but some laws prevent caregiver funds from crossing state lines, despite the fact that it’s all federal money. Go figure.

Bill accompanied Dan and Garrett back to school last week to help with new semester "stuff," including grocery shopping [for inclemate weather days], insurance phone calls for PT and OT, the run up to Dr. Onders in Cleveland [see last post], helping with the "checkinondan" caregiver schedules, giving Garrett time off, AND also checking out a few things for Mike and Liz's wedding in July.

His one-week stay to take care of "stuff" turned into 2 weeks because of a 3-day search with multiple phone calls to get the wheelchair repaired, ordering a new hydraulic for the van ramp, a visit and more paper work for 2 OH aid offices, while still fielding business calls and issues. Bill will spend 1 week each month at CU, like last.

Dan has people from Grace Church in Cedarville who bring lunch 2 times a week, but is still in need of care helpers in other areas:

· 2 student nurses for alternating weekend care

· someone who will take care of Dan's scheduling

· full day of care givers on Thursdays so Garrett can have a day off

· a nurse or CNA in the Cedarville area, for volunteer help on Thursday mornings

"Baby, It's Cold Outside"

Most of the mid west has been hit with sub zero temperatures and many schools have been closed . . . but not universities, including Cedarville. So students just bundle up and make their way to class. Getting Dan ready to go out can take some time with getting on gloves, a scarf, a hat, 2-3 blankets - well tucked in of course.

Dan has a nurse, Katy S., [CU class of '69], who volunteers 4 days a week, 2 hours each day, to help Garrett get Dan ready for class. Katy, former nurse at CU clinic, missionary, and volunteer for many community organizations, is also an avid sewer.

She has made sewing repairs, for padding on Dan's chair, altered his pants longer, and recently whipped up a pair of "winter blanket pants" [see top photo] and mittens for Dan. It’s a blanket that looks and acts like a pair of breakaway pants, which are easy to put on and take off.

"Oh, it didn't take any time to sew, I just had to figure out how to make them first" she laughs.

Dan, along with us are all very appreciative of Katy, her experiences of a full and interesting life that always entertain, and her willingness to be at Dan's side four morning at 7 am. God Bless You, Katy.

Alex, "Youngest Person to Get 'Christopher Reeve' Breathing Device"

Dan was there.
I am so excited, I can hardly stand it. Bill just called from the van. He and Dan drove to Cleveland today to have Dr. Onders (pacer Dr.) help install a less evasive trach cap, and they met Alex M., the first child to have the pacer surgery. Bill said there were news crews galore because of Alex! Dr. Onders said Alex had good results and should be able to be weaned from his vent of 4 years. Yeah!! Bill will write more, but I had to tell someone.

Bill here, I will try to provide the newspaper links, as they become available, and if you see any, email us the links. Fox already has this posted. The local Cleveland newspapers, [available online] will have more detail than the national news sources.

It was cool to finally meet Alex and Beth [who comments on here often]. Alex was estatic to see Dan and peppered him with questions. Dan surprised him by turning off his pacer and doing his neck muscle breathing, to which Alex yelled "MOM, he turned off his pacer". We heard that Alex's diaphragm responded excellently after the hour plus procedure.

Beth and Kevin were blown away to see ALL of the major news networks and local papers there. Dan's name [we shamelessly plugged Cedarville U too] might show up in a few news sources.

I tried to install a new trach cap on Thursday, which had been recommended by Dr. Onders, and after the unsuccessful install [& a bit of blood], I called Cleveland for help, Mary Jo [Dr Onders assistant] said, "Come on up". Which we did. It ended up being a long day, three hours up there, six hours back. [thanks to a mid-west snow storm], BUT we were glad to be a part of history in the making. PACE! ALEX PACE!

Bill, Dan, Beth [Alex Mom], Alex, Kevin [Alex Dad]


cleveland.com
Akron Beacon Journal
Cleveland Fox News
Cleveland.com photos

Happy One Year of Pacing

This is pretty cool. On the 1st year anniversary of Dan gaining freedom from the ventilator, [see the count up clock on the side], we want to pass on exciting information of a young Ohio guy, Alex M., who will be the first child implanted with the same DPS. We saw so many youngsters at Hopkins this past summer, and at other rehab hospitals, who will benefit from this wonderful device.

Although we have never met in person, we came to know this family via email/phone shortly after Dan's accident, and they have been a constant source of prayer and encouragement. We are in awe of Beth, a mom who is home with 4 young children, the oldest being a C1&2 quad. It makes our life seem pretty .... easy.

We do remember well the excitement, the testing, the phrentic nerve working, and the apprehension. Please keep Alex, Kevin & Beth in your prayers Thursday; also Dr. Onders, Mary Jo, Jennifer, and others who will be on the medical implant team.
Following is an email from Alex's family:

Time to get excited!!! This coming Thursday, January 8th, 2009, Alex [age 10] will be going to Cleveland, Ohio to become the first child implanted with the diaphragm pacing system by Dr. Raymond Onders . Here is a link to a one minute video showing the system, how it works, and Dr. Onders himself.

The procedure is outpatient, minor surgery, and we are told that Alex should be eating sometime later that same day. He may stay one night in the hospital just for observation. If that happens, he would stay in ICU just because that it is the only place in the hospital that holds home vents [Christopher Reeves was in bed #1, Dan was in #20]. He wants to eat hospital food too:). You can not believe how difficult and expensive it is just to get a room that we will fit in! We have not traveled since the accident [5 yrs ago] so this is ALL new territory.If you want to send prayers or good wishes please do so through email as this week will be hectic. There is also a ramp project going on at our house and has been for the past two weeks.
We will let everyone knows what happens probably on the prayforalex.com site.

Thanks for praying and your support. This is huge!! After the surgery there will be a weaning period to get Alex of the vent. The average weaning time is seven weeks. Some individuals have taken longer [Dan took 4 mths] and some less. Alex will still be getting breathing support but it will be much more natural. The benefits are so numerous. There will be a lot of new things to learn. This is exciting but overwhelming at the same time. We will keep you all posted.
Beth

P.S. Dan, Garrett & Bill are headed back to Cedarville to start a new semester. Funding for school is 80% done, but there is no funding for Garrett yet, or other care givers that Dan needs 24/7/365. Dan is not letting any of this denial of care aid (because of "crossing state lines" nonsense) stop him from completing his degree. We will post more about Dan's exact financial needs at a later time.

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.