Tuesday, December 25, 2007

Merry Christmas !!!


"Merry Christmas to all of our "checkinondan" family
both near and far!!!"



From [l-r] Mike, Debbie & Gabri, Dan, Bill & Addy, Emily, Matt [Jen & Jeff too!]


Sorry about the comments not posting.
[Bill shouldn't touch the settings anymore]
Dan will have medical updates later this week.

Saturday, December 15, 2007

Caleb & calcium

l-r Caleb, Mark, Al, Reuben & James

A Holiday Thank You to Caleb, CU '03, OPE bro, and part-time Phys Ed teacher for Chicago International Academy, a ministry of Armitage Church in Chicago, for stopping by with his college men's group (Mark, Al, Reuben, James) to visit Dan this past week. The visit was greatly appreciated by Dan. The guys were encouraged by Dan's desire to get back to Cedarville and to continue on toward his law degree. Another tray of Rice Krispies Treats® should get them back here again. Thanks, and bring the guitar next time guys :)


Last Friday, late afternoon, Dan had blood work done in Cleveland because we thought his calcium levels were elevated. He had high calcium levels at the end of our RIC stay, and this is what was said back in the August post "preparing to go home".
  • he has had elevated calcium level from calcium loss out of of the bones; this problem is to be expected for a SCI person.
    • tests and two special flushing have been done with little results,
    • thus he had a 4 hour "infusion" of Pamipronate to stop the spill of calcium into his blood. - this is a serious procedure with the heart being monitored too.
High calcium levels, a condition related to Spinal Cord Injury [SCI] people, causes increased spasms [just a touch to his arm sets his entire body shaking] and a severe stomach ache after eating.

Dr. Onders called us early Saturday morning concerned with the results. Calcium was at 12.7 [high]. He wanted Dan to drink lots of fluids and ordered another complete series of blood work done. Monday, Trish, a nurse who has been helping out, and her sister Deb, were able to take another few vials blood at home, and we ran them over to the urgent care.

Waiting, Waiting, [keep drinking water, Dan] Waiting.

Wednesday Dan saw an internist doctor, Dr. Win, who got the blood results back from the lab. Calcium was down to 11.2 [8-10 is normal]. YES! He let us know that more body movement and "lots of fluids" can keep this in check, but we always need to watch for it to come back. There's always some issue going on around here with Dan's care. But that's okay.

Dan has needed to see an internal medicine doctor for sometime. We have been turned down by a few that were recommended, as SCI patients have LOADS of issues. Our SCI doctor has refused to fill some medications telling us "it's the nature of SCI injuries, I am not an internist, nothing more I can do for him".

Dr. Win came about because in doing research for a new SCI doctor, we came across his wife Dr. Yin, called for information, and her office recommended her husband. We have already benefited from this this husband/wife combination. We DO have a visit with Dr. Yin this next week.

We trust all of you are enjoying the holiday season. Despite many changes, we are grateful for life and the future hope in Christ.

Wednesday, December 12, 2007

roomie visit

A bit tired from the Cleveland fast trip, Dan got a surprise visit from his 06-07 dorm mate, OPE bro, Mexico missions trip and all around great guy Andrew, who was in IL for a post college job interview. [Remember those anxious days of "job search" after college? yikes]

It is always a treat for parents to hear their kids & college friends joke about all the "non-educational" events, that happen during the college years . . . AND they still manage to earn those diplomas. hmmm

Many seniors get side tracked during these last semesters of their college careers.Keep those '08 graduates that you know in your prayers.

Thank you to all Dan's peers, but especially the guys, who have visited him since his accident, Adam, Andrew, Bobby, Brian, Griffin, Jeremy, John, Jordan, Mark, to name a few. [I am forgetting a few... just add your name in the comments] You DO NOT know how Dan's spirits are uplifted when he can talk to his buddies. Thank You, Thank You.

Dan's Room

Friday, December 7, 2007

Cleveland quick visit

Dan, Dad and Aunt Mary Kay are in Cleveland right now at University Hospitals Case Medical Center. This for a 4 month checkup with Dr. Ray Onders of Synapse Biomedical aka "superman's pacer doctor".

Dan is getting a few of his pacer wires "re-routed" and Dad gets to assist this time. ["scalpel please, nurse Bill"] This procedure is with local anesthetics and we expect to be back on the road tonight back to Chicago.

The trip here was really uneventful, with none of the suctioning or emergency stops like the 1st trip in August.

Sometimes you have to look at where you have been to see that life is better in the present.

UPDATE:

Dan went for some blood work
[when at a medical facility, take advantage of all that is there],
then we went down to the cafeteria and ate dinner at the hospital,
rather than trying to do a restaurant. Got back at 1 am.
Thank you to Aunt Mary Kay, for her help with the driving.
No pain or complications with Dan.
Thanks for your prayers.

Monday, December 3, 2007

Giving Dan a Lift

We have needed a lift for Dan since . . . August. A friend of ours, Emily at Silverfox Limo, had a connection with a health care facility, and thought they might be able to help obtain a used lift for Dan.

Well, as blessings do come in many forms, Inspiration Ministries of Walworth, WI came to the rescue and gave Dan, yes, GAVE as in FREE, an Invacare 450 Battery-Powered Hydraulic Lift.
WOO HOO!!!
Th
anks to the Schnake's, who help manage the facility, for hearing about and helping get us this much needed piece of equipment. Two of their children are graduates of CU . . . there always seems to be a Cedarville U. connection. :)
As with most used things, there was a bit of tweeking in the past months. The battery needed replacing [which was found and ordered] and the lift sling did not work properly. When lifted, Dan's body folded in half and he slid right out of the sling.
NOT GOOD.
A few weeks later we were at the RIC and took a look at and tried almost every type of available slings. Bingo! We found one, ordered it [no waiting here for Medicare or insurance, to help save our backs] AND it's all working great.

Previously Bill was the only one who could get Dan out of bed, but now Deb, family, nurses and friends are able to use the lift. What a great blessing we wanted to pass on to all of you.

Thanks Inspiration Ministries, Schnake's, & Emily. [Jane too.]

Sunday, November 25, 2007

Special Thank-Yous

We know that many people have given anonymously. Thank you 1000 times over. Financial is only one way of helping Dan, and we don't think about or keep track of who helps in that way. Everyone helps as they are able to, in any way they choose. Some organizations are not able to do this anonymously, and we understand both ways of giving. THAT BEING SAID . . .

Thanks to the Tri-Cities Mothers of Twins & Triplets Club [TCMOTTC]. YES, Debbie was a member when Mike & Dan were young. All mothers of twins need everything in their arsenals [support groups] to deal with twins. They heard about Dan's situation, and generously donated a portion of the fall 2007 sale to Dan's needs. BIG Thank you TCMOTTC moms , with fond memories of past ... ahh ... 20+ years ago.
[Anyone with 4 kids under 4 yrs. old like us? LOL]

Thank you to students, teachers, staff & parents of Puebla Christian School, Puebla, Mexico, who dug deep and raised a few thousand dollars by eating PB&J sandwiches and giving their hot lunch money, hosting a hot dog day, a movie night, and a soccer game event, etc. Dare I say that many are MK's with limited funds.
Many of these students were at the camp where Dan aka "Captain Scratch" was injured this past March. He touched many of their lives before and still today after his accident. Thanks to school administrator Joe Blakley (CU '02 and OPE brother) for heading this up.
PCS students, please know that we still have the Mexican flag hanging in Dan's room. It is a constant reminder of our special "south of the border" friends. Separated by distance, but close by love. We see on your website that you also have financial needs. May God multiply your gifts of love to Dan over and over again.

Most of the money that has come in recently is being put aside in a special fund to make the new home handicap accessible. Infrared controlled lighting, shades [his room only], ventilator alarms and lights, door openers, that can be controlled by a Environmental Control Unit [ECU] on Dan's power chair. Additional modifications are a bathroom with a roll-in shower, a sink in Dan's room, wood floors for better wheelchair mobility, 2-way voice monitors, ventilator alarms, ramps outside the house, and the list goes on.

On one of those tough nights recently, Dan lamented that he just want to "use his hands". He sees them just lying at his side, says they are "flat and funny looking". How do you respond to that?
While only a break-through in regeneration of the spinal cord nerves would allow Dan to use his hands once more, it is important to give him as much "hand" usage via current technology, thus allowing him to do normal things on his own. We continue to understand that SCI injuries are more about mental challenges than the physical.


Thanks for your prayers, and your help in whatever form it comes to us.
YOU overwhelm us more than you can ever know.
God Bless !!!

Thanksgiving Weekend

We were blessed to spend Thanksgiving with family and friends. It was especially good to have Mike in for a couple of days. (We were introduced to "Guitar Hero"!) Our weekend was very relaxing, which was much needed!

< Mike, Adam, Jordan & Dan


We continually run into someone who lets us know that they faithfully check this site each day. Thank you for your support for our family. We are thankful for all of you.

Megan, Rachel, Emma & Kristi

Thank you to Dan's friends who spent time with him this weekend. Thank you for caring and for praying for us. Dan is going through a hard time right now and needs you more than ever.

We're glad our God is bigger than our biggest struggle. Keep him, keep us in your prayers.



Tuesday, November 13, 2007

8th month recap

where did last week go? where did the past 8 months go?

We were on a roll. Dan was up using his power chair, on his computer and working on pacing while in the chair [a bit more difficult]. He was scheduled to see 2 new doctors, a Urologist, and a Pulmonologist, and also had some minor surgery for an SUPRAPUBIC CATHETER on Thursday. [I'll let you parents explain that one]

BUT ...
Nothing is minor around here. Surgery went long, recovery longer, we took him home, but he should have stayed the night at the hospital. Thus, Dan has been feeling lousy and out of commission since last Thursday. There have been a few other related complications too, so the Pulmonologist is rescheduled for this Friday.

We
keep hearing from doctors and quad people that we meet that the first year is the hardest. Dan seems to be experiencing all of that "hard year" right now. Physically, mentally, emotionally and spiritually. Some European countries would keep a patient with a severe injury like Dan in the hospitals and rehabilitation clinics for a full year until all of these issues are worked out. Not a bad idea in our book. It just hits all at once, all the time.

We know there is a "commencement" of sorts, where most of these doctors, surgeries, sores, severe headaches, general discomfort, lack of appetite, listlessness, drastic swings in body temperatures [97.1 to 102.6 in a few hours] will be past Dan and us. Bring it on, sooner than later.

Thanks
to those who continue to help Dan with meals, feeding & exercising him, general care for Dan, cards, emails, comments, house cleaning, financially, phone calls that show you care ["are you okay? haven't seen a blog since last week"], AND prayers. We know that Dan is on your minds more that we will ever know. Thanks for letting us share, but more importantly for how you have held us up and loved us day to day these past 8 months.


But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
Isaiah 40:31

Monday, November 5, 2007

Doctor Week

Dan continues to make the round to new doctors that might be needed in the future for his care. Monday was a visit to his Urologist, and Friday he will see a Pulmonologist. Ventilator and lung issues, including pneumonia, can be life-threatening to quads.

Monday's visit has led to a second visit this Thursday, which includes a minor outpatient surgery to clear up an infection.

We are thankful for the expertise of these doctors as some medical issues leave us feeling a bit inadequate.

After a few weeks of great pacing, Dan's title volume has been lack-luster this past week, staying at 500 or lower. 2 steps forward 5 backward. Back to the drawing boards with his diaphragm pacing doctor.

Thanks to 2 nurses who have been helping us on a regular basis and the prospect of a few more. Their weekly care and help with Dan's ongoing issues is invaluable to Dan's long well-being.

Thanks to you who keep Dan and us in our prayers. All of us, Dan included, have had a few weeks of up and down emotions with regards to his future plans, health and care.



A photo from our weekly Thursday TV nights .... "The Office".

Some younger ones only come for the snacks from grandpa.

Can you identify that OPE guy in the background?
Mark Hershey is right. Now attending Trinity Inter and a frequent guest.

Monday, October 29, 2007

pacing and a whole lot more

Well, we are not keeping track of EVERY new record that Dan sets, but this was a good pacing week. Dan paced non-stop from Tuesday till Saturday.

Mind you he was also not out of his chair much, but pacing continues to be good, AND he is able to speak by using his Passy Muir Valve [a special cap] many times during the day. This is a result of going with a new "cuffless" trach the other week.

So, while a few weeks ago he could barely get in the chair without immediately going on the vent, he now transfers with no tubes, [so much easier for all], making a few adjustments like put feet up and a chair tilted back to prevent him from blacking out, and thus the pacing continues.

Today he was also speaking for some time in his chair while pacing. We hope to be downsizing his Shiley #8 trach soon to a Shiley #6. This should decrease the amount of blockage the trach causes in the air ways.

Good progress by Dan. God is Good


Wednesday, October 24, 2007

P A C E R U P D A T E

Monday we took a quick trip into Chicago to see Dan's Superman doctor. [yes, Christopher Reeves was #3 for the pacer, Dan # 38] Dr. Ray Onders of Synapse Biomedical was in town to speak at a pulmonary conference for doctors. This saved us a trip to Cleveland for Dan's 2-month pacer check up.

One thing that needed to be changed is the TYPE of trach that Dan has had since his injury. At the hospital they put in a "Cuffed trach" [see page 75] which is usually up or inflated [at hospitals] for when he sleeps, thus he cannot speak. At the Rehab, they taught us how to put it down or deflate the cuff when he is awake, thus he can speak.

Enter the diaphragm pacer that needs all the airway passage to work properly, and that cuff [up or down] is still in the way. It was suggested by Dr. Onders' assistant that we use a CUFFLESS
trach for better pacer results.
When I, Bill, changed the trach back in August before we left the Rehab, it was a messy deal [you fill in the blanks - it was bloody, hard to pull it out, looking at a hole in Dan's neck, etc - somebody please give me an honorary nursing degree]. Dan took note of that change AND the pain. Dan, like most people, does not like to experience unnecessary pain, so we have put off any trach changes. Monday was different, and we were determined to change the trach.

AND CHANGE WE DID!!!

It was still messy, but the CUFFLESS trach is now in. Dan can pace almost a full day now, but without a cap, the air goes out before reaching his larynx, so no speaking voice. Previously when we capped Dan's trach, his oxygen level went down, his carbon dioxide level went up [that causes most of your sense of a "lack of oxygen pains"] and his title volume tanked [from 600 down to 450]. NOT ANY MORE. The cuffless trach, along with a special cap, is allowing Dan to speak while pacing. The following areas still need to happen, so add this to your prayers.
  • He is able to tolerate having his cap on longer each day.
  • His weaker pacing voice improves.
  • He will be able to drink and eat while pacing with the cap on. [You and I stop breathing to swallow, the pacer breathes 12 times a minute non stop]
  • His pacing while in his wheel chair will improve. [lying in bed is easier to pace]
A school friend of Deb's recently sent us this encouragement from Romans 8:16+17

God's Spirit touches our spirits and confirms who we really are. We know who he is, and we know who we are: Father and children. And we know we are going to get what's coming to us—an unbelievable inheritance! We go through exactly what Christ goes through. If we go through the hard times with him, then we're certainly going to go through the good times with him!
Thanks for your prayers, meals,
helping here with Dan's care on a daily basis
and for the checkinondan this week.

Saturday, October 20, 2007

We're Still Here!

Hope we haven't lost...
...too many dear friends with our lack of posting!

The move was.... very drawn out, and A MOVE. The last few weeks were running up to get things from the condo that we still needed at the old house, missing things that were packed in the PODS, [Does anyone know what box, the black leather booklet that was in the business closet, was packed? It has our passports and car titles in it.] and only living out of 2 rooms in a very empty house. We don't know how people move every few years. Biggest thanks for those who helped out with the 4 different "moves", especially the cleaners.

How's Dan, you say?

Well, things are progressing slowly with him. He hasn't been up much because of his not feeling well. [Another UTI we think] We did make it to church last Sunday with Matt and Emily for Addy and Gabri's baby dedication. That was huge since it was Dan's first time back to a church service since his accident. We even went out to eat and drove past our new house site. But he couldn't wait to get home to rest.

It is always good to see Dan using his computer. Besides checking email, he was investigating online college classes last night. It can be an time consuming process of speaking commands and using the mouth mouse or "Jouse". Also, when he is up, he is able to power himself about in his chair. Those little things are bits of encouragement in this slow process.

Prayer requests:

*Dan has some pressure sores that need healing. He's had these before and they come from any surface that presses again bone areas i.e. his heels, ankles, hips, elbows, palms, shoulder blades, - all at risk. It can happen from his air mattress. The best long term cures have been vitamin E, sheep skin under the points, and constant vigilance of those pressure areas.
*His pacing is good, as he's on it 80% of the time, but it still does not have strong enough air flow to cap his trach or sit up very far. It's the next big step in the pacing process.
*Overall health -- that he would feel strong enough to get up each day and become more independent. -- that he would feel like eating more.

*We need some consistent help with Dan -- a personal assistant/caregiver type person. An RN is not necessary, but this assistant person should be willing to get familiar with some medical care. Exercising, vent and trach care, personal care, attending to his physical needs hour by hour. This is a paid position. [FYI for someone who asked - Dan will sleep well between 11pm and 3 am, but it is his usual routine to wake one of us up 3-6 times per night, between 11 pm and 6 am, for water, suctioning, turning him, etc.]

*We could use someone to help with the mounds of paperwork involved with Dan's care. The daily insurance issues, Medicaid, and the various state agencies, to help with getting what Dan needs for his day to day care. [Dan's bed was recently taken back (insurance issue), and we had to scramble to find a replacement.] There's always some issue going on.

We just want to take these needs to God's people
and trust you to join us in praying for God's perfect provision.

(We have both found ourselves getting to the place where we would rather not see people because they'll ask how we are, and since things are not better, it surely must sound like we are complaining. We WANT to say that all is going well, but that is not reality. We have an extremely heavy load, and our answers are simply fact. We do eagerly await God's provision for our needs, but it can seem like we're here just watching time pass. I, Deb, keep going back to a verse I shared earlier this year: Isaiah 64:4 Neither has the eye seen a God besides Thee, who acts in behalf of the one who waits for Him. Our prayer is that we will continue to trust as we wait for the Lord to bring us relief. He will not give us more than we can bear! THAT He promised!)

Thursday, October 11, 2007

Thanks For The Memories

Tonight is our last night at Old Kirk Road in Geneva, IL



These photos are for our children, relatives, and friends who have gathered here
these past 16 years. Thanks


There has been much practicing going on around here.

Some of it serious ... and entertaining ... some of it just plain fun.






Has hosted not one, but TWO engagement
proposals.










Numerous youth gatherings and bonfires.
[always loved the pile of shoes by the front door.]



Many A Merry Christmas










Easter gatherings and egg hunts.






Fourth of July and Summer Parties.






Watch out! Uncle Brian is in the pool.




Boy, have we had fun!

Wednesday, October 10, 2007

Pacing record

We were greatly blessed by all the Cedarville family who encouraged us this weekend by letting us know how often they check in on Dan. Staff who never even met Dan have closely followed Dan's progress. And we have so many parents of Cedarville students who pray for us -- people we don't know and may never meet this side of heaven. We are incredibly thankful for our CU family.

Dan came home from a fun weekend and started a new pacing marathon. He just completed 48 hours of non-stop pacing, but his pacing is still only when he is in bed or reclining in his chair. And he doesn't feel like he has enough air to cap off his trach yet, so he does not have voice while pacing. We hate the tubes, but we also hate not hearing his voice. When he goes back on the vent for a few minutes, it's great to hear him talk.

Dan has his first doctors appointment, with a spinal cord doctor, this Thursday . Pray for wisdom on the doctor's part -- that he would have understanding of Dan's issues -- especially some pain he continues to have.

Sunday, October 7, 2007

DAN & CU HOMECOMING

Well, what can we say about the festivities at a Cedarville U homecoming?
What a fun weekend Dan had at '07 CU at the Big Top Homecoming.
Too much going in one weekend, i.e. parades, play, sports games, concerts and many class reunions, to take all of it in . . . but here are Dan's highlights.

We got ready and had great intentions of leaving at 9 AM but, the folks who bought our house had their final walk through at 9:15 - delay #1. Then Bill had a few urgent business fires to put out - long delay #2, then we needed to check and recheck that we had all Dan's supplies such as ...


the emergency backpack, suction machine, ventilator [did not take the back up as he could pace in an emergency if needed, cough-a-lator, medical supplies, lots of gloves and suction kits, trach cleaning kits, sper-o-meter for measuring pacing breathing, and the pulse ox for measuring his oxygen level while pacing, and clothes... need clothes, its gonna be hot, forget the sweatshirts, 3 batteries and their chargers, snacks, juices, Gatorade, his meds. uhhh lets go.

It was lunch time, so we did the usual Mc D's, but now it's not too good for Dan to eat in a moving vehicle, so we stopped and ate our lunch - delay #3.

We made great time on the road AND without any medical stops
by Dan; he paced the entire trip, and slept some too. Deb was dropped off at the hotel, while Dan & Bill went to the OPE 15th year meeting that night. That was a great time with fellow OPE alums and students. We didn't get in until midnight.

We all slept in on Saturday morning, and didn't make the parade, :( but did get to meet up with Mike at Cracker Barrel
for brunch.


Dan was one of the attractions under
the OPE reunion tent.


It was encouraging for us to see him interact with class mates;
it almost seemed that he had never left campus.
[l-r] Kyle, Dan and Andrew



Mike, [Dan's twin], Bobby and Dan [again] enjoying the soccer game.

The
Yellow Jackets won. Good times!






2 very cute, and faithful prayer partners,
Kylie & Sara finally get to meet Dan.

Their parents, Jeff & Shelley, & Rachel
are with Deb
in background.






Justin & Bethany, classmates of Dan's




Dan B. '05 [classmate of Matt]
& Mike






the Hudson's,

[missionaries in Puebla, Mexico]
having their own mini family reunion.





We were all worn out, Dan had seen many people this trip, and thus we headed back home. So sorry if we missed you, but Dan is planning another trip to the 'ville soon.

Special thanks to
Pastor Rohm, Brian Nester, Jeff Beste, Dean Gibbs [thanks for the dorm tour], Paul McGrady, the many faculty and students, who stopped to talk and encourage Dan this past weekend. [ohh and to Dr. Bill Brown for the sweet Yellow Jackets t-shirt]


Thanks to all for the live "CHECKINONDAN" this weekend.


Wednesday, October 3, 2007

Heading to the 'Ville

In the midst of packing and moving, we are hoping to travel to Cedarville U this Friday for home coming. The highlights include the annual canoe challenges, the homecoming parade, the soccer game, AND Dan's Theta Tho Epsilon [OPE] organization is having their 15th Anniversary of their founding. A special CU award is going to OPE Founder Paul McGrady for his impact on the lives of students.

We experienced Paul's impact in the first week after Dan's accident. Paul is the senior member for OPE in the Chicago area, and he came to visit our family, encouraged us, [Mike too] and made his "let me help you" known in a big way. He has been consulted since then and is always ready to help Dan. Thanks Paul aka "Glowmer".

We THINK this will be an easier trip than Cleveland, as this is for pleasure and not medical. We THINK we have enough supplies, suction kits, battery power, etc. We THINK that the power chair will make getting around easier. How's that for "positive thinking"? LOL Pray for Dan's stamina and encouragement this weekend.

We KNOW that all of our days and events are in God's hands, and that nothing surprises Him.


Big thanks to those who helped with move #1 - POD storage. "Many hands make light work" as mom would say. [then leave the room for us to finish the task at hand] Thanks to the
  • pre-packers - Sue, Kim, Sherri, Maureen, Diane & crew, Suzy, Mary Kay,
  • same day packers - Jennifer & crew, Suzanne, Danielle, Char, Linda, Kim & crew,
  • room cleaners after the packers - Sue, Kim,
  • pool closers guys - Hank & Luke, [I really WAS going to help you]
  • Mike who made a few last minute repairs on the house,
  • movers - Wayne, Dave, Mike, Tom, Gary, Tim, David, Ed, Tyler, & a few more kids, who worked very hard and packed 2 - 16' pods in a few hours.
  • lunch ladies - Cathy & Maureen [you wouldn't even take any money for the food]
Please let me know by email who I missed, or if I missed your name.

We are taking our "6 month furnishings and clothing" over to the condo
for storage this Thursday starting at 11 am. Move #2.

Dan is still pacing about 20+ hours a day.
Dr. Ray Onders, the pacer doctor is in town for an ALS speaking engagement and will pay Dan a check up visit here at home on Thursday morning.

Saturday, September 29, 2007

pacing marathon

Dan is on a pacing marathon so to speak. It started on Wed night with an overnight of 9 hours. Thursday we were gone all day, but Dan started pacing again at night and continued all the way through Saturday evening. He only stopped pacing each morning for 2-3 hours for a break. He also is drinking and eating while pacing, something that was difficult at first.

Mind you he does not have enough title volume to push the air through his mouth and nose, thus he has his cap off, and is not able to talk while pacing. This is expected to improve over time as his diaphragm continues to get stronger.

Thanks for your continued prayers in this wonderful blessing of "natural breathing" for Dan.

Friday, September 28, 2007

Wheelchair delivery

Dan's sweet wheelchair was delivered to the RIC in Chicago this past Thursday. It was a long day of adjustments and fine tuning, but was so good to see Dan roving up and down the hallways under his own power once again. It is amazing that after not being in a power chair since mid June, Dan knows what to do, and does it well.

Thanks to salesman Mike from Rehab Tech, who went the extra mile to get a major modification done on the spot, so that we could go home with the chair. Susan, RIC head of Therapy was careful with many details to ensure full comfort for Dan.

The chair has a sophisticated environmental control unit [ECU] that lets Dan see what the chair is doing all the time. IE drive mode or idle, him controlling the chair or an assistant from the control unit on the back or the chair. He can tilt the chair backward by himself for a pressure release as needed to avoid sores. He has molded arm rests that support his arms and shoulders. His ventilator is now on a bracket instead of swing loosely. There are too many other features to mention. Ask him for a demo next time you see him.

Shortly we will program his ECU to operate the TV, DVD player, CD & radio. In the future he can control any type of infrared adaptable device such as light, doors, house alarms, etc.

Like he said it's a really sweet set of wheels.

Monday, September 24, 2007

Packing & Moving help needed

Well folks, it's time for us to pack up the rest of our worldly possessions, cause we are outta here on
October 5th.


Where are we going?

Here >>
We have secured a 2 bedroom / 2 bath, handicap accessible, condo in South Elgin, IL called River Crossing. And yes we DID qualify for the 50+ community status. LOL. It was referred to us by Randy & Flo via friends of theirs--the Petersen's of Visiting Angles. The condos usually are for sale... but you know how God works in these matters. We will be living here for the next 6 months, because ....

We have also been talking with a local builder for the past few weeks, and hope to finalize new house plans [handicap modified] this week; 5-6 months from signing to delivery. Details are being saved for a future post.

What is the plan?
All of our stuff is being divided into 2 groups.
  • a. The minimal amount of household items, a few furniture items, & clothing that we need for the next 6 months. We should be able to move into here on Oct 2nd & 3rd and will need people to help move us on those days.
  • b. The "rest of everything else" will be packed into a Pod storage unit until we are able to move into our new home, hopefully in 6 months.
We would like to have the "rest of everything else"
out of our house by this Saturday.

How can you help?
If you have a few hours this week, morning or evening, especially this Saturday we need "many hands" to pack boxes, and others to move those boxes into the modular storage unit. We also need people to help wash and clean rooms as they are emptied, AND if you like to work out doors, there are a few weeds that need to be pulled and light outside yard clean up.

What to do?
Just send us a note with your availability and a phone number. Most replies will happen by email, but if we don't contact you, please try us again.

Misc items for free or sale.
  • 1994 Olds Cutlass Supreme - 78,200 miles, red, runs great, good condition, A/C leaks and does not work. $2100 obo. [Kelly's Blue Book]
  • 5' White Metal & Glass Top Patio table - no chairs - free
  • 16' Round Trampoline - the pad needs replacing. - free
  • 12' x 6' x 6' wooden playground tower. - free
I'm sure this list will grow. Check back often.

Sleeping Prayer for Dan.
I am up posting, but it's really because Dan is having a restless night again. He has been "clicking" for us every 5-10 minutes, his stomach hurts, his neck is very sore, he is having increased spasms and has a slight reddish infection with one of his surgery suture sites [Dr's have been consulted] and is defying any sleep meds he has been given.
Continue to keep him in your prayers.

Thursday, September 20, 2007

home from hospital

FYI update, [even to immediate family]

Dan was released from the hospital yesterday afternoon

long ride home in rush hour traffic

had a tasty meal provided by friends

[up a few times during the night]

feeling somewhat better over all

the CUBS won.

Life is good.

Tuesday, September 18, 2007

Dan's family

[clockwise: Dan, Emily & Matt, Jeff & Jen, Mike,
Bill & Addy, Deb & Gabri]

Well, this past Sunday's family gathering was too much fun, went by too fast, and all 10 of us Knudsen's gathered at our Old Kirk Road home for the last time. It was the first time that all 10 of us have been together since the family expansion this year with a new son-in-law Jeff, and two very cute, twin grand daughters, Addy & Gabri.




[Jen & Jeff
meeting the twins
for the first time.]





For those of you who are in the early years of raising children, perhaps you occasionally think about the day when they all will leave home. Those of us who are empty nesters love the holidays when all the kids are home. It was all that and more.

Twins: Mike, Dan, Gabri & Addy ...
(in the right order per Emily)

MEDICAL UPDATE: We are trying to line up home nursing care so that Dan can come home from the hospital. If you know of anyone who is a nurse [RN or LPN] and would like to work a few hours on their day off, please give them this email address: checkinondan@gmail.com

There is no insurance money available for this, and because of that, 2 home care nursing agencies have turned us down. There is some limited state money that can be provided soon. We really need skilled care for Dan at home at this time. We feel that prevention will help keep him out of the hospitals in the long run.


Medical update in previous blog below.


Friday, September 14, 2007

1st after home Hospital visit

  1. Keep Dan in your prayers this afternoon as I am currently blogging from our local hospital. Dan started experiencing sharp pains in his foot and groin area. He has a urinary tract infection [UTI], and is running a slight temp of 101. He is on strong pain killers.
  2. Dan has been through a litany of tests, blood work, x-rays and a battery of what, when, where questions. His pain is somewhat lessened thanks to strong pain killers [drugs are bad], and he is catching up on sleep. He did have a double portion of the meat loaf & mashed potato lunch. His X-rays and other tests have returned with everything being okay. "Just a bad case of UTI"
    Someone asked "how can he have pain in his foot but yet not have any feeling below his neck??" There is that pain called "phantom pain", or Dan does say that he feels internal pains, like hunger in his stomach and spasms which can make his body shudder. Not sure why it is the groin and foot at the same time.
  3. Saturday PM - We are still at the hospital. Same pains, lots of antibiotics, constipation issues added to the mix and just trying everything to get all this cleared up. Still eating good. Thanks for your prayers as always.

We knew that a hospital visit would happen some day, and are still glad that we avoided the "1st week out of the RIC hospital visit" like many patients. Also pray that Dan gets released Saturday. All the family, Bill & Deb, Matt & Em, Jen & Jeff, Mike, Dan, Gabri & Addy too, will gathering from far and near, for the last time at our Old Kirk Rd home. We are out of there Oct 5th.
It will be the first time all 10 of us have been together.

Dan came home for a few hours, but was still not well, so we borrowed a van, and Bill and Dan's Aunt Mary Kay drove him late Sunday night to Northwestern Memorial Hosp. in Chicago. NMH has great medical resources and also know his medical history best.

He is still here as of Wednesday AM.

More tests, more pills, had the chills, then a fever, His blood work, x-rays and cultures were all taken and are being examined by a team of doctors, He saw his neurologist, his plastic surgeon and will hopefully meet with
the spinal cord injury doctor. His spasms have increased, due to the UT infection, He says his toe pain doesn't hurt when he sleeps, and requests more of his sleep meds. He has been sleeping much of the day time hours, and awakes every 1-2 hours for a drink of water. His eating is off but not stopped. The hospital vent seemed "different" to him, so we are using ours. That also requires us to be in his room most of the time.

On a good note,in the past week, Dan set a record of 4.5 hours on the pacer in one sitting, or should I say in bed.
Yes, there is always good during the dark times.




Van needs

We have found a van. Finally.

We are ready to purchase a '06 Dodge Caravan, rear entry van with 23K miles, handicap modified by Freedom Motors of Battle Creek Michigan. The total cost is $32,250. There is also a $2oo delivery charge, unless I can figure a way to get it home. The van is ready now for pick up, as soon as I secure all the funds. We are selling Deb's '94 Olds Cutlass to help pay for "Dan's wheels", which will go back to Cedarville when Dan goes back to school.

I was not going to say anything about this need, as I doubt that many of you had financial help with the purchase of your last vehicle, and I sometimes feel like I am talking to the faithful choir. But going through some old emails I came across a request from someone to asked me when they could help with the van needs, and maybe there are others.

Some of my business customers [I provide credit card processing for merchants] have already given money and others are doing fundraisers for this van need. Thank you for your help. Thanks especially for the putting up with the lack of service or attention from me. Everything has changed these days. My time is so unpredictable when caring for Dan. Your continued support for our family means much to me, and I trust that I can return the favor to your business in the future.

Thanks to the many families with handicap vans that have emailed us about the advantages of their particular van etc. Please know that we have taken those suggestions into account, have done additional research, visited, driven and borrowed many types of handicap vehicles over the past few months. This is a good reliable vehicle for Dan, in his current new injury condition.

Tuesday, September 11, 2007

Pacing, Power Chair, Jouse and the CUBS

Pacing is good for the most part. Sunday was the best with 2.5 hours in the chair. We can get that long of a time first thing in the morning, in bed and doing nothing , but it dwindles fast during the day. We continue to chart if he has been deep suctioned or if we used the Inexsuffalator AKA "the coughilator". It is a machine that shoves pressure into the lungs, expands them, and sucks it back out, (like a cough) hopefully getting the bigger mucus or "luggies" deep down cleared out.
YOU WANTED TO KNOW THAT RIGHT?

This morning Dan even got washed up, dressed and into his chair during pacing. Transferring him without tubes was nice. This was a first, as any movement or touching of him in the morning causes lots of spasms and would affect the pacing. It also knocks his SpO2 levels down below 94, which is where the headaches begin. Dan's is usually at 99 or 100. So, progress at a steady pace.

His power chair is possibly going to be delivered to the Rehabilitation Institute of Chicago this week. The wheel chair company requires that an occupational therapist check him out with the new device. I sense another 1 day road trip in the works, but am getting better at packing all his travel stuff.

The Jouse mouse showed up today. [We're feeling a little gypped because we paid for 2nd day air from Canada, and it took 13 days. Such is life.] Anyway, we got it hooked up and Dan is perusing the Internet with a bit more speed. Thanks to the ones who provided the funds for this device.

What is with those CUBS? Yes, we watch every game, every day. We now have a 2nd CUBS banner hanging up, and CUBS necklace, [thank you Sharon at Party Setters], watch with the CUBS blanket, and CUBS cap on. We even get vocal [but not like Uncle D.] at the TV when plays are blown, knowing that we could have done better. LOL I don't think it's something to pray about because the Brewer fans are praying for the opposite way. [Sorry to Uncle E. Aunt L. S&T, but we feel the Cardinals are too far out of it for a comeback this year.] If you want great insight to the game and players, stop by and join us.

Saturday, September 8, 2007

We're Still Here

Dan is doing well. Sorry we don't post more often -- we're pretty busy -- I thought I was exaggerating when I told people that Dan's care would take a few hours each morning and evening once we got home. I was not exaggerating, but short of reality!

Dan's pacing is slow but sure. He is able to stay off the vent much longer when he is in bed or reclining than when he is upright. His longest time was 1 hour and 20 minutes. As I'm typing now, it's been 30 minutes. That's the longest so far while in his chair.

I love seeing Dan use his computer. In addition to checking his email and Facebook, he gets to view photos of his nieces (which he loves to do) and is doing a Bible study with his OPE guys.

Dan is really wanting to be at Cedarville for homecoming, so we'd appreciate prayer about getting those details worked out. We still need a van -- they're out there, but we're hoping to find one a bit less expensive. Oh, and would you pray that Dan's power chair would arrive soon. What a difference it will make when Dan will be able to move himself about and have some independence.

Neither has the eye seen a God besides Thee,
Who acts in behalf of the one who waits for Him. Isaiah 64:4

Monday, September 3, 2007

Labor Day '07

Pacing today started with a record 32 minute session this morning while Dan was still in bed and another 20+ minute session later on in his chair. Progress is slow but good, and we are still excited about getting rid of those "watch my tubes" forever.

We have enjoyed a lot of visitors this weekend.
Cedarville students took advantage of the 3 day weekend
and a few of them "checked in on Dan".


Long time family friend and CU student, Talitha stopped by Sunday to say "HI" and drop off a few things from Dan's twin brother, Mike. She'd love to have Dan back at the 'ville, to practice her nursing skills on him.




Jared [OPE brother]
& Katherine
['07, who was with
Dan
on the Mexico trip],

stopped by after
visiting family in Chicago.





Mark ['07] was nearby and just stopped by again, to watch the Cubs game with Dan. Wearing a Cubs hat, and Cubs blanket [Thank you Lyle's] did not help the Cubbies win today :(



Friday, August 31, 2007

Pacing

pacing break during the Cubs
game with uncle David

IT'S WORKING!!!

Sorry to keep you in suspense. The morning went like this: Phone call that the nurse won't be here today, [okay], then Josh, a friend from CU, dropped in for a visit, and Grandma & Grandpa J. are here as they didn't want to miss anything, and "get the door... oh it's lunchtime already." Rhonda was here for lunch help, "Someone answer the phone for me." Dan is finally dressed, and waiting for me to get all of his equipment ready, "Hey Josh, can you help Ambu Dan for his suctioning". [Everyone needs to know how to Ambu.] Okay, I think we're ready to start.

We have activated the pacer 5 times today, with 1 hour breaks in between to rest his diaphragm. The first 2 times for 3 minutes and then only 1 minute had Dan's oxygen level drop too fast from 100 or 99 [his usual] to 90. So we called the "technical help desk", aka Dr. Onders' assistant in Cleveland. She had us do a few things differently for now, like keep the trach cap off so that the exhale air does not have to go all the way through the mouth or nose cavities to get out, thus making it easier for the pacer and keeping his O2 level higher. Try the back up unit. Does he need to be suctioned? Use of the diaphragm is loosening up secretions that have built up in his lungs. [That's good]

We stick with the original unit, and have activated the DPS 9 times, each 7 to 9 minutes each, with his O2 level only dropped 2-4 points. Dan is not able to talk as loud as when he is on the vent, but that will improve over time. He is barely able to detect it breathing, but knows something is going on down there. His length of time gets lower later in the evening.
Stay tuned.


Saturday Updates

We've done 8 sessions of pacing today. We are trying different things, like trach cap on or off, breathing through the mouth vs. the nose vs. the trach hole, deep suctioning of his trach and passage way. 11 - 13 minute pacing is the average. Who cares about this pacing stuff anyway, the Cubs are still in 1st place :D

Sunday Updates

Today we started out [noon] with a 28 minute pacing session. His volume stayed at 600 [800 on the vent-cuff up] and his oxygen was at 98 [usually 99-100]. That was encouraging, but he was in his bed, lying slightly elevated. hmmm ?? 2 other sessions today have only resulted in same stats as yesterday.


IT'S WORKING!!!

Dan with his pacer unit, attached to the wires in his chest.
There is a oxygen meter clipped to his right finger. Press the 2 blue buttons to turn it on, and it's sending electronic impulses to his diaphragm, 12 a minute. You can also see 1 of the 4 surgery entry ways that Dr. Ray Onders used for placement of the wires. He wears a waist binder for better blood pressure control and to keep the diaphragm pushing UP and not down or out. Cool stuff.

Thanks for the time to checkinondan.

(We'll keep adding to this blog through Sunday)

Tuesday, August 28, 2007

computer connection


As computers are fast,
some computer services and friends are faster.


This is a live photo of Dan being setup with his computer, his connection to the world outside this house, his CU email, his facebook, his IM chat, his online college classes [starting soon] and on it goes. He remembers most of what he learned at the RIC tech therapy. And away he goes.

His computer sessions sound like this:
"start listening, open window, novell, mouse click, show numbers, 24, login, tab, mouse grid, 1, mousegrid, 5 [tells the mouse to move to a certain location on a page] open, dknudsen, tab, letters, delete that, back space, click right, show numbers, show speech recognition, inbox"

It took all of that last segment just to open his email. Longer than the few clicks and passwords that you and I use, but it works. Dan is glad to be "doing something" even if it is wading through 30+ "beginning weeks of college" emails, [CU has kept his same email account open, and he prefers not to give it out to the world - LOL], but he enjoys knowing what's going on at the 'ville. Cedarville University that is. He has been laughing and commenting on a few of the emails and videos.

Some dear friends, Alan & Marty donated an unused laptop, and Josh [CU '05] and the company Signature Tech Studio did all programing and set up this morning. I told you it was fast. Windows Vista has a voice recognition program in it The joust has been purchased and will help with some mouse applications. A wireless headset will be purchased so that he can move away from the computer (no hands to disconnect the cord :)

Other people volunteered to help with getting Dan set up, programming, etc, and we will call on you in the future.
Our lives are always up in the air, and as we try to use all who volunteer things, it sometimes is just the timing of the request or that you sent us a second request that brings action.

Thank you for the overwhelming support, notes, money, that you have provided. You uplift and overwhelm us, especially when we are down from dealing with an insurance administrator, the house, "who's stopping by today", food and equipment, or just Dan's day-to-day care and needs.