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

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.

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!)

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!

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.

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.

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.