Outings

On Sunday we had a family outing to go to the movie theater to see Shrek III . It was 6 blocks away, a 20-minute walk with his power chair, bumpy at times on rough sidewalks and ramps. It was the first time Dan was in another indoor setting with his ventilator. There are a few things that must accompany Dan on such outings: ventilator, extra battery, "Ambu bag", trach kit, deep suction tube, portable suction machine, wash cloths, water, and other personal care items. We fit these into 2 backpacks. No
alarms went off or other mishaps, so we claimed success.
PS-- the movie was funny like the other 2.


After the movie we went to a park and talked - a lot about how the wedding will be for Dan - and just enjoyed the beautiful lake-front setting. We then went back to RIC for pizza. (Chicago deep dish pizza !!!) To prepare for getting to the wedding, we decided to plan an event for each of the next 2 weeks where Dan would have to be in a vehicle.



Since we woke up to such a gorgeous day, we quickly planned to take advantage of the day by making arrangements to go to Lincoln Park Zoo, about 2 miles away. We called for a handicap -accessible taxi where Dan barely fit, but after taking the leg rests off his chair, we made it in. (We now know we'll need to get a drop-floor type vehicle.) Dan said it was pretty neat to be in a car once again. The zoo was packed because of Memorial Day, but the weather, sights and sounds AND the soft pretzel were worth it!! It amazes us that Dan is so willing to be in public when he knows people stare, and we are getting okay with that too. His sweet countenance continues to be a blessing.

So we already met our goal of getting out this week. Hmmm -- where to go next??

PS Continue to pray for sleepless nights. We don't know how he operates on 4-5 hours of sleep.

HAPPY ANNIVERSARY TO US

29 YEARS . . . AND 46 MORE TO GO !!!

[on our 75 year marriage contract (long story)]

We are sooooo blessed.

4 children Matt, Jen, Mike & Dan,
a daughter-in-law Em, a soon to be son-in-law Jeff,
2 cute grandchildren Gabri & Addy
(okay I acknowledge the 2 cats Chip & Slinky)
Parents that encouraged and supported us
18 loving brothers, sisters, and spouses who love to get together.
24 Very fun nieces and nephews, and a cute great niece.
Friends that "stick closer than a brother".
and this new world wide body of Christians that continues to encourage and love us.

We don't believe that this is the biggest challenge in our marriage, but it's near the top of the list.
Thank you for walking this road with us.

"For all your continued prayers, love and support,
We love all of you so much!"

II Chronicles 20:21 After consulting the people, the king appointed singers to walk ahead of the army, singing to the Lord and praising him for his holy splendor. This is what they sang:

“Give thanks to the Lord, his faithful love endures forever!”

Memorial Day Parades & the weekend fun

Some us who live out here in the Fox Valley area, started attending the Memorial Day Parade in Geneva, IL a few years ago.

Since this holiday falls closely to the end of the college year, certain people not to be mentioned, but of that college age group, are still sleeping in late. So last year we asked, suggested, pleaded, cajoled, threatened [threatening parents, OH MY!] for Mike and Dan to do their patriotic duty go to the parade with us. Usually there is a good group of us K's, USUALLY.



For whatever reason, last year, the ONLY year that Bill, Deb, Mike & Dan showed up, no one else did, not even Shelby the dog. So this is fair warning to the local relatives, and you know who I mean. Monday 10:00 AM in front of the old Geneva courthouse. Look for Jen & Jeff, and don't forget the Ole Glory.

. BE THERE. [or support your local Memorial Day Event]






It is good to honor those who have defended our freedoms.
This year we include Dan's cousin, Ranger PFC D. Bennett who is currently serving in Iraq, as I type. Many servicemen and their families have been linked to checkinondan

May we also keep them all in our prayers daily.


Sunday morning, Bill & Deb are going to the a bicycling ride called "Bike the Drive". It is an annual event that falls on a busy weekend for us, and thought we should take advantage of the close proximity. Dan and relief sitter Matt might watch from our 5th floor lounge at the RIC .

We will try for another outing on Sunday afternoon with Dan and the family. We are taking the whole entourage to see Shrek III at the AMC theatre a 6 city blocks away from the RIC. We have scouted out the best sidewalks to take down there, are taking a back up lithium battery for his vent, and some of his required equipment for travel. Should be interesting. Stay tuned.

Mom Being Vulnerable

I woke up this morning with a strong sense that I need to share my heart with you, our faithful supporters and prayer warriors.

Bill and I looked at a few models of ranch homes last week. I walked in one and "knew" that Dan needed this type of house. It was all open -- living, family, dining all spacious for Dan. (Other ranch houses we look at tend to have smaller rooms and narrow halls.) I dismissed my feeling as just being the fact that I probably wanted a new house, and because of financial concerns anyway.

We got back to RIC to see Dan and share with him about house hunting. He said to me, "Just make sure it's open so I can get my chair around." I almost started crying because of his sweet spirit of acceptance of his situation. There was no demanding in his face, just a realization of fact. I know that other quadriplegics live in not brand new ranch homes just fine, but it has recently hit us that unless the Lord frees Dan from being vent-dependent, he will not be free to go anywhere by himself. He won't be able to use public transportation alone. He will be home a lot. He loves change of scenery. As I mentioned a few days ago, we walk around the RIC hall just because he gets bored in his room. I long to make his environment as friendly and useful for him as possible. Since Dan's accident we have already learned how unimportant houses and material things are, and yet I so want Dan to be comfortable. I treasure your prayers for us in this decision-making process.

Thank you for listening to a Mom's honest heart. Bill is looking at a few homes and lots this week. We know that the Lord will direct our steps to just the right place for us. Dan will be released from RIC way before we have a new house ready, but we will make temporary changes in our current home until we get in the new house.

Please continue to pray for us as we embrace, not just hold on to at a distance, but embrace, our divinely assigned portion. I thought the burden would get lighter, but it's actually getting heavier, especially as we think about being home soon, without all the respiratory therapists nearby. God is faithful and He will never give us more than we can bear!

Thank you again for all the help fixing up our present house. It is absolutely beautiful. (Oh, that reminds me -- so many people have talked to us about Extreme Home Makeover. New sounds wonderful, but so many friends and family have put too much into our house to undo their hard work. I know that the Lord will bless the work of their hands. But thank you!)

Visitors and Outings

Dan had 2 visitors and an outing on Monday and Tuesday.

Cedarville University's Pastor Bob Rohm, Vice President of Christian Ministries and Brian Nester, Director of Missions, were able to pay a visit to Dan this week. Pastor Bob runs the daily chapels and is known well by all students. Brian was the one who had to leave "THAT" phone call to us on Friday night, March 9th.

They took Debbie and me out for lunch to the Grand Lux Cafe on Michigan Ave. and all of us for dinner at the NMH dining room. (Of all the places to eat in Chicago, and we go to a hospital dining room!!) But Dan desired to go to the hospital to visit the ones who had cared for him for 2 weeks, so we drove his power chair the 2 blocks. We saw the corner suite, as we called it, but Dan did not really remember much of the place from his 2-week stay.

Tuesday Dan's Physical Therapist wanted Dan to "drive" to Treasure Island Foods, a grocery store 2 blocks away. Driving a wheel chair with the "sip and puff" method on city sidewalks is a challenge. It's nothing like the smooth floors of the RIC. The building's older handicap incline ramp with narrow rails barely accommodated the power chair, and the 3' x 4 ' airlock doorway, one door closing before the other one opens, was too much to handle physically. It buzzed me and I was on my own two feet. It didn't help that Dan had an excruciating headache that day. But, we won't give up!

Well, I'm off to look at a few houses today. We're trusting the Lord for provision in this area.

Back to Dan

Dan really had a good week. For his dining pleasure, he's had Big Mac's, Chinese food, Popeye's chicken and mashed potatoes, and Jamba Juice! He eats some RIC food, but he doesn't usually have a taste for it. When he consistently eats 600 calories by mouth, one of his 4 tube feedings can be eliminated, hopefully making him more hungry and gain weight.

He completed all of his goals for speech therapy by eating and speaking, so he will no longer have speech. He is able to speak and read on the exhale but also some on the inhale by somehow controlling his vocal cords. That is great for a vent patient. The therapist wants to know how Dan does that so she could instruct other patients! Most vent patients have to pause when they're reading or speaking continuously, waiting for the exhale.

Dan drove his wheelchair himself this week with the "puff & sip" air tube [same as the one over his bed for calling the nurse]. One hard puff is forward, a soft puff to turn right. a hard sip for backward and soft sip to turn left. We walk, Dan rides around our floor and other [17 floors here] rectangle shaped floors multiple times a day. -- 10 times around is one mile. (Mom enjoys the exercise!)

Today the original 6 members of this family, Bill, Deb, Matt, Jen, Mike, & Dan were finally together for lunch at the RIC for a family time. Em joined some of it via phone. We discussed our "new life" since the accident, Dan's rehabilitation and progress, his and our future, selling and buying another home, the wedding, ... "family stuff".

A big concern to Dan is how to communicate when people ask him, "How are you doing?" We know that you all care, and he's aware that sometimes people just don't know what to say, but it's too general of a question. Dan needs so much positive reinforcement about his future, and that he can still enjoy life despite his physical condition.

You may need to view him from a distance to get over the initial shock of his condition, [we've all had to do this from time to time], then approach and give him your greetings. Maybe read up on Quadriplegia and the latest technology, and a sincere smile with the same love you've always given him always works. Something like, "It's good to see you", and tell him what's going on with you, and ask him specific questions about his rehab or current sports events [Go Cubs Go]. Look past his disabilities to see him.

Please pray:
Dan has a headache every day, not migraine, but severe.
His pressure sore is much better, but has a long way to heal.
Nights are still rough, like 3-1.

I read II Chronicles 20 again a few times this week. Read verses 3 - 12, 17. What a focus!

Wow!

I woke up this morning to the sound of voices and a bobcat moving gravel in our driveway. I wish all of you could be here this very minute to see all of these people working on our yard just to get our house ready to sell. We are moved beyond words. And we thank each of you for your continued prayer for us. Wow!

milage points to donate?

As most of you know we have a few major events going on in our lives at the same time.

Our daughter Jen, is getting married in 4 weeks to a very special guy, Jeff. He is already like a son to us. This will be a sacred, loving and very happy event in the mist of our family's current situation. God's timing is perfect.

AND

Our oldest son 'M' and daughter-in-law 'E' are in the process of adopting the cutest twins from a Central American country. Their daily photos, videos and blog updates are pure sunshine and give us laughter during this time. We all thought that after a year of "the process", they would be home by now. After all they are in the ceremony. God has not seen fit to do so. M & E continue to trust His timing in their lives.

AND

Our Dan is still paralyzed, on a ventilator and in Rehab for another 2-3 months. The logistics of getting him to the wedding are huge, but we started working toward an approval to go "off campus", handicap transportation, and his medical care, a few weeks ago. Other SCI people have said that their first time out of the RIC was a very difficult challenge mentally. It will be no different for Dan. Pray about that.


We are often asked "what do you need?" which is a tough question to answer, because aside from needing gasoline, parking fees, sleep, and healing ... we're are doing okay. Besides you all have been too generous to us with those food and gas cards and a fully loaded freezer. [Thanks]

I do believe that my family has a healing need to be together on June 16th, for the wedding. Dan WILL be there, and of course so will Jen & Jeff, [LOL], but we would like to get M & E back here too. The adoptions could still be finalized in the next few weeks, but we need to enact plan B; 2 relatives need to exchange places with M & E for a few days, so they can attend and be apart the wedding.

Yes we could use 4 RT airline tickets or points for the tickets.

This request would only apply to you if you have extra airline mileages points or credit card mileages type points that you could donate to them, part or all. [Purchasing tickets outright, if not refundable, could be a waste if the adoption happens.] Again if you have already helped in some way, thank-you and continue to pray for Dan. I've attached an email from M for you to consider.

Dad,
The preferred airline is American since they have the most flight times and good connections. Delta and Continental/Northwest are other options to/from "down south". United is the least preferred as they have long layovers and travel will take a full day.

It typically takes 35,000 miles or points for a round trip ticket - provided we can book within the next week or two since "Reward Seats" are more likely to be available. Tickets would be purchased on our behalf by the donor.
M

I have intentionally been vague with some names and places because of the foreign adoption issues. Replies or further questions should be made to:

checkinondan@gmail.com

Weekend House Prep

Alan [grandpapa to the best grand twins] tells me he has enough help for this Saturday, May 19th, 9:00 AM workday, but he does not fully know what lurks in the business storage, the garage and the garage attic. Work will be in those areas, and also the outside landscaping, planting of flower pots and beds, putting down mulch. Did I mention the pool that needs to be cleaned out? So ya, lots to do.

"Many hands make light work" my mom would say as she handed us a grocery bag to fill up with weeds from the garden, ON A SATURDAY! I still shutter thinking about weeding that garden. Maybe that's why there were 8 of us kids??? [I love you mom!]

Tools needed if you help outside are wheel barrels, pitch forks, garden rakes, mulch rakes, work gloves, your favorite garden trowel and loving the feel of mulch and black dirt under your fingernails.

Tools needed if you are helping with the garage cleanout: work gloves, a mind for sorting, a back for lifting, patience and a sense of humor.

Lunch for Saturday is being provided by friends; we may need a few ladies to help with serving and cleanup. Bring you own water bottle. Free refills.

IF you have NOT "registered" and are coming to do general work, AND will be able to stay for lunch at NOON, we do need a head count for food. Please send an email to the address below. Just put your name, "cleanup" and how many are coming in the subject line to amschmanke@gmail.com. That's it.

Google map can help you get to Old Kirk Road in Geneva. There is no longer any access from Rt. 38. as Old Kirk Road is closed at the railroad tracks. You must enter via Cherry Lane.
Construction note: There is only 1 lane of traffic at the corners of Rt 38 and Kirk. You can avoid that corner by taking Rt 25 south to Fabyan Parkway east to Kirk to Old Kirk.... just look at the map. LOL

There will be other things and times to help out with Dan. No regrets are needed if this is not your time or way to help. We love you more than you can know. You continue to overwhelm us.


P.S. After a few days of little sleep, Dan had a good nights sleep last night. He was up for an hour and a half, but then went back to sleep and slept until 8 am. He has been taken OFF a few more sleep / anxiety meds, as we are trying other alternative methods to get him back to sleep: talking, scripture, head massages, music and a few other things.

"I'd like a Happy Meal"

It's no secret that Dan lost 35# after his accident. His "food" currently consists of 600 calories of Isosource drink 4 times a day through his stomach tube, Reliv nutrition drinks, muscle building protein drink and health juices. Nutrition yes, but none of this is as good as eating food through your mouth. We have been on a quest to get Dan to eat food, any food by mouth.

Another related problem of his weight loss and lack of food by mouth is that his skin has thinned, and after only a few hours lying on any one spot he develops a "pressure sores" and raw skin abrasions.

You remember the half way successful cookie test at the hospital, "nothing thicker than a milkshake". One of his speech goals [which also includes eating] has been taste testing micro size portions of various soft foods, like yogurt, apple sauce, peanut butter, jelly's, ice cream etc. The speech therapists have felt for a few weeks that everything in the throat and his swallowing functions were working okay. Most of these things just don't taste right, and it is a discomfort for Dan to swallow while on and ventilator with his cuff down.

So there was a discussion with Dan recently with an "unnamed staffer" in the room who said "Dan you just need to eat some hamburgers and french fries and shakes and anything to get some meat on your bones. That is when Dan said "I'd like a Happy Meal" * [We knew that 2 years of Mike & Dan working at McDonald's would eventually pay off.]

Well, another "unnamed family member" flew out the door to our local micky d's and returned in mere moments with a cheese burger happy meal. An "unnamed family member" held that delicious golden burger in their hands and lifted it to Dan's waiting, may I say drooling mouth, and away he ate. Bite, chew, swallow... bite, chew, swallow...and again... and more...then french fries, then pop. AND all the time a certain "unnamed family member" kept saying "Chew your food well, keep chewing, don't choke". Of course he did just fine.

Of course all of us were ecstatic with joy. Dan can eat real food again !!!

The same thing happened again after seeing a KFC commercial on TV for a juicy chicken sandwich. He said he'd like like one. Well where do you find ANY chicken sandwich at 11:30 pm? So off I go... I mean an "unnamed family member" drove over to the 24 hour Rock 'n' Roll McDonald's and returned with a deluxe crispy chicken sandwich [mayo & bacon = more calories]

Now you ask whats with all this "unnamed" people? Well technically, medically, "don't tell the doctors & lawyers" Dan was still on a liquid only diet, the test said he couldn't swallow food.

We did let the doctors know at the next medical family meeting about his Happy Meal experience and now.....

....he is officially on a regular foods.

His full appetite is not back, he has had stomach aches recently, but this eating thing is just another small step in the right direction. Thank you AGAIN for your prayers.

Prayer from our Church Elders

The Prayer of Faith - James 5

13 Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. 14 Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. 16 Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.

Dan, of his own accord, recently asked if the elders of our church, Harvest Bible Chapel, could come and pray over him. [Some of you reading this might not be familiar with this New Testament church practice.] I will just say that this morning some of our church elders came down to the RIC . We all gathered around Dan and had a time of talking then prayer. It was a very special and private time for us, to hear our elders pouring their hearts out to God on Dan's behalf. Thank you.

What kind of healing can take place or how can he be "made well" considering that Dan has a complete Spinal Cord Injury, you say?

• Healing of the Soul - Dan still expresses his love and acknowledgement for God in his life, but what plans and purpose does God have for him in this new life?
  
• Healing of the Mind - He does not have all the proper signals working between his mind and body. Everything may physically be okay, but he still feels short of breath, anxious, low blood pressure, dizzy, etc. From fear of the unknown or his future.
  
• Healing of the Body - [we'd take the same son pre 3/09/07] Current everyday healing would be for sound sleep at night (more than 4 hours), strengthening of his neck muscles, getting off the ventilator (with his diaphragm working again, or a "breathing" implant), better mind body communication, eating more food by mouth.

We know that the prayers from all of you, who so fervently have been praying for Dan these past 2 months, are heard by God. Thanks - things could be worse. Realize that prayer not always about God giving us OUR desires, but maybe about God changing our desires to HIS desires. Psalms 37:4

Thank you once again for CheckingInOnDan.

2nd Month Recap

If you had told US a year ago .....

.... that we would be caring for our 20 yr. old son full time, spending most of our time in hospitals and the rehab center with lots of medical equipment AND knowing what it does and how it all works, talking medical care and terms, like ventilators, spinal cord injuries, quadriplegic as everyday language, living out of 3 places all at once, spending less than 2 days a week at your home, sharing that home with your spouse less than 3 times a month, selling of your home, modifying your somewhat comfortable life, noticing every person and thing in the handicap world, applying for permanent disability status with Social Security for one of your own kids, [and the list goes on] ... well, you would say " I'LL PASS", as all of you would be doing the same thing that Debbie and I have doing since March 9th, 2007.

If YOU had been told a year ago .....

... that a simple tumbling accident would leave you paralyzed, on a ventilator, living in a hospital and rehab center, with high temperatures, headaches, sleepless nights, a nasty back sore, and the feeling that each time you wake you feel that you are still buried alive in a sand dune, with only your head exposed and moving, unable to speak and eat without lots of effort, feeling like you need more oxygen, watching other people care for your every need, knowing that life is this way because of you, listening to medical people, family members, college buddies and friends pass by you, trying to converse with you, but usually talking about you and your situation. That has been Dan's life since March 9th, 2007.

It has been 2 months since we got "THAT" phone call, and our life has taken a bit of a curve.

While on a missions trip in Puebla, Mexico with Cedarville University, Dan, our youngest son, attempted a back flip and severely injured his C2 vertebrae [& some to his C1] . This severe contusion to his spinal cord caused an instant paralyses from his neck down, and the inability for him to breath. It is a miracle that he is still alive. 1st Minutes After the Accident

He was rushed to a private hospital, were he was stabilized and received excellent trauma care. Deb and I were by his side early the next morning. He was still paralyzed and on a ventilator for breathing. We were taken care of by the missionary community who never left our side.

Dan was med-evacuated by air 3 days later to the Neurological ICU at Northwestern Memorial Hospital in Chicago, where he stayed for 2 weeks. Besides a ventilator for his breathing, he received a halo to support his fractured vertebrae, and later surgery to place a screw in his C2 vertebrae which prevented slippage when he sat up. They also added a tracheotomy for better breathing and care, and a feeding tube in his stomach. He lost 35 pounds.

He was transferred to the Rehabilitation Institute of Chicago just down the street from NMH, and after a few rough weeks of high temperatures, headaches, sleepless nights, a nasty back sore from the evacuation, and other spinal related issues he seems to be gaining ground with the mental game. At the first full evaluation, the doctors and therapists said that it will take between 3 to 5 months to get Dan ready for life outside of the RIC. Dan said it best with "nothing I didn't already know". We have a long way to go.

There have been numerous tests regarding any feeling in his limbs, and detections for any breathing on his own. The results are always negative, no change in his quadriplegic, vent-dependent status . He has his trach cuff down more than not, is eating food by mouth, has been out side the center in his power wheelchair, and has gained about 5 pounds back. He still has restless nights, with only about 4-5 hours of sound sleep. The sore on his lower back has not gotten better. More on that at a later date.

Job expresses some thoughts of ours at this time in our life. 6:10 At least I can take comfort in this: Despite the pain, I have not denied the words of the Holy One.11 But I don’t have the strength to endure.

Thank you for your love, care and support, but mostly for your prayers. We so need God's help each minute of every day, and especially nights.

We are all slowly learning how to live new life as it is uncharted territory for the Knudsen family. If we had only been told...

Selling Our Home - HELP NEEDED !!!

After careful review of our Dan's future condition and housing needs, talking with contractors and handicap home specialists, it has been determined that it would be better to sell our current home and purchase a ranch style home. You see, this house has 4 levels, and as it was great for "hide-n- seek" or air gun wars, it is not for anyone in a wheel chair. They would be effectively confined to one level or area of home living.

Many of you have asked for tangible ways to help. SO... WE NEED HELP getting this place ready to sell. If this type of help is not possible for you at this time, [like you live in Mexico or Ohio, etc] pray and know that there will be many other opportunities to assist with Dan's care.

I have attached and modified a letter from Alan, our daughter-in-law's father. Read and consider if this is for you, at this time.
(we do share the cutest twin grand babies, don't we Alan?!! :) :)

Bill,

The work project list consists of 60 different " to do" items, some large
and some minor, in the following areas.

Painting, carpentry/trim work, electrical, plumbing, carpeting, vinyl flooring & trim, hardware replacement, garage clean out, pre-packing,
lots of yard work, [raking, mulching, weeding and planting of flowers].

Tentative work dates are May 11th & 12th, 18th & 19th.

Those who would like to help financially should donate to the Harvest Bible Chapel address on your blog.
Harvest Bible Chapel - Att: Drew Schmitz - 1000 N. Randall Rd - Elgin, IL 60123
[check memo: "for Dan Knudsen"]

The e-mail account for the volunteers to use is
amschmanke@gmail.com

Thanks Bill.
Alan

FYI - Our house will not be listed on the open market until after our daughter's June 16th wedding. It is okay to let people know of its future availability, AND likewise we are looking for a ranch home or a lot in the Batavia to Elgin area - west of the river to Rt 47.

Comments are closed. Field any questions to Alan, that you feel might need to be addressed to everyone. Thanks.

A Great Weekend with My Brother

Well I got to spend a longer weekend with Dan than I ever have and let me tell you - we had fun! Usually when Dan and I are together it consists of some talking (no, not with his voice) and me trying to convince him to do something fun, but him being too tired so we sit and channel surf.

Well...this weekend was different! Because Dan had such a great week, he is now on a roll! On Saturday his Physical Therapy was at 10:30am - so naturally he was up in his chair, dressed, ready to go with his cuff down by 10:15! The schedule worked out so that he was able to have speech therapy right after and that consisted of him trying different foods (he had several spoonfuls of ice cream and ate a stale Cheetos - I got him a pretzel instead!) Then I asked if he wanted to stay there or go back to his room (usually he is ready to get back in bed at this point) He wanted to walk. So walk we did - for 2 hours! They told me that 10 times around the floor is 1 mile - so I think we went about 2 miles. Great and much needed exercise for Jen! With a record 6+ hours in his chair and his cuff down for about 13 hours, Dan was ready to crash.

Sunday was very much the same - cuff down at 8am, ready to go in his wheelchair for friends from school visiting and more walking. It is so nice for Dan (and for me) to get out of the room; having air blow on you while you're moving is so much better than laying in a bed in a stuffy room. Dan and I also discovered that we like the chair on the fastest speed!
Walking around the floor is nice, just not quite good enough. The Dr. mentioned below came to check on Dan and after chatting, then pausing said, "Have you been outside yet?" Naturally my heart leaped! Sure enough, within half an hour he had arranged for Respiratory to come down with us and Dan got to smell fresh air for the first time in 2 months! We were only out for about 10 minutes because it was chilly and the doctor wanted to watch out for Dan, but I think he could have stayed out much longer! Also, because Dad fully knows how to operate Dans support equipment, the ventilator, lowering the cuff, changing the trach, using the portable suction machine, and knows how to use the mouth vent bag him and mom are able to take Dan out without medical staff with them, which means - Dan will be out a LOT more!

It was such a great weekend, filled with much more hard work by Dan. He is drinking a lot more by mouth and solid foods may be just around the corner. He has started gaining some weight, enjoys being in his wheelchair, has his cuff down all the time, and reminds me that he needs protein shakes or that I or the nurse have to do something that we forgot about!

People LOVE hearing Dan's voice; so many of the nurses and PCT's commented, "whoa! I've never heard your voice before!" One even got teary eyed! Our thoughts exactly!

I am SO proud of Dan and how hard he has worked and how much progress he has made so quickly, especially this past week. We're still working on getting him more comfortable and sleeping more that 4-5 hours at night; but from here on out - things are only looking up! Next step - Dan, what meal are you going to have at the wedding? :-D

Love, Your big sister Jen!

Cuff Down and Speaking and Wheelchair ... Oh My!

WHAT A GREAT WEEK WE'VE HAD WITH DAN.

It started on Tuesday with Dan getting a different resident Dr., who seems to have taken a great interest in Dan. He said he had not heard Dan's voice, and so we proceeded to "put his cuff down". *[see below] When this is done, there is about 3-4 minutes of secretions that have to be suctioned out of his mouth and lungs, as Dan can't cough on his own --- bottom line --- it's a difficult process to put the cuff up and down. Most of us have been trained to do this "cuff down" procedure, but it can be an anxious time for all.

After working through the above change, Dan kept his cuff down for 5 [yes five] hours that afternoon. It might have helped that friends Jen and Issac were visiting him. His previous record time was 1.5 hours. Well Wednesday, he didn't want it down and so we didn't post the good news. [Caution vs Excitement]

On Thursday he had his cuff down 6 hours, Friday[in 2 different segments] 12 hours, and today it's been down since 9:30 am. He even stated that he might like to get approval from his Dr. to keep it down overnight. That's big.

Dan has responded to his weekly goals, with sitting up in his chair for 3-6 hours a day, and doing more with his swallowing of different puree and soft foods.

This is far more of a mental challenge vs physical than any of us could have imagined. We continue to dialog with Dan about his thoughts and his physical status.

Continue to pray for the "mental challenges" that face Dan each day, and let others in your churches and prayer groups know. We feel that Dan might be turning a corner in his recovery.

Know that we think of and appreciate all of you, and how you continue to help and comfort us with your love, gifts and prayers.


*[Cuff technical jargon - meant to be read fast]
There is a small inflatable ring or "cuff" that holds the trach in place. Usually it is inflated so all of the ventilator air goes down into the lungs. When air is taken out of the "cuff", it allows air to flow to the lungs AND also upward past the "cuff" and the larynx, allowing the person to speak.

Now since machine breath is a volume of 1000 and 10 times a minute, [natural is 600 vol. 6-8x], the air flowing into the mouth or nose can be annoying. [Like having some one blow air in your face.] Dan prevents this by closing his larynx, and the air goes back out his breathing tube. So although it works a bit differently than before, when Dan "puts his cuff down", he can speak, and he says it makes him less anxious.

HAPPY BIRTHDAY TWINS

"Feliz Cumpleaños a ti,

Feliz Cumpleaños a ti,
Feliz Cumpleaños a Gabri and Addy,
Feliz Cumpleaños a ti"

No, we are not talking about Mike and Dan, but Gabri and Addy!

The Knudsen twin thing continues with our Guatamala twin grand daughters. Grandma Deb visited them last November with our daughter in law Em, and we are still awaiting for their adoption to the USA.

Much prayer is needed for them to get home very soon, without any further government delays.

I can't wait to hold them, I cant wait to steal them for a day and go shopping, [yes even baby girls love to shop... everyone knows that] and I can't wait to spoil them almost rotten, and know for sure who is who. [it took me too many years with M & D] AND I just know they will want to go cycling for hours and hours with Guillermo Abuelito [Grandpa Bill]


I know that we are shameless talking about our Cedarville U connection, but the twins have an impressive list of CU relatives, who are grads or current students. Their dad Matt '05, uncles Josh '05, Mike '08 , Dan '08+, and Ben '10, then aunts Jen '06, Sara '06 and and a few more relatives after an event in June, uncle Jeff '05, and his sibs Jodi '06, and Justin '08.
[Did I forget anyone?]

Going Going Gone

Exciting news to report:

Dan's halo is off!

Bill called Dan's neurosurgeon last week to inquire about when the halo would come off; that started the staff here to ask about the timing [sooner is better than later]; soon x-rays were ordered; the neurosurgeon viewed them, came over for a visit and just removed it!

Dan will wear a neck brace for about a month, until he builds up his neck muscles, but he already feels better. (and of course, Mom gave him his big hug.)

Thank you for praying for us. We know that we are not the only hurting people in this world -- many face much greater aches that we have, so knowing that you think of us, makes us feel quite special.

He ate some banana

There have been gradual pushes in Dan's eating. He had his "cookie test" at Northwestern that said he could swallow liquids and milkshake but not puddings or cookies. So for the past 2 weeks, his speech therapist comes in each day with a tray of many various foods and has been challenging him to taste 10 different foods each day. Dan has been taking tiny samples of applesauce, chocolate pudding, peanut butter, and various condiments and flavored drinks for the past week.

Nothing tastes the same in hospitals and even liquids seem be difficult to swallow at times. He really cannot choke on any food, because of the trach being in the way, but as are most things with spinal cord patients, the mental process is just as important as the physical.

Well, a banana that has been sitting on the tray for 2 days finally got the interest of Dan. When asked if he wanted it smashed up, like a puree, he said "no, ill just chew it" and he proceeded to chew AND swallow 4 thin slices of a banana. Yes!!! His monkey [does he have a name?] , still hanging around on his room, let out a shriek of eeeeh! eeeeh! eeeeh! too.

Officially he has been taken off a liquid only diet, his weight loss has stabilized, and we continue to supplement his diet with liquid protein and muscle building drinks, usually taken via his stomach feeding tube.

Continue to pray for Dan to accept his new life, [well each of us for that matter] and the daily goals set before him. God Bless each of you.