Monday, June 30, 2008

DAN HAS PNEUMONIA

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

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

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

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

Thursday, June 26, 2008

The Final Move


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


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

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

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

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

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


Tuesday, June 24, 2008

Happy Birthday Dan & Mike

Happy Birthday Dan & Mike

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




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




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

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

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

Sunday, June 22, 2008

Helpful Info

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


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

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

American Spinal Injury Association (ASIA) Impairment Scale

A = Complete: No motor or sensory function is preserved in the sacral segments S4-S5.

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

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

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

E = Normal: motor and sensory function are normal.

Thursday, June 19, 2008

New Friend/BMX/June 19-23

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

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

Wednesday, June 18, 2008

KKI week 4


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

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

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

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

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

Wednesday, June 11, 2008

Hard Work

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

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

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

Saturday, June 7, 2008

6 months of Pacing with the DPS

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

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

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


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

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

Psalm 36:7

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

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

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

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

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

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