Saturday, January 31, 2009

Garrett Writes

"Well we're in our second semester at Cedarville and things are going very well. As you all may know we have hit a lot of problems with insurance and funding but, nevertheless, God always provides and we made it. We are still trying to work out some of the kinks but we are trying to stay faithful and believe that God is always faithful. So if you all could be in prayer for that that would be great as we are always in need of prayer. We are still working on bringing guys in on Thursdays so I can get a day off. So far so good but we still need to get something scheduled and set in stone. <----another prayer request :o)

Serving Dan has definitely proved its challenges as some of you might know who have worked with Dan. It is not because of Dan himself but just the overall care and responsibility for him. God has really used this time to grow and strengthen me spiritually and responsibly.

I was inducted as an "honorary member" of OPE at the beginning of last semester and couldn't be happier with the friendships I've made over this time. OPE is such a great group of guys with hearts to know God more and grow closer to Him. We have our small group once every week and this semester we are going through the gospel of John. It's so amazing! I love these guys and thank the Lord for letting me be apart of their lives. It's amazing what God does when we surrender our lives to Him, listen to His voice, and obey Him. He has allowed me to be a blessing to Dan and that, in itself, is a blessing to me. I am blessed to be His hands and feet and serve others while He does all the "preaching" and grows us to be more like Him.

The future is still a bit unclear of what the Lord wants me to do, but so far I am feeling like I'm being released to move on and continue in my education next fall. So please be praying that the Lord brings someone into Dan's life that is able and willing to continue where I might be leaving off. I know God still has plans for Dan (as He does for all of us) so we are trusting that he will continue to take care of Dan and provide.

Thank you all so much for your prayers! They definitely do not go unheard! I have had some down moments of stress and frustration but through Christ I always overcome. I'm still here so it can't be all that bad :o) Thank you all again so much and I trust you will keep praying for Dan."

Saturday, January 17, 2009

Spring Semester & Nurse Katy

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

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

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

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

· 2 student nurses for alternating weekend care

· someone who will take care of Dan's scheduling

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

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

"Baby, It's Cold Outside"

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

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

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

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

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

Friday, January 9, 2009

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

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

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

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

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

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

Bill, Dan, Beth [Alex Mom], Alex, Kevin [Alex Dad]
Akron Beacon Journal
Cleveland Fox News photos

Tuesday, January 6, 2009

Happy One Year of Pacing

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

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

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

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

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

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

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