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3/2/04 Time to Party From:
Rob Payne <rob@everydayisprecious.com>
Darcy
has always loved having her party at Let
It Shine Gymnasics - they do such a great job with kids. When
we described our situation to them, the folks at Let It Shine were
kind enough to discount the price for us so Darcy and 14 of her
friends could still have a party there. And Marcy was able to get
to the party. It
was difficult for Marcy and we were only at the party for half an
hour, but worth it: it took 3 hours to get her ready and 4 hours
to get her settled back in when we got home. Marcy missed a treatment
and missed a meal. It was the first time she has been in her wheelchair
since October 12 and the first time out of bed since December 24.
You
may remember last year Darcy's birthday was on a Saturday and she
had her party at Let It Shine. Marcy missed the party last year
because that was the same Saturday we went to the hospital on the
trip that
led to tracheostomy . So
it was a great birthday for Darcy and a happy anniversary (of sorts)
for Marcy. Anniversary
2/8 Speaking
of anniversaries, our 11th wedding anniversary was February 8 and
we celebrated quietly at home.
Marcy
asked me to hang it right above the TV – the direction she
faces all day. The whole family now sees it at the same time we
watch TV. Breathing
on her own Our
last update told how Marcy had breathed
on her own for a few minutes. Since then, she has done that several
times - the longest of which was 12 minutes, 12 seconds. We
also reduced the breath rate from 10 bpm to 8 bpm as another step
in weaning her off the ventilator. For more details of breathing
and other daily updates, check
out our new weblog. Financial
Lessons Friends,
family, and strangers have been very generous in giving to us during
this part of our journey, but we are starting to run behind, so
we are making more adjustments. We
have cut back on Marcy's treatments. We were doing 3 treatments
a day (6 days a week) and have now cut back to doing 2 a day (6
days a week.) Most of the Clinic's patients do 2 treatments every
other day, so we're still doing more than most. This part of her
protocol costs about $33 a treatment. So this change will save us
about $850 a month. We will watch to see if it changes the speed
of her progress.
"30
Ways" is Close to Publication
Dave
wants to record this song on a CD along with other uplifting songs
about children, growing up, and looking to the future. We hope to
find artists to contribute at least a dozen songs (and their talent)
to the project. Legendary, Grammy nominated music producer Fred Vail is producing the project for us. Fred managed the Beach Boys in the sixties and has owned a studio in Nashville for 24 years recording premiere artists like Sting, B.B. King, Dolly Parton, Vince Gill, and Steven Curtis Chapman. His credits are truly too long to include on this page, but we are blessed that he has agreed to help us with this. If
you or someone you know is in the music industry, please see if
there is a way you can help. Download
the PDF that gives a little background on Marcy, the vision for
the CD, and the current needs. Shop
igive.com
Dinners Now Scheduled Online in Real Time Friends and neighbors have been bringing dinner for us every weeknight for almost two years now. This has been and continues to be one of our biggest blessings. Mariellen has been a Godsend to us and does a great job coordinating our meals for us. Though she hasn't complained, we have added an interactive, online calendar to the site to: help ease the burden of scheduling dinners for us and to allow anyone - even people who live far away from us - to volunteer to provide dinner. If this is something you would like to do, please check out our new dinner page. You can go to this page anytime by keying www.everydayisprecious.com/Dinner Respite
update Michele's halo glows brighter in our eyes as she continues to come each Thursday afternoon, giving Marcy time away from me.
Columns
Since Last Update 2/27/04 Publisher helps fulfill dreams - Use skill sets from your work to help a family in need. 2/20/04 Express Lane - Let someone in need be first. 2/13/04 Nurse's husband played love on Marcy's piano - listen to the dreams of a person in need. 2/6/04 Spoken prayer exposes heart - pray out loud for a family in need.
Subscribe We appreciate your forwarding our email updates about Marcy to your friends. If you want to start getting them directly, click here and we'll add you to the list. You may want to copy whoever has been sending them to you so you don't get more than one.
Specific
Prayer Request We ask with thanksgiving for all we have already received. Our specific prayer request right now is that Marcy sees even more strength - in her neck to support her head, in her hands and arms, and in her lungs to be able to talk again. We continue to thank God each and every day for your prayer and care. Rob
& Marcy |
