Thursday, January 21, 2010

January Update

Life has been crazy.  We lost another SDS friend close to home.  The only other Shwachman-Diamond patient we know of that is treated at the same hospital here in town. We first met Nathan back in 2000 when our hematologist introduced our families.  He was hospitalized with an infection back in October.  The infection started from a paper cut on his finger. God always provides a miracle.  Nathan was healed on the other side of heaven.

We are still waiting on the muscle biopsy results.  They won't be in until the end of February.  I am thinking that they will be negative and that we still won't have any answers for all the extra things the boys have going on (especially Joseph).  Last week, a friend lost a child to Mitochondrial disease.  When I met this friend in the PID support group years ago, I never thought we'd be looking at the same disease as her son.  In fact, it wasn't until Joseph had his muscle biopsy that I realized so many of the PID folks had already had biopsies and their kids were diagnosed with Mito.  Pray for Colyn's family today-- his funeral is this afternoon. It is a very small world. God always povides support on our journey.

I've made a few Cards for a Cure that you can see here:  Pattie's Cards  I also have a few new scrapbook pages there, as well.  I end up doing this really late at night!

The March for Life in Raleigh was fun. I posted pictures earlier.  Matthew already has a bake sale planed for next month at our church.  The Triad Students for Life group is really taking off.  He's got a state senator coming to speak to the group in April and we've got a pro-life teen retreat scheduled for August.  It takes a lot of planning!  God is good and we manage to get it done! 

Sean and Matthew are both doing some training int heir own sports. Football is Matthew's thing and Baseball is Sean's.  We are helping get a high school homeschool baseball team together with a few other families.  They will begin practicing in the summer for their first season in the spring of 2011.  We have a lot of fundraising to do for this, as well! 

Shwachman-Diamond America is moving along!  We helped get a speaker to the Bone Marrow Failure Symposium for doctors and I will be attending the conference in March.  We are working on getting SDS experts giving grand rounds at several major hospitals, too.   Already have one date set and have to work on the media stuff. We are hosting a benefit concert at St. Mary's Music Academy in High Point, NC on May 23, 2010 for Shwachman-Diamond America.  If you have a singer or talented musician in your family and would like to help this cause, please send me an email!  We'd love to have you! 

Thrown in with all of this, Sean is being confirmed this year.  We luckily had his 30 hours of service complete by the end of December, but he keeps chugging along and adding more hours.  We believe it is our call as Christians to serve!  It is a way of life and not something you just do one year to be confirmed! Sean has his district piano competition on March 6th and he is hoping to get a superior again this year so that he can move on to the state competition.   It is going to be a busy day!  He'll leave the competition and go straight to work at the appreciation dinner at church!

We're used to those power-packed days!  In April, he has his confirmation retreat and then we have to rush over to Around the World Night!  The boys are still working with the other homeschoolers on the original play Cheaper by the Dozen  which will be held March 26th and 27th.  We have tickets on sale right now.  The money goes to Goodwill baptist Church for allowing the homeschoolers to use the church an stage all year!  The tickets are only $3 each and VERY limited due to the size of the theater!  Please email me if you would like a ticket!  Luckily, Sean is not an actor because they moved the performance date to March and he's got to perform the Live Stations of the Cross the first performance night-- Sean was supposed to play piano and is part of the stage crew.  They have had fun painting the props and set.  It'll be crazy dropping two off for the performance and getting Sean to the church on time! 

Time flies and we're keeping busy.  Pretty soon the school year will come to an end! 

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