The Paauwe Report

Are you watching Hopkins 24/7? You should tonight!

Just wanted to let you all know about the Hopkins 24/7 program that is airing on ABC as a multi-episode special.  Tonight it will show Dr. Jallo, Avery's neurosurgeon, helping a child with a brain tumor.  You can check out the info for it at http://www.hopkins.abcnews.com/episodes/5.  The website even features Dr. Jallo's profile on it (http://www.hopkins.abcnews.com/dr_profiles).  Take a look at the videos about Alexis and her brain tumor that are available under his profile.  You can see him "in action" in them.

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Jon and I watched the episode that aired last Thursday...boy, did it ever bring back a flood of memories!  I could recognize the "sounds" of that hospital, especially the surgery area and the Children's Center instantly, no matter where I was in the world.  I know those are things that will stay with us forever.  We even recognized a couple of the nurses last week.  Honestly, it was odd to be looking in on it from the outside, per say, after spending so much time living it.  We felt so deeply for the families and their journeys.  I guess it is so easy because we know those feeling ourselves...first hand.  Anyway, we just wanted to share this with those of you who have been following Avery's journey and might be interested in seeing the man who has taken Avery, safely, through 3 brains surgeries and the hospital where she has endured it all and where we have spent so many hours praying and hoping and believing that anything is possible with faith and a great team on your side.

So, watch with us tonight, if you can.  It is on at 10/9 c on ABC (following the Grey's Anatomy rerun).

Peace,
Holly

NO GIFTS EXPECTED...

but since some of you have already insisted...and want to know what Avery "needs"...

I put together a little document of items we are looking to get Avery in the near future.  Some are necessary to replace those items she is using but is losing this week when First Steps ends (FS owns them and we must now find our own).  Some are items that will make it easier for us to do some home play/therapy/cause-effect with her.  Please realize that we would NEVER expect anyone to buy her any of these in their entirety...please only consider a gift amount towards their purchase...and ONLY if you feel you must.  We really DO NOT expect gifts for this celebration...it is about celebrating the journey thus far and the possibilities and hopes for Avery's future.  We have received the greatest gifts so far...having Avery with us still...3 years after the devastating diagnosis...and having more hope for her potential than we could have believed at that time.  We are truly blessed by those things!  And we will be more than blessed by your presence alone for the celebration on Saturday.

With that said, click here to see the document if you still need an idea...

Download giftideas2.doc

Much love and thanks,
Holly

YOU'RE INVITED!

Click on the file below to see what to!

Download bday3.invite.pc.97-03.doc

Please feel welcome to join us in the celebration!  We appreciate everyone who has followed Avery in this journey (reaching 3 years now!) so far.  We feel like turning 3 is a big milestone.  Avery starts special services developmental preschool later this month and we are looking forward to this new opportunity that will, along with us, continue to challenge her and push her to achieve her highest potential.  This opportunity comes with a downfall though...it means that she has aged out of the First Steps early intervention program.  This bring sadness because it means we will no longer see all the wonderful ladies that have been a part of Avery's First Steps therapy team...a group of ladies who have worked hard for Avery and who have championed and celebrated her every success and who have worried and fretted themselves through all her medical interventions and continued seizure activity.  To be sure, these woman will all remain a part of our lives in some way, but to not see them every week will be such an adjustment.  They have been so good for Avery and Mom too!  We can't thank them enough for their work and their commitment to the jobs they do!   Please don't be surprised if you see me shed a few tears through this transition.  First Steps Ladies...if you are reading this...Jon and I thank from the very depths of our being for ALL you have given of yourselves to our precious Avery.  Each of you have touched us in profound ways and made a huge impact on not only Avery's life, but our whole family's.  Please accept our immeasurable gratitude!  You ABSOLUTELY always have an open invitation to call...stop by...whatever!  You have been and will continue to be a beautiful part of Avery's extended "family". 

ALL:  Please send me an email at holly1224@sbcglobal if you think you can help us celebrate on Saturday.  We would love to have you!

The children (all have had hemispherectomies) and the Moms on Sunday, June 29th.  2 children/Mom combos missing that couldn't be there on Sunday too.

I promise...I will update in full soon!  For now...just know...We had the most AMAZING time in Kansas meeting up with the other HME families we "know" through the Yahoo group.  I can not put the experience into proper words...just know that we were hugely affected by this gathering and we CAN'T WAIT to see everyone again next summer!  Check back soon for links to pictures (actually, go here for now hmegathering2008.snapfish.com/snapfish) and additional SPECIAL FRIENDS links.  I know that there are so many people who struggle and no shortage of people to lift up in prayer, but I humbly ask you to keep each of these families in your prayers through the weeks and years to come.  It is a long journey, though we all have risen to the challenge so far and are eager to continue rising to it in the many days to come (God willing)!

Love and Hugs,

Holly