Wednesday, July 31, 2013

Midsummer Check-in

Oh my.  June 20th.  That's apparently the last time I have posted any updates and I'm told I am worrying the crap out of people... so so sorry!!  

To immediately address the elephant in the room, Quinn is here with us and is enjoying her summer :)

Actually, that is part of the reason the entire month of July has flown by with nary a word - we have been keeping super busy with lots of fun, albeit quiet, family time.  The first week in July was spent at a beach house in York Beach, Maine.  This is our third summer of the past four (we skipped last year only because I was due to have Quinn May 31st).  If you live anywhere in the northeast, this town is a little-kid haven, circa 1957.  A more detailed post to come but seriously - check it out!

Quinn, Daddy and Reid hanging on our porch in Maine
Nanny, Quinn & Mommy at The Children's Museum of New Hampshire
Reid, Colin, Daddy, Quinn, Grandma & Nanny
celebrating the Fourth of July at Short Sands Beach, ME
The Three Musketeers - our last day in Maine
Long Sands Beach, ME

In addition to the regular summertime activities - block parties, beach, backyard laziness - we had some very special guests mid-month.  The Ingram family has been introduced a couple of times on the blog (here and here) but in brief, they are the family of one Trek Atlas Ingram.  Trek was born (in his driveway) on April 11, 2011 and passed peacefully (in Thailand) from Niemann-Pick Type A on June 21, 2012.  Brett and I have been incredibly supported by the Ingrams during our journey and of course jumped at the chance to meet them.  Chelsea came with Peyton and Conner, Trek's older brothers, for a few days this month and I have been lapped by not one, not two, but three of Chelsea's posts.  But she's done such a darn good job of capturing our visit that I'll defer to her summaries for now.

our first full-capacity mini-van trip -
the Ingrams (less Jarrett) + the Linzers = 8!
She Who Makes the Impossible Possible
(i.e. Chelsea - the only person to
successfully hold Quinn outside of me and Brett
in 4 months)

We've been equal parts busy and homebodies this summer.  Quinn is still pretty happy and content, but is also officially in End Stage Liver Failure.  We are seeing a number of clinical signs, which are growing by the week - and sometimes by the day - and it is  difficult to reconcile with the happy, vocal baby in front of us. She is excreting thick green bile from her mic-key during venting, has pin-prick red marks all over her back which are now making their way to her chest, shows obvious signs of ascites (fluid in the abdomen), is sleeping quite a bit more and has weened herself down to just three bottles a day (total of 8 oz).

Colin & Quinn, hanging in the backyard
first time back at Long Beach Boardwalk, post-Sandy
Sleepy Sleeperson

... there is something to be said about being sick from birth.  If any one of us felt the way I believe she feels on a daily basis, we would be laid up in bed and miserable. Quinn, however, doesn't have a point of reference on feeling good.  That's sad for sure but at the same time, it allows her to live not dwelling on the fact that she feels like crap and instead enjoy the good time she does have.  Which, in turn, allows us to live not dwelling on the fact that she feels like crap and instead enjoy the good time she does have.

loving Reid's entertainment
I call this one "Catharsis"

It's been hard - much harder of late - to process all of this.  Quinn's deteriorating health, coupled with a number of other factors, really has put this in front of us and wondering truly how much time we have left.  Thankfully her spunk keeps us on our toes and helps hold her place as the light of our family.

I'm gonna getcha... no escaping Quinn's awesomeness :)