Down by the Banks..

The weather finally broke on Saturday, so we headed to Yardley for a duck race...yes, you heard me right, a duck race, and a boat parade..We sat on the banks of the canal in the sunshine and watched the boats float on by. 

There were all kinds of boats...people in costumes and even a few yellow submarines!  We watched the ducks float down the canal in hopes of a true winner...I couldn't think of a better way to spend our Saturday.

Phish - with two kids

It's in our soul - this Phish thing.  It's no surprise that we'd bring both of our children together as soon as we could.  After all, we want to share our loves with them.  Before kids, we weren't sure what we'd do when the time came.   As we watched the families in attendance start to grow, we knew we'd be there with them.

Patrick has been to many Phish shows already.  He doesn't remember any of them.  After all, we didn't see any shows last summer.  It's ironic that Phish played The Tweeter Center in Camden on the day that Maura came home from the NICU...our home venue, and the last thing on my mind was Phish, even though I'm sure I sent a wave off the bridge in that direction on our way home from CHOP that day.  

So you'd think that when Phish announced they'd be playing Bader field, we'd be all over it.  

We weren't.

We had our sights set higher - or more north - towards Saratoga.  I wasn't sure of the logistics of Bader field.  Would there be shade? How big was the field?  What was parking like?  I couldn't handle the unsurity of it all.  I knew SPAC.  I booked camping at our old familiar campground long ago.  I could do SPAC with two kids.  

But when Marissa graciously offered tickets to the last night of Bader field, I really couldn't resist.  So we packed the kids in the car with lots of provisions and we headed down to Atlantic City.  

Patrick, who'd been a little weary of loud music lately, had the BEST time!  He truly surprised me.  I'm sure I shouldn't be surprised.  After all, isn't it in his blood?  Maura had her share of fun too.  When night set in, she fell fast asleep and he kept on dancing.  Towards the end of the second set, we said our goodbyes.  I've seen many phish shows - too many to count.  I knew that missing a song wasn't going to kill me - even though at one point in my life, I might have thought it would!  We waved our goodbyes and put another Phish show under our belt. 

Until Saratoga!  

A Moment at the Pool...Fishing!?

Just a moment from our week, one to remember always, savoring the summer sunshine early...


Have a wonderful weekend, friends!

A Bonnet for the Scorcher

It's going to be a scorcher today!  Yesterday, I figured I'd make Maura a new sun hat for the pool...something that was reversible and also flexible.  I used some Cloud 9 Organic and some Michael Miller Seafoam Orchid.  I made it from scratch, but I think I'm actually going to do a tutorial for it!  I feel like I spent a good amount of time looking for a specific kind of bonnet and couldn't!  So look forward to a tute soon!

What do you think?  Think it will keep her cool at the pool?

A Standing with No Hands Moment

A moment I'm savoring right now...one that's long time coming.  A moment so extraordinary that I felt compelled to share!  Thanks Amanda for the inspiration!

Grounded

We stayed home today and did nothing.  It sounds completely uneventful, but it really helped us ground ourselves by just being home for the day, something we rarely do.  Patrick has been having a difficult time lately, and maybe we are just moving too fast for him..I think I learned that today.  He was a pleasure to be around.  That kid amazes me sometimes.  We "did letters" today, which is looking at letter flashcards.  I can't believe how many he knows so well...lowercase too!  Now if only I could get him to write them more often.  I know it will come in time.  

I'm making stuffed shells for dinner tonight.  They aren't your usual run of the mill.  They are pesto chicken stuffed shells and they are amazing!  I highly recommend them.  Joe and I are quite looking forward to it.

In the meantime, while I wait for them to cook, Patrick and I will continue playing with trains and thwarting off Maura from our creation.

June 10th...A Year Later

Yesterday came and went rather uneventfully.  We headed over to the pool in the early afternoon for the opening pool social and spent the day with many of our friends.  It wasn't until quite late last night that it occurred to me that it has been a year ago that Maura came home from the NICU.

June 10th...yes, the date won't ever be forgotten.  It's almost like a second birthday.  It was our moment to start our lives outside the dark halls of the NICU.  I took Maura home all by myself.  By June 10th, Joe had taken quite a few days, and we knew it was just paperwork that day.  Maura and I headed to Potbelly where I had lunch one last time before our escape.

Yesterday was much different.  She splashed in the pool all afternoon.  The girl is even getting a tan! I think we have the same skin.  I noticed that while I was nursing her today.  We both had the same shade of tan.  Patrick is much pastier than I am, although he tans well too.  Maura smiled at everybody and wore her little itsy bitsy teeny weeny yellow polka dot bikini and we ate good food until our heart's content.

You'd look at her today and never know she spent 35 days in the NICU.  You'd never know it's been nearly 4 months since her last seizure.  She's doing well.  We just had her reevaluation testing for Early Intervention, and while I've been knee deep in Maura's life for a year, I learned a lot.

Low tone is not just muscle strength.  It's the state of your muscles at rest.  Maura is still quite floppy at rest.  Her fine motor skills are still behind quite a bit.  She has difficulty mastering the use of her pincher grasp and she doesn't know what chewing is quite yet.  Her depth perception is still lacking.  But the girl pulls up to a stand and talks up a storm with all her mamama's and ba ba ba's ..  She's making huge strides.  That's what counts most!

So as we celebrated our lives yesterday, the anniversary of Maura's triumphant homecoming rather slipped away quite quietly...perhaps the best way of all...

An Indiana Jones Moment

A little late this Friday, but none the less, here is our moment!  A cousin moment, to savor always, with his new Indiana Jones Satchel...Hope you have a great weekend!!