Cleft Clinic Day

Today was Nora's first "Cleft Clinic Day", a day dedicated to seeing a variety specialists that then meet, compare and summarize notes and recommend next steps.  It was an exhausting day but a good day. 

Here's the low down ... we saw:

1. The psychologist - developmentally Nora is on track, no concerns there.  The psychologist will play a bigger role in Nora's life as she goes through milestones (preparing for school, entering middle school, etc.).

2. The speech pathologist - this is an area that needs more focus.  Nora's speech is quite delayed.  She continues to see a speech pathologist in our home twice a month, but the cleft clinic speech pathologist has requested that we move to weekly sessions with the local speech pathologist.  We have seen progress in the past six months since surgery, but there is definitely more progress to be made.

3. The ENT - aside from a build-up of "Asian" wax, Nora's ears look great.  No hearing test today as she had a hearing test with our local ENT in March and the results of that were fine (it's not uncommon for cleft kiddos to have a hearing deficit).

4. The surgeon - this was our favorite part of the day.  At time of surgery, at suture removal and at Nora's follow-up in January, the surgeon had some "labels" for Nora ... many of which had to do with her survival instinct and the fact that she is quite the little warrior.  It is really quite easy to see that Doc is enamored with our Little Miss.  For now, no more surgeries in the immediate future ~ her lip and palate have healed beautifully (looks like there will be no cool Kindergarten tricks of being able to squirt milk out her nose, ha!).  In a few years, he will likely do a slight revision on her lip and nose.  And, as she loses baby teeth and as she prepares for adult teeth, we will enter the world of orthodontics and bone grafting (we'll talk more about that when the time comes).

5. The dentist - we also loved the dentist (although she looked entirely too young to be a dentist ... I think the ENT is likely younger than I as well ).  She was so good with Nora!  Cleft kiddos (as well as adopted kiddos from China that likely did not have the same level of prenatal care we often take for granted) generally have a predisposition for poor enamel and decay.  Surprisingly, Nora's teeth looked great (yay!).  She is missing one tooth where her cleft is, but that will also be dealt with later.

Between each of these sessions, there was waiting which lent itself to a bit of socializing with other cleft families with kiddos of all different ages.  We met a mom there with her 9 year old son and his little sister (5), both adopted from China.  They also have four other kiddos at home (three from Ethiopia, another from China), and they are in the paperwork process to adopt a fourth from China.  Humbling ... thankful for these opportunities to connect!

So, that was Cleft Clinic Day #1.  This will be annual "event" with more frequent visits to specialists as needed in-between.  I was quite proud of Nora for doing so well, and once again I was surprised at how relieved I was when the sessions were over ...

Hand-Me-Downs

I am thankful that the kiddos are content with hand-me-downs.  They (primarily Samuel and Lydia) even look forward to their older siblings (and in Lydia's case, her friends and cousins) passing down outgrown clothes.  Of course, Nora knows no different, but we are sure having fun dressing her in Lydia's hand-me-downs!

Lydia - 16 Months (April 2011)

 

Nora - 2 years (July 2013)

 

Lydia - 17 Months (May 2011)

 

Nora - Nearly 2 (June 2013)

 

Not only do clothes get handed down in the family, other "stuff" does as well - including bikes.  Jack has always gotten the new bikes, and Samuel and Lydia have graciously grown into Jack's hand-me-down bikes.  For the first time ever, Samuel has outgrown his bike, but Jack has not.  Samuel has been pedaling away this summer on a bike that is clearly too small for him, but he does it with no complaints.  It was quite an exciting day for Samuel when he found out that he would get to pick his own, brand new bike. 

Samuel - July 2013

New Bike ... Jack's Outgrown Shorts and Polo (**Grin**)

The Beach {7.08.2013}

On Nora's actual birthday we wanted to do something that she would enjoy.  We brainstormed with the kids and had some ideas, all outdoor activities.  Unfortunately, the day wasn't exactly what we planned, but the weather did clear up enough that we got to go to the beach (we are fortunate to be within driving distance of nice beaches along the Lake Michigan shoreline).

Despite getting rained on a bit, the frigid water and the cooler air, the kids had a great time!  I love that the beach can entertain our children, even with their age differences.

Celebrating Our Girl {Nora's 2nd Birthday}

This weekend we had the privilege of celebrating our girl.  Nora turned two today!  Last year we had a low-key celebration for Nora, just our little family celebrating with cake as Nora turned one, praying her home and only anticipating the one day when we would get to celebrate her birthday with her HERE, with us.  It is humbling, completely humbling to see how God has brought our family together, the way He has woven our hearts together.  We are filled with gratitude.

Love that this shirt was a gift from my parents last year when we were celebrating Nora's 1st birthday without her here ... thank you, Grandpa and Grandma, Nora wore it proudly today!

 

Amidst the celebration, I cannot help but wonder how Nora's birth mom feels on this day. Certainly her heart must ache over the loss of her beautiful daughter, the daughter we share. This is a day that we celebrate, but it may also be a day that Nora feels loss as she grows older as she learns more about her birth story. And, there is the part of me that also grieves over what I don't know, what time was she born? How much did she weigh? What did that first cry sound like? So often life is filled with joy and hurt, often beautifully orchestrated together. As I've heard other wise ones say, it is often the hurt that amplifies the joy and makes it that much sweeter.

Confession time, you know, in case it's not obvious, I was a little giddy planning a summer party since the the other kiddos are all fall / winter babies!

 

"Lawn Art" courtesy of big brother Jack who had been planning to mow Nora's name in the backyard for weeks!

 

 

 

 

Check out the line of drool ... someone was excited for her very own cupcake!

 

 

Happy Birthday, Little Miss!  So thankful for you and all you bring to our family!!!

Blink {Baseball Photographs}

How often I find myself wishing I had my camera or wishing I was faster to get the "perfect" shot to capture a moment.  But, that is just not realistic, and sometimes I find that I put too much pressure on myself to get the "perfect" picture and I end up missing the moment.

I adore Angie Smith.  Love. Her.  I "met" her (never in person, but that would be A.W.E.S.O.M.E.) after Owen's diagnosis, turns out we were in a similar season together.  I've followed her blog since then, and I've read all of her books.  In her most recent book, Mended, and on her blog she describes a beautiful moment when she wished she had a camera.  Instead she took a mental photograph.  Blink.  In a way only Angie could describe, she goes on to "capture" life's moments, the hard, the beautiful, His gift, all of it, with a mental photograph, a blink.

I am trying to intentionally do that (but capturing a few of these mental photographs on this little blog will surely help this aging Mama remember as well).  Some recent moments that I don't want to forget ... most of which seem to have happened at the ballpark or are baseball related (no surprise since we do seem to spend a lot of family time at the ballpark in the summer).

Jack, at a recent game, on the pitcher's mound, muscling his way out of a tight situation and saving himself with a key strikeout.  A little fist pump (not prideful) and sigh of relief as he leaves the pitcher's mound.

Blink

Samuel, rounding third base and running to home plate with a cheesy grin on his face after hitting a home run in his coach-pitch league.

 

Blink

 

Lydia, rationalizing with me that she cannot get different clothes on for Jack's game as she doesn't have any arms (said arms are tucked behind her back).

 

Blink

 

Nora's look of pure happiness as she gets her first icee-pop at the ballpark concessions.

 

Blink

 

Jack, on the way to pre-game practice, bowing his head with his cap over his face.

Blink

 

Samuel recovering a fowl ball and turning it in for a quarter which he promptly exchanges for two icee-pops, one for him and one for Lydia.

 

Blink

 

Lydia and Nora, arms around each other while Lydia "chats" with a little friend at the ballpark who is asking about Nora's lip and Lydia simply explains that Nora's lip was "cut" and is now "fixed".

 

Blink

 

Lydia sitting on the blanket, chewing her Big League Chew with her baby doll bouncing on her lap, watching her big brother play ball.

 

Blink

 

Samuel sweetly taking Lydia's hand to walk her to the nearby park for a break from watching Jack's game.

 

Blink

 

And, there are times when I do have my camera and do capture a few shots such as these.

 

Jack warming up

 

 

Samuel playing catch to pass time

 

 

Sisters waiting for the game to begin

 

Blink ...