Saturday, November 10, 2012

The Ethan Update

Aside from our vacation, we've had a lot going on in the past month or so! How 'bout an update on this mischievous little boy...

Yeah ... and?

For starters, our first nephew (and Ethan's first cousin) - Johnny - was born on October 1st.  We are smitten with him and, personally, I'm really excited about being an aunt for the first time!

Ethan has big plans in store for the two of them, and it melts my heart to hear him talk about Johnny in such an adoring way.

Also, in the vein of "big family news", my sister is engaged! I am beyond thrilled for the two of them and I'm still digesting the fact that my "little" sister is getting married.  Welcome to the family, Uncle Moo! (For the record, this has been twelve years in the making.  Morgan is my best friend's brother, so Brandi and I are officially sisters.  Or something like that.)

Now, before I go any further, let me say this.  Sometimes I struggle with recognizing the difference between pride and bragging, and celebrating how far Ethan has come.  I'm learning that when I think it's all about me and what a great mom I am, that's a problem.  (Because, let's be honest - even on a good day, I still raise my voice and lose my patience!) But when I sit back and marvel at how present God has been in the life of my son, and give Him the glory for that, it makes me want to throw a big 'ol party.

So, with that said, let's celebrate!

Preschool is going exceptionally well for Ethan now that he understands what's expected of him.  There was a rough adjustment period in the beginning, but all of that is now a thing of the past.  When I pick him up each afternoon and hear about the types of things he said and did throughout the day, it gives me hope that some of what Jeramie and I are trying to teach him is actually sticking.  Some days, y'all, I'm not so sure.  Needless to say, preschool has been a huge confidence booster for him and me!

Along those same lines, he is doing great from a developmental standpoint.  We've had no reason to think that he is in need of any services at this time, and he actually received an evaluation at preschool that noted his speech and language skills are within normal limits for his age.  Praise God!

A mama and her boy

Ethan's left hand has been the topic of conversation lately, as we had a one-year follow-up with his orthopedic surgeon a couple of weeks ago.  The x-ray looks unchanged, except for a slight inward turn.  We're not sure if that is due to a change in the actual anatomy of his arm, or if it's simply a matter of x-ray positioning.  Dr. F. didn't seem too concerned about it and doesn't feel the need to see him for another year.  There's still no need to brace Ethan's arm, which I am more than fine with, but it may be needed further down the road.  Based on what we learned two weeks ago, we still have a long way to go before we need to make any more decisions about future surgeries or interventions - if any at all.

The same day of the orthopedic follow-up, we met with a genetic counselor.  Given that various genes in Ethan's body have been tested, with no genetic diagnosis, we have enrolled him in a study at Duke.  Through this study, Ethan's entire exome will be sequenced to determine if any genetic diagnosis can be made from what they find. While this is more for their research purposes, there is a chance that we may learn exactly what has caused his various birth defects.  The earliest we could hear something would be April of next year, and if nothing is found we'll hear nothing.

I'd be lying if I said I'm not a little anxious to see what will come of this.  There's a very small chance that something they find would change Ethan's course of treatment, but a diagnosis would go a long way towards answering questions about additional children we may have, and even Ethan's future children.  Pray for us, please!

We've also been having some family fun this fall! Three years ago I felt completely isolated and thought we'd never be able to show Ethan the light of day.  If you would have told me then that he'd be in preschool now, and would become such a social kid after a year of very little social interaction, I wouldn't have believed you.  And, I really would have laughed if you told me he would do all those things without catching every single germ that came his way!

Truth is, Ethan thrives on social interaction and he's the healthiest I've ever seen him.  And you know what? My worrying didn't get him to this point.  That's all God - and He is so good.

Fall fun highlights...

Sometimes you just have to go outside and dance in the rain.

Carving a pumpkin with Daddy.  I love the concentrated looks on their faces!

Getting ready to trick-or-treat with Emma and Jackson, aka Hermione and Super Why

Birthday party fun

Rubbin' is racin'!

And just because it's precious...

Y'all have a great weekend!


Neysa said...

Praying for good news to continue with Ethan's arm. It certainly doesn't slow him down one bit!

The pictures are adorable! I can always tell how much personality is bundled up in that sweet boy through your pictures!


Anonymous said...

What a great fall you guys have had... the pictures always...always make me smile. I am reading this as I drink my coffee this morning and it is a very nice way to start my day.

I love the picture of Jeramie and Ethan in the go cart... I bet he loved that!!

I will be praying for the study at Duke.

Love you guys!!

Grandma A.

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