He's a big boy now

T had his cardiology appointment today. 
He was a total rockstar.
For the first time EVER he didn't cry or squirm one bit for the duration of the EKG and Echo! 
Amazing!

I wish I had been there to see it.  Jason took him.  Tristan got to go too.  I hoped he would check out the Echo stuff, but he said he was too busy watching Curious George.  :)

Weight is holding steady right around 27 lbs and he is now 34 inches tall. 

His sats were a "perfect" 85 and Dr. S said his Glenn site is wide open and his coarct is unchanged from the last time.  The valve leakage is also the same as it was 6 months ago. 

By the way...I still can't believe it has been 6 months since his last visit to cardio and we haven't had any issues.  None whatsoever!!!!

Oh, and speaking of time between appointments...I am in a state of shock as Jason tells me he does not have to go back in for...wait for it...9...that is N-I-N-E months!!!!!!!!!!!!!!!!!  Combined with no GI appointments (after December), that makes...hold on, let me do the calculations...ZERO appointments (except OT) until next SEPTEMBER?!!!!!  Is that POSSIBLE?!!!!  Shock, I tell you.

                                An actual conversation between Jason and Dr. S:

J-What are your thoughts regarding the Fontan?

Dr. S.-I don't even want to discuss it until we are close.  And although it is not common practice now, within 5 years I expect to see recommendations changing to delaying the Fontan for as long as possible.

Perhaps that is a paraphrase rather than a direct quote, but to translate...his sats are great...there is no stress on his heart...since the Fontan causes all kinds of liver issues etc...we are not even going to talk about it. 

Have I mentioned how happy I am that Dr. Stefanelli is in charge of Tiernan's care? 

Finally, as if that wasn't enough awesomeness, Chris gave us the go ahead to d/c his Lasix. 

wha-wha-WHAT?! 

Cold turkey.  Gone.  See ya later diuretics!

*****Confession*****
As exciting as this is, I am nervous.  Last time the Lasix was d/c'd he was in congestive heart failure within 2 months.  Now, I know there were many other contributing factors there...like an impossibly narrow aorta, so I am not spending much time worrying, but there is some mild concern.  Please pray all goes well and this does not add any stress to his heart function.

I'm so proud of my big boy.  I'm sad that this is even a necessary milestone, but it is. Just as Nurse Jodi said, once he is 2 he will cooperate so much better for the echos.  She is so smart. 

And Tiernan is so awesome!  :)

Oh say can he say...

Mama...and occasionally just Mom
Dada...and occasionally just Dad
Bubba...meaning Brother
All Done...usually comes out sounding more like "Ahhh NUN" 
Get Down..."geh dahn"
Please..."eeez"
Again..."ahhh GEN"
Uh uh..."un UHHH" with a a nice consistant sing-song rise and fall on the the second Uh.  Oh.  and a head shaking no as well.  This is said in response to almost everything.  If it weren't so adorable it would be annoying.  :)
Uh huh..."uh HUH" to be said with a heavy emphasis and an emphatic single head nod on the HUH.
Go..."doh"  and no, he has never seen the Simpsons.
and slightly...okay quite a bit...out in left field...
Owl.  Yep.  Owl.  He saw one on TV and completely unprompted by me, he said a clear Owl!
Up.
Choo Choo...."tsoo tsoo"
Everything else is "abba".
(resist the urge to sing Dancing Queen...he's more of a Take A Chance On Me kinda kid)
Every so often he points to an apple and says "abba" so he's kind of right on that one. :)

Oh.  And I almost forgot...
AhChoo! 
That one usually happens several times in a row and, although sometimes it is random, it generally comes as his imitation of Daddy sneezing.  :)

As I write these down I am pretty impressed with his vocabulary to date.  He is significantly delayed but this is solid progress!  With his lack of words we still have to endure a lot of ear-splitting screaching but that should only improve as his vocabulary expands.  I really can't wait to hear that little voice and all the complex thoughts he has going on in that adorable head.  :)

A sincere "Great!"

For most of the past 2 years, when met with the common question, "How are you?" I would respond with a cautious "Okay."
But on Thursday, for the first time in a long time, I answered that question with a confident "GREAT!" 
And it sort of surprised me.  I wasn't fully expecting it.  But it made me feel even better! 
And that is when it hit me. 
We have made it. 
To that stable place I had heard about. 
Here we are.
And I suddenly thought of several moments from that hellish first year.
I vividly remember one night in the Mary Bridge PICU when things were not going well.  Tiernan had just been officially declared to be in severe congestive heart failure again.  We were trying to decide whether or not to transport up to Seattle for surgery or if he needed to go down to Stanford instead, and things were just looking so bad.  He was screaming and screaming and I had a Terms of Endearment Shirley McLaine moment and lost my mind at the nurses station.  And at that moment, Jodi, one of our beloved nurses from cardiology, stopped me and said with a confidence that I am not totally sure she believed (knowing how Dr. S. has recalled that time with Tiernan), "This. Is. Not. The. End! Tiernan IS going to get through this.  And you ARE going to be seeing him eat and grow big and strong and you ARE going to be going crazy  dealing with the terrible twos and ALL of that!" (now that may not be a direct quote, but it is close.) 

And we are here.  Terrible Twos.  Eating. Big and Strong. 

Thank you Jodi!!!!  I love you!  You have no idea what that meant to me.  You have kept me sane more times than I can count.

And I thought of a day I had taked Tiernan over to my beautiful friend Jesse's house for a visit following his DKS/Glenn. 

He was on continuous GJ feeds 20 hours a day and medications upwards of 15 times a day.  Jesse's son, Luke was 3 and thriving!  She went to pull his meds...2 syringes.  2.  And I sat there fighting back tears and wanting so badly to be in that place.  And I said something to that effect and Jesse reminded me, emphatically, that we would someday get there.  Patience. 
And we are here. 2 syringes.
Thank you Jesse!!!!!  I love you.  You are such an amazing gift from God. 

And I thought of every time I was feeling completely hopeless and convinced fully that Tiernan would never get rid of that stupid tube.  The encouragement from my beautiful "sister" Heather telling me all about how her Asher was finally eating.  And his tube was gone.  And one day Tiernan's would be too.  And to just. be. patient.  And to trust God.  And, although, I have not always waited with grace, I was patient.
And we are here.  No tube.  No chronic pain for Tiernan. 
Thank you Heather!!!!  I love you.  You understand what few others do.  Thank you for your wisdom.

God has blessed us so completely in all things.  I am so thankful for these and countless others for their steadfast encouragement

And the fact remains, we have no idea how long we will stay in this wonderful season, but I am going to live it to the fullest.