This boy's life brought to you by 4 chambers

I still recall, vividly, looking at a list of acceptable sports and activities for a single vent child. The list for kids like Tiernan pretty much boiled down to golf. 

So now I would love to show you all the things he is doing courtesy of the magical Dr. Hanley and his team of superheroes. 

Tiernan can ride any ride he wants, as long as his height is right. These happened to be the big swings. Not the kiddy swings. 

Tiernan is outside running and playing and riding his bike as much as possible. He doesn't ever get tired!  

Lacrosse!  I still cannot say how much I love this. 

Tiernan has been in 3 parades in his life. Twice for the UP Duck Parade and just last weekend in the Daffodil Parade. In the Duck Parade he had to ride in a wagon in order to make it down the parade route. On Saturday he walked/ran a total of 4.5 miles!  He looks just like all the other kids!  It's amazing. 

Today Tiernan started Rocketman Gymnastics!  This was his first attempt at climbing the rope. I am so impressed. Hahahah. 

His favorite part of class was bars. He ran his feet up the mat and then flipped over the bar (with some assistance) and pushed up and kicked his legs back and forth. 

It was an entire hour of running and jumping and climbing and tumbling. I think it's just amazing. 2 years ago we couldn't have dreamed this would happen.

We are forever grateful to the unbelievable team of doctors and therapists who have helped and keep helping this boy reach his potential. 

Sometimes our journey overwhelms me

Recently we started Tiernan back at OT. A few years ago his amazing therapist Amanda exited him. Mostly because he was doing so well, but also because she had split from her business partner and there was a non-compete situation. We always knew that when he started Kindergarten and the "demands" increased (needing to sit and attend to a given task for more than 3 minutes) then he would probably need to start again. So when his teacher started saying he was distracted and distracting others, we decided to check in with Amanda and see if the non-compete was over. And it WAS!!!  So we said sign us up!  

Flashback 6 years:

This is Tiernan at 6 months. Exactly. He had just started with Amanda a few weeks prior. She came to us at our house because he was so fragile and couldn't handle the 30 minute car ride it took to get to her. 

He couldn't roll over or sit up unassisted. (For comparison, Tristan rolled over at 2 months and sat up at about 4 months. On his 6 month birthday he began to army crawl.)

Amanda had to teach him every little movement that goes into being able to do the things healthy babies just figure out on their own. He finally rolled over on his own and sat up without help when he was 8 months old. (Again, for comparison, Tristan was crawling on hands and knees and cruising around the furniture by 8 months). 

This was Tiernan at 8 months. Finally sitting up without trouble. 

Amanda was finally able to get him crawling just days after his first birthday and walking by 15 months. She was the one who got him to eat and drink enough by mouth in order to get rid of the stupid tube by his 2nd birthday. She has encouraged us and supported us at every turn since he was a tiny 13 pound 6 month old. When he didn't respond the way his GI docs anticipated and they told me the way he was behaving was "impossible" (even though I was watching him do it), Amanda backed me up and validated me.  She brainstormed with us to find solutions to the countless challenges we have faced.  

She has celebrated every milestone with us and I have sent her updates during the past 2 years when he didn't see her. 

Tonight was the first time I got to take him to OT and see Amanda since well before his bivent surgery.  Tonight as he was jumping on the trampoline, she was beeming. She said how she looks at him and can't believe it. How she still just thinks of that tiny 6 month old. And now he's this big active boy!  And I was suddenly overwhelmed by the enormity of his journey and just started crying.  

Even writing this, hours later, I'm tearing up again. 

Everything Tiernan can do is honestly thanks to this woman.

He would not be the kid he is today without her. 

Absolute truth. 

We love Amanda!!!!!  

6 years ago he went down the single ventricle path and today he is a stable bivent.

Tiernan has been talking a lot about this first Santa meeting. 

Wednesday we had his cardiology checkup. It was the first one since September!  That is the longest between visits since well before his bivent surgery. He continues to thrive and blow us all away with his energy and vocabulary. (He's especially fond of adverbs.)

Today also meant labs for the first time in 2 months. He was NOT as excited about this part of the visit. But when we arrived, there were Santa and Mrs. Claus waiting to see kids! He chose to do his blood draw first (see below for photos of that awesomeness) and then went and told them all about when they came to see him 6 years ago. He and Sammy left with some gifts and we made our way to cardiology. 

A bit more about the labs:

He has always screamed and fought it like crazy. I would have to hold him on my lap and hold his arm still so the phlebotomist could get the draw. Today he did this! Sat all by himself and acted like it was NOTHING!  

All smiles. 

Watched him put the needle in and only winced a little. 

Applied pressure and didn't even bleed or bruise at all. 

Later when I asked what his favorite part of the day was, he pointed to his arm and smiled. I asked why and he said, "Because I was so brave!"

Mine too little man. 

More about his checkup. 

Weight: He's gained a few pounds since September. I'm surprised it wasn't more,  given the amount of curry the kid puts away. 

Height: not showing significant growth since September but Dr. P doesn't think that's too surprising when considering his body has been focusing on more important things. IF he still doesn't shoot up in the next 6 months then he may need to see an endocrinologist to see what's going on. 

Sats: 96. Right on. 

Tiernan was SO great. He generally is these days, but I am just so impressed with how he deals with his lot in life. 

He was as calm as they come during his echo and so it was finished in record time. 

Dr. Park came in and set this graph down in front of me. 

This is a look at his BNP. (Brain Natriuretic Peptide) 

Here is a guide that shows what those numbers mean. The bottom line is that Tiernan's BNP has been all over during the course of the past year and a half. His number on Wednesday was 75! Normal!  So relieved. 

The other news is that while his valve regurgitation is a bit worse, his left atrial dilation (enlargement) has improved!  So it is pretty much an even trade which leads Dr. Park to declare his heart pretty much unchanged...read: STABLE. 

The one med change we've made is to increase his Enalapril (blood pressure) to twice a day. He had been cautious because it had caused his BP to be too soft when he was post op. It also has a negative impact on The Kidneys so, due to his kidney failure status, he was only on the smallest possible dose. 

Now The Kidneys are happy (all his labs revealed beautiful numbers even his nephrologist will be proud of....which is really saying something). 

So it's time to up the offense and increase his Enalapril. 

Dr. Park thinks it is reasonable to hope we could get 10-15 years before he needs Dr. Hanley to get back in there. Until now he hasn't said more than 5. Of course we can't really tell, but that is a great new prognosis. 

And then Dr. Park said he didn't need to see Tiernan for SIX MONTHS!!!!!  We don't need to go back before JUNE!  That is only the second longest we've ever gone between appointments. And even better, no labs until then either. 

Except we have an appointment with Dr. Hanivold (nephrology) on the 29th and she WILL want to see how The Kidneys are handling the new increased Enalapril. But after THAT, then hopefully we will have several months between labs. Fingers crossed!