Joy to the world. All the boys and girls...

This photo still takes my breath away. I could never have imagined the active boy we now enjoy. I think Santa gave him a little extra enthusiasm for life that day as well. He takes such joy in experiencing the world. 

Our trip to Leavenworth was full of wonder for this kid. He could not get enough of the snow. He walked all over the place in the 28 degree weather and only complained when he was hungry. (Which was often, but nothing a bratwurst lunch couldn't solve.) 

Tiernan has loved every day waking up and finding out where his beloved elf Snickerdoodles has landed. He talks to him and even invited him to please visit us in Leavenworth. He was thrilled to see Snickerdoodles took him up on the offer. Especially the second morning when he was legitimately shocked to have seen him one moment in the same spot as the previous morning and then the next he looked, that clever elf had relocated next to the coffee maker where I nearly touched him while fumbling in the dark to make my coffee. Phew!  Close call. 

Even MORE shock when Tiernan noticed Snickerdoodle had suddenly joined us in our car on the way home!  

Grandma and Pops are here for Christmas this year and Kathy was telling me a story that perfectly illustrates how Tiernan's excitement for life impacts others. 

Recently she was on a guided hike in Missoula and the young woman who was leading them was talking about how she worked at the U of M Summer Camp. She said how they get to work with so many great kids and then proceeded to talk about this one kid named Tiernan who basically stole the hearts of the leaders. Kathy overheard this and asked more questions and confirmed it was our Tiernan. (As if there are so many Tiernans out there. Lol)

Kathy asked what it was about him that they loved and the leader said he was just so delighted about EVERYTHING they did. His joy is contagious. 

I hope you all find yourselves delighted with the little joys of life in the coming year. Merry Christmas and Cheers to a wonderful 2017!

Life thanks to Dr. Hanley (and a hundred or so other doctors and nurses)

Conducting a wave symphony at the Dungeness Spit. 

Running in and out of the waves. Not a purple lip in sight. 

Cowabunga!!!!!  Suncadia was the best. 

First kids mile race. ✅

Pulling his cousin in the wagon. 

7th Birthday on roller skates. 

Helicopter pilot. 

Countless hours spent racing around the cul de sac with his gang. 

First day as a "grader". 

The big kid swings at the fair!  

Daredevil!  Tall and brave enough for nearly any ride. 

33 laps at his favorite school event...Apex Fun Run!

Occasionally, if he laughs really hard, he does go a bit purple. But that's a small price to pay for an awesome laughing fit during family game night. 

When I wanted a picture of him at school he decided he needed to pose by his favorite thing...the sticker machine. Lol

Me: Tiernan, you are reading really well!

Tiernan: 🙄 Mom. I AM in first grade now. 

Apparently all first graders magically become excellent readers. (If only...)

Isn't this how everyone plays the piano?

Have a great day. 

2 years out and this kid is living life in the fast lane

Today is the 2nd anniversary of Tiernan's bi-vent repair, i.e. The Surgery That Changed Everything. You can read about that if you like here:

http://tiernanstube.blogspot.com/2014/07/wait-wait-wait-what.html?m=0

Tiernan had his cardiology check up about 4 weeks ago and Dr. Park says he's never seen him look so great. He still can't downgrade his valve leakage from moderate/severe, however, the size and other functions of his heart have improved enough that he felt confident enough to drop his evening Lasix dose!  That may be the best med change in the history of med changes!

I have to remind myself from time to time that those medicines are the key to success. Without them he would find himself in heart failure in a hurry I think. So we won't likely see many more significant changes in meds anymore. As it stands now, his meds include:

Diuretics:

Lasix: 20mg ONCE daily 🤗

Spironolactone: 25mg twice daily

Heart rate and Blood Pressure:

Enalapril: 20mg twice daily 

Atenolol: half a 25mg tab once daily 

Blood thinner:

Aspirin: 81mg once daily

Other stats:

Height: 45 inches (just under 4 feet. He is finally showing some good growth there. It's taken 2 years but he's doing it)

Weight: 45 lbs (which means he has gained 10 lbs since returning from Stanford. It's honestly amazing that he hasn't gained double that amount given how much he eats.)

Sats: 99%. I might never get used to the shock of that. I'm so grateful. 

Dreaded Labs:

We did these a week after dropping the Lasix dose and they did show that his BNP had increased (as it always does when we change his diuretics) but only to 98 and below 100 is considered completely normal. 

The rest of the panel looked to be the picture of perfection and even his nephrologist seems excited (although I'm not sure that is a feeling she ever experiences). She was even happy enough to let us reschedule his June appointment for October so he didn't have to miss a day of art camp that week. 

Speaking of camp and activities:

We are here in Missoula visiting family and friends. Tiernan has been busier than all the rest of us combined. All last week he was at his first All Day Camp experience. He had an amazing week with the Outdoor Adventure Camp through the University of Montana campus Rec youth programs. The week was filled with swimming lessons and games. They went to the planetarium and met Smokey the Bear who taught them how to safely and responsibly build a campfire. 

The highlights of the week were the "white water" rafting on the Clark Fork River. The kids got to do the paddling most of the time and he thought it was amazing. He loved the "Rapids" and getting to spin the raft around in circles. They DID have to stop and wait for "the slow poke boat" a lot which was his least favorite part. Absolutely an excellent summer experience for this action loving kid. 

The last day of camp was all about hiking. The photo below, for those not familiar with Missoula, shows him pointing toward Mt. Sentinel and the white spot up near the sky. That's the "M". It is 3/4 of a mile up with a 650 foot elevation gain and 11 switchbacks. It is a rather grueling hike. I actually hate it, to be perfectly honest. Tiernan hiked it with no problem. He said the going down part was harder than going up part.  He's VERY proud of himself. (But not as proud as I am.)

Tiernan and his cousin Evan are like 2 peas in a pod and they had a great time running around together at the park. They are both daredevils of the first order and so when E climbed up on top of the tunnel, Tiernan wasted no time in following him. Of course, once he was up there, he said, "I'm a bit squeamish about heights!"  (Yeah, right!)

They also share the silly genes for sure. 

However, the boy who is squeamish about heights had zero concern about jumping down. 

Just one of the things I love and miss about Missoula are the community events and opportunities for biking just about anywhere you want to go. Yesterday was the Sunday Streets day where the majority of the downtown was closed off to cars. Community members and business owners filled the streets and played games, did crafts, (Tiernan and Tristan built a rack and got to use power tools, to their great delight) yoga and OULA on the Higgins St. bridge, hula hooping and biking in the middle of the street....pure joy in my opinion. 

Tiernan and Tristan are both enjoying the opportunity to practice their piano on Granda's beautiful baby grand. (I'm just thankful Granda has been patient with their noise.)

Today Tiernan and I went on a lovely bike ride around the U of M campus. He was excited to show me the spots of his favorite camp experiences and lead the way around the university. We easily rode around for an hour and when we got home, he was off to Splash Montana for some water fun with Jason. 

That bruise on his arm is just one of many...they are little badges of honor to commemorate every bit of adventure he has had the past 2 weeks. 

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!!!!!