It is likely that P will need a couple of less-invasive procedures in the cath lab (one to test the electrical pathways again and make sure he’s not in danger of an arrhythmia, and one to further close his ASD). But we can handle quick over-nighters at the hospital for these types of procedures. We’re so grateful things are holding steady!

I would upload a photo of P wearing nothing but a diaper, hospital anklet, and sandals in the exam room (playing with cars of course). But I don’t have my phone  (which contains the photos)with me, so instead here’s one that Braden took on Monday (also with cars). You’ll just have to imagine that you can see his pot-belly and chicken legs ♥

and someone scary who was too busy collecting black turtle necks, etc. to find something better than this wig (but really, is there anything better than this wig?)

Our awesome neighbors were out and about. Patrick loves to play with Mia and Ruby. Mia is fun to chase and Ruby usually has toys that he likes to “borrow” from her. Sharing is one of his talents, as long as it’s other people sharing with him.

Sometimes when you are visiting friends on Halloween, you just need to take a break to play with rocks. (Especially if Daddy is talking about Football–then you might as well make yourself comfortable.)

Seriously, though, playing with rocks was probably Patrick’s favorite part of the evening. The next best part was trying to lock/unlock the door when we got home.

We love our little Stig!

Tonight we are packing our bags to head to Salina, UT tomorrow to be there for the funeral this coming Tuesday. As I was prepping my camera bag I realized that I had not downloaded the images on my memory card from our last trip to Utah at the beginning of July. In the batch of neglected photos were some that we took when Patrick met his Great Grandma Robins about a month ago.

Seriously one of the sweetest people you could ever meet. We are grateful that Patrick was able to meet her, and I’m sure he will hear many, many stories about her as he gets older…

At first he sat back, pleased with his station in life. The Sultan, we like to call him.

Then he actually sat up and started rocking the chair by leaning forward and back repeatedly.

This made him quite happy!

(I handed him the shoe to distract him from his urgent NEED to have the camera strap…)

Heaven help us, he wants to be just like daddy…I suppose he could do worse ♥

Note the heart monitor sticker peaking out of his onesie. Yeah, there was supposed to be a sensor thingy attached to that sticker, but those often came unattached for some reason. I’m sure that you can’t imagine what the reason was.

The cardiologists had Patrick on an Ambulatory Cardiac Telemetry (ACT) Monitor for 21 days so that they could make sure that his heart rhythmn is healthy now that the amiodarone has cleared out of his system. You can see the sensor battery pack by his leg below:

We were pretty sure that things went well since the only time the monitor buzzed at us was when either a) Patrick had pulled off, rubbed off, or otherwise removed one of the sensors, or b) the sensor battery was nearly dead. Yay for no “events”.

Today we saw Beth Rumack at the new Phoenix Children’s Hospital (PCH) clinic {St. Joseph’s and PCH merged, so the pediatric clinics moved to the children’s hospital}. The new facilities seemed nice and very colorful–but it sounds like we won’t need to spend much time there anyway. Patrick’s echo looked good. His right atrium is still enlarged, but it hasn’t gotten enlarger. His tricuspid valve is still leaky, but it always will be. If things continue this way, Patrick may not even need another heart catheter until young adulthood. We will keep seeing a cardiologist once every 4-5 months for now, but only 2-3 times a year will be SO nice. We are pleased with how well our little P is doing and very glad that he had the surgery when he did.

Stats:

Weight: 8.8 kg (19 lbs 6oz) – 30th percentile

Height: 2.5 feet – 50th percentile

Head Size: 90th percentile!!!

And that’s why they call him Mega Head (or at least Aunt Aubrey does).

We are told that his proportions will start to even out eventually–the Glenn procedure is still playing a large part in the crazy growth curve his head size is on. Credit for that is also due to his genetic inheritance (Patrick says, “thank you, daddy!”)

and getting dangerous…

He loves pureed veggies {and a few select fruits}.

He has 3 teeth, and one on the way.

Our little dude is now able to sit without assistance and {rarely} tip over.

When motivated, he can roll to retrieve desired objects.

Patrick looks longingly at his stroller or the front door whenever they catch his eye…he loves to be outside. He pats the grass to hear the noise it makes. He rubs his feet in the lawn, amazed by how it feels. He tries and tries to sneak a leaf into his mouth. How frustrating for him that we never let him quite get one there.

He cracks me up when he concentrates so intently on new objects…

{We try not to think about how sad he will be when it gets too hot for his many walks each day}.

I think his eyes have decided to be brown.

He still loves his daddy.

The sentiment seems to be mutual ♥

In fact, he has graduated from his amiodarone–a once daily med he has been on since he was born. Amiodarone prevents the SVT (super-high heart rate) episodes that Patrick had a couple of times as a newborn while still in the PCTICU. At this point, P has outgrown the dose he’s been on and since they have been planning to take him off of the drug anyway, it is better to do it now rather than up the dose. It will take awhile to clear from his system, so in a month or so we will start a 21-day ACT monitor again (he had one for the first couple of months last Fall). I’m not that excited for the monitor, but it will be so nice to have the peace of mind knowing that the doctors (and us parents) will be alerted if his heart does something funky. AND we are happy to have him off of one more drug. Now all he will be taking is aspirin once a day for the rest of his life (to avoid any blood clots in his heart–particularly the troublesome right side).

Patrick doesn’t need to go back to the clinic until after we’re done with the ACT monitor–so not for two months! After that we may only need to take him every 4-6 months. How rad is that?

We should be hearing from someone regarding physical therapy–Patrick  is lagging a little on some of his physical development. His sternum is wired together, and you can feel the bumps under his scar. As you can imagine, this makes tummy time a bit uncomfortable. Also, because the Glenn procedure re-routed the blood from his upper-body, a natural bi-product is that his head has gotten bigger (in relation to the growth of the rest of his body). With his head so heavy, he hasn’t quite gotten sturdy in the sitting position. He’s a strong kid, though, and he’ll catch up. He just wants to skip sitting and crawling and go to walking–if he had his way we’d have him standing, jumping, or walking (assisted) ALL the time.

These photos are from his last regular pediatrician appointment–he’s getting caught up on the immunizations we had to postpone during the pre and post-surgery time period. (Tia, Patrick’s nanny, was nice enough to come with me to the appointment. Six needles…three in each leg! He was a trooper, though.)