Henry has had a busy couple of months, so I thought I would try to squeeze in a mid-month post! With the holidays in full force in addition to Henry's birthday, we've been blessed with family and friends around us a ton. Which has been awesome! Thanksgiving and Henry's birthday were such wonderful celebrations and I keep thinking of moments that make me smile throughout the day. It really warms my heart to see Henry play and interact with everyone uniquely... he LOVES him some family, that's for sure (so do we:).
Henry is now walking with assistance from couches, walls, refrigerators, toys, all over the place. He hasn't tried walking alone (and his mommas are in no rush for this!!), but the little guy will find ways almost everywhere around the house despite all the locks/gates/etc around now. He is eating more solids, is a big fan of peas, bananas, goldfish crackers, cheese, and of course Cheerios. He still only has two teeth, so we're pacing him with "bigger kid" foods until we get more chewers in there:) Next we'll transition to milk in the "big boy" cup slowly from formula in the bottle! Henry had his first haircut in the end of November. He's now more handsome than ever:) He was very brave and sat still the entire time (with the help of his seat being a "car" and a television directly in front of him!). Very fun memory for the mommas!
Henry has had a round of appointments so far this month that we're happy to report on. The first week of this month we went to the Immunology Clinic for a final "check in" and were told Henry looked good from an immunological standpoint. Apparently we've exposed him to not too many, but just the right amount of germs in the past year to deem him able to fight off infections adequately in their opinion. Which, of course, we celebrated! He had to have some blood drawn afterwards, so the celebration was short:( But, as always, he did great, and the smiles returned quickly after some tears.
He had his 1 year pediatrician appointment with Dr. Woody and it went great. As I pulled out the sheet of questions we had composed (yes, an entire sheet) I was reminded of how fortunate we were as our pediatrician patiently answered them all. Julie and I were given a (very gentle) pep talk on parenting a "normal kid"... wow has the pendulum swung in a different direction... and we were comforted by the fact that many of the concerns we had regarding Henry's eating/sleeping were the same as many other parents. Whew! Dr. Woody acknowledged how great Henry was doing, affirmed that, though slower/smaller than some kids his age, he was on track with growth and development. And with the help of PT/OT/dietitian, she expects he will catch up sometime in the future- so great news!
Henry had a follow up Cardiologist appointment with Dr. Raghuveer and it went well. She was also impressed with Henry's growth and development and answered a handful of questions we had about Henry's future treatment. Nothing for right now, but she wants to see him again in March and she expects we will schedule another cath shortly after that to look closer at Henry's pulmonary arteries (PAs)/heart function. Just like last time Henry had a cath, the team will discuss future surgical options the following Friday and make their recommendations at that time. Lots of different scenarios, but basically Henry will be ready for the RV (right ventricle) to PA conduit+ pulmonary valve and VSD closure once his PAs are about 7mm in size. This would completely fix his heart. When it was discovered Henry had PAs last April, they were about 3mm in size and the echo today estimated them to be at 4-5mm. So, we're heading the right direction! If no symptoms, we will wait. If the PAs don't get to the 7mm goal and Henry needs surgery earlier (SATs trend downward and/or Henry starts having symptoms), they would either replace the shunt and/or complete the conduit surgery and not close the VSD. If the PAs grow at a slow pace, Henry could outgrow his shunt and need a replacement and receive another shunt and not conduit as his PAs wouldn't be ready for the blood flow of a conduit. Ideally he would have "complete fix" surgery next summer... but the other options aren't worst case scenario, just might require more surgeries. I'll upload some pictures/links as we get closer to that time of exactly what those surgery options entail and let the experts make it more clear. So, lots of information, but a good visit!! Our minds are still spinning with all the options/goals/etc, but overall we still feel so fortunate that Henry has these options and that we have wonderful providers to care for him and help us make these big decisions.
We were pretty nostalgic this month remembering Henry's entrance into the world one year ago and every day since I have moments when I'm just awestruck at how lucky we are. When Henry was born, the doctors didn't talk about birthdays. When I think of all the amazing time we've had with Henry that was unexpected, I can't help but feel like we've been blessed with the miracle of every day with him. That's a lot of miracles in one year! I think that's a wonderful note to end on. Have a wonderful holiday season and thank you for all of the love and support you've shown us in the last year- it's the best present a family could receive!
Much love,
Kate & Julie
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