It seems surreal that Gavin is now three years old. When I think back to when we received a prenatal diagnosis of Down Syndrome, heart complications, GI complications and many unknowns in regards to survival it seems like such a foreign place to me. It seems like ages have passed since we spent hours by his hospital bed praying desperately that God would spare our son.
Fast forward three years and our world is completely different and so full of true happiness. Gavin is thriving in so many ways! He's pulling up to stand and getting so close to being ready to walk. He is doing great with eating purees and is well on his way to eating solid foods. He is signing and babbling all the time. And he is always giving kisses. The kid has never met a stranger. He wants everyone to say hi to him and hold him so that he can give them a kiss.
We joke that he's like a little old man because Gavin will yell at you if you walk into the room and don't say hi to him. He will also throw your cell phone across the room if it's around when you're supposed to be spending time with him. If you're holding him and aren't looking at him or giving him your undivided attention, he will bring your face back to his so that you are looking at him when he wants your attention.
His laugh is infectious. When he really starts cracking up at something, it makes us all laugh until we start crying. He is also starting to hit the troublesome toddler stage a little bit. If Lorelai gets too rough with him, he has started holding his own. They love each other so much and they play amazingly well together, but on the times when they fight...well they fight just like typical siblings do. Developmentally, it is great to see! Gavin is extremely opinionated and it has been amazing to see him go from being indifferent of so many things to really caring about and having true opinions on what he wants and doesn't want.
So to be where we started and where he is today is nothing short of a miracle.
There are always underlying health concerns. Gavin doesn't have a pulmonary valve in his heart and it is causing pressures to rise in the right chamber of his heart. At some point, he will need to have another open heart surgery and then hopefully any valve replacements after that can be done through an artery in his leg. The procedure has already been done in pediatrics elsewhere in the country, but the next surgery would involve putting a conduit in place for future valve placement. The trick is balancing intervening when he is so young with making sure something is done before the pressures get too high. If the pressures grow too much before intervention, there is a risk of losing the ability of the right side of his heart to work. We don't know exactly when the next surgery would be but it will be sooner than we initially expected. He still has two hernias that are monitored regularly and luckily no surgery is needed for either of those right now.
We are also waiting for a swallow study to see if anything from a medical standpoint is impacting his ability to eat solid food. Life is full of doctors and therapists, but it has been a long time since he has had a hospital stay. Our normal is always evolving but there is such relief in not living in hospitals or with a colostomy anymore.
I know this year is going to be full of more incredible breakthroughs for our little guy. This is going to be the year that he walks and talks. I can feel it. And I cannot wait for the day that I hear that little voice say "I love you."