Life Is Better At The Beach

If you have had the pleasure of meeting Milo you already know.

He’s incredible.

He has such a special combination of traits that most likely many of my medical mama friends would agree is unique to our warriors.

His is resilient. He doesn’t sweat the small stuff. Or the big stuff! Kicking his feet through sedation as if letting me know he’s coming back kicking!

He literally never stops smiling. He rarely fusses or cries, but when he does it’s because he knows what he wants.

He is so determined. When he sets his eyes on something, it’s tunnel vision.

He is so social. We can barely get 10 feet on the beach before he is wooing a stranger in a lounge chair. Flapping his chubby hand, whisper shouting “hi hi hi hi!” Blowing kisses and giggling.

But most of all this kid genuinely enjoys life. He’s always looking around taking in his surroundings. Checking everything out and enjoying the ride. He LOVES water. Wants to dive head first into it at all times. He would leap out of my arms into the ocean if I wasn’t paying attention.

We spent the whole weekend at pass a grill beach. I kept finding myself teary eyed (the happy kind) watching him. 2.5 weeks post surgery and I’m sitting here watch him dig in the sand. Less than a week out of the hospital sitting on a float cruising the ocean. So many times we have thought “this is it” the boy is fixed! We can start living our “normal”. All to end up searching for answers again. But staring at him on the beach this weekend. Seeing big sister Charlie share a chocolate icecream with her brother who mere weeks ago after serial dilations and choking episodes had begun refusing all foods. Could this be it? Can we start to slowly let our guards down? Get back to some normalcy? I’m so hopeful for the first time in a long time.

After a couple of days of no sleep, super long g-tube pump feeds and tons of vomit I switched things up. I went back to gravity feeds to see if that would make a difference. After a couple I noticed his vomit was decreasing. I went back to his schedule pre surgery, slower gravity feeds (clamping every so often) and then putting him in the stroller immediately for a walk. He is continuing to improve. He is also back to enjoying SMALL amounts of food. His favorites being Panera soup and obviously bites of sisters ice-cream.

We have just a couple days left before we road trip home. We are going to enjoy every second here.

And then we head home to throw ourselves into all the eating and drinking practice. All while trying to experience everything possible with this sweet boy!