Summer Boy
I’m happy to report that Milo has been doing amazing. Milo has slowly been gaining weight (he had lost a lot and wasn’t gaining this spring). He has been eating like a champ! He rarely comes across an option he doesn’t like and screams THANK YOU with a hand in the air until he gets whatever morsel he’s desiring.
Milo’s dietician has slowly been Weening his g-tube feeds. We have been very pleased with his calorie intake but more cautious Weening because of hydration. Milo was struggling learning to drink by mouth. We tried every cup. Straws, 360’s, open cup, plastic shot glasses (no, really. Speech therapy sent me home with a dozen mini red solo cup shot glasses), slow flow cups, cups I didn’t know existed. And of course. Like everything else in life. The cheap take and toss cups were the winner! It just took one really hot trip to Arizona to motivate the big guy to drink more consistently. And now just like food he screams THANK YOU and lunges at his water cup, and anyone else’s, all day long.
Today we met with nephrology and as our APRN entered the room and saw our maniac of a toddler sprinting around the room pulling up on everything and trying to break into locked drawers and cabinets it was hard not to be amazed at the chaos. He seems so “normal” or as doctors always refer to him as “appropriate”.
We truly have been enjoying a crazy and almost normal summer with our kids. Sure, our normal looks different- it requires more planning and attention. But we have vacationed, swam in the lake and pools, Milo has eaten in restaurants with us, bbq’d, enjoyed frozen treats with his sister, ran around parks, been bit by mosquitos, gone for ranger rides, jumped on the trampoline, and has truly been living it up. Doing basic toddler shit.
Milo aced his appointment with flying colors. Labs looked great, ultrasound showed growth to his Nemo fin kidney. And function in both kidneys look normal. We will follow up in a year. As more and more of the specialties space out his appointments more our lives start to feel more and more basic. Definitely more manageable.
Considering last summer Milo and I were spending about 3 days a week at outpatient and countless drives downtown. Life is good right now.
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