We are quite overdue for an update. Thanks to all who have reached out since our last update to see how our (not so) little man is doing. William has been to Primary Children's in Salt Lake several times since we last wrote an entry, and the theme from these visits was to keep doing what we're doing. William's medication doses continue to be increased to accommodate his growth. During the most recent visit at the end of February, the Head of Pediatric Nephrology recommended that we try stretching out our visits a bit more. Rather than go every three months, we will try every 4-5 months. He continues to have regular in-home blood pressure checks every two weeks (more frequently if he is out of range).

Despite the strange circumstances we are all experiencing right now, William continues to thrive. He takes his daily medications enthusiastically, looks forward to his blood pressure checks and seeing his favorite nurse, and has now shocked several phlebotomists in the last year when he does not cry during blood draws. He is a tough one and he even wears a mask (or two...see picture below) when we go to the hospital.

William spoke about ten words going into quarantine; spending all his time with his chatty older brother has made his vocabulary explode. Their relationship has evolved in so many positive ways, as they rely so heavily on each other for friendship right now. Despite Dylan's frustration with "the sickness" (Covid-19), the boys are so full of energy and silliness. We feel lucky to have these two incredible boys lifting our spirits during the challenging times our globe is facing right now through the pandemic and continued examples of social injustice.

We are on strict lockdown per William's doctors' recommendations. The fact that Covid-related illness is causing instances of kidney failure and blood vessel inflammation is great cause for concern for our one-kidneyed little man and his bottlenecked blood vessels. His incredible nurse from our pediatrician's office comes to our house to check his blood pressure, as they are trying to minimize William's exposure.

Dylan and William are absolute troopers. Dylan has demonstrated impressive patience and maturity in understanding and articulating why our family is being so careful in the interest of his brother's unique circumstances. Since the first week in March when Dylan had the flu, they have only been to the doctor. They’ve not played on a playground or had playdates. We are very glad we live in a place with so much outdoor space to explore, as Dylan would be losing his mind if we couldn't escape our neighborhood where he sees kids playing together and going to camps daily. He is able to do chaperoned bike rides with friends, since he can ride his bike and physically distance. He's also excelling on his new roller blades. Our family has been camping a lot and we're getting very good at finding beautiful new places to explore while avoiding the local and tourist crowds. These outdoor adventures are keeping us all happy and sane, although we are eagerly awaiting the day that Dylan and William can hug their friends and play freely (and Dylan can stop pointing at all the neighborhood kids and announcing that they are not being safe with the sickness). Oh, Dylan.

We're headed to Salt Lake next week for appointments, so we will write another update once we return (in a more timely manner, I hope). We are still trying to figure out the logistics of the trip, but we will only spend time in the hospital to avoid exposure to Covid.