William lost weight

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia.

In order to get established with specialists here in Michigan, we had to first visit a PCP.  We found one nearby, but they will only see 2 children at a time (ugh.) So, I took Grace and Juliet in, to get established and acquire a referral, then a week later, took in Alice and William.  Alice had her 8 year old check up, and William was just there for the referral.

Sadly, we found that since his last appointment with the ENT for a follow up, he lost some weight, but grew.  We think this happened because we took him off night bottles when we moved, to protect his teeth, but he apparently is not eating enough to make up for the loss of calories.  So, we're pushing the chocolate pediasure during the day, and trying to get him to eat anything and everything.

And, up until yesterday, our newest insurance was fighting his strensiq prescription, because his ALP levels were too high, because of the Strensiq.  y'all, insurance companies drive me nuts.

Today, though, we received this month's supply, so all is in order yet again.  And we're hoping that by his birthday check up next month, he'll be gaining weight and headed in the right direction.

later days

<what happened previously