Diaries Magazine


By Babyjandbean
Lately, quite a few children with Williams syndrome (WS) are having heart cath's and open heart surgeries as well as other significant medical procedures. I feel for these families and can only imagine what they are going through. Bean has some of the characteristic health problems related to WS (read about that here and here) but his challenges are mild in comparison to others.
Still, we have a long list of specialists and appointments to make sure that we are meeting all of his needs. This morning, I went ahead and scheduled a number of follow up's and new appointments. I was holding off on scheduling these because none were considered critical and I wanted to have his supplemental insurance/medical assistance in place because we pay $50 plus 10% out-of-pocket for every specialist visit and it has been adding up. His supplemental coverage was activated today. Hooray!
This month, he will go back to his GI. He will go for an initial evaluation with a developmental pediatrician at the Child Development Unit and for an evaluation at ENT to have his hearing tested and address snoring/sleep issues. I am waiting to hear back from endocrinology but I also expect to see them in the month of  June to address his borderline high calcium levels. Baby J will head to his PCP this week to address some my concerns about his stress levels and anxiety/sensory stuff.
In July, Bean goes back to his diagnostic referral physician (she coordinates his care). He will have his 2-year "well-child" check in early September and the CP clinic wants to evaluate him again in the fall for his muscle tone/pronation. He doesn't need to go back to cardiology or ophthalmology until next year and he has been "released" from neurology.
This sounds like a lot. I know. I am going to be very busy fitting all of these appointments in AND having lots of summer fun with the boys. But really, I would much rather head to all of these appointments than take him in for even one sedated procedure, let alone a heart procedure. I know that Bean's health could change in time. And that surgery may be necessary as he grows. But for now, I am counting my blessings that he is pretty darn happy and healthy and we are going to go outside an enjoy some sun before dinner. :)

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