Sweet Miss Molly...

A couple of weeks ago we had Molly's 4-year doctor's appointment. She is getting so big, and we were blown away to find out that she's grown 5 inches since last year's appointment. She's now 3' 7.5" (97th percentile) and 46 pounds (95th percentile). She's definitely going to be tall!

Her pediatrician did voice a concern about her large birthmarks and asked that we see a dermatologist again. Some of you may remember that we have already gone through this, and I wrote a blog post about it several years ago (click here to read). I was actually looking forward to a second opinion because last time we went the dermatologist seemed a little "unsure". Cafe au lait birthmarks are not a concern in themselves, but they can be an indicator of a variety of diseases. The initial concern was a disease called neurofibromatosis. And the new dermotologist agreed that her spots are not consistent with this disease. However, they ARE consistent with a rare genetic disease called McCune-Albright Syndrome (MAS). The spots with this disease are typically large, covering a shoulder and arm, and stop abruptly at the midline (at the sternum on the front and on the spine in the back). They also tend to have jagged (not smooth) borders and they can have additional spots on the base of the back. This is EXACTLY like Molly's spots, and it was crazy to see pictures of other kids with spots exactly like hers. Sooo... we have been referred to a geneticist for further evaluation.

MAS is due to a genetic mutation and tends to cause a triad of issues. The first thing noticed is the cafe au lait spots. Then kids develop hormonal issues, often including precocious (early) puberty in girls. Also, there's usually fibrous dysplasia of the bones which typically causes growth deformity and brittle bones. So if this is something she has, it's not great. But it's not life threatening and they can treat the issues as they come up. AND MOST IMPORTANTLY, kids can get the signature cafe au lait spots and not develop any other issues. Steve and I have a lot of peace about it. We both feel that it's prudent to meet with the geneticist next week so that we can be as informed as possible. But until she starts showing other signs and symptoms of MAS, it's pointless to assume that she has it. So we just ask for prayer and continued peace. Thanks!