ELEVEN MONTHS OLD

Priya has only 2 1/2 weeks before she turns one...ONE!   I was thinking to have a party for her, but instead I will be quarantining her from other kiddos so we don't have to reschedule her March tongue reduction surgery (maybe we can have a super small one though).  I am not looking forward to it one bit (putting my baby girl through what seems like a barbaric procedure), but we were told she needs it, and I took her to the best of the best (Dr. Marsh in St Louis, an expert in BWS and tongue reduction).  Our craniofacial surgeon who is doing her palate surgery also recommended a tongue reduction.  Dr. Marsh said Priya is already developing an anterior cross bite (under bite) and an open bite.  If we do the surgery before the age of two, there is a 90% chance that any damage done to her jaw will correct itself. Otherwise, it will only continue to get worse--especially after her cleft palate is closed and she has less room to accommodate her large tongue.  Hopefully this procedure will also prevent any possible airway issues she might have once they close the cleft, but it's not certain since her tongue is very thick, long, AND wide.  The surgery will not affect the thickness.  The recovery from tongue reduction is a long one, 6-8 weeks.  It will take a full YEAR for her tongue to really get to where it's supposed to be though.  2-3 months after the tongue reduction, we SHOULD be able to close her palate.


A cool thing about the tongue reduction (the only cool thing) is that I get to meet a friend I met in an online support group whose daughter will be having the same surgery the SAME day as Priya!  We will all be staying at the same place while in St. Louis, so we can cry on each other's shoulders!  This family used to live in NC and moved to TN the same time we moved here from there!  Crazy!  Who would have thought we would meet for the first time in St Louis during our daughters' surgeries?

Priya had her three month ultrasound screening last week.  She thought laying there and letting someone look at her insides was going to be the death of her, but when we went to get her labs drawn, she was happy as can be playing with toys and bubbles instead of paying attention to the nurse taking a few viles of blood from her foot.  The ultrasound results came back good.  Her AFP labs came back OKAY, but her oncologist wants to repeat them in four weeks.  AFP levels start off very, very high in BWS babies after birth and should drop down to a normal range by the age of 1.  A huge increase in the AFP may be early signs for hepatoblastoma.  Priya's have been dropping consistently, but they didn't drop as much as usual since her last labs were drawn three months ago.  SO, just to make sure they are continuing on a downward trend, they are being extra cautious and doing a redraw in four weeks instead of three months.  I am pretty sure it is all fine, but I'd lie if the "what if's" don't bother me a little.

As far as milestones, Priya is still working on crawling and walking.  She has walking while someone is holding her hands down pretty well, but is still pretty wobbly on her own.  She is making sounds like "lala" and "mummm."  She loves to eat!  Her favorite food is pizza (I can't blame her).  Her first tooth popped up this week!  She also experienced her first snow and wasn't impressed at all.  Just a few days prior to our snow, we had taken her to the park on a perfect 60-something degree day.  Crazy weather.