Tuesday, September 2, 2014

Tongue, laughing and T-Gen update

Oh that tongue!  I think we are on week four and this morning it was finally in.  She is now at school so who knows when she gets back today  if it's hanging out again.  It has been out but not as far out as in the beginning, 4 weeks ago. So I think that is good news. I took her to an ENT last week and he at least assured me that her tongue was not swollen and that her mouth and ears looked fine.  He was as baffled as I, not good!  He said his best guess, "and  this is only a guess," is that she might have an upper respiratory infection and it is causing her discomfort and her tongue to stick out out.  He suggested using a humidifier, which I have since done, but no real changes.  If and when this happens again I think I'll see what her neurologist has to say.  So weird!

The laughing in her sleep was only those three times so far (recent post). Now I am dealing with some constipation issues (hers not mine!) It is always something... Hopefully back on track tomorrow.

And... T-Gen has tried five times to get a definite read on the rare gene mutation they think she has.Hoping they can figure it out soon.  They are working on it and I think they will have an answer soon, which means by Christmas to me. I need a nap. Or maybe a martini. Cheers!