Gaucher Disease swallowing problems or texture issues?

When Hannah’s OT suggested a swallow study, it didn’t make me nervous at all.  Because of everything else she was doing okay, I really felt that it was likely just another “Hannah” issue and not GD23 related.  I mean, they were concerned that her laryngomalacia (poor throat tone) was GD-related, but it turned out to be old-fashioned laryngomalacia, and she outgrew it. 

But then I posted about it on facebook, mostly to learn what the procedure was.  (Those of you who are my friends on facebook may have read the comments I’m about to mention).  Two moms of GD2 children that have passed away, and who I have become friends with and have been a huge support to me, both made comments that this is what their kids had to deal with as well, and they both are convinced this is GD-related. 

I know they both were trying to be there for me and prepare me, and believe A. and L., I have NO ill-feelings towards you for it, as you two have been such huge avenues of support for me. 

But since reading their comments and reading the email from my pediatrician who wants to get this done ASAP after hearing the OT’s recommendation, I can’t shake this feeling that it may be GD-related, and that we are heading down a GD2 road.  

After tot shabbat last night, we went out for dinner.  I can’t tell you one conversation that happened during that time, because all I could thinking about what Hannah.  She sat in her high chair, and the entire time, I just wanted to touch her and look at her.  I completely zoned out everything else until the end or when I had to. 

I even tried blogging about this last night, but I couldn’t stop myself from tearing up each time I started.  

Please, please don’t let this be GD2 related.  I’m not ready for this yet.  I’m so not ready for this.