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Saturday, July 30, 2016

Repeat swallow study

Baby W had his repeat swallow study :)  He's still aspirating occasionally with regular liquids but he's been cleared to drop from honey to nectar consistency and we are no longer restricted to just medium flow nipples!  He can do anything--sippies, straws, open cups.  Since he has come to loathe the bottle so very much, it is excellent news we can switch to other means :)

We go again in four months to repeat the swallow study to see if perhaps we can ditch thickeners all together

Saturday, July 16, 2016

Guess it was my turn?

A few weeks ago Baby W has his visit with the geneticist.  Our new geneticist (although not so new anymore, I guess, since she's been our geneticist for over six months now) is also a specialist in endocrinology, which is one reason our pediatrician wanted Baby W to see her because of his growth issues.  She thinks he's a bit young to worry about anything genetic or metabolic, especially since addressing his reflux and aspiration helped him gain enough to get back on the curve (albeit on the bottom line) but because there's a family history of related symptoms that suggest we have some genetic stuff going on, she wants to keep following him and see him in six months.

While we were there, we talked a little bit about Iz since her DNA results finally were transferred over and I told her the pediatrician said to ask her the way the kids (and I) move in ways most people cannot out.  She asked me to take my pants off :p  She wanted to look at my joints and skin and then took a look at Iz as well.

Apparently it was my turn to get a diagnosis.  Ehlers Danos Syndrome Hypermobility Type.  She says Iz most likely has it as well but she's a bit young for a formal diagnosis because kids are naturally hypermobile and she likes to wait until they get older.  A lot of my joints have stiffened up as I age but they still move in odd ways and I'm prone to dislocation.  She gave me lots of info to take with me and read over and man, that list of possible symptoms explains a lot.  There doesn't seem to be much one can do about it but its still nice to have a name so the next time a doc says I must not have the symptom I say I do because they can't find a reason for it, I can say, look!  its this!  Or if they freak out over a symptom that is "normal" for me, I can also say, look! its this!   :p