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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

Thursday, May 19, 2016

Feeding therapy is going well.  He is showing signs that his body is working to keep his airways clear so there's hope that when we repeat the swallow study over the summer, he may be able to ditch the bottles and go back to "normal".  He hates them oh so much :p  He's been gaining weight as well and I finally finally finally can stop buying size two diapers!  Next pack I buy will be threes :p  I know it may be a strange thing to celebrate but I'm betting parents who had a slow grower "get" it :p

Iz is doing well with her occupational therapy and is (mostly) invested in doing a good job.  We've started Stick Kids at home and she's excited about learning the new activities.

My Busy Little B is struggling with sensory stuff so bad right now.  Last week it caused a complete shutdown at school--they called me when he stayed in the same position for over half an hour.  When I got there, he was sitting up but curled over and obsessively digging at his toe with his fingernail--I'm surprised he didn't draw blood :\  I called up the pediatrician and got an OT referral--he goes in tomorrow for an evaluation and hopefully will qualify for some therapy to help him deal with the sensory overload.