Sunday, August 19, 2012

Spawn

     So I'm pregnant again.  We're pretty happy about it, but naturally nervous.  Lightening doesn't strike twice, does it?  It's kind of a whole big bag of emotions.  We didn't think we would have more children.  I've always wanted more, but we didn't want to risk having another child with Ohdo Syndrome and have it go through everything that Spencer has.  We became a little more open to the idea when Ohdo became Spencer's clinical diagnosis.  I was completely on board when they found the gene in November and that it was a de novo syndrome, meaning non-inherited.  We know now that Spencer genetically has Say Barber Biesecker Young Simpson Ohdo Syndrome.  We know that for a fact and that the chances of another kid having it are less than 1%.  But still....we're nervous.

     I worry that this child could have another one of Spencer's genetic conditions.  Of course I didn't think of any of this until after we found out Spawn 2 was on the way.  Spencer has Pierre Robin Sequence, which is likely just related to his Ohdo Syndrome (but could be caused by a mutation elsewhere), but he also has a few issues that aren't explained by his diagnosis.  His urologists suggests there may be another genetic condition floating around in him. 

     Tomorrow is the ultrasound to see how far along I really am and to make sure the kid has all it's parts.  I'm more eager for the anatomy scan, as now we know what to look for.  We will love this child any way it goes, but typical would be nice for a change.

     On Spencer's end, he's doing amazing.  He decided he wants to start eating like a champ.  We've been slowly trying to work some dairy into his diet, which seems to be going well.  He loves white cheddar puff corn.  He figured out the sign for more recently and actually signed for "more" cheese corn the other day.  We shared some marshmallows earlier.  He constantly has food all over him, which is nice to see.  

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