Kid Updates for February 2017

C had a cardiology appointment yesterday.  The night before we had this really nuanced and in depth conversation about his cardiac status and why his heart beat so slow and what that meant, both now and in the future.  It was nothing like what I'd expect to talk about with a 7 year old, and yet, it didn't prepare me for the reality of his concerns.  Especially with C at this time, this kind of back and forth conversation as been rare.  We stayed on topic the entire time and the questions he asked were thoughtful and showed he had an understanding of the situation of which we were previously unaware.

While we were at the appointment, he put up the usual prolonged protest to the echo, the stickers on his chest, etc.  He hates having things stuck to his skin, so some of it was expected.  The doctor agreed to forego the stickers on the echo, despite the decreased picture quality that will result.  But C continued to protest.  After about 25 minutes trying to get him to lay down he yelled "I just don't want to know if I need another open heart surgery".

We did finally get the echo.  The repair is holding.  We're doing a 24 hour Holter right now so we can find out what his heart is doing over the course of a day.  I'm still hoping it will pick up speed or heal, or do something so we can achieve stability.  If not that, I hope they can figure out a way to make those stem cells we saved at birth replace or repair the sinus node that just isn't doing the job. 

 R had the flu last month.  We all went on Tamiflu in the hopes of stopping it in its tracks, which seems to have worked.  This year's flu seems to be particularly troublesome when it comes to secondary infections.  Poor R was on tamiflu, and a steroid, and just finished some antibiotics for the pneumonia that developed in the wake of the flu.   She's also doing well, though it was somewhat disconcerting to have her tell me "The left side of my face is swollen".  She is so aware of what's going on with her body, compared to her brother's disconnect, it is quite startling. 

 Both kiddos are in school, both at the elementary school and an after school program. R goes for half days, then to a Montessori preschool for the other half.  She's enjoying everything about school, C would prefer more academic rigor, everything is too frustrating on the motor front and too boring on the intellectual front.  It's a hard balance because the two aspects are so very lop-sided.  Everyone is doing their best.  We have our next IEP meeting in a few weeks.  I am looking forward to coming up with ideas to help him next year.