Sunday, August 24, 2014

6 Month Cardiology Visit and a general update

We had our 6 month cardiology visit last week.  Vitals were good, echo looks unchanged.  EKG wasn't what I was hoping for.  His rhythm was sinus, but slow at 57.  Considering he was upset at the time and that generally speaking, heart rates for adults (much less children) should be greater than 60, this was not what we wanted to see.  We'll need to do another holter monitor this winter for our next checkup. We're waiting until winter because the extra layers will make it much easier to keep the monitor on.

C can read most anything he finds interesting at this point.  He's shifted his interests to maths.  He understands the basics of addition and subtraction.  He's memorized his multiplication tables up to 12x12. He's currently focused on even/odd and prime numbers.  It is amusing, but sometimes the relentless quizzes can be wearing.

While C's interest in academics knows no bounds, his interest in activities such as art, life skills and potty training are non-existent. We are working to find creative ways to spark his interests.  We're hoping to use letters and numbers to bridge the gap.  For example:  C has no interest in drawing a person, however, we've been able to get him to do so by making the body an A, the head an O, the arms Rs and so on.  Also, instead of asking him to draw pictures, the preschool has him write "math sentences".

We've started doing written worksheets at home in an effort to get him to work on his upper body strength and fine motor skills.  All in all,things are going well.

Saturday, December 14, 2013

C's Update and a recommitment to blogging

C is doing very well.  He's up to 28 lbs.  He tolerates having his vitals taken, EKGs applied and gets only slightly grumpy during an echo.  Getting his height measured freaks him out a bit but overall, things are getting a lot easier on the medical testing front.  C is stable from a cardiac perspective and gaining weight again which will hopefully end his FTT diagnosis at some point.

We're in an interesting place with C.  He's in public preschool with an IEP.  Our main goal is to get him to play without lapsing into academic pursuits.  C can read, sentences, books, big words like "anthropology".  He sounds words out in his head and just speaks the word as he guesses it would be said.  It is amazing.  He's been reading since he was 2, which leads to an interesting shift in focus for his parents.  Instead of trying to teach him reading, math, shapes, colors, time, etc.  We are trying to get him to slow down and stop learning so much so quickly!  It sounds strange... but this really creates a gap in his social skills and a huge chasm that needs to be bridged socially.

The kids in his class love him and adore his idiosyncrasies as much as we do. Ultimately, balance will serve him better, so that is what we are striving for.

C is amazing and we are so glad to have him.  I'm sorry I stopped blogging, I'd meant to keep this up as a great way to keep track of our lives.  I tracked the high drama and have failed to keep up with the every day.

My New Year's Resolution is to ensure that I don't continue that mistake.  I am resolving to blog at least once per week.  We've got big changes coming, so look for a new post soon!  

Thursday, August 1, 2013

Holter Monitor Results, Better Late Than Never

Our doctor called and left us a voice mail regarding the Holter Monitor results. The lowest heart rates were in the 40's for brief times, average hourly rates were all above 60. The highest rate was at 160.

C did not drop any beats and remained in sinus rhythm throughout the test. Overall, this is a big improvement from where we were immediately following surgery when his heart rate would linger in the 30's.

It looks like we are not facing the need for a pace maker at this time.  Hopefully C will continue to grow into his heart.