Thursday, May 17, 2012


It seems like it has been a long time since Matthew has seen a specialist.  As we were heading to his urology appointment last week, I was struck how long it has been since I prayed my 'on the way to the specialist' prayer.  It goes something like this-- "Please God, let the news be good and free from surprise".  This month is full of follow up appointments with specialists.  So far the news has been good (with an asterisk in each area).   

Urology- All is well 1 year post-op.  Also, his kidney is growing, but at the low end of normal range.  Just something we'll need to keep an eye on at his next appointment in a year.

GI- Matthew is growing, but gaining weight at a slower pace than expected, even for Matthew's unique growth curve.  He is off the gastroperisis meds, which have lost much of their effectiveness.  The alternative meds are a bit scary, so we are waiting to see if we can address his slow weight gain with higher concentrated calories.  We have to be careful with fats and oils as they may make the gastroperisis worse, but we are adding additional calories wherever possible.  Follow up in September, with hopes of a pound or 2 weight gain.

Cardiology-  According to his cardiologist, Matthew is "doing great!"  I was worried before the appointment, not afraid of what we would hear as we anticipated that the news would be good, but dreading having Matthew stay still for his echocardiogram.  Thankfully he did beautifully, and the echo showed no residual shunting from the PDA, his biscupid AO valve is working fine, but he does have a dilated aortic root.  Just something else to watch at our yearly appointment.

Additionally this month, Matthew has a follow up appointment with neurology.  And we are hoping to get referrals for immunology (to address the potential lymphedema in his feet) and orthopedics (to address an issue raised by his PT- potential torsion of his legs).  After that, we should be caught up with all of his specialists.  Whew!

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