CDRC Developmental Assessment

Two weeks ago Oliver was seen by the Child Development and Rehabilitation Center (CDRC).  Like our cardiologist and nephrologist, they are based in Portland but thankfully have clinics in Medford.  The geneticist who saw Oliver back in July was also with this group, but this was our first time seeing them for a developmental assessment. 

Their evaluation was simultaneously disheartening and encouraging.  I guess I'm getting used to having confused and conflicting emotions.

Oliver is now 6 months old, but was born a month early so that puts his adjusted age at about 5 months.  For gross motor abilities he is developmentally comprable to a 7 week old baby.  I have known that his gross motor abilities have regressed since his hospitilizations, particularly that he doesn't lift his head near as well as he used to, but this was still difficult to hear stated officially.  The good news accompanying this evaluation is that he seems to be moving like a NORMAL 7 week old baby.  In other words, it does not appear, at least so far, that he has some condition that impairs his motor ablility; he is simply delayed and they expect that he will eventually be able to catch up.  This may make sense considering his persistent sleepiness and disinclination to be on his tummy after have his g-tube placed.  We'll start working with Early Intervention as soon as the paperwork goes through.  They'll come to our home to do therapy with him and teach me how to do it too.  We're also looking into working with a private therapist in the meantime. 

See how tangled up the emotions are?  Our son is pretty far behind BUT so far it appears to be simply a delay and not a disorder.  So there is great hope that he can catch BUT it means a lot of therapy appointments, home therapy to add to my daily routine, and even more paperwork.  But he is totaly worth it. 

It was also difficult to have the doctors confirm that he has a vision problem (more conflicting emotions: yep, one more thing to fix on the baby! - that's the dissapointed sarcasm, but it is accompanied by the wave of hope of thinking "that may be why he hasn't smiled yet!  He can't see us well!").  His extropia (opposite of cross-eyed; his eyes look apart) seems to have worsened rather than improved as he's gotten older, so we've added an appointment with the Casey Eye Institute at OHSU in Portland when we'll be there in a few weeks (yea, I just love coordinating even more appointments! / I'm so thankful we have so many experienced specialists working with our son and that we're catching so many of theses issues right away).  You can see the problem with his eyes in this recent picture:

His recent check-up with his cardiologist showed that his heart contiues to function well in spite of all the abnormalities. 

When I took him in for his bi-monthly pediatrician last week I realized I have been so preoccupied with managing Oliver's medical care that I forgot to take the girls in for their annual check-ups!  Our doctor and nurses had a good laugh with me over that today.  There'll all scheduled together now for one big visit next week.