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Old 03-23-2012, 09:27 PM   #1
Join Date: Mar 2012
Location: California
Posts: 4
SpasticQuadCP HB User
Need encouragement and hope

My son is 4.5 months. We are waiting for his infant MRI appointment and results from a battery of bloodwork but all signs currently point to spastic quadraplegia cerebral palsy. Our first good test result was a clean EEG.

His head control is poor and he is still dealing with strong primitive reflexes. He has rolled from front to back and back to front but it almost looks accidental when it happens.

PT has us practicing rolling (among other things) with him a few times a day to help him get past his reflexes.

OT has us working bottle techniques to improve his suck/swallowing (weight gain up to now has been fine but occasionally has reflux)

My son was not born prematurely and had no health issues before this so we were caught off guard with this turn of events.

The last week has been a terrible emotional rollercoaster and I'm hoping we are done with life at rock bottom.

This week my son showed the first signs of reaching/grabbing items with intent. It is a huge struggle for him but I managed to record a few sessions and show them to the PT. It usually happens first thing in the morning after a nice night of sleep when he is loose and limber.

It is hard to wrap my mind around it but a full schedule of therapy and potential surgical procedures down the road are a given. I understand walking will be a longshot but is still a possibility.

I guess I am writing to ask...where do we go from here.

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