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The date has been set

August 19, the twins will be headed into a big hospital in the city for a meeting with a pediatric neurologist. 

What led us to our  my (because Keith leaves all decisions to me) decision for this:

1 - Keira has low muscle tone and has been seeing a pediatric orthopaedist as well as a physical therapist.  It was suggested by the ortho that all LMT patients have an MRI to rule out any sort of issue in the brain that could be causing it.  (The bizarre example he gave me was that one of his thousands of patients had part of his brain missing, which caused the LMT.  Chances are this is not the case and Keira's LMT is just a result of the wiring in her brain being a little off when it comes to muscle tone.)

2 - Colin was admitted to the NICU after birth because of low temp/low blood sugar.  Away from his momma, he decided not to eat (after nursing wonderfully after birth) so they kept him there for 14 days while he learned to suck, swallow, and eat like a regular baby.  A little known fact - during that time, two head ultrasounds were done.  The first showed POSSIBLE intraventricular hemmorhages - grade I and grade II.  The second scan, done a week later, showed no such issue.  We were told it was most likely a shadow on the first scan.  The ped feels otherwise - thinking that his possible IVH, combined with his very low scores on the weight chart - we are finally in the 5th percentile - could be due to cerebral palsy. 

At nine months of age, I was asked by the ped to have an MRI for Colin to rule out CP.  I declined due to a few reasons - it may or may not pick up CP, his services (PT) at the time would not be changed, and there was really no reason to do it other than to give him a label.

Anyway, they are now two.  Keira still does PT for her LMT.  Colin has yet to be released from PT, but does not really go because he does so well.

After speaking with their ped, we decided on having a neurologist do a non-invasive exam to see what he thinks.  The exam will lead us either to an MRI or not.  Which could lead to a diagnosis of CP or not. For one or two or neither twin.

Setting that appointment, while also getting a message from physical therapy telling me they will no longer be giving Keira her appointment due to so many missed appointments (apparently they would rather me bring a feverish child than no child at all), makes for a wonderful weekend.


Unknown said…
So sorry luv. Hopefully you'll get some needed answers. Sending you positive vibes.

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