Not as rare as we were told

My support group has recently had an influx of new arrivals :-) Not new babies being born with PCH, but children who have incorrectly carried a cerebral palsy diagnosis for years. Apparently awareness about PCH among the medical community is growing, they are doing more genetic testing, and finding more children that have it.

Makes me wonder how many PCH children there really are out there? Further I wonder how many babies have died of sids, or failure to thrive, and it was really PCH?

Gets me thinking...how much do "they" really know about this? How much of what we were told us true?

How long will she live? What will she be able to do? We used to have very simple answers for that: less than a year, and nothing.

Now days we don't know what to say so we just shrug and say "don't know"
This living in ambiguity thing sure is teaching us a lot of lessons in patience :-)

Thank goodness we live in paradise...watching the sunset does mitigate some of the burdens of our uncertainty :-)

Oh and check this out. I found this shirt I made for girls camp 6 yearss ago, the first year Jason and I were married :-)

 and Max loving Sophie... ;-)