Monday, January 21, 2013

Ambrose Turned 5! January 19th

Ambrose resting up for the party.


A Year with 0 Hospitalizations 2012 in Review

2012 was a big year for Ambrose.  His first major accomplishment was turning four.  
He went out for many walks and had many outings.  He attended his Mommy's RN pinning ceremony,
wemt to church several times, played at the park, went to the apple pie festival, and Santa's Land.
We were amazed to learn that he, and his sister Sophia, did not have Taybi-Linder Syndrome, as
previously believed.  Their new diagnosis is CDG-1d, Congenital Disorders of Glycosylation type 1D.  
This is also quite rare, but is part of a group of disorders currently being researched in several countries.
Most importantly, children with this disorder live longer than those with his former diagnosis.  I have even been able to connect with another Mother, which is wonderful after all these years of possibly being the only one.  
Ambrose weathered 2 respiratory illnesses at home and has gone a whole calendar year without any hospitalizations.  By the end of 2012, it had been over 19 months since his last hospitalization. 
Here are a few photos from Christmas time.