Wednesday afternoon update

Chris here - Brianna and Victoria have gone down to eat lunch.  Maya is napping after a busy morning playing with Brianna, and then having her first fluid administered via her new Nasogastric tube.  It is a tube down her throat and directly into her stomach.  They apparently installed it early this morning before Brianna and I arrived at 9 AM.  She does not appear to be in much discomfort from it.  It is amazing what she is tolerating now!  She had 240cc of water injected over a 1 hour period into her stomach, and I had to walk around with her until it finished, then she fell asleep. 

Victoria and I were instructed by a representative from the company that produces the feeding bags and pumps on what to do with the home model, and how often new supplies would be delivered.  I asked the coordinating RN whether we would receive home assistance from a nurse, and was assured we would.  I also asked about school, knowing that they would not be allowed to work with her feeding tube (which is actually just for liquid, food is fine for her to eat normally).  I was told that most likely a nurse could go to her school when it was liquid time and administer it.  This is turning into a larger life-changing event than we had anticipated.  I hope her school will allow her to return, as she needs the interaction and normalcy of her friends.

Speaking of normalcy, the place in which Brianna and I stayed last night was one in which many distant families live for months at a time while a child is being cared for at the Children's Hospital of Boston.  Brianna and I saw 2 children with one of the rarest diseases in the world, Progeria, aka Hutchinson-Gilford Progeria syndrome.  According to wikipedia, only 48 children in the world currently have this condition, and we saw two and talked briefly with a South American family whose daughter was there with it.  I had prepped Brianna beforehand and she was polite and said 'Hello' to the girl that was in the common area when we went there to get some water.  I don't know if she was shy, unable to speak clearly or did not know english, but she sort of looked down and away when Brianna spoke to her, and the family tried to prompt her to speak, but I didn't hear anything more than perhaps a whisper.  It was so incredibly heart-rending to see the way this child looked.  She could have been 2 years old or 12, but she was less than 2 feet in stature, sitting in a high chair and had a wrist that looked like the wrist of a 100-year old, very bony, curled and thin.  I think that is perhaps the saddest disease in the world, where kids get all of the symptoms of old age while still babies.  It was so emotional for me that I cried in front of Brianna in our room and had a hard time explaining why.  We are so fortunate in that our family has repairable, minor issues compared to many others we have been crossing paths with.  A recurring lesson in this life is to show compassion wherever possible and express gratitude as strongly and as often as possible.

-Chris