Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Monday, January 16, 2012

18 days without a feeding tube!

The Christmas decorations are down!  Thank goodness.  I felt as though that chore was a huge load on my shoulders.  Now I just need to find homes for some more of the toys the boys received.  We had a good weekend as well.  Bryce called home a few times from Florida and it sounds as though he is having a great time.  He landed tonight at 9 and David went to go pick him up from the airport.  We had a nice weekend with the other 2 boys.  We went out to eat twice, which was really nice.  Cole behaves much better at restaurants when Bryce is not around.  Bryce just eggs Cole on and the two of them end up feeding off of each other.  Granted, he behaved like a 2 year old... under the table a few times... but at least no running around or screaming.

I got a message from the GI office on Friday afternoon that I didn't listen to until Saturday.  Apparently, Trey's upper GI series is scheduled for Wednesday at Johns Hopkins.  I know it's not a huge procedure and it will go fine but I'm a bit nervous about going back to the hospital again.  I'm not exactly sure what is going to go on - I know he will have to drink a bunch of solution and then they will x-ray it going through his digestive system.  I'm not sure if he will be lightly sedated, twilighted or completely put out.  Although, tonight was not a great feeding day so I'm eager to get this over with.  He would scream at the top of his lungs after 2 ounces of formula

Tomorrow we have a pediatrician appointment for his Synagis injection.  This is an injection to prevent Trey from getting RSV.  RSV is a virus that can cause runny noses and cold type symptoms in older children and adults but can be deathly for infants.  Wednesday we have the GI procedure, Thursday we have Speech Therapy and then Friday is his first Physical Therapy session.  It's going to be a busy week!


  1. My girls had RSV when they were 4 months old and were in the hospital for 10 days. They got it in the summer but we got Synagis the following winter and didn't get it again so hopefully it helps Trey! RSV sucks.

  2. Caden gets synagis injections too, sounds like a busy week for y'all!