Waiting for the BIG WILD BOYS and Grandma 🙂

Marshall hit a road bump.  The wean down from the I.V. meds started strong.  Which is good.  But now Marshall isn’t feeling so swell.  Blood work this a.m. revealed some information that his team is monitoring closely. And they are going to fiddle more with his meds. In terms of plans, they changed. Soooo Marshall […]

All by himself 🙂

A first for our Future Harvard Freshman 🙂

Dr Friedman just stopped by before he left for a week on Nantucket (LUCKY!!) and  was really,  REALLY optimistic.  He “wanted to be sure to stop in case [we] were not here when he came back.” Direct. Quote. 🙂 Soooo, I asked one hundred questions (I won’t bore you with the details) and my interrogation […]

From Marshall regarding the team’s fiddling with medication.  I think he is ok so far 😉 Hope you are smiling wherever you are!!

Dr Friedman checked out this morning’s echo and talked with Dr Smith back at Upstate.  At the risk of being ridiculously optimistic again, maybe just maybe (pray/wish/hope/think hard) they can get us closer to the big boys. My.god.I.miss.them. The echo showed the dysfunction (a.k.a. level of heart failure) has again ever so slightly improved.  Dr […]

Ahhh 🙂

Marshall gained weight again last night!!  His appetite has returned!! Hip-hip-HOORRRAYYY! Overall, he is doing as ok as a kid with a failing ventricle can do.  The great news is he is happy.  And comfortable.  He likes to sleep by day in my arms and by night in his crib.  He enjoys the entertainment Michael […]

Not much to report other than Marshall spent mostly all of yesterday FEEDING! ANNNDDD he gained weight overnight. So he stalled the team on dropping the n.g. tube for at least another day. Yeah for small victories!!! Pray hard he continues to eat please.  Right now he is down to 13 lbs 11 oz from […]