9 weeks old

I realize it's been a while since the last post. Several updates:

• Sara was able to get away this past weekend for about 48 hours. She left the 4 of us here and headed to Atlanta for a bridal shower. It was good for her to get out of our little 'Samuel Bubble' for a while and be with good friends. The rest of us did rather well back here in TR, with some wonderful help.
  
• We're doing the continuous feed thing at night: 320cc of his 620 for the day he gets slowly over 8 hrs at night. We were hoping that this would enable us to get a bit more sleep (or at least a few bigger chunks of sleep). That hasn't quite worked out just yet. Samuel has been doing a good bit of coughing lately (the last week) and that keeps us up at night. He can sleep through it it seems, but since the coughing gets things moving in an upward motion it is occasionally accompanied by large amounts of spit up. Changing his clothes, his bedding and/or his changing table in the middle of the night isn't really our most fun thing, but we remember hours of pacing with Anna Catherine, trying desperately to get her to sleep ... these nights are a different kind of hard. But overall, Samuel continues to sleep well, even taking long naps during the day.
• On Monday we met with the Geneticist - our only Drs appt for the week. The CHARGE diagnosis was confirmed by the genetic testing done (CHD7 test). Apparently (I get lost in the genetics stuff - amino acids, proteins, RNA, DNA), there was a problem on this gene that led to a truncation of a protein that facilitates the growth and development of cells -- I think. I'm sure you can find out more info on the CHD7, but the long and the short of it for us is that it confirms the CHARGE diagnosis.
  
• We are currently trying to work out getting two procedures done together here in Greenville that both require Samuel to be sedated. One is a renal scan, the other is the impression for his NAM. The Drs in Atl were willing to let an Orthodontist here in Greenville (Dr. Brian Hamby) take the impression, but he does not currently have hospital privileges. We are trying to figure out how to get those to him for this procedure. Hopefully in the next few days we'll get those details figured out and be able to move forward with the NAM and the renal scan.
  
• Samuel's next Drs appt is next Monday, when he begins a three week treatment course with a hormone (hCG). They're gonna teach me to give him the injections so that we don't have to make multiple trips a week to the other side of town for them (the Endocrin folks, that is) to do it. They are also going to run a battery of blood tests to look see what they can see I guess.
  
• Samuel actually only has 4 appts in the next month - scheduled right now that is. There will likely be visits from the SC School for the Deaf and Blind, the renal scan / impression procedure, and if this cough doesn't lessen, a trip to pediatrician to figure it out. But as it stands now, we're looking at a few weeks of relative quiet.
• AC and Colin seem to be improving generally. They still have their moments (heck, so do I!) but there seem to be less fits than there had been. I guess we're all having to adjust to a new life.
  

Thank you for your continued prayers and support. We are continuing to be needy. It's not a fun place to be, but it is our lot in this life. And we ask that God would give us the grace needed to receive from his hand all that he places in our path. And not only to do so, but to do with joy. He is a good father. He will provide all that we need, when we need it. Of this we are confident. (Right now, anyway.)