A new post . . . finally.

My apologies to any regular readers out there.  It has been a while since I last posted, partly because the holidays were so busy and partly because I've been crashing whenever I've had any precious downtime.

Zachary had a great second Christmas with his aunt, uncle, and two cousins.  He got more presents than he knows what to do with and loved all the attention he received.  We were so lucky to have my brother, sister-in-law, and niece and nephew in town to help out with cooking and cleaning and keep us company.  Don't know what we'd do without them or all our other family and friends who have been so helpful for so long.

The biggest news the past month was that Zachary didn't do so well during his sleep study at the end of December.  The test was to see whether his lungs are strong enough to do the job while he's sleeping without assistance from a ventilator.  Unfortunately, when he went into deep sleep the carbon dioxide in his blood rose to unacceptable levels so he had to be put back on the vent to help keep his lungs inflated and blow off the C02.  We have an appointment with his pulmonologist in a couple weeks to learn for sure what it all means.  But it likely means that he's going to need to keep using the vent at night longer than we'd like and will probably not have his trach removed as soon as we'd hoped. 

He also lost a little weight over the past couple weeks.  Nothing to be too alarmed about.  But when you are almost 15 months old and weigh less than 15 pounds you have to be vigilant about the calories in and calories out.  We think it is because we started transitioning him off breast milk and onto a formula recommended by a GI specialist.  Had an appointment with a nutritionist yesterday and working on a plan forward as far as that goes. 

We are frustrated that his eating is going VERY slowly, as in he doesn't really eat at all.  He drinks about 1/3 of his bottles but could care less for solid food, though he'll tolerate small tastes of yogurt and pureed pears and such.  Will probably do a more detailed post on the feeding issues soon since that is what consumes most of our time and attention. 

Good news is that we have weaned him off one of the meds he was taking for motility problems and are about to get rid of another for reflux.  Not because he doesn't still have those problems but because we figured they weren't really helping all that much.  Figured it was better to projectile vomit and have slow stomach emptying without all the meds than have them with all the meds. 

That's all for now.  Will follow-up with a more detailed look at his feeding/growth issues soon.