Thank You's and Q&A

Post date: May 1, 2009 3:59:45 AM

We are happy to report that Connor is still at home! Not only that, but he is doing so well that his GI doctor is starting to slowly wean him off his TPN and lipids. This means we have to increase his feeds so his caloric intake remains up and he doesn't lose weight.

His digestive system can't absorb food at the same rate as most babies; it's part of the syndrome. There's so much energy required to digest that his system moves slowly. That's why he's on the feeding pump almost around the clock. We've been trying to increase the rate of his feeds and we've also tried to bolus feed him, but he cannot handle more than 2+ ounces of feed all at once. On the pump, he gets about an ounce in a whole hour. Slowly, we've been trying to inch that rate up and the amount of boluses up as well. We've done as much as 3 ounce boluses, but then he starts to wretch, poor thing. He can't throw up, really, because they gave him a fundoplication when they put in the feeding tube. Sometimes it seems almost worse to watch him wretch and wretch...but then we remember the days when he threw up and threw up and I think I can still say which one I prefer.

Unfortunately, he continues to not want to eat. He won't take much by mouth besides plain water and, for some odd reason, his CoEnzyme Q10 vitamin. We have a swallowing study scheduled in mid-May to help us sort it out and figure out a rehab plan for him.

He now has 6 teeth and will be visiting the dentist for the first time tomorrow! Too bad he doesn't use them to chew food. :-S

Thank You!

We have so many people to thank for all the help and support you have been over the past months.

Q&As

There's a couple of questions we keep getting and thought we'd respond to them here.

Are you still working? - Yes, both of us are still working. We decided early on that this was best for us and allowed us to provide the best care for Connor without one of us going insane. Yes, things are crazy with us both working and trying to juggle schedules, meetings and travel, but we aren't insane yet, so please note the difference! (If you beg to differ, we understand.)

How are you keeping up with all his daily /weekly schedule? - Planning, organization and more planning! :-) We keep a spreadsheet of his meds and feeding times. We also try to group tasks so that we can accomplish them most efficiently. For instance, 90% of his meds get mixed in the evening. That way, we only have to dose him during the day. We bought bins and drawers for all of his medical supplies and group them by usage. We also have rolling carts for items we use most frequently and duplicated the items across two carts, one in his bedroom and one in his playroom, so that they are easily accessible. I work from home and have a friend and his grandmother who cares for Connor during the day. Thank goodness for the electronic age that allows us to communicate via virtual meetings online, by telephone, email and instant message! We're very lucky to be blessed with some flexibility in our jobs. Since we've premixed his medications and formula for the day, I can administer those during quick breaks between meetings. There are some few hiccups and some days when we are so tired we forget things, but this is minimized as best we can.

How / when / where did what happen? What have you been through? or some such variation - That's a bit of history to cover, so I'm planning on doing some "flashback" updates in the near future. For those of you who don't want the maudlin details, just skip any entries with "flashback" in the title! ;-)