Thursday, May 3, 2012

What Pump?

Something very exciting happened here today....we sent Eli's feeding pump back to the pharmacy!  He hasn't had a tube feeding for a few months, but I was afraid to send the pump back until we were sure he wouldn't need it.'s gone!  Don't misunderstand me, we only sent the machine back to the pharmacy, Eli still has his feeding tube (MicKey button).  He still takes his medicines through that although he's getting better about taking some of it orally.  And we still have access if we need to tube a feeding to him, but he eats about anything we put in front of him.  Seriously, the child doesn't turn much down.

We're trying to wean him off the formula and onto milk, but that's going slowly.  We're also working on switching from a bottle to a sippy cup.  He doesn't like the cup very well.  He will drink out of a straw but won't use the sippy cups with straws.  I'm really not too worked up about getting him off the bottle.  I know most 18 month olds have moved from the bottle to the cup but in light of everything Eli has dealt with, we're not worried about this.

Eli is VERY close to walking on his own.  He cruises furniture like nobody's business and can walk holding just one of our fingers, but he will not let go.  I'm okay with that too ;)  He'll be doing it very soon and I know we'll be so proud of the accomplishment.  As he's worked with his physical therapist through these major mobility events (crawling, standing, cruising, walking), it's been so amazing to see how much energy it takes these little creatures to do these things we take for granted.  I never knew how much more cardiac support was required to work the lower part of the body.  Eli's always been very strong, and actually very well coordinated for his age (that must be from Daddy).  His mobility delays haven't been a lack of strength, it's a lack of cardiac support.  Our goal with physical therapy is to teach him how to make the most of what cardiac support he has.

He had an appointment with Dr. Amy yesterday.  He weighs 22lbs 6oz, is 31 3/4 inches long.  His heart rate was in the upper 70's (a little slow for his age but consistent with his junctional rhythm).  His oxygen saturation ranged 86%-88% (that's about average for him).  Overall, he's doing well.  We're all noticing some minor things with him.  He's more tired after a big family event (the zoo outing for example); his lips, fingers, & feet get blue more often, but he doesn't show any signs of distress when that happens; and he's consistently taking one long nap or two shorter naps a day in addition to sleeping well at night.  All these are signs that his body is getting closer to needing that next surgery.  We go back to the cardiologist at the end of June and will learn more about when the third stage of surgery will be.  Right now we're roughly anticipating July or August, but that's just a guess at this point.

Eli is a very silly little boy.  He makes a lot of faces and loves hearing Zachary laugh at him.  He plays with trucks more than Zachary did at this age.  He cracks up when we're in a public bathroom and someone tears the paper towel off the dispenser (for some reason, it's not nearly as funny when I tear off paper towel in the kitchen...go figure?).  He also LOVES to unroll the toilet paper in any bathroom and, yes, thinks it's funny when that sheet is torn off as well.  A sneeze makes him laugh (his or anyone else who sneezes!).  One of his favorite games is to lift his foot to our face and have us smell his toes, then for us to say "Stinky Toes!" and act like we're gagging.  He laughs hysterically.  Going to Zachary's tball games is really fun for Eli.  He sits in his little Mickey Mouse ("MiMo") lawn chair and claps for both teams.  He yells "Bubba!" and points a lot.  He knows he's a hot shot.  Zachary & Eli play so well together and really learn a lot from each other.  I could literally sit and watch them for hours if life would let me!

Thanks for reading and we hope you're all doing well!


  1. Exciting news about the feeding tube and almost walking!! I so agree don't stress about the sippy cup...he may just like a regular cup with straw (grown up style)

    Sounds like as strong as this little man is the next surgery he'll recover just fine.


    1. What wonderful news for you guys! Eli looked very healthy and happy Saturday, and I hope the procedure this summer is the last one he has to have for a long time! Thank you for sharing and thanks for coming over and supporting us! We are definitely inspired by you guys as parents. Keep up the good work with your boys and I can't wait to read more about them during my summer vacation from school, or as I like to call it, blog-cation. Take care :-)