Wednesday, April 13, 2011

4.13.11 - I'm back!

I'm back finally!!  I think this may have been a record amount of time between posts...Funny because I looked back at last year's happenings around this time of year and I said the same thing!  Must be a busy time!  Last year I was sick with a very bad sinus infection/cold which eventually led to Liam getting sick, which then postponed his repair surgery until summer.  I remember it like it was yesterday.  So glad we are in a new year with a new fix to his little heart!

My trip to St. Louis was great.  I really miss my cousin, so it was great to see her and my little second cousin.  I should have taken more pictures...I have a couple I snapped with my iPhone, but that's it.  Kinda mad at myself for that....oh well.  Liam and Dustin managed to survive have a great time without me.  Liam was exhausted come Monday, and actually fell asleep during his lunch time Vital-Stim therapy session...and then slept for 2.5 hours.  I was a little concerned, because sleeping too much is never a good sign with a heart kiddo (and he has never been known to nap that long...ahem, nickname "No-Nap Johnson").  And yesterday he took an almost 3 hour nap.  But today he was back to a normal nap of an hour and half, so my worries were short-lived =)  Thank goodness!

Really nothing new is going on around here.  Liam is continuing to eat well and drink from his sippy cup.  We are down to 1 tube feeding at night.  I am considering returning the feeding pump.  It's just one more piece of equipment we really don't need.  We gravity bolus his juice and water into his tube during the day with a giant syringe, so I am planning on doing that for his nighttime feeding as well.  Initially, he was put on the pump because he couldn't tolerate large volumes going in during short amounts of time, so the pump handled that dilemma.  But now, I think we can manage without it, since we only use it once a day.  I figure I can even bolus his nighttime feeding in two parts if needed.  So the trial run of this may start tomorrow!  And since our insurance doesn't have good DME coverage, the sooner we can return it, the less expense we have to pay out of pocket.  I hate that we have to re-consider things because of insurance. 

On another note, I actually missed Liam's last helmet appointment today.  Totally forgot.  I have NEVER done that before.  Maybe it was the beautiful weather we had today, as we played with bubbles outside during his scheduled appointment time!  I didn't remember until this evening!  I felt so bad....I even remembered this morning, but when afternoon rolled around, slipped my mind! 

More post to come later this week!  Happy Wednesday!

1 comment :

  1. Glad that things are going well for all of you! I think it is awesome that Liam is doing so well tolerating his bolus feeds that you are thinking of getting rid of the pump. We never got to get rid of ours until the tube was actually gone. Logan never handle the bolus feeds so they always had to be run slowly over the course of an hour to an hour and a half. Praying things keep moving forward for Liam!!