Home!!

Happy to be able to swing again!

 We are home and are so thankful to spend a quiet weekend here!!  Lucy was discharged yesterday afternoon.  Since she had a feeding tube back in and we've taken care of a feeding tube and sore skin for years now, there was really no need to keep us.  So, we are basically back to where we were 2 weeks ago.  Lucy has a feeding tube that we aren't using and her skin is more irritated than it was before!

The plan is to downsize her button later this week to allow her opening to close some more on its own, without having such a gaping opening that will cause her to lose all of her nutrition.  From there - we shall see!  I was just so happy to leave the hospital and not have some other "trial and error" solution provided.  UGH!

She is feeling good and is about 95% of the way back to her old self - BEFORE the tube was removed and we were dealing with the massive leaking.  What fun we had during our tea parties, playtime outside and fort building today!  A special visit from auntie Melisa and uncle Tony complete with fun new toys, family dinner and a walk to the park was a great way to welcome Lucy home last night.  My parent's stayed over last night to make sure everything was OK and then headed back home this morning (for the first time in over a week for my mom!). 

Again, a huge thank you to everyone for keeping us in your prayers.  It has been a tough couple of weeks around here with Lucy not able to do most of the things she loves (jumping, swinging and eating!!).  I absolutely could not have handled the situation without my mom's willingness to stay and help distract Lucy during painful bandage changes, selflessly relieving me at the hospital so I could sneak a shower or cup of coffee and generally just being around for support.  Having my dad join her for the past few days to help share the load was a huge help as well.  As my wise friend, Karly told me this week: "Thank You for giving me the opportunity to help."  She's right...sometimes it is very difficult for us to ask others to help us, but often many people in our lives are more than happy to do whatever they can to help us share our burdens.