A Long Day at Children's Mercy

Wow!  I realized that I hadn't made a post in a while but decided since it took me this long I might as well wait until today was over so I could update about Ava's two appointments at Children's Mercy.  Ava first had a 10:30am appointment at the Endocrine Clinic to check if her adrenal glands are producing the natural steroids they are supposed to even though they didn't need to for so long while she was on prednisolone.  After multiple tries of placing an IV and plenty of tears, the test was complete after having to take blood samples after 30 minutes and then again after 60 minutes of giving her a substance to stimulate her glands.  We are still awaiting these results.  They thought they would be able to call us this afternoon with these results but I guess we'll have to wait until next week.  From there we went to the Cardiology Clinic for a 1:00pm appointment to check the status of her small VSD (small opening between the two upper ventricles in the heart).  After an EKG, an echo cardiogram, and an hour wait after that, we heard that she still has an extremely small opening but nothing they are worried about.  The cardiologist said that these almost always close over time and would like to see Ava again in 2 or 3 years.  The good news is that the cardiologist also said this would not prevent Ava from becoming an Olympic champion...I guess we better get to work!  We finally got out of there at 3:00pm and guess who napped the whole way home..not mommy or daddy!

In general, things have been great at home.  Reese is pulling up on everything, crawling everywhere and wants someone right next to her at all times.  Ava is doing awesome with time off the ventilator.  We started with a few minutes off the vent about a month ago and now she spends 2 hours off the vent at a time.  Yes, that's 2 HOURS a couple times a day.  She is doing better with spoon feeding considering about a month ago she didn't allow us to put the spoon in her mouth very often but now is eating 2 to 4 oz. of yogurt, applesauce, avocado, etc. for breakfast, lunch and dinner.  She is still not crawling but is holding herself up on things while standing, gets on all fours, and rolls around a lot.  We hope that with all the time off the ventilator she will become even more mobile without having to battle all the tubing.  It's all pretty exciting. 

I've included a couple videos to show you what's been going on in our house lately!  As you can tell from the second video clip, Ava and Reese are still working on the sharing concept!