Ellie-bun is ONE!

Where has the year gone?  Oh yeah, 127 days in the hospital and 365 days of constant worrying if Ellie is going to be alright.  Don't get me wrong, there have been a lot of great days and happy moments and we count our blessings for this sweet spirit that has been sent to live with us and bless our lives.  To some it seems like it has been a quick year, to us it has been the longest year ever but I still can't believe that Ellie is already one.  She is still quite small weighing 17.5 pounds (5th percentile but at least she is now on the chart!) and about 28 inches (25th percentile).

We celebrated Ellie's birthday by going to a cardiology appointment where she had another chest xray and an echo.  Usually if she is not sedated for the echo she is quite fussy and it is almost impossible to get a good reading of anything.  She did amazingly well yesterday and was pretty still and preoccupied watching Toy Story while laying on me for her echo.  The results showed that her heart is doing well and her pulmonary hypertension is normal!!!  That was the best news of the day.  We are going to start weaning her off of her diuretics again and hopefully this time it is for good.  After a couple of weeks she should be completely off of the bumex.  Then we will go in for another check up in a month when we hope to start weaning the oxygen.  It will take a lot of monitoring as we wean her off of that but it will be a marvelous day when we don't have to take oxygen with Ellie wherever she goes.  Things are really looking up. 

I think having the NG tube removed was one of the best decisions because since it has been gone Ellie has been able to eat and drink more.  Yesterday she ate almost 3/4 of her full amount of feedings.  Everyday she seems to slowly increase her intake little by little.  Since having her G-tube placed she has not rolled over but who can blame her for avoiding rolling on to a big button in the middle of her stomach.  She does well to avoid it and it doesn't seem to bother her or get in her way too much.  She is energetic and busy and loves to stand and bop to music.  She has been crawling since the beginning of August but has yet to make it a long distance.  Ellie is constantly smacking her lips, giving kisses, and flashing cheezy smiles which makes us smile right back.

Happy Birthday to our sweet Bun Bun!  We love you!