Oh what a wonderous day. Long but wonderful!! Today was Lilys PC apt...(Pediatric Cardiologist). It went well, if you don't count being there for a 12:30 apt but not being seen until 2pm. We saw Dr.Rhee and he came in and said her EKG looked good, she still has a slight murmer but nothing that is horrible, nothing like it was when we were there last...as he said..it sounds like her heart was going to come out of her chest because it was so loud. From her Echo her heart looks wonderful, the procedue Dr.Cleveland did turned out well, he did what is called the Konno procedure and basicly made a hole in the septum to make a passageway for the aorta, then put a patch in it to keep the blood from running together. We have to watch for narrowing up in the aortic valve now because of where it was surgicaly repaired, like everyone has said, it can be 2 years from now, it could be 5 years from now, we just have to wait and watch. Which to me totaly sucks because it is like watching a ticking time bomb, the doctors said at least I know what the signs and symptoms are...is that suppose to be comfort to me? That at least I know what it looks like when she goes into heart failure? yeah...thats a real comfort...at least I can get her to the hospital before her life is almost snatched from me...watch while she is on the brink of death...hold myself...because I cant hold her...and pray to make it to another day....real comfort.
(Lily having an EKG done)
Sorry for the dramatics, but still reeling from her emeregency heart surgery. I still can't get over the fact that we went from looking at no more OHS (Open heart surgeries) to this can and most likely will happen the rest of her life. I pray for divine healing and not that I dont have complete faith in the Lord of that possibly happening...but in all reality it most likely wont...and thats ok...his will, will be done in which ever way he choses it to be done. There are moments I dont want to sleep...I just want to stay awake and watch her sleep...so I dont miss a moment..just incase tomorrow never comes for her or myself. To many, the thought comes to mind...she needs a therapist...but to a mother who has a child with medical issues such as ours...they understand. Each day is a birthday in a sense, every little new thing they do is a huge accomplishment because for them to get where they are today, they are defying the odds, because medicaly the shouldn't be here with some of the problems they have. It is by the grace of God that they are. He has such plans for them, and I feel his hand over our life.
~This is Lily today at the doctors office~
She moved her head at the last second in this one...it would have been perfect!
Seeing I can't take the kids for a profeshinal picture I have to do what I can at home!
Oh how she works that lip....she has us wrapped around her finger!
My favorite picture today!
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