  Ok, I just went and read Renee's blog. I think she is trying to make me cry. She has a link to a page titled "In memory of my boys" Oh, it broke my heart.
See, Renee is my niece by marriage. Bless her heart, she is married to my nephew, I tried to warn her, but she just wouldn't listen (lol) . 6 years ago in May, she gave birth to beautiful twin boys, Zach and Luke. They were so adorable. We were so excited. Then on Mother's day, things changed. Zach and Luke got sick, very sick. At that time, the doctor's didnt' really know why. THey were put on life support, and Stan & Renee were given a chance to bathe them, rock them, sing to them, change their diapers.
Stuff they normally would be doing with healthy babies. Then the day came to disconnect the tubes. Zach went to be with Jesus first. But Luke wasn't quite ready, he wanted a few more hours. Months later they found out the boys had urlLink Citrullinemia which is a urlLink urea cycle disorder . Without prenatal, or immediate screening at birth, there was no way to know about this disease. No way to save those precious babies. After many many hardships, they decided to try one more time. After all the chance was only 25% that this child would have the disease too.
That is how we came to have urlLink Savannah . The prenatal testing showed that Savannah did have Cit., preparations had to made well in advance for her birth. We live 4 hours away from the closest hospital that even had heard the name of the disease. So it would mean a lot of traveling by the young couple.
A lot of it. The UNC-Chapel Hill, is where Savannah goes to the doctor. They trained Renee and Stan how to take care of her, mix her medicine, make her formula, what to watch for, etc, extremely well. I remember well, the first time I got to hold the most beautiful baby ever born, she was 8 weeks old, even though I lived on the same road, and went to the same church as her. Why? Because I had a cold when she was born. It is much to risky to be around her with any type of illness, if contagious. It can put her in the hospital for weeks. But, when I held that little bundle, after washing with soap all the way up to my elbows, and then using anti-bacterial gel on my hands, I fell in love with that child.
She was in my heart from that day forward. I admire her mom so much. Renee has incredible strength. Knowing what it was like to have her boys taken from her, and knowing the same disease silently moves in Savannah's body. But she never lets on. Never. Very rarely do you see her break. Since Savannah's birth, she has been thru numerous surgeries, a life flight to Chapel Hill, many, ,many trips to the hospital for labs, more days spent home waiting for the many doctors to call , not to mention all the specialists it takes to keep her going.
All this, and just the daily grind. Weighing and measuring every bite, sip, nibble, EVERYTHING that goes into Savannah's mouth, calulating how much protien it has, how much she still needs to meet her daily needs to keep her body growing, without sending her body into a coma. Watching every little thing, how long she sleeps, how whiney she is, is it too much, is her ammonia going up, is she getting sick?
All are questions Renee deals with not just on a daily basis, but on an hourly basis. What does she get in return? The most loving, beautiful child there is. savannah has every one she has ever come in contact with wrapped around her little finger. Especially her Aunt Gee (which is me) I can be so down in the dumps, low, and Savannah walks in and flashes me that smile and says HAYYYYYY, and all the world just gets brighter. All my troubles just seem to disappear. This child is special. She is an angel here on earth.
and we are blessed to be love by her. Renee made "the call" yesterday. I didn't know it until I read her blog. She called and made the appointment with the transplant team. That in itself is a huge step for Renee and Stan. It is just a fact gathering meeting, but a meeting that will lead to others, and to major decisions.
Decisions that we all have known were coming, but yet, aren't quite prepared to deal with. I am praying for my friend, I hope anyone who reads this will too. 
