Ally is doing well. She is currently working on her feeding. She is at 9cc and hour. This will be a slow process, but the docs feel confident we will get there. Ally's liver is also doing well. Her bilirubin level is now 0.6 That is amazing!! Overall she continues to be haapy, playful, and wanting to tear off all her attachments, IVs, feed tubes etc.
Ally has however had a hard time weening off some of her sedation/pain meds. So she currently is having some withdraw issues, one is she is not sleeping. The only other issue right now is to get Ally's wound to heal. Early yesterday her incision opened up slightly, and is draining fluid/blood. Dr. Dunn however said this morning he thinks it should heal up over the next few weeks. This has been something Ally has always struggle with after surgery, wound healing.
That is all for now, but before I run off to be with Ally, I thought this letter below would be a nice read. It was sent to us, and it really does describe the way we see life with Ally and our family. Just I'd share it with you also. Enjoy. Shane
Welcome To Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.