Surgery Consult

August 09, 2012

Surgery Consult

We met with the pediatric surgeon at CNMC this morning. She was very nice and is ready to move forward with the surgery, as soon as we have an anesthesia consultation. Timing wise, the surgery couldn't happen soon enough. I had such a difficult time feeding Waverly dinner tonight. She was struggling so much. She held the puree in her mouth for minutes at a time and fatigued quickly. In the past week, her weight went down by over 3 pounds. I know weight can fluctuate, but this seems like a lot. I am truly worried about her.

Comments

Anonymous said…

It has been a little while since I've been to your blog. You do not know me, but I feel like I know you guys through this blog. I am praying for YOU and your sweet girl right now. Praying she has a successful surgery that will bring some relief.

JoEllen in Ohio

August 10, 2012 at 12:43 AM

PK said…

Not sure if this went through the first time...
Just wanted to let you know that I am here reading your blog, praying for you, thinking about you, and hurting for you as your family walks this difficult journey. You and Matt are doing a great job in a very difficult situation. Keep up the good work.

August 10, 2012 at 6:56 PM

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.