Update on Waverly & Oliver

January 12, 2011

Update on Waverly & Oliver

The past 10 days have flown by. I have been spending so much of my time trying to get people to vote for Team Sanfilippo in the Pepsi Refresh Project. We are still holding the #1 slot! It is so worth it. THANK YOU to all who are voting and sharing the links with your friends. We have to continue getting more people to vote each day, in order to hold onto our lead.

The kids are both doing well. Tomorrow we are having Oliver's birthday party at school. The goodie bags are filled and the cake has been ordered. We went with a "Cars" theme this year, since he has really been into that movie. Hopefully I will have some party photos to share with you all tomorrow.

Waverly has been a little chatterbox lately. She isn't saying any words, but babbling away as if she has a lot on her mind. I know this phase isn't going to last long, so I am enjoying it while is lasts. I love hearing her voice.

Wavey's swallowing issues are continuing to worsen. The past few days she is having even more difficulty swallowing liquids. She is holding her milk in her mouth for about 10 seconds before swallowing. I have a call into our speech therapist, who specializes in swallowing issues. I hope she will have some additional tips for us. We are already thickening her liquids to a nectar like consistency. We meet with her GI doctor next week. One of the items on our discussion list is a feeding tube. I am so not ready for that.

Comments

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.