Sunday, December 21, 2008
A cup and No Pump
Caroline is trying new things this week. I am so thrilled that she is using a sippy cup after working on this and trying lots of cups. She is able to hold it if I tilt or prop her up. To night is also her official night on her pump. It is no longer mandatory nutritionally for her to have the pump. So we are weaning to regular milk and a cup. It is a long process. She will have to keep her tube for six more months and I will keep the pump on hand until we remove the mickey button. We are hoping to get her stander, wheels, and leg braces all covered by insurances before December 31st!!!!
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2 comments:
It's great to hear about Caroline's progress! Hope you guys have a wonderful Christmas!!
Hey, welcome to jax. I'm glad Caroline is feeling better. I live in Jax. Beach and my daughter, Carly's diagnosis is trisomy 18 (T-18). We share the same wonderful OT. I had a friend send me this poem and I thought I'd share it wit you.
Blessings,
Deborah
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 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 guidebooks. 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.
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