Saturday, February 27, 2010
Meredith and Mom decorated cupcakes and made Valentine's to take to the V-day party at school. As you can see, Meredith was extremely interested in cupcake decorating - and only slightly more interested in decorating bubbles with glitter : )
Saturday, February 20, 2010
It's so nice to have this test out of the way and to have heard these results today - the waiting is the hardest part. Meredith wasn't too phased by the news as she was very happy and smiley ALL day today despite a nasty cough - I can't wait for Spring! All in all, today was a very good day : )
Welcome To Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with 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.
Thursday, February 11, 2010
Sunday, February 7, 2010
While Greg is away in Sydney, Australia for work, Meredith and I have kept busy this weekend. We visited Karrie and Colleen in Marshfield where Meredith LOVED chirping along with the exotic bird. Saturday, we went to a beautiful memorial to celebrate the life of my Mom's good friend Judy who will be missed by so many. Meredith was a social butterfly smiling and laughing all day. Last week was packed with appointments at various "ologists." We saw our Developmental Pediatrician who we LOVE. She is amazing. She put us at peace with not having a diagnosis and encouraged us to seek out other local parents who have special needs children. She felt that finding other parents who can relate is really important.
Meredith had a 24 hour EEG on Monday into Tuesday. She has had 2 other EEG’s that both came back normal. Since we now have confirmation that she has had at least one seizure, the Neuro thought it was a good idea to do the 24 hour one. Sometimes kids can be having seizures at night and you wouldn’t even know it (a condition called ESES) and this directly impacts development. The good thing is it can be treated. We are not that hopeful that we will find any new developments with this test, but you never know. Meredith was a champ. She wasn’t happy about getting all the leads attached to her head, but once that was done, she did great. She and Dad picked out a special backpack that would house all her wires and a monitor. So she was very interested in her cheetah backpack that followed her around and we got to keep it after : ) We should hear results in a week or so.
This week we go back to see the Orthopedic surgeon to talk about getting Meredith a supine stander, ankle braces (AFO’s)to wear while in the stander, and possibly some kind of back brace/support. Stay tuned! Meredith's PT is very optimistic that we can get her standing. So we are all excited to see that!