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Snow Day

Posted Dec 19 2009 7:10pm
Yes! We are in the midst of a "White Out!" It's snowing friends. We are hunkering down for a laaaaazy Sunday! Can't wait!
Amelia's been having a good week, although she seems to have some kind of runny nose and sneezing thing. There's been lots of wiping and suctioning, but no fevers or up-all-night. It seems like the respiratory regimin we've been doing 2x's daily is keeping her on the healthy side. Amelia also got the second half of her H1N1 vaccination this week. Such a brave girl! She didn't make a peep when she got the needle.

Lots of good gifts for Chanukah this week too. What a scam! This girl gets both Christmas and Chanukah gifts! Who's better than her? Such fun. AND...we haven't even gotten down to Baltimore yet to see my family! Lot's of presents waiting there too.

Last night Nestor and I had a date. While Amelia hung home with Jozette, we hit The Angelica and saw "Crazy Heart". We really enjoyed it! It's the first movie we've seen in a really long time -- and this morning we went, at 7:30am to The Ziegfield Theater to see Disney's "The Princess and the Frog". Nestor is a Friar and each year the Friar's Club does a movie event for kids with special needs and kids from the inner city. It's flawlessly supervised and executed. The woman of the day, Allison Grambs, who is the planner, contacts us each year and sends tickets for us and any extras we request. She ropes off seats for us and it's so much fun! Last year we had our friends, the Leshin's join us (who have a little boy with CP too), along with Amelia's nurse, Lia with her son and we got a bunch of tickets for families at The Ronald McDonald House. We had no idea how Amelia would do last year and surprisingly, she loved it! I would say she did even better this year!!!! The Leshin's didn't make it (hope Sam and Judah are feeling better!) this year, but Lia made it with her son and also, Jozette, Amelia's respite worker, with her family. Then we scurried home and hunkered down for the rest of the afternoon. What a great day!

Next week is a short school week. We're taking Amelia to UCP on Tuesday to get her fitted for new AFO's (leg braces) and to look at some adaptive strollers. Uch! I've put this off for so long because I've been in denial that she would actually need a wheelchair. Well, this is the first step toward that -- hey, it is what it is...

We're spending Christmas with Nestor's family and staying around town because Amelia is having a Nucleur Test on Monday and Tuesday between Christmas and New Years. They will inject dye thru her g-tube and do some studies on her gastric emptying. We'll go home and come back the following day to get studies done on her chest to see if any of the material was aspirated into her lungs. We're doing all of this to see if Amelia's fundoplication has come undone. We'll know more after.

On Wednesday we're heading down to Baltimore to see my family. We'll spend New Year's there and head back to NYC on Saturday.

I'm really looking forward to having a nice long break to visit all our friends and family -- it finally feels like the holiday season and I'm loving it! Happy Holidays All!!!! Peace, love and above all, Happiness to all of you.
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