Friday, May 30, 2008

Bon Voyage (to be read like Bugs Bunny's 'Bon Voyeggie' please)

Okay...we're off to Long Island and Amelia's in the driver's seat

Boy do I hate the L.I.E.!!!!!

So we're off to Long Island on Sunday. I can't believe it. Saying goodbye to all of her incredible therapists for a month is really strange. They all seem so invested in her well-being. Each have shown me how excited they are for her and looking forward to seeing the differences when we return.

Yesterday Nestor and I drove up to the house (we left Amelia here with Lia, our wonderful nurse) to get the port-a-crib, space saver high chair, sound soothers, baby monitors (sadly, we don't need them in our little apt!!!), DVD player, suitcases, etc. What a day! I was able to get to Target with Amelia's, Titi Terry where I had the strange feeling my Mother must have had when she was buying stuff for me to take to camp. Amelia scored big because Titi got her some awesome clothes so she can be stylin for her therapies.

So tomorrow night we're having a night out for our 6th anniversary (it was Memorial Day weekend like 85% of other married couples) before we take off. Angelo & Maxie's, here we come. Martinis with steaks and sides people, that's what I'm talkin about! And Sunday it's off to the Ronald McDonald House to settle in for Monday's big start.

I'll do my best to post updates and any pics or video I can upload.

Tuesday, May 20, 2008


Daddy, Amelia & big bro, Spike

We'll be enjoying the Junebugs from the Ronald McDonald House on Long Island this year. We're very excited.

Last Thursday, we took Amelia to the facility on Long Island where she will be receiving her intensive 4hr. PT/OT 5x's weekly and Hyperbaric Oxygen Therapy (HBOT) 1hr. 2x's daily to be evaluated for the program. We'll be starting on June 2nd for 4 weeks total. Our day will be as follows:

6:30-8AM first HBOT dive of the day (they call the sessions "dives")
8:30-12:30PM PT/OT
1-2:30PM second HBOT dive
2:30-> rest and play at the Ronald McDonald House until the next day

The facility ( is incredible. They have therasuits and a spider cage for the kids. The PT there, Amy, is really terrific and seemed very competent while working with Amelia that day. Amy manipulated Amelia to get a sense of where she is and at the end had surmised that Amelia is a very good candidate for the program with lots of potential (YAY!).

The hyperbaric facility was also very cool. We actually put Amelia in a chamber (picture a tanning bed that encloses completely and is clear glass) by herself (without the oxygen) to see how she would do. She actually did great. Just laid there watching cartoons and eating her fingers but I'm going to do the dives with her. They told us that after the chamber is sealed and the pressure is stabilized the fastest they could get it open in an emergency is 3 minutes. Well, Amelia could easily choke and die in that time on her secretions if she coughed or sneezed -- as she often does in the morning. Some of the girls from the office came in and were teasing that they give me 2 dives before I decide that she can go in alone. I laughed too!

Yesterday we took her to the Pediatrician to get a clearance from her and to get hip and chest x-rays for Amelia and a chest x-ray for Mommy. Hopefully we pass with flying colors. And pretty much we're set to go!

By the way, the Ronald McDonald House is really amazing! We walked in and it's like Disneyland!!!! I feel like this is going to be a nice getaway for us too. The House has 42 rooms, each with 2 full size sleep comfort beds, a private bathroom, TV and toys for the child (which you are asked to take home with you!). The lobby is a huge room with overstuffed sofas and big stuffed animals on the floor for the kids to play on. There's a 2 story dollhouse for the kids to play in, along with a beautiful library, flat screen TV room (decorated for the Mets) and gardens and BBQ's in the backyard. There is a huge kitchen with 5 stations -- each family is assigned a station with cupboards and fridge space. The dining room is full of country kitchen tables and there's a solarium in the kitchen with a play area for the children. We were also told that a dinner is brought in every night at 6PM for everyone in the house if you wish to partake.

So that's our latest and greatest. This weekend we're off to Baltimore to celebrate my parents' 50th Wedding Anniversary. Wow. That's a long time. My brother and his kids are coming in from Albuquerque and my Aunt Andi and Uncle Neil are the gracious hosts of the beautiful house where we are throwing this big shin-dig. It should be lots of fun!

Also, I neglected to mention that a couple weeks ago Nestor and I attended a big event given by UCP called the "Women Who Care Luncheon." It was given at Cipriani's on 42nd St. (used to be a big old beautiful bank...still has the antique teller windows) and Nestor gave out the big award at the end of the ceremony. It really was such an important and touching event. We posed for some publicity photos, which we've done in the past -- no big deal, but this time was with Dan Rather and that was really cool for me. I mean, he's been in my house almost every night since I was a tot! Strange. I've met lots of people, and I'm not usually starstruck -- but every now and then I meet someone who makes me speechless. This was one of those duh moments (Dustin Hoffman and Tom Hanks are the other two!). Nestor and I have been named Journal Co-chairs for the UCP Celebrity Golf Tournament, which I believe means that they will be using Amelia's story in their magazine for the fundraiser. It's an honor and we are so happy to share our girl and her incredible journey thus far.

And lastly, Spike has made it to Shanghai safely and actually called Nestor this morning. He gives it a 9.5 out of 10 which is amazing. Just so you know -- he's NEVER given anything a 10, he's saving 9.5 is tops! He and his girlfriend, Christine are exploring the city and having a terrific time. What an adventure for him!

So that's it for now. I hope everyone has a fun, relaxing, traffic-free, family full Memorial day.

Tuesday, May 13, 2008

A Moment On Her Own

Today I stood Amelia on the floor next to her crib. Her hands grasped the crib rail and carefully, ever so carefully and with caution, I let go of her. Amelia stood for several moments without anyone holding her up. She held herself up.

Monday, May 12, 2008

From Horizontal to Vertical

Amelia and big brother, Spike 5/08

Yes, we are still doing lots of commando and Creepster crawling...but Amelia's new passion is standing. When we're at the park, sitting on my lap, in a restaurant, etc. she wants to be standing. I place her on the floor between my knees and secure her hips with my knees and she stands! Pretty nice and steady. She'll also turn, so her belly is on my leg and stand that way too. It's very cool. Each milestone feels like it's been forever coming...and now they seem to be happening every other day. So this is what it feels like when your child is making developmental and physical strides forward.

So, on that topic. Nestor, Amelia and I have made new friends. We recently got involved with a not-for-profit organization called Bright Steps Forward ( where they have intensive therapy programs for children, mostly kids with neurological challenges. A friend of Nestor's, Joe Gannascoli ("Sopranos") has been working with them for a year or so doing fundraising at celebrity events for them. Joe thought they would be a good resource for us and Nestor is happy to jump on board and help in any way he can in their celebrity events. We spoke with the owner, Eileen, who basically broke it down for us. Eileen is based in Florida, but there is a facility in Long Island which is about 1 hour from NYC. Families are welcome to stay at the Ronald McDonald House while they're in treatment. It's a 3-4 week intensive program where the child receives 4 hours of intensive therapy, 5 days a week. Hyperbaric Oxygen Therapy (HBOT) is also available during the 3-4 weeks you're there. So we're going on Thurs. to have Amelia evaluated by the Dr. at the HBOT facility and then by the PT for therapy at the center. All we need to do is get our pediatrician's clearance for her and x-rays of her hips and chest -- and we're good to go! I think we'll be doing it in June, sometime after Memorial Day (Mom & Dad's 50th Wedding Anniversary Party!). And there is already an event on June 16th that we're trying to pull in some fun things for them to raffle off (signed playbills and scripts from friends mostly).

And lastly, Spike (Nestor's 19 yr. old) is done with his sophomore year at Lehigh and he and his girlfriend, Christine are leaving on Sunday to spend 6 weeks in Shanghai, thru school. He came over and spent a couple of hours with Nestor and I today and we went to John's for pizza -- so yummy! I didn't think we'd be able to polish off 2 large pizzas between the 3 of us. What can I say? The slices are really thin!!!!

Saturday, May 3, 2008

And then there was Adam

I just had to drop this quickie in. The other day I took Amelia out for a stroll around the neighborhood and bumped into our friend, Francis and her little one, Adam (I think he's around 17 months old?). Amelia and Adam see each other occasionally at the park. He's smiled at her and played with the toys on her stroller, etc.

Anyway, Francis and I were talking, stroller to stroller and Amelia reached out. I thought she was going for the arm of the stroller...but she wasn't. She took Adam's hand. It was so sweetly spontaneous. She held his hand for a few moments, smiled and laughed...and Adam smiled sheepishly in his stroller. Francis thought it was adorable -- but she had no idea how incredibly beautiful it was for me to see Amelia reaching out to her friend.