Monday, April 26, 2010

Building a Better Stander

Today Nestor and I went to Adaptive Design and spent the morning and early afternoon building a stander for Amelia.  Normally, Adaptive Design won't build standers for children over 24" tall, but because we're the ones building it, they were open to us bringing in our own design and giving it a go -- knowing that we are responsible for any liability.  So Nestor and I came up with a design and today we built it!  We're 95% done.  We just need to go in tomorrow and tweak the construction, add castors and paint it up cute for our girl!  Very exciting!!!!!

And what a great experience.  The crew over there is as accommodating, knowledgeable, creative and capable as can be.  A huge thanks to the whole team there.  Nestor and I had such a good time and learned so much in such a short visit.  I joked at one point that this was more fun than taking salsa lessons.  Here we were, working together, communicating, trading off tasks and constructing something for our little girl!  So great.  Who knew watching Nestor handle a jigsaw could make my toes curl?????

Check us out on the Adaptive Design Blog today. And thanks to Lille for the pics of us in action!

Wednesday, April 21, 2010


It's been a crazy few weeks.  It started with a marathon trip to California.  Los Angeles to be exact.  Nestor and I flew out there a couple weekends ago to look at homes.  Beyond the normal stressers of realizing that we are actually going to make this ginormous move, it was my first time leaving Amelia.

The Friday morning of our departure, I put her on the bus as usual.  Our flight was at 12pm.  I felt like a heel.  There I was going about our normal morning routine -- only to not be there in the afternoon when she gets home.  Guilt.  Anyway,  we had lined up Amelia's favorite nurse, Lia and respite worker, Jozette, to get her thru the couple days we would be gone.  Bubbie and Zadie were on call, as was Aunt Carrie and Uncle Scott.  Amelia did great.  As did the team...and I, well after a couple drinks in the first class lounge before takeoff, I was did fine too!

So we landed, rented a car and headed off to see the school, Sven Lokrantz, we want to send Amelia to in the Valley.  We flew like the wind on the 405 at a breezy 4mph until we were able to reach the 101 which would take us over the hill into the Valley.  I called to say we were nearby, but by then it was of 5pm and the Vice Principal was leaving for the weekend.  I was really disappointed, because although Nestor had seen the school when he was in LA for pilot season, this was probably going to be my only chance until we move there.  Then my phone rang and it was the Principal, Sherri, who said she would wait for us to arrive.  YAY! We got there and got the red carpet tour of the school.  It's a nice facility that has lots of space, adaptive equipment, a swimming pool for Aquatherapy and houses a CCS (California Children's Services) on campus -- which is where Amelia will receive some of her after school therapies.  The few teachers and therapists who were still around could not say enough good things about the school. I guess the best testament for a school is the folks who work there.  One Speech Therapist said she had been in LAUSD for 28 years, at Lokrantz for the past 8 and that they would have to drag her lifeless body out of there to get her to leave it.  Wow!  If that's not positive review for the school, I'm not sure what is.

From there we drove into West Hollywood for dinner and had a couple friends meet us at the restaurant, after dinner for a glass of wine.  Exhausted, we went to our hotel in Woodland Hills to rest up for our marathon house hunting Saturday.

We woke up early (still on NY time) and went to IHOP (my fave!) for breakfast.  After that Nestor drove me around the Valley -- Sherman Oaks, Tarzana, etc. to look at some neighborhoods, before meeting up with our real estate broker, Mario.  We saw 15 houses that day and fell in love with a couple.  One was in the hills of Woodland Hills and was exquisite!  The problem is that we would have to park in a carport under the house and climb about 15 steep steps to get the entry of the house.  Not great when you have a non-ambulatory child.  So with much regret, we bid adieu to one of the most incredible homes I've ever dreamed of living in.  Another home that we saw was the perfect home for us.  One level, wall-to-wall carpeting, spacious, beautiful, big backyard and completely upgraded.  Problem:  it's in Northridge (far away from the action) and off of a main, highly trafficked blvd. -- which is not the nicest part of town.  Ah well.  And there were others, but nothing felt completely right.  It was unrealistic to think we might actually find a house in a day!  The great thing is that Mario got a really good sense of what we like and will be able to scope things for us more effectively. We went back to the hotel somewhat downtrodden and had dinner and drinks in the hotel lounge until we finally decided to turn in.  The next morning, Nestor left at 6am and flew out to Kentucky to shoot a new scene for the film "Secretariat" and I was picked up from the hotel around 10am to fly home to NYC.

From there we decided that the best thing we can do for ourselves is to pack up and move out to LA.  We have booked our reservation at The Oakwood (corporate housing) and will be heading over there the end of June, when Amelia finishes school.  She will attend summer session at Sven Lokrantz (she is in a 12 month program).  So that's that. The amount of things that have to be done is mindboggling.  I get up each day and coordinate which calls have to be made's appointment's before we leave...all her specialists...medical supply company...medical....ccs....ordering adaptive equipment before we leave or when we get out much to do.

So anyway, back home....last weekend Amelia went to Hippotherapy on Saturday and then late afternoon Amelia's teacher, Melissa, from the Early Intervention days, was in town from Washington, D.C. for a couple of days and was able to steal away an hour to visit us.  It was great to see her.  She was exactly the same! On Sunday we got an early start to visit Nestor's mom at the nursing home in NJ and then had a wonderful dinner at Evelyn and Carlo's (Nestor's sister and brother-in-law) house with his niece, Karena.  Don't know if I've mentioned it, but Karena and Jonathon got engaged and Amelia and I are in the wedding party!  Very exciting!  Amelia will be one of  2 flower girls.  All of us in lilac/gray.  The wedding is next spring, so I guess I'll have to wait until we're closer to see what will fit her...and me!  Unfortunately, it feels like we're both growing;)

This Friday Amelia is having her first Bronchoscopy.  Because she was so sick this winter and was on two long rounds of antibiotics, her Pulmonologist, Dr. Marcus wants to do it.  They put her under, twilight, then put a camera down her nose into her lungs.  Take a tissue and fluid sample and suction out her lungs.  This will tell us if there is anything growing in her lungs, any colonies, that need to be treated so she can have a "clean slate."  I was told that afterwards, there is a tendency to get a fever, so we'll have to see if she'll be up to doing Hippotherapy on Saturday.

Nestor and I will be taking a class at Adaptive Design next week and we're really excited to build some adaptive furniture for Amelia.  We'd like to build her a new stander (it's a piece of equipment that we put her into so she can bear weight into her legs) but we were told that they don't build standers for children over 24 inches tall due to liability.  However, we were encouraged to try and come up with a design that might that is how all their furniture has been created in the past.  So we did!!!!  I called Adaptive Design and ran the idea for it past one of the builders, Antoinette.   Nestor and I will present it to them when we get into the workshop on Monday morning! If we can't build that than we'll build her something else.  I am hoping to get Adaptive Design out to LA.  Their furniture is so brilliant and everyone should be able to access it for their special kids -- it just makes good sense.  So much money is poured into adaptive equipment for our kids and here is a company doing it for so much less, in kid friendly colors and designs, they're "green" (it's all made out of cardboard!) and I can tell you as a parent -- the table and chair we got for Amelia has helped her tremendously in her therapies!  I'd love to help them make a move like that and support their organization to take the leap!  I mentioned Adaptive Design to Sherri, the Principal, at Sven Lokrantz, showed her pictures of Amelia using the furniture and she was blown away by their products.  Sherri wanted to know why she had never seen anything like that or heard of them.  I was told by someone at Adaptive Design that the biggest thing it takes for a not-for-profit like theirs to succeed, it's having a community based support.  I think we can do that!!!!

FYI:  For those of you in or out of NY and are interested in Adaptive Design classes, please call them.  They have one or two day classes and master classes.  You can go in and they'll teach you how to build your own furniture for your child or students.  Such wonderful people there with their hearts in the right place.  I encourage you to check out their website.