Sunday, November 28, 2010

Amelia and Max

Here are the photos of Amelia with Max, our cousins' dog.  It's the first time I've ever seen her take any interest in an animal.  It's so cool!


Take note of Amelia's new shoes and a BIG THANK YOU to Bubbie and Zadie for early birthday/chanukah gifts.  They're actually orthopedic shoes that typical kids in Poland wear.  There are numbers on the bottoms and as they wear away the numbers doctors/therapists can tell whether the child is supinating or pronating and there are inserts that you can buy to put in the shoes to correct the child's gait.   Amelia's PT uses them with the Therasuit Therapy that Amelia receives 2x's weekly.  Amelia walks really nicely in them and can't turn her ankle in them.   They're pricey but really easy to get on and off, comfortable for her to wear all day and quite stylish, I think!  If you're interested in them go to the site


Friday, November 26, 2010

What's New?

Happy Thanksgiving to everyone.  This is the first year in a long time that we weren't trekking from Nestor's family in NJ to my family in MD to be with everyone at once.  Very strange.  Instead we drove about 3 minutes to Nestor's cousin's, The Rosario's house and had turkey day with them.  It was truly delicious and we had a wonderful time.  The turkey was tender and juicy, the mashed potatoes and gravy smooth, the pumpkin pie was almost as good as my homemade (altho I think Nestor was just being kind because he kept saying "there's just some flavor, some spice in here that is spectacular!  I've never tasted anything like it in pumpkin pie"), hmmmm and the company was outstanding.  Anywho, it was the perfect new tradition for our new hometown. I am so thankful for our family and friends -- here and across the country!  I thought of everyone like crazy yesterday.

So yesterday I was talking to my folks (they each pick up an extension and it usually results with someone not being able to hear well, or one talking over the other -- tons of fun) and of course the conversation eventually rolled around to shopping.  This is the part where my father usually says "well, anything else before I hang up and let you ladies talk?" Only this time he said "is Amelia doing anything new?" To which I stopped in my tracks and thought for a half of a second and said "yeah, actually, she is."  I then went on to talk about how Amelia seems to be demanding a little more from the world around her and responding to it more than she used to.  For example, when she's on the feeding pump, sitting in her chair and watching her cartoons and I sitting next to her reading a magazine, she'll reach out and pull my shirt or arm or hand to her -- demanding my attention or giving me a hug or kiss.  Also, Amelia seems to be a much easier audience than she has ever been.  She laughs and reacts much more with a lot less effort on my part (for those of you who don't know, it's called "The Mommy Show" and it's the ridiculous things I do desperately trying to get a laugh or smile from her).  It's very exciting! 

Last night at dinner we all encouraged Amelia  to pet The Rosario's family dog, Max and she did.  The difference is that she really reached for Max.  We all laughed and encouraged her some more and she reached out for Max again and again and again and again.  We couldn't believe it.  She was actually reaching out for him and really playing with Max's fur.  We've been around a lot of therapy dogs, regular dogs, cats -- Amelia even used to have horse therapy (Hippotherapy) and has never really bothered with animals before.  This was the first time I've ever seen her really interested in an animal.  I think there's a lot to be said for how she's beginning to view the world outside herself and her toys.

But I have to say that one of the most remarkable moments to date happened this afternoon while Amelia was on her feeding pump for lunch.  So let me set this up by explaining that Amelia's nutrition  is 100% via her gastrostomy tube.  She has a high risk for aspiration and chronic pnuemonia's due to aspiration of her own secretions.  So although I love giving her flavors of food (she had literally a drop from the tip of my finger of gravy and cranberry sauce last night at dinner, which we wipe out of her mouth after with a cloth) and we try to give her a lollipop 1x daily.  It really thickens and causes much more secretions though, so there are many days that I won't give her the lolly because I'm afraid of her hyper-secreting and aspirating.  The last couple days I haven't given her the lollipop because she had her flu, tetanus and whooping cough shot on Wed. and she seemed slightly cranky -- I didn't want to mess with her.  So she's in her chair watching her cartoons and crying.  Just howling and crying and Nestor and I are at a loss trying to figure it out.  In one motion she put her hand up, pointing to the cup of lollipops I keep next to the TV and when I asked her if she wanted "lolly" she signed "give me" immediately!  We are both so blown away!!!! Amelia signing "give me" were her first words, so to speak.  She's only really used them when prompted, ie. "do you want the red ball?"

To see her put "give me" into real action, proving that she understands the context of using those words and how to utilize them on her own, gives me so much hope in looking to the person she is and who she is becoming.  Baby steps friends, I am truly thankful for them. 

Monday, November 15, 2010

Sunny and 75 Degrees

It's the strangest thing to be sitting here, in November, wearing cargo capris and a little cotton blouse.  I haven't quite grasped the concept that although it may get chilly at's going to be sunny and 75 degrees most days for us from now on.

Amelia is continuing to adjust really well out here.  Her newest way to give Mommy and Daddy (and nurses, friends, family -- whoever happens to be standing there) a heart attack is to "rock and roll".  She is probably around 45 pounds now and is learning to throw her weight around.  Amelia sits in her chair for her feedings (similar to a Trip Trap Chair) or in her stander (which she is just growing out of and we desperately need to get her a new one) and throws her entire upper body from side to side! Nestor has been doing a recur on the show "90210" and asked one of the Grips if he could have a 35 pound sandbag (they use them on set to weight down lights, screens, props, etc, anything and everything really).  The Grip said to Nestor "What do ya want it for?  To weight down your garage door?" Apparently that must be a common request.  Nestor had to politely explain our unusual circumstance and need for it.  Needless to say, we now have her chair weighted with a 35 pound sandbag -- but no joke, I think we need another one!!!!  It's a real discovery for Amelia to feel her body and it's movement in space.  AND, she is moving it quickly!  For those of you who know Amelia, she doesn't do anything quickly.  Her movements are slow and somewhat floppy, so to see her bounding from side to side is exciting. We're not exactly sure how to work with it.  Clearly Amelia is needing that stimulation, and I also think it's cool that she's found a way to provide it for herself -- but it's just too dangerous and scary to allow her to do with reckless abandon.  I've started putting a velcro band diagonally around her like a seat belt when she's in her chair, she still does the "rock and roll" but can't get up as much momentum so the chair legs no longer leave the ground!  -- as for the stander, I just put my hand on her shoulder and encourage her to stop rocking the whole thing from side to side (the stander is on it's last legs and I'm waiting for it to start splitting apart -- like Forrest Gump's leg braces in the movie).  Anyone have any suggestions/ideas?

Amelia is really getting expressive in her vocalizations and facial expressions.  She makes lots and lots of faces while she's playing.  When I talk to her she'll scrunch her nose and mouth up in response a lot of the time.  Her teacher at Lokrantz, Carolyn is one of the top teachers at her school and Amelia is doing so well in her class.  Carolyn is very well versed in Augmentative Communication and Amelia has a 4 button switch at her school table that she uses each day.   Also, Amelia has a health care worker who is always with her named Esther.  She's really terrific with Amelia and gets her up and around the 3 hours Amelia's at school.

Nestor and I were able to steal away last weekend for a couple days, to Palm Desert for a Celebrity Gold Tournament benefiting Childhelp.  It was a wonderful getaway for a wonderful charity.  Childhelp is for children who have been abused and/or neglected. There were so many precious kids there and this event raised so much money to help with their facilities and programs.  We were very honored to be there and be a part of it.

Here are some photos from Halloween at Amelia's school. Nestor is not a huge fan of dressing kids up unless they are part of the dressing up process.  So my compromise is to put her into an outfit that is festive and exudes the "Spirit of Halloween."  I thought the pants and top were hip and the skirt was actually chosen by Miss Amelia at a recent trip to I guess she was actually a part of the dressing up process (so there!)

Charming the crowds in the Halloween Parade at school!

Seriously Mom, get the camera out of my face please!!!!!

Friday, October 15, 2010 article

 some pics from our day at Malibu beach

A really nice article written about our family.

Monday, September 27, 2010

Falling Behind

Daddy and Amelia lounging in the jacuzzi...ahhhhh!

I am home today going through all the paperwork that I should have gone through about 3 weeks ago. Amelia's Medi-cal Waiver booklet -- which I've filled out mostly, but have to corner Nestor into sitting down and going through the last bit of financial's with me. Her IEP (Individualized Educational Program) letter -- which to be fair, just came home today, but had to call her Service Coordinator at the Regional Ctr. and make sure I signed it correctly and that he is on board for the big meeting next month. We are coming from NY with a really strong IEP -- more therapy than anyone around here has ever seen! I want so badly to do right by my girl, but feel a bit of a pit in my stomach regarding this piece of it. Yes, I can fight, fight, fight...and I will. But you can't squeeze blood from a stone. When we set up Amelia's NY IEP in NY, the school systems were in a different place financially. Services were still abundant and budgets weren't being sliced apart with a paring knife. A year and a half later, I'm pretty sure we're going to have to dig deeper and get creative. I know this move was the best thing for all of us -- for so many reasons, I just don't want to miss the boat on this one, ya know?

I also need to get down with CCS (California Children's Services) and get them the information they need to "determine Amelia's elegibility" for services. They're an agency set up for children who are medically fragile/critical care cases!!! WTF????? Who is more qualified than Amelia? Jeez! The thing that set me off was when I got a call from a Dr. there. I have sent all of the records requested by the nursing supervisor and case mgr. Then this Dr. calls and informs me that she's not sure if Amelia qualifies for the "type" of therapy they do there. For example, she says, our PT is more geared toward children who are "hypertonic"(high tone, spastic)...Amelia is "hypotonic" (low tone, floppy). WHAT????? Isn't therapy, by nature supposed to be individualized for each person's needs? Sounds like they have some lazy, uneducated therapists there, if that's true. But here's what really ticked me off. This Dr. is calling me out of the blue...with Amelia's file on her desk. She can pretty much tell me anything she wants to get CCS off the hook. She has the advantage because she knows everything about Amelia and as much as I've read and asked professionals/teachers/parents/therapists about CCS, everyone will tell you the same thing "Yeah, CCS is weird. They have their own set of criteria and it's really hard to figure whether or not your kid is going to qualify." Again, WHAT???? This is a Government Agency! Don't they answer to anybody? I asked what happens when a parent goes after them...I was told that as far as anyone knows, that hasn't happened. Well.....California, meet NY!

The other thing I have been truly slacking is getting the family photos up. I finally got Nestor to agree to give me the back hallway so I can jam it full of our loved ones! Hasn't happened yet. Because the hallway isn't that long, and we have soooooo maaaaannnnnnyyyyy photos, I have designed my master plan of going to Aaron Brothers and buying some of those multi-frames. I'll do it. Probably just before my folks come out at the end of Oct.

Any lastly, I feel horribly guilty because I have been very lazy and negligent in sending out thank you notes to all our wonderful family and friends who thought enough of us to send us off to California with gifts and giftcards. So wonderful! I started the thank you cards, but didn't want to send half and then the other half -- in case anyone from Group B saw the note from Group A and thought "how rude!" not knowing their's was coming soon. I truly meant to write the other half -- but the days slipped to weeks and so on! This is not to get out of writing the notes...just wanted to say sorry for not being more on top of it.

This has been the most challenging, exciting, scary, confusing, exhausting....exhausting, fun experience in a very long time. And, as always, I remain...a work in progress.

Wednesday, September 22, 2010

My Nightmare

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Wednesday, September 15, 2010

Potty Post!

 Amelia relaxing on the deck 

It has finally happened..Amelia has now gone #1 on the potty -- averaging about 2x's/day since she started school on Monday.  Woo hoo!!!!!  Her healthcare attendant, who we really like, informed me on Amelia's first day of school that she will be putting her on the potty 2x's each day at school.  So Nestor and I ran out on Monday afternoon and bought a little potty for home.  She went #1 for the first time at school and the first time at home was yesterday afternoon.  Both Mommy and Daddy were present and you would have thought we had just won the lottery with the hooting an hollering we did!  Amelia was very proud of herself too!

It's weird too because I just had a conversation with another special mom last week about how she's been toileting her son -- who is very similar to Amelia.  I was surprised because I hadn't really thought of it as a possibility for Amelia until much further down the road.  My friend told me to start making a log of when (more or less) Amelia goes, throughout the day.  Then try to put her on the potty when you think it might be the right time.  I haven't started the official "log" but I'm trying to feel her diaper and if it's been dry for awhile, putting her on the potty. 

Another thing I haven't done yet, which my friend recommended, is to get her big girl undies and put them under the diaper so she can feel when she gets wet (our kids have enough issues with sensory stuff and diapers these days wick the moisture away, so much so, that typical kids have problems feeling when they're wet) -- so I guess that's next.  It just sounds like such a huge commitment and mess!

No #2's yet...but the day is young!

Saturday, September 11, 2010

9 Years After

I can't believe it's been 9 years since we were attacked on American soil.  Nestor and I stood at the windows in our little apartment on 10th and Hudson St. and watched the unimaginable.  I remember the sheer terror and panic I felt.  I couldn't believe what I was seeing...there in front of me...not on TV but in front of my face!!!!  I kept saying, through the black smoke, as the first tower went down "it's not there anymore.  OH MY GOD IT'S FALLEN DOWN!!!"  We didn't know what to do with ourselves.

We took our dogs, Blackie and Elvis out for a walk.  Everyone was walking around in a haze.  There were throngs of people walking up Hudson Street covered in black soot -- dazed and confused, silent, crying, weeping.  They looked like the walking dead.  No traffic, just Emergency Service Vehicles.  Nestor was desperately trying to look for his sister, Evelyn, who worked in the American Express building adjacent to the Twin Towers.  We found out later that she had come directly to our apartment, but in her confusion couldn't find our correct apartment buzzer, so she went around the corner to the PATH station and got the last PATH train back to NJ where she lives.  But Evelyn didn't reach us for some time later and until then we were panicked to know what had happened to her. 

We lived on 10th Street where the 6th Precinct is located.  You couldn't even get onto our block without a photo ID with your address on it.  For weeks, vehicles couldn't get in below 14th Street, including groceries, papers, everything.  There was price gauging on milk (altho in NYC, how can you really tell), the gyms were closed, we just sat in our apartment with the TV on, day and night.  It was so somber and dark where we lived.  The black soot kept settling on the window sills. 

Time ticked by so slowly.  One day we decided to go for a walk and head east.  The strangest thing happened -- the farther east we went, the livelier things became.  By the time we hit Alphabet City -- life was happening.  The outdoor cafes and bars were spilling over with chatter and laughter.  Sounds of dishes and cutlery, cars, traffic....LIFE.  We had been living in a war zone in the West Village -- literally.  It felt so good to get out, have a drink, some food and actually smile again. 

Those were such black days -- for the entire nation.  I am grateful that I was there to see it firsthand.    As horrific as it was, it was an event that I will sadly hold in my heart forever. 

In the weeks after, there were hundreds of people camped out on the West Side Highway with food and water for workers in Emergency Service Vehicles.  We all learned to look at Policemen and Firemen in the eye as we walked by them on the streets and give them a solid "hello" and "thank you."  Seeing the out pouring of love and support to our nation's first responders -- firefighters, police, EMS and all the other people that pitched in their efforts -- they are our heroes. And of course, remembering all the people we lost 9 years ago...who will never be forgotten.

Sunday, August 8, 2010

Spike Visits LA

 Spike, Nestor and I at Disney Studios

Spike came into town this past Monday and we had a jam packed week of fun!  Tuesday night we attended the Red Carpet Premier of "The Expendables" and Wednesday night we saw a screening of "Secretariat" at Disney Studios.  "The Expendables" was disappointing to us.  Such a huge cast with so much potential -- but not much of a story.  Just straight action, CGI, pyrotechnics and tons of corny dialogue.  "Secretariat" was amazing!  A real movie for the family.  The performances were terrific and I must have cried 10 times!  It was directed by Randall Wallace ("Braveheart") and the racetrack scenes were just so exciting!!!!

Amelia was soooooo happy to see her big brother!  She would light up whenever he would come in to see her and she just can't keep her hands off of him!  Amelia would laugh and dance more whenever he was around.  It's so cute.  She doesn't see him all the time...but she definitely knows who he is to her.  Smart cookie that girl of mine!

Here they are in her room.  So sweet!  

We also had a BBQ on Wednesday and Spike met his cousins who live 10 minutes from us in Calabasas.  We sat around and talked -- even pulled out a Ouija board at one point as they told us a story about the woman who had owned their house before them and had committed suicide in the garage.  Creepy!  I'm not sure if Spike had even met them before and definitely not their kids, so that was a fun (spooky) time too! 

Friends came by to visit and hang out.  Nestor and Spike got to have a lot of quality father-son time.  Dinners and lunches were prepared and consumed.  All just passing days in paradise!  Saturday morning my cousin from DC came by for a quick brunch, while passing thru from LA to Santa Barbara.  Yesterday, Nestor and Spike went golfing and then met Amelia and I at the Calabasas Commons.  We were sitting by the pond/water fountains they have there and out of no where, a tortoise walked out into the walkway.  We've been there a few times and never saw any tortoises. We concluded that they must be new there because A) they looked lost, B) other people were reacting to them as if they had never seen them before, C) there were like half a dozen lazing on rocks all of the sudden!  Nestor and Spike kept picking them up as they crawled out and put them back near the water.  So funny!  I'm sure the tortoises were cursing us under their breath but they looked like they were going to get trampled by strollers and what not.  Last night Spike and I made Toll House cookies.  It's our thing.  We had a 3 teaspoon raw cookie dough limit each! And today we had the weekly get together here with our LA family.  So wonderful to have everyone around and pitching in here and there to get lunch on the table before Spike had to leave for the airport.  Sad to say goodbye...but I'm pretty sure he'll be back!!!!!!

Sunday, July 25, 2010

Settling in

There is so much to say...but this is not that post.  This is just a howdy do, we-haven't-fallen-off-the-planet post.  We're settling in nicely and hosted our first little family dinner here lastnight.  The ribs were a little tough, the boys didn't like the watermelon salad (the girls did tho!), Nestor thought the mac&cheese was gritty (from the parmesan) and the monkey bread took an extra 25 minutes because the oven got turned off...but that's ok!  We had a wonderful meal and everyone -- friends and family have been as generous and helpful as anyone could be. 

So far we're not missing NYC.  The friends and family there...YES! But the lifestyle and teeny tiny apartment...NO!  We are truly living the california lifestyle at it's finest.  We LOVE our house and we have a wonderful nurse, Patricia, who is remarkable with Amelia.  She has worked with lots of kids like Amelia, accompanying them to PT and OT -- therefore, she implements a lot of the techniques she's learned with Amelia each day.  It's wonderful.  They have "school time" where she works on OT and colors/numbers etc. techniques.  We are so lucky to have found her!

I've been working with Amelia with colors too and she's really getting better at sorting her colored boxes. I'm constantly amazed by her.  Today, I showed her pictures of her toys and asked her what she wanted to play with.  I was pretty sure she wanted her sorting boxes, but gave her 4 photos to choose from off the velcro board.  She chose her shape sorter...I was a bit surprised.  When I went into the other room to get the toy, I came back to find that she had put the picture of her shape sorter back onto the velcro board and had taken off the photo of her sorting boxes!!!! I was SHOCKED!!!!  She is so smart and it is so exciting to see her doing things to help herself communicate!!!!

Here are some quick pics I just took to give you a sense of this place.   I'll get more inside the house as we get the pictures up and order a dining room table!!!! 

Amelia enjoying her lunch!

The deck
 The backyard and back of the Guest House
  This is what I see when I wake up each morning
The front patio with jacuzzi

Saturday, June 26, 2010


It is a week of goodbyes.  I wasn't prepared to feel the way I do.  All of the people who have helped us navigate through this world on the day to day are staying in New York and we are leaving them. 

Thank you:

  • To our wonderful family -- we would never have been able to make this move without all of your love and support. 
  • To our irreplaceable extended family at UCP, NYC -- you have no idea how important and necessary you have been to us and continue to be.  Thank you, thank you, thank you!
  • To our wonderful therapists -- Amelia has grown so much under your guidance and hard work.
  • The most remarkable preschool, Roosevelt Children's Center through YAI -- I cannot thank you enough for making our kids' world as "normal" as possible.  Amelia's principal, coordinators, teachers, therapists, aids, and everyone else that makes that school run are exceptional!  Your smiles and warmth make it a place we will always cherish!
  •  Our amazing nurses and respite workers -- you have given me space and place to breathe.
  • Our doctors who do what no one else can do for our kids and have made sure that Amelia has all she needs to be as safe and healthy as she can be.
  • To Adaptive Design -- for teaching me how to use my own hands to build - whatever I can dream up for my daughter and so many other children, who have yet to "join in" because they just can't...YET. 
  • To our friends -- ALL of our friends.  That's a broad term, because I don't think you can have a team this incredible around you and not consider each one to be a friend.  
  • To our Jozette -- you are so special to us, like a sister.  You slid right in to our family knowing just what to say and do each step of the way.  You are ambitious and intelligent.  I cannot wait to see what you can do!

It's been too much this week.  So overwhelming.  It's a week of lasts for me.  Each thing I do I say "this is probably the last time I'll be  ____________" and it's too much to comprehend. 

On the 16th, Amelia had her Luau prom at school.  So sweet! Each classroom had a different activity in it and the classes rotated, spending 20 minutes in each room.  One room had necklace making with string and paper rings.  Another had Pina Colada making (virgins, of course) where each child got to help put in the mix and then use a switch to make the blender work.  One class had Hula music and the kids played instruments along to the music.  And another had backgrounds, props (grass skirts and coconuts) and even a Hawaiian catwalk where pictures were taken of the kids.  The last one had water tables and sand tables -- you know, so the kids could go to the "beach".  Then all the classes ended up in the gym for dancing!  It was so cute.  Amelia was absolutely pooped by then. 

 beautiful girl!

waiting for the bus

doing the catwalk with Luiza

playing ocean sounds on her keyboard dude!

playing at "the beach"

The Friday of that week, our unbelievable respite worker, Jozette, threw Amelia, Nestor and I a surprise party at our favorite spot, Cowgirl.  We were blown away!!!  She spent a month scheming this thing out.  Inviting all of our service coordinators, former nurses, our other respite worker - Patricia and all of Amelia's therapists.  Jozette even got us a scrumptious cake (on table) from her cousin's bakery in Brooklyn - OHHH!

Juliana (MSC), Karen (MSC), Carol(SEIT), Patricia, Amelia w/ Jozette, Nestor, Keisha (LPN), Debbie, Elana (SEIT) (from left to right) at our surprise party

  And yesterday, Amelia's school, Roosevelt Children's Center gave Amelia and her nurse, Luiza a "Goodbye" party.  Amelia had a really great time.  Her teachers gave her a beautiful photo album filled with her friends, teachers and therapists at school.  We will truly cherish it and look at it often!  Also, one of the boys in Amelia's class gave her a pretty little purple dress from H&M.  Thanks to him and his Mommy too! 

 enjoying a chocolate cupcake. what?

I came to NYC to go to college at NYU.  I was 18 and thought I would conquer it!  Just like every other 18 year old, right?  But what I learned was that I didn't want to conquer, I wanted to be one of them.  I love this city!  The energy, the beauty, the history, the life -- I love it all!  I never thought I would ever leave it.  But 21 years later, I am sitting in my living room, staring out the window with walls of boxes to the ceiling all around me.  I am leaving the day after tomorrow. 

What I am trying to remind myself is (it's hard when you're living in an episode of "Hoarders") that as many "lasts" as we are experiencing -- there is going to be a whole new world of "firsts" when we get to our new house.  A HOUSE!  That sounds pretty wonderful to a girl who has been living in a 600 square foot apartment (with two other people -- along with countless nurses, therapists and others).

Even if it was in the greatest city in the world.

Tuesday, June 8, 2010


Here's the finished product...along with a pic of the little girl who will be using it!!! Awwww.

Mommy in action:

The castle on a sunny day, with a golden path, front view:

The frog prince, side view:

The princess in her rose garden, side view:

Where she stands:

A view from above:

Amelia, the little girl/love of my life:

Wednesday, June 2, 2010

Stander Update

I've been working furiously to complete the stander that Nestor and I made for Amelia at Adaptive Design.  Loving the painting fun part!  Here's what I have so far.

The front with a not-yet-painted castle:

And these are the two sides.  I'm also working on a rose garden around the bottom.  I'll post the finished product including the little girl who will be using it in the next few days! 

It's been remarkable spending time over at Adaptive Design.  Their mission is to provide equipment for every child that needs it.  If you can dream it, they will build it.  I am overwhelmed by their talent and commitment to the community.   I am hoping to create an Adaptive Design community in our new hometown of  LA.   To bring the simplicity and efforts that have started here to another place will be an adventure indeed! 

Due to our economy, they are having a really hard time keeping their doors open.  Please, if you're looking for a worthwhile place to donate any amount of money, Adaptive Design is above and beyond anything I've seen before.  They are building eco-friendly, kid friendly adaptive equipment out of basically "found" materials.  They use Fresh Direct and Whole Foods boxes, Trader Joe's brown paper bags for sealing the edges of the cardboard.  Their tools of choice are jig saws, steak knives, elmer's glue, dowels and sand paper.  Can it be any more simple???????  This is good for our kids, our wallets and our planet.  You can't imagine how strong and durable their pieces are.  And they're not trying to "give you a fish" but are so happy to teach you "how to fish".  They are offering classes as a model to what you can do yourself.  They're happy to make the equipment for you and get paid -- don't get me wrong (and their prices are a fraction of what most adaptive equipment costs) but they would rather see their model expand globally.  

Adaptive Design's fundraising includes "Perch for a Purpose" and "Caring Chairs." Click on the link above to learn more about them. 

Tuesday, May 18, 2010

The Big Move

 My Mom and I changing Amelia's major diaper, on Mother's Day, out the back of our SUV in the parking lot of a diner in Phillie.  Nestor snapped this without our knowledge...obviously!  Hilarious!!!

We're really doing it!  We're moving to LA.  All the gears are in motion and it's happening.  We are in escrow (and love) with a home in Woodland Hills.  It's charming and we couldn't be happier.  It has a woodsy feel to it which we are very drawn to.  I think we'll be very happy there and I know Amelia will love it.  She's going to have her very own room.  I've been going crazy looking at furniture, paint and accessories (I want to get her one of those little chandeliers from Target and a cozy chair we can snuggle up on and read books...or have a lazy breathing treatment in the middle of the night) fun!  I think we're going with a very pale pinky peach color and a shabby chic kinda thing.  Of course the bed is the main focus.  Amelia's been in a crib and now she's going to transition into a big girl bed.  Of course, that's been a bittersweet point for me because it's going to be an adaptive bed.   Our friends have a sleep safe bed which they love.  We went there to visit them and I was happily surprised to see how nice it looked in real life, as opposed to online.  However, at the end of the day, I WANT A PRINCESS BED FOR AMELIA!!!!!  So we're just going to have to adapt Amelia's adaptive bed into a princess bed.  That's all there is to it!

I'm still sorta in a calm denial that our life is about to change dramatically.  We sit on the phone and talk to people out in LA -- making plans, getting referrals, planning for "when we get there" without the reality that this is ACTUALLY HAPPENING.  I think when we actually start to roll up our sleeves and get down to the business of throwing out, donating and packing up, it'll hit us!

One of the many major changes for me will be making real grocery lists.  I make them now.  Puny ones.  Ones that are sufficient for a day -- but in the 'burbs, there's no "daily" lists.  In NYC, if I run out of milk or forget eggs or decide I want to make cookies...I have hundreds of places (well, maybe not hundreds) less than 20 feet from my front door to go get whatever my heart desires at whatever time of the day or night I desire it.  That little party is over.  I better start practicing the fine art of figuring out what I need before I leave to go to the store and not just trying to remember what I need when I get there.

Also, when Amelia comes home from school on a beautiful day, I throw her in the stroller and we hit the streets.   We go to the park and swing, or the grocery store, or to see puppies in the window, or mommy gets frozen yogurt, etc.  Can't do that in LA.  I'll have to pack up, get into a car with her, drive someplace and I can tell you now that the energy in a mall or state park is quite different than the energy in the west village.  

All that to say, we are ready!  Ready for a real house, with real closets and bedrooms.  A place to invite family and friends over to hang out.  SPACE!!!!!  Also, a real backyard with a BBQ, ooh -- and an extra bathroom!  Oh, it will be so nice!

The details have been crazy.   Firstly, we have to make sure the whole house thing even happens -- from personal experience I can say that as sure as you may be about something, there's always that slim chance that something unforeseen happens.  Secondly, we have to sublet our place in NYC, which is well underway and looking good!  Also, we have a POD from our house upstate that we packed up last summer that we need to ship out west and now we have to pack up the NYC apt and get that stuff out there.  Then there's shipping cars and Nestor's motorcycle.   Plane tickets...traveling with Amelia on a plane...transporting medical equipment and supplies.  Then, there's setting up all the new services for her through the North LA Regional Center, CCS (California Children's Services), Medi-Cal, all new Drs. and nurses.  New Team Amelia! 

So the plan is for Amelia to finish school here in NYC at her incredible preschool, Roosevelt Children's Center and then hop a plane out at the end of June and get her into school to start summer session at her new preschool, Sven Lokrantz, by July 7th. 

California here we come!

Monday, May 10, 2010

Among the Giants


Among The Giants from Adaptive Design on Vimeo.

Wednesday, May 5, 2010

A Chat at the Park

Today Amelia, Nestor and I went to Bleecker Park as we usually do on beautiful days, after therapy and before her respitory treatment and dinner feeding.  We do the only we know how and then most times we'll go sit by the sandbox to watch the rascally kids at play.  Amelia loooooves this!  She laughs and plays with her stroller toys.  Jolly good fun.

Today we had a visitor.  Probably about Amelia's age, possibly a little older (like 5):

Boy:  "Does she talk?"
Me:  "No.  Not yet."
Boy:  "Why doesn't she talk?"
Me:  "Well.....her muscles that help her speak aren't strong enough yet for her to talk."
Boy:  he watches Amelia for a moment thoughtfully, then with a proud nod says "You should give her broccoli."
Me & Nestor: "Wow!  That is such a good idea!  We'll have to try that"
Boy:  now beaming with pride "Yeah.  I have a baby sister and she doesn't talk yet either."

At that point we were interrupted by one of the boy's playmates and he was dragged off.  The three of us watched him take off and Nestor and I chuckled to ourselves.


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.

Monday, March 22, 2010

Sunshine On My Shoulder Makes Me Happy

What a glorious weekend we had here in NYC!  Tons of sunshine and warm weather.  Amelia was off of school on Friday too, so we had a loooong weekend -- just us girls!

Well...I was able to sneak away on Friday evening to have some drinks with my friend, Joey.  Had a fun time at our usual haunts in the West Village.  Besides the great drink deals in gay bars (2 for 1 until 9pm) I also love them because...and this is man in the joint is looking at ME!  They don't care.  As a matter of fact, they'll tell you if your shoes are fierce...if not, they just go along their merry way (no pun intended).  I did the meat market thing in my 20's into my early 30's.  I'm not selling anything anymore.  So it's really nice to go out with an old friend and just be able to talk and not worry about the scene.

Saturday I woke up with a bit of a headache (no surprise) so Amelia and I hit the street, after Mommy had a couple cups of coffee and bagel.  We went to Bleecker Park (swings, slide & walking on the jungle gym), then to the Farmer's Market across the street, then up to Union Square, down University (I showed Amelia my dorm from NYU "Mommy's first home in New York!") around Washington Square Park (which is closed again for renovations) and back home via Bleecker Street.  And that was just before lunch!  After our afternoon nap (and I did say "our") we made our way over to the Hudson River Park.  It was magnificent!  We went to the kids park and walked all over the place and then watched the sunset.

On Sunday Amelia's BFF, Darmia, had her Birthday party at the Scholastic Bldg in Soho.  Jozette (our Superhero In-home Respite Worker) joined us.  It was so fun!  Amelia had such a good time and our gracious hosts, Auntie Donna and Uncle Shawn were wonderful!!!!  They had circle story time, limbo, freeze dancing with instruments, we made peace sign pillows and blinged up some little cardboard jewelry boxes.  A little girl we met there, Emma made Amelia a jewelry box.  I also took home some jewels and a box to do another one for her.

Somehow when I sat down to do the box today...I ended up with THIS:

That's right, Amelia is the first contestant on "Pimp My Adaptive Chair".  How'd I do?  Never leave me alone with crafty things and a hot glue gun!!!!!  I couldn't resist.  Nestor's gonna laugh me outta the house when he comes home from Miami tomorrow and sees this.

 I have blaringly opted out of writing a lot about the BIGGEST Healthcare Reform Bill of my lifetime -- and one that Amelia will benefit from GREATLY.  I am excited about what this means for all of us ...especially for  my little girl who is medically fragile and has blown thru over half of her lifetime cap in the four short years she's been on this planet -- due to hospital stays, surgeries, medical equipment and nursing care -- just to name a few.   Some are hyperventilating while others of us are breathing a great sigh of relief.  I feel like it's so fresh and fragile -- I feel like we need to digest it for a little while.

Whatever your views, this is the greatest country in the world and I am embracing this change with wide open arms.

Friday, March 12, 2010

Ready for Spring

The view from the bathroom window at my parents' house in MD

My great-uncle, Sid passed last week.  My mother's uncle thru marriage.  He owned a somewhat infamous restaurant in Baltimore back in the 50's that was famous for their "4x4's" which was a delicious (I'm told) 4x4 hamburger, served in a basket with the most mouthwatering french fries and onion rings (I'm sure my father isn't romanticizing them;).  He adored his wife, my aunt Barbara, for ages.  When she passed several years ago, he kept on.  Enjoying his children, grandchildren and great-grandchildren.  He was very blessed, very loved and passed away with all of them by his side.

Earlier today, Nestor and I made our way up to Lincoln Hospital to visit Nestor's aunt/godmother, Titi Luz.  She was on a respirator, being fed thru a tube and unconcious.  Her body was swollen and cool to the touch.  The doctor came to speak to us and told us that the prognosis isn't good, she's having organ failure and they don't expect Titi Luz to make it out of there.  We held her hand for awhile, said our goodbyes and came home to get Amelia off the school bus.  Nestor's sister, Evelyn just called to tell us that Titi Luz has passed.  There is sadness and relief in this for us.   She was Nestor's father's sister -- the last surviving of the siblings.  Amelia is named for her mother and I think she always felt an extra affinity towards her because of that. Titi Luz was married to uncle Angelo, who passed several years ago, for decades.  They never had any children together, but she had a stepson from uncle Angelo.  

I feel very fortunate to have gotten to spend time with this warm, loving, generous, strong woman who was a force to be reckoned with!  She was about 6 feet tall, legally blind and LOVED to talk!!! Wow, did she love to talk!!!!!!  Spanish. English. Whatever!  She lived in the Bronx and couldn't be moved.  Refused!  She lived alone and had attendants who came by daily to help her.  A couple months ago, just after the holidays, we made the trek up to Titi Luz's apartment. On a rainy Sunday, Nestor, Evelyn, Carlo (Evelyn's husband), Amelia and myself all went up there.  Evelyn and Carlo brought the divine food (as always!!!) and we brought the sugar (that would be Amelia) for a visit.  We sat around for a few hours and gabbed the afternoon away.  Titi Luz loved listening to Amelia laugh while she watched her cartoons.

 As we bid adieu to winter this weekend (don't forget to spring forward sunday -- this announcement brought to you by my inner "father" voice)  Amelia continues into her 5th week of antibiotics, per her Pulminologist.  She was worse, then better, worse and now getting better again.  They don't want to pull her off until she stops coughing up the green goo.  I agree.  No fevers tho, so that's a great thing!

Amelia has been very verbal lately and will make sound at anyone who dares to hold a conversation in or around where she is sitting -- particularly if it's me getting on the phone.  I refuse to succumb to her dictatorship...she tells me when to wake up, what cartoon is acceptable and now this???? Ma'am.

Obviously, as I mentioned above that Nestor and I went to visit his aunt, Nestor is home from LA.  After a month away -- he finally came home on Wednesday.  He always comes home eventually.  Only to get a call last night (Thursday) that he is flying out on Sunday, for a week and a half to Miami.  Oh well.  Tonight we're having a date night, tomorrow to see his mom and family in NJ and then off he goes!!!!  Ah well, that's show biz.