C-A-L-I-F-O-R-N-I-A

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 today....tomorrow...doctor'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 there....so 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 work...as 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.

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 key...no 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.

Ready for Spring

 

2/18/10 

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????  Uh-uh...no 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.

One Grandmother's Devotion Led to New School for Kids With Disabilities - ABC News

Grab a hankie. This woman is truly inspiring -- and knows the true meaning of "it takes a village!"


One Grandmother's Devotion Led to New School for Kids With Disabilities - ABC News

Adaptive Designs!!!

Da-da-dah! Introducing Amelia's newest and greatest play space! Thanks to everyone who contributed towards purchasing the chair and table from Adaptive Designs. They created sturdy, easy, functional and beautiful furniture for Amelia that actually looks like a child should be using it (for those who know what adaptive equipment looks like understands what I'm saying here!).

This is an action shot of Amelia's doll, Anna as Amelia sits in the chair -- tolerating my little photo shoot! Notice her feet are on a platform. It is stacked with four levels of foot platforms. They can be removed as she grows. Also, the seat has a removable piece that puts Amelia at a 10% decline when she sits in it. This is to engage her trunk muscles. It's "active" sitting.

Here she is sitting at the table. You can see how nice and supported Amelia looks sitting at her big table! She loves playing with her toys there and has become a champion star stacker!!!! The great thing is that we/her therapists/another friend can pull up a chair to the other side and play with her.
Amelia is so proud of herself! What a big girl!!!!! This has become a really important place for her to play because she is safe and supported which enables her to focus. I can't believe this wonderful furniture is made of multiple layers of cardboard. You can't imagine how strong and incredibly lightweight it is! The link to their site is on the lower side of Amelia's blog -- definitely worth checking out!!! Not only are their products incredible, but they offer classes on how to learn to craft your own projects AND they are some of the nicest people you will ever meet!

With Nestor still away, Amelia and I journeyed to Baltimore last week while her school was on break. We spent a lot of quality time with family and friends there. Jackie, my sister and I were able to steal away for a couple of hours while Bubbie and Zadie babysat. We went to the mall and had a ball at Nordstroms and Forever 21 (I am now laughing at the incident where I asked the salesperson if their "sizes run small?" and she told me "yeah, our clothes are for teens, so you should try another store further down the mall" -- ha, ha, hah, silly girl!)

I reconnected with my 7th grade BFF, Jill. What fun! I met her two spunky angels, Sophie and Oliver. They were adorable and Amelia loved meeting them. She especially loved the pictures they brought for her and the beautiful jewelry box Jill made.

Amelia also loved spending time with her cousins, Maya and Ezra. They were so sweet with her and tried to help out when she played -- doing lots of hand over hand with her. I was so happy that they were spending so much time and paying so much attention to Amelia. Below is an unchoreographed moment I caught of the two girls playing seperately while they leaned against each other. I love it!

Restoring The Power To Walk | Parade.com

This is a really important step for so many people. The article touches on CP and Multiple Sclerosis towards the end. Thanks for saving this for me to see, Mom!

Restoring The Power To Walk | Parade.com

Shoes

Amelia having breakfast

Amelia is growing so quickly -- I can't keep up. For one thing, like most women, she has a very extensive wardrobe. Tons of hand-me-downs, plus Bubbie and Zadie take the kids on a back-to-school shopping spree each year before school starts AND we just got out of a very heavy holiday and birthday season. This means that every nook and cranny of our little apt is crammed (very creatively, I might add) with all her little outfits, shoes and accessories. Recently her feet had a growth spurt and I had to run out yesterday to buy her new shoes. It's not as critical with a non-ambulatory child to get them the most expensive, well made and supportive shoes -- when she walks it's in her braces -- so we just go for cute. Works for us!

NEW SHOES!

This has been a curious week of ups and downs. Amelia, Nestor and I have been fighting colds since last weekend. No fevers for Amelia, just lots of secretions. It's been rough because I've been up with her nights -- and I'm trying to fight off my own thing (no rest for Mommies!) -- but really great because she's getting thru this without antibiotics (very uncommon) just lots of respiratory therapy to clear her out.


Nestor and I had romantic dinner on Tuesday nite (thanks Jozette! -for the giftcard) and on Wednesday I drove him to the airport to go to LA for a month or so. Usually these drop offs are very hard for me, but not this time. We have had such a great couple of weeks together, alone and as a family, it made his leaving easier. Strange -- but I really felt ok when he got out of the car. Usually I drop him off and as I pull away from the curb I start bawling like a baby. This lasts until I get lost on the ramps getting out of the airport and then thru my haze of tears and swollen eyes I have to figure out where the hell I am and how the hell I'm going to back on the highway or parkway -- or whatever the heck they call the damn thing that gets me back to the city. By then I'm just annoyed and forget all about why I had driven all the way out to the airport in the first place!!!

So Amelia and I got thru the week unscathed. Still fighting off our colds. By yesterday I would say we're both over the hump and sleeping thru the night nicely. Ahhh. Yesterday my friend Sarah came into the city to visit us for the day. It was really nice spending quality time with her. She's one of those friends who's been in my life for so long -- thru different apartments, dogs, boyfriends, husbands, etc.... Someone you know will be with you till the end, ya know? Anyway, we journeyed to Chelsea Market and Amelia and I settled in to watch this really amazing String Trio playing live in front of Amy's Bread, while Sarah went to get a coffee. Amelia was really digging it! I wanted to give the band a dollar but only had a $20. I asked a jolly 60-ish man behind me, who was there with his family, if it would be rude to take change out of the musician's tips, at which point, he reached into his wallet and gave me a dollar to give them. I laughed and refused, but he pushed it into my hand and said he and his twenty-something (son? nephew?) had already tipped them. I felt so odd. Like I was standing with "Every Uncle". I really loved this happy man and his sweet family in those moments. When Sarah returned with her coffee she offered this man back his dollar -- to which he laughed a jolly laugh -- and told us to please keep it -- or give it to the band. Yes Virginia, there is a Santa Clause...he hangs out at Chelsea Market in the off season!

Today Amelia and I are doing the Mother/Daughter hang for Superbowl Sunday. Amelia isn't really into either team, so we'll probably just find some chick flick to watch.