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Wednesday, September 24, 2008

Break time

Today is our last day here at Therapies 4 Kids...for a week and a half!!!! Yes folks, Amelia has been doing such tremendous work here that we've been generously invited to stay on for the month of October. This has truly become our home away from home.

As of Friday, Amelia has begun to walk, AFO's (leg braces) on, with support under only one arm. It's amazing! She is so steady standing on her feet and on Saturday, when we were in the city, I danced for the first time with her. She was standing in front of me holding on to my two hands. Just standing and letting me sway her arms side to side while I boogied down. It was so cool. Amelia just feels so solid.

This has all come with a lot of work, sweat and endless tears. Amy (PT) has been diligent in her focus on standing. She stands Amelia for 45 minutes to an hour each day in the bungees to build her tolerance. Her feet are bright red by the time we finish. Then we walk her (supporting under one arm) out to the treadmill and do a little walking on the treadmill. We're all improving our upper body strength as well as take turns holding Amelia on the treadmill -- and trust me...it is quite the workout. I think maybe "Crunch" could create a new class using this. Could you imagine? All the ritzy women show up for class in their stylish workout clothes and $200. sneakers and there's a bunch of special needs kids with AFO's on, ready to walk on the treadmill. Hee hee!

Anyway, we are so grateful for this gift of therapy (thank you Bright Steps Forward) and are fortunate to be in a position to take the time away to do it.

The one thing we have felt is lacking in our time here has been Amelia's lack of speech therapy. As much as I try to do a little something with her, the bottom line is, I'm not a speech therapist and when Amelia is working so hard all day...she's really not interested in me "Mommy...who is supposed to save me"...poking around in her mouth or trying to feed her baby puree. So she blows me off BIG TIME. I have been at a loss. The other unfortunate thing is that we still don't have an SLP (Speech Language Pathologist) lined up for her when we get home either. It's been impossible to find anyone who can cover her EI (Early Intervention) mandate -- or partial mandate of 5x60 weekly, in the West Village. So it's no better when we go home.

Monday I decided that it's been way to long for a kid like Amelia to go without speech therapy. I know that all the PT we're doing with her is strengthening her overall -- which will ultimately help her feeding skills, but nonetheless, I want to find someone out here in Long Island. So I called a bunch of clinics and hospital programs, including an intensive feeding program at St. Mary's Hospital for Children -- which is equivalent to Therapies 4 Kids in the speech, feeding and swallowing world. I wanted to use Amelia's EI services out here, but was told by our Service Coordinator, (the lovely and extremely efficient, one of Amelia's biggest fans) Tamara Wachtel that by the time we get all the paperwork transferred over to Nassau County, we'd be home -- so that wouldn't work.

So I did what I always do when I can't figure something out, in this crazy special needs, services, therapy world, I find myself in -- I called Carrie (see "Sam's World" under Amelia's friends). She sent me in the right direction, as always, and hooked us up with one of Sam's speech therapists, Marie. Marie moved out to Long Island 6 months ago and according to Carrie, is incredible with augmentative communication and feeding skills. I spoke to her yesterday and she sounds fantastic. We're really excited to work with her and she has time for us on Wed. and Fri. We'll have to travel about 45 minutes to get to her...but who cares! It'll be worth it. And I feel like we have the whole package now.

Sadly, I don't know if all of Amelia's therapists at home, through EI, will stay on board. We have a lot of new therapists coming in who don't even know Amelia yet and therefore have a limited investment. Also, we appreciate that her therapists can't afford to leave their schedules open for us. So, I've spoken to a few of them and I have a few more to speak to...but ultimately we have to do what's best for Amelia and this is too wonderful of an opportunity to pass up. Next year Amelia will be in school and we won't have the luxury of just pulling her out for two months to attend an intensive therapy program.

This weekend we head to Baltimore for the jewish holidays (L'Shanah Tovah -- happy new year everyone!) and to take Amelia for hippotherapy (horseback riding therapy) on Saturday and Sunday. The instructor, Lynn, was my horseback riding teacher when I was a kid...so this is gonna be fun. I haven't been to her farm since I was a pre-teen. Lynn did hippotherapy for James Brady(from Reagan's administration) as part of his rehab. We are really looking forward to seeing how she responds to it.

Through Carrie, we have located a woman in Brooklyn who does hippotherapy using your childs' EI services -- which is just incredible, so we're working on lining that up for Amelia on Saturdays, when we're back in New York.

So much to do and time is just flying by. Soon the holidays will be here. I can't believe my little girl is going to be 3 in 3 months!

Friday, September 19, 2008

Daddy's latest film project

video

This is the long version of the film shown at the
"Stars and Cigars" Gala for Bright Steps Forward
on Tuesday, Sept. 16th

Thursday, September 18, 2008

"Stars and Cigars" Gala

The fundraiser for Bright Steps Forward (BSF) was a success. They raised about $150,000 for our kids. Our friends came to lend their support and we are so grateful to them for being there. Nestor and I had a wonderful night out and we look forward to the next event -- which I believe will be coming up in a month or so. I have been working on trying to upload the video that nestor put together, but have been unsuccessful. Two hours of futzing around is my limit...so i promise to try again tomorrow. Sorry!

We're almost finished our 3rd week out here on Long Island and Amelia has been doing such incredible work the past few days. Really strong crawling and walking.

We've even been putting her on the treadmill and she's been doing between .1-.3 mph with beautiful reciprocal movements. Amy (PT) sits behind her on the treadmill, we rigged a step (from step aerobics) across the treadmill belt so she can sit down and not kill her back standing over Amelia while she walks and gives her trunk support. But Amelia's been taking all the steps herself like the champ that she is.

Crawling has gotten stronger too. We still have her in the arm braces to keep her elbows from buckling, but again she's initiating the arm and legs movements reciprocally.

What we glean from this is that she is getting it! She understands the movements, she just needs to build the strength to do it on her own -- which she is doing little by little. On Monday, we walked her from the therapy room to the larger gym in the front space, probably about 50 feet, two of us holding her up under each armpit. On Tuesday, we did the same walk but one of us held her under the armpit and one of us holding her under the elbow (less supportive). By today, Thursday, Amy (PT) was walking her by holding her hands. It was unbelievable!!!!
Amelia was definitely wobbly, but man oh man...she looked good!!!!!! She really is doing this and it's simply remarkable to watch as each day unfolds some new, momentous accomplishment.


Thursday, September 11, 2008

You Must Learn to Stand BEFORE You Learn to Walk

Everything is going great out here in Great Neck. Amelia is being a toddler and fighting us daily in her therapy...but she is also making good strides.

We have decided to take a step back from the gait trainer because it seems to be making her lazy...that's right, I said lazy. The past two days she's just been slumping into it each time we put her in and not taking all the nice steps she has started to take just days earlier. So we're focusing now on standing to build her stability and bearing weight into her hands and feet. She hates us for it. We attach bungee cords to Amelia's waist (four all together, they run parallel to the floor and can be raised and lowered to give more or less support) from the spider cage and she just stands there and howls at us. It's not easy to watch. We try our hardest to distract her, playing with her, singing to her, hugging and kissing her...but she is 2 -- with attention span of a fly. But it is time well spent as her knees are buckling less and she's able to stand for longer periods of time.

We are getting ready for the big Bright Steps Forward (BSF) fundraiser "Stars and Cigars Gala" next Tuesday night. Go to this link to read a local Staten Island paper's listing of it: http://www.silive.com/siadvance/stories/index.ssf?/base/opinion/1221048023134730.xml&coll=1

Nestor has been working his little tail off putting together a video to be shown that night. A few minutes to sum up how Amelia has grown in the past 2.5 years and how much BSF has helped us and given us hope for our little girls' future. He is almost done editing the clips and his little masterpiece brings tears to my eyes. I'll post it after next Tuesday's event so you all can see it.

Below is a poem that I've seen many times, but after seeing it on my friend Jodi's blog, I wanted to post it here too. Ciao Jodi, grazie!



To You, My Sisters
by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to
try.

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland " and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy . We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.

Wednesday, September 3, 2008

Back on Long Island for September

So we've settled back into the Ronald McDonald House out here on Long Island. We have just completed Day 2 and I must say that Amelia has definitely been very tired, but is getting back into it.

I haven't been as diligent on the side sitting or quadriped playing as I should have -- I mean I do it, I do, it's just that as soon as she kicks herself out of it and yells at me, I sort of don't push the point and move on. But I do a lot of walking with her and today we used a Rifton gait trainer that Amy had lying around here at Therapies 4 Kids. It belonged to another little girl (it's purple and sparkly) who outgrew it. We're going to try a work with it everyday and if we see Amelia really getting it, Amy might ask the family if we could "borrow" it -- they're about to donate to the UCP lending library anyway, where we go all the time for everything so....all of Amelia's equipment will end up there eventually too (hopefully sooner rather than later). As you know, we have a Smartwalker for Amelia, which she just isn't strong enough for yet. This one has a torso support, a tushy suport (which we actually didn't use because she would just sit down on it) AND arm and hand support, where she doesn't have to actually hold on. It has velcro straps to strap her hands to the walker until she can hold on herself. Amy said she actually looked really good in it because although Amy was pushing it from behind, Amelia was taking the steps herself -- which Amy called impressive for her first time in. YAY! Go Amelia!!!!

Our first 3 HBOT dives were a bit of a nightmare for me because she just kept fighting me! She would be itching to get away...and seriously, there is NO place to go!!!! She would be all squirmy and complaining, her breathing sounded ragged and difficult -- and yes, her Backyardigans were on. Although, by this afternoon she was happy to hang out with me and hold hands for the 75 minutes (okay, she actually slept for the first 20 minutes, but after that we held hands and laughed). So I hope we've crossed that hurdle.

Friday we are supposed to be coming back from Long Island early (no therapy, just our early morning HBOT) and see Nestor's friend, Adam Ferrara, a hilarious comic, tape his one-man show. We've been to some clubs to see him and I must say that he is one of those guys that you're watching...and then all of a sudden, you're crying because he's so funny. That should be a fun night out and boy, do we need it!

Also, this weekend is Regina's (Nestor's Mom) 87th birthday and we are planning to meet Spike and Christine (Spike's lovely girlfriend) in NJ, at her nursing home, to give her a cake and song.

We saw Spike last weekend at school (Lehigh, junior year already!) and actually met Christine's sisters, brothers-in-law and Mother. They couldn't have been lovelier people. Her one sister is actually a chemist turned baker and has used her chemistry skills to alter favorite recipes -- just enough, to make them delicious and her own -- I know, because we test drove each dessert. Yumm! Her website is www.corinasconfections.com. Her other sister, Adrianna is a wife, mom and lovely artist, who does murals and trompe l'oeil. Check out her site at www.adrianastudios.com. Very entrepreneurial family!

We'll be back out here on Monday, so more from us then. Have a terrific weekend everybody!