Monday, December 15, 2008

The Boulevard -- All About Amelia article

Quick update: had a terrible night last night. Fever at 103 all night. Almost went to the ER because of wheezing and high respirations at 4:30am, but she settled down and went back to sleep somewhat comfortably. Of course she woke up every 10 minutes with a cough or sneeze -- but we made it through the night and was able to take her to her pediatrician (civilized) this AM.

We were sent to NYU for a chest x-ray. It showed that her left lung is doing better, but her right lung is still looking not-so-good, so they changed her antibiotic and put her on Prednisone (steroid). Hopefully this will kick it! She seems playful but very pooped out. Cancelled all her therapy except for her teacher today. Figured she could use a little stimulation that wouldn't excert any major energy on her part.

This fall, The Boulevard (a society magazine based out of Long Island), came to our house upstate and did an article on Nestor and his work, play, past and present, life with Amelia and I. We just got the hard copy in the mail today. It really is such a well written, folksy article and I was able to find the online link.

Friday, December 12, 2008

Home & Exhausted

Well, Amelia pulled thru last night like a trooper and we were released at noon today. Our perky nurse Jessica pushed things right along and we were out of there. She'll be on 2 heavy duty antibiotics for 10 days -- one for bacterial pneumonia and one for aspiration pneumonia, as we're not sure which one she has and lots of breathing treatments.

No one likes to be in the hospital, but for a Mom of a medically fragile special needs kid, as far as supplies go -- it's kind of like Disneyworld. Stay with me here. When we're home, I spend tons of time each day keeping syringes, extensions, venting tubes and bedding clean with vineager and water/soap, etc. At the hospital, I'm constantly amazed at at the blase' attitude nurses and doctors have about equipment and supplies. Everything gets thrown out -- even if it's just opened and not even used. And nurses are usually all too happy to share the wealth. I felt like a kid in a candy store as we were leaving and Jessica asked "is there anything else I can get you?" I said "We-e-e-e-l-l-l-l..." I know I sound like a kook -- but I brought home tons of syringes, new bulb syringes, vials of sterilized water (great for giving flushes -- for the GT -- while travelling), etc.

When we got home I put Amelia on the playmat and I am telling you, if she had a jet pack -- she would have rocketed to the moon. She was on fire. Into everything and crawling all over the place. We were so relieved to see her playing. Her teacher, Carol came by to do a therapy session -- not expecting much, and couldn't believe how attentive and motivated Amelia was to play. She stopped at 45 minutes becasue Amelia was clearly losing steam. But man oh man, if you had seen her two days ago, you wouldn't have believed that she would have been able to sit and play with toys today.

Anyway, we're all unpacked and settled. I haven't really slept in about 5 days, so I'm enjoying a vodaka beverage that my husband concocted for me. Sleep tight all!

Thursday, December 11, 2008

I take it back

...she was on oxygen all night. First by mask, then by blow-by. Oh well. She's off it now. If we have a good night tonite we get to go home tomorrow. Keep your fingers and toes crossed!

Wednesday, December 10, 2008


I am writing from Schneider's Hospital in Long Island. We came out here for the week to do Therapies 4 Kids for just the week and Amelia got pneumonia. It started Sunday night right after we settled in for the night at the Ronald McDonald House. We had our first HBOT dive scheduled for Monday morning at 7am and then on to T4K's for 4 hrs and then back to HBOT for dive #2. We made it in for 2 hrs of PT and our afternoon dive. That night Amelia seemed fine and Tuesday we did our early morning dive and 4 hrs of PT. She did great, but her ears were really red, so we didn't do our afternoon dive. That night her fever spiked and this morning her fever was gone and she seemed good so we took her in for a couple hours of light therapy. Well, she could barely keep her head up. Her respirations went way up and we took her home to give her a breathing treatment. After the treatment Amelia's breathing was still so bad and she was burning up, so at our NYC Peds. advice, we took her to Schneider's Children's Hospital, where we spent 6 hrs in a room in the ER, where they took her for a chest x-ray and discovered that she has pneumonia in both lungs. They were started an antibiotic IV and admitted us to a room upstairs. So here I sit. I have a very pooped little girl, who is very angry about the splint on her arm keeping her from moving too much -- so as to save the IV -- which took 4 sticks (pricks) to get. What an awful thing to watch as three people -- drs. and nurses stand around trying to get a little needle into a tiny vein. The cries and howls are pretty unnerving.

The really good news is that Amelia is so strong now that we didn't need to give her oxygen or suction her -- which tells us how strong she's gotten. So that's the upside of this experience. Sucks that we're here, but good to see how different this visit is than the last one -- which was just about 2 years ago exactly.

Saturday, November 29, 2008


Hope everyone is having a long, wonderful Thanksgiving weekend. We definitely are. We started in NJ at Nestor's sis's house. It was an intimate gathering of his sister, Evelyn, brother-in-law, Carlo, Titi (Aunt) Luz, Grandma, Karena (niece) w/ bo, Jonathan, Spike w/ gal, Christina, Nestor, Amelia and myself. Dinner was superb, sheer perfection -- as always. With fabulous desserts provided by Christina's brilliant sister, Corrina (professional baker...see, Karena and yours truly.

From there we hiked it down to my folk's house in Baltimore. Last night (friday) we had a 70th birthday party for my Mom. We brought in our favorite restaurant, Tio Pepe's food, dessert and used their famed sangria recipe to kick things off. It was really wonderful. I haven't tasted that food since before Amelia was born. We never go out-out when we're down here because there's really no one to leave our girl with. Sooooo yummy! Had leftovers tonite too!

So this brings us to today. More precisely -- this evening when a girl fight broke out. Okay, I might be exaggerating slightly -- but it was cool!!!!! So, Nestor had been spending some quality time with my 17 month old niece, Maya and his little girl was not so happy about this. We were all just hanging out on the playmat...but Maya was getting books read to her and lots of Uncle Nestor's attention. Amelia was playing with stuff, but definitely keeping her eye on Daddy and Maya. Then, Maya took Amelia's little Mickey Mouse driving toy(which she was playing with). Amelia was not happy. Bubbie stepped in and gave Amelia one of Maya's babies (which she was NOT playing with at the time) and Maya hit Amelia in the face. Immediately, Amelia swung out and kvetched at Maya, but Maya's Daddy was quick to swoop in and take Maya into the other room. It was awesome!!! I know what you're thinking...but for us, we were amazed that Amelia stood up for herself. She never moves quickly and her swing was almost in slow motion -- but it was there and she was standing up for herself. We were so proud of her. NOTE: neither of the girls used any force here and no one was hurt at all. Just a little wounded pride.

The girls are friends again and all is well.

Amelia is particularly in love with her big cousin, Ezra(4 yrs. old) who is such a doll with her. He runs in and finds her. He loves me to stand her up so he can give her big hugs. She just laughs and laughs when he does this. He sits next to her and holds her hand or plays with toys with her (we're getting used to the sharing part of it) and is just so sweet. Amelia doesn't have anyone else in her life like Ezra. She doesn't have that kind of contact with other kids, special needs or typically developing -- and it's such a special relationship for her to have. I really adore Ezra for his blind acceptance of Amelia. It gives me such extreme joy to see the two of them together. Amelia is so lucky to have Ezra and Maya as first cousins. I know they are going to be huge influences on her life in years to come.

Tuesday, November 18, 2008

Putting it together

Footage of Amelia walking down the hallway at UCP.
Not the best quality, as it was taken from my phone...but you get the idea.

We've been back from Long Island for a few weeks now and we're getting back into the swing of it all. Amelia is moving a mile a minute. She can't crawl or squirm around fast enough(still on the belly, but now with her head up and grasping the concept of using her hands and elbows for leverage). All of us -- parents, friends and therapists are in astonishment everyday by the amount of things she is doing. Sitting up and lying back down is a fun activity! I have taken a liking to "wheel barreling" her around the apartment. You remember what that is? When you hold someone's feet so they have to walk on their hands. Yeah, she does that! Nestor and I can't even do that. So, it has become our pleasure to have a little girl who we have to watch each moment -- not because of her secretions (although we do that too) but because she is into everything. YAY!

So, on Friday we went to UCP to play with their adaptive equipment and decide what Amelia needs now. Her stander is too supportive, so we are ordering her a less supportive one -- which is half the size that we will hopefully be able to throw into the truck and take with us when we go up to the house or out of town. We are also ordering the gait trainer, which is shown in the video above, because she did so well in it. She actually walked all the way down that long hallway in it! Michelle, the PT in the video, was giving her input on her back and making sure the gait trainer didn't slide out from under her feet. Other than that, it's all Amelia.

We are borrowing the gait trainer (called a Pacer by Rifton) from UCP until ours comes in. We took it with us this weekend to Evelyn & Carlo's (Nestor's sister & bro-in-law's) house. We put Amelia in the Pacer and let her hang out a little in it -- and she walked across the kitchen. It was amazing!!!! We are so proud of her.

She continues to do new things with her mouth too. She has been sucking on her bottom lip still and pursing her lips together. Nestor and I noticed, oddly enough, that she tends to do most of it later in the day to evening. Don't know why. Anyone out there know why? We are into our second week with Amelia's new Speech Therapist, John. He is very sweet natured and calm. First day, Amelia was cool with him, second day -- a little more fiesty, by the third day and on, poor John is being given a run for his money. She is playing him like a 2-3 yr. old. He is incredibly tolerant, resourceful and is out and out trying very hard to become friends. I think he'll break through once they get to know each other a little better.

Tomorrow night will be our first Team Meeting for Amelia in several months. It will be very interesting with all the new people in her life. We are still searching for an OT -- so anyone out there who knows a fantastic OT who will work in the West Village -- let me know!

Tomorrow is also an extremely important day because it is Spike's Birthday! Yes, Nestor's little boy is all grown up. No longer a teenager -- he's going to be 20. I can't believe it. I met Spike when he was 10. He had never tasted raw cookie dough -- he was innocent. Now he's a Pre-med junior at Lehigh, with a beautiful girlfriend and has maintained his level headedness and sweetness. We are so proud of you and love you so much Spikester and know that the best is yet to come!

Thursday, November 6, 2008

Thanks Jodi

Thank you for honoring me with your favorite blog award( see badges above). You are so funny and I think you are absolutely justified to give out your own awards.

For those interested in what I'm talking about go to

Your not so bad yourself sweetheart! xo

Tuesday, October 28, 2008

Heads Up

Seriously, she's keeping her head up when she belly crawls. It's quite remarkable for us. We're on our last week here at Therapies 4 Kids. It's been quite a experience and we are filled with excitement to get back into our "normal" lives, back to all Amelia's wonderful therapists who have all been so accomodating and patient with us as we took off for two months to do this with her. I am also filled with the fear of Amelia losing some of the extraordinary gains she's made. I feel a renewed energy to stay on top of all we've learned out here and really keep applying them to our everyday life. Wish me luck...I've been saying the same thing about a diet for myself and surprise, surprise...hasn't happened (okay, I know it's not the same thing -- but everyone's made resolutions).

Amy, PT at T4K's, is a so strong, smart, dedicated, compassionate and intuitive with our kids. She is truly a kid whisperer. We will miss her terribly. Hopefully I'll make her proud when we see her again and Amelia will still be doing all she's doing here. And what a huge amount of progress we've made.

It's been slow, but in the past several days, Nestor and I have noticed lots of new things happening. Amelia's fine motor skills have improved. Lots more reaching out for everything (including faces and hands) and exploring her toys with two hands and really looking at what she's in to. Weight bearing on the hands is what improves fine motor skills and Amy's been crawling --- sometimes wheelbarreling her down long hallways everyday for about an hour or so. It's a huge amount of work in which she used to scream her head off. These days, Amy sings her little songs and Amelia laughs a lot more than cries --which is awesome. Don't get me wrong, it's by no means easy, Amelia still complains, but no where near what she used to.

Amelia's gross motor skills have also remarkably improved. She is crawling so much better than before, as I mentioned earlier. Her head is up and her hands are really digging in to pull herself forward. She's just so strong. When you sit Amelia down, she's solid. Very little trying to balance her perfectly so she doesn't topple over, she just sits, or pivots, or grabs her toys, or anything else in her line of vision that she wants. She's into everything and I love it! Amelia's walking is getting sturdier, but it's her standing that is really impressive. She can stand at a table (with AFO's on) and play with a toy, by herself for 1-2 minutes without any support from us. Truly incredible! We brought over a Little Tikes shopping cart and we've been walking and standing her with it. It's the perfect height for her and we put a couple sand bags in it to weight it down so it won't tip over (most push toys are too flimsy and are made for a 1 year old, so they're too short). Amelia can stand holding the cart for minutes and is getting the idea of pushing something while walking, although it's still very hard. The other truly mentionable thing is that when we put Amelia in the therasuit and put her in the bungees, she is using the least support she can have in the bungees. Also, when we started standing her in the bungees without her AFO's, to get her feet used to the feeling and challenge of no support, her feet and legs would turn red and purple. She would howl and scream at us. I was always incredibly upset by this but Amy would tell me that it's because she's not used to really weight bearing into her feet -- yes, we have the stander at home, but she is sooooo supported that there isn't a whole lot of pressure on her feet. Well, I am happy to report that that is no longer happening to Amelia. Her feet are rosy and pink at all times now. She can stand for 45 minutes and she is strong enough to do it and most importantly -- comfortable. The walking has remained stable and constant. We can now walk Amelia supporting her under her elbows or just by the hands, which is so much less support than we used to give her.

As for therapeutic tastings, Lia, Amelia's wonderful nurse, showed me how she's been feeding her. One day, by accident --while trying to place the food to the back of Amelia's mouth as we've always been told to do, she missed and it landed on the front center of Amelia's tongue. She watched as Amelia started moving her tongue around like crazy and pushed the food to the back of her mouth and swallowed it. Now mind you, Amelia has incredible coordination problems, that being at the top of the list. She's not getting the food back perfectly everytime, and she fatigues easily but at least she's making the connection that that's what she's supposed to do. It's a huge thing that she's figured out. It's a very exciting step!!!!! Also exciting is that we found a speech therapist last week, finally, so we'll have a professional joining us again -- which is a huge relief! Also, it seems that Amelia's open mouth posture is lessening. She is actually pulling in her bottom lip and sucking on it. I can actually hear her sucking on her bottom lip! AMELIA WAS BORN WITHOUT A SUCK REFLEX. That's how huge that is.

The other thing we've been doing with Amelia for the past couple of weeks is pediatric accupuncture/accupressure. The facility we go to for Therapies 4 Kids and HBOT has just brought in a Pediatric Accupuncturist, Massage Therapist and Child Psychologist (obviously for the older kids). It's become a one-stop shop for kids with special needs. But seriously, it's really a terrific idea. For example, we got to the facility at 7AM, did our 1st HBOT dive, went to T4K's for our 4 hours of PT, then to Dawn(Accupuncturist) and Raquel(Massage Therapist) for 30 minutes of accupuncture/accupressure with some facial massage added for good measure and lastly, back for our 2nd HBOT dive of the day. We got back to the Ronald McDonald House around 3PM. Quite the full day and all under one roof! Pretty cool stuff. So the jury is still out on the accupuncture/accupressure. I can tell you that this is the 3rd week and with Amelia's incredible gains, it's impossible to tell what's doing what. It's an anchient medicine though, so I feel like it's gotta do something, right?

Overall, it's hard to crystallize everything because I see so many changes. She's just a different kid who is aware, communicative (thru her laughing or complaining) and strong. I can't say that word enough, strong...I just see and feel it.

Tuesday, October 21, 2008

Anda Le (Ride 'Em)

Wednesday, October 15, 2008

Another day, another cold

Blurry yes, but cute!
Just wanted to show you Harley, a Golden-doodle, who is one of the therapy dogs that visits on Sunday evenings at the Ronald McDonald House.

Amelia got sick again this weekend. It started Friday night. I was up with her every 20 minutes when she would either cough or sneeze. She was a faucet on Saturday and needed so much care I couldn't even go to the bathroom without pulling her in there with me (lovely, right?) the late afternoon her temp was up and I was up with her all night Sat. night. We took her to the Ped. on Sunday afternoon. Needless to say, we took Monday off from Therapies 4 Kids and went back to LI Monday afternoon and started back on Tuesday morning.

I bumped into the other Amelia's mom, Dora, from the playground (see several posts earlier), who is pregnant again --YAY! Who put it best by saying that everytime Amelia gets sick, she just gets a "touch" of it. I agree. I'm sick this time too, but not nearly as full blown as my girl. Just "a touch". You know what I mean?

Anyway, so here we are, Wednesday. Amelia still has strong leftovers (and I was so hoarse yesterday I sounded like some sexy porn star) from being sick, so we've decided not to start the HBOT this week. They don't want anyone going into the chamber who isn't at their baseline and it's obvious that neither one of us is. So we'll start next week -- fresh.

As for getting back into therapy this week, she's been doing well -- for a sickie! Amelia is definitely not where she normally is, but Amy is being very easy-going about it. She's pushing her, but not too much for her physical issues this week while she gets her strength back.

My folks are in Germany and Poland doing the inevidable tour -- the one that all older jewish folks do, before they're too old to do it -- visiting concentration camps. OY! What a fun and romantic trip to take for your 50th Wedding Anniversary!

Tuesday, October 7, 2008

The Holidays and Beyond

When last we heard about our heroine, she was entrenched in intensive suit and HBOT therapy. We ended the month of September with a bang and headed back to the Big Apple for a few days of respite.

During which, friends from LA, Sal and Mateo Lopez, visited us in their hunt for the perfect college for Mateo next year. Neither of them had seen Amelia since she was 3 months old when we shlepped her to their beautiful home for brunch -- in which Mateo and his brother, Diego were the most polite teens I've ever seen. As I suctioned Amelia and hooked up her g-tube feeding, they never gawked or asked one uncomfortable question. The two boys were gracious and treated Amelia like any other 3 month old -- signs of true gentleman. So, during this visit they got to see the new and improved Amelia. No suctioning and a tower of strength compared to the last visit! I think they were pretty blown away. It's always so cool to see someone's response to Amelia having not seen her in 2 1/2 years.

The next day we packed up our stuff again and headed down to Baltimore for Rosh Hashanah. I hadn't been down there since Passover in May, so it was really nice to get back there to see everyone. I always get a kick out of seeing Amelia around all her little cousins -- and we have plenty of them now!!! She sees what it's like to not be an only child, with toys being stolen left and right...she was a little more perturbed by these goings on this time around, which I found to be a wonderful thing to see.

On the downside, our girl got sick in MD and had to go on antibiotics. I was up with her for 4 nights in a row. Also, not to be called selfish, Amelia shared her germs with Daddy and Bubbie. The good news is, we never whipped out the suctioning unit. We had to stay very on top of her with the bulb syringe, breathing treatments, tylenol & motrin and switch out the wipey (receiving blanket) we use to dry her nose, mouth and face -- but she managed it. She never became critical where we felt unsafe. It was really incredible to get through that without the intense fear we always feel when we hear her start to pant with a high fever that we end up in the ER that night. YAY Amelia!

When we got back to NYC, we threw Amelia into her homebased therapies. It was so wonderful to see all the incredible therapists who have been so accomodating and flexible with their schedules to stay on board while we take Amelia away for a month at a time.

We also took morning to visit Roosevelt Preschool, dragging Amelia along for the ride. LOVED IT!!!!

The first preschool we visited (several months ago) was Central Park West, which we loved because it has a big energy, with fun hallways and classrooms, ten steps from Central Park (which they take the out to often), with a rooftop playground, cool sensory gym and lots of adaptive equipment (including an adaptive bicycle) Nestor's and my discussion of it we had to admit that it's more suitable for higher functioning kids than Amelia. There was only one class of medically fragile kids.

Then we visited Rusk Preschool (a couple months ago) which is part of Rusk Rehab at NYU (a world renowned rehab clinic)...and I hated it. It's located adjacent to the NYU hospital on 34th Street and the school looks like a hospital. There is no big energy, it's a 6 hour a day program (and that doesn't include the busing time) the hallways are depressing, sterile and closed in feeling. But the therapists there are supposed to be top notch, with a feeding program that each child is in. For Amelia that is so important because, let's just say it, she's turning 3 in two months and she's not even close to eating. At Rusk, they do feeding twice a day. After not much debate, Nestor and I concluded that although we love CPW, Rusk seems to be more appropriate for Amelia's current needs.

And now on to Roosevelt! It's a new facility located on 34th & 10th. It's BIG energy, with wide hallways, tons of adaptive equipment, huge gym and soon to be sensory gym, wonderful staff (the woman I met at the school fair for Roosevelt happened to see us in the hallway and ran over all excited to meet Amelia), they also do two feedings a day (lunch and snack) and it's only a 5 hour program (not including busing time). The other thing which I absolutely love is that they are equipping every room in the school with adaptive communication devices. There are buttons, strings with beads on them and voice activated devices on the entryways of each doorway so that children can open and close doors for themselves and so on. It's so cool and I've never seen anything like it. Also, they are a curriculum based school but make a strong point of carrying over the PT and OT during class time. There were kids in standers and positioning chairs during class. Their wonderful principal, Karen Tumulty took us on an extensive tour of the new facility and explained that they do one book for about 12 weeks. They have pictures, words, interactive computer programs, etc. on the book they're doing so the kids get very entrenched in it. It all just sounded so exciting. The other thing we loved is that they have a sister school, literally across the hallway, called Gramercy Preschool. Gramercy is for higher functioning kids who are ambulatory. The nice thing is, if Amelia's needs were to progress beyond Roosevelt during her time at Roosevelt, she could seamlessly move into Gramercy across the hall. Sweet!

This past week we also had my cousin, David in from LA with his new, lovely squeeze, Barbara. David is another one who hadn't seen Amelia since she was 3 months old (once again, blown away!). Nestor and I had a really terrific evening with them which we ended by coming back to our place and watching the VP debate.

The weekend came on fast and on Sunday we packed up, yet again, and headed back out to Long Island to spend the month of October at Therapies 4 Kids. That's right folks...we're back! Amelia is really handling it like a trooper and doing wonderfully as usual. Her walking and crawling is stronger and stronger. I've been trying to really stay on top of it at home and carry over as much as possible. The thing that sort of blew us away yesterday was her standing. Amy (PT) stood her up at a table with a toy on it and eventually let go and OMG! There was Amelia....barely leaning on the toy (she was driving the steering wheel) standing by herself. She did this several times, for I'd say 10-30 seconds each) until she just got too tired to do anymore (she had already walked the length of a football field-- okay maybe not that far...but she works hard, darn it!) What a rockstar!!!!!

So that's our latest and greatest. Nestor left this AM for South Carolina for a few days to shoot an episode of "Army Wives" -- he'll be back Thursday. Until then, just me and my gal, oh..and our nurses...and all the families at the Ronald McDonald House...and Amy(PT) and Edna (OT)...other than that, it's just the two of us! It really does take a village.

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 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 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

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 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:

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

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 Her other sister, Adrianna is a wife, mom and lovely artist, who does murals and trompe l'oeil. Check out her site at Very entrepreneurial family!

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

Monday, August 25, 2008

Margate, NJ -- summer 2008

Maya, Bubbie and Amelia -- HUGS!

Amelia and I just got back from a week at the beach at my folks' beach house. Nestor was in LA working on the show "Medium", so we took the opportunity to spend a week with my Mom and Dad aka Bubbie and Zadie and my sister's family, Aunt Jackie, Uncle El, Ezra (4 yr) and Maya (1 yr). What a time! Constant chaos and Amelia finally knows what it's like NOT to be an only child (I know she has her big bro, Spike -- but he's not competitive with her and certainly doesn't steal her little people car or star stacker, not yet anyway). So funny. Amelia certainly became a little possessive and concerned when little Maya was around to steal her stuff.

Ezra with Amelia, on the pump for dinner and holding hands while they watch the Backyardigans

Let me just say right off, Amelia hates the beach. We went the first day; I put her in her cute little bathing suit, packed the beach tote and sunscreened us all up. We drove the few blocks to the beach and as soon as we hit it...out came the tears. She was rubbing her eyes and distributing the sunscreen all in her eyes -- tearing up terribly, skin all blotchy and sooooooo uncomfortable. We got to the beach blanket -- covered in sand because my neice and nephew had already been there tearing up the joint. We thought maybe it would be better if we took her to the wet sand and edge of the water to see the ocean. This proved to be just as miserable for her. So the tears continued as we took her back up the chairs and blanket. Finally, Amelia passed out on my Mother's lap after all the crying.

Meanwhile, our friends from Therapies 4 Kids, the Petits (see Tator Tot Chronicles), who live 45 minutes from Margate -- were making their way thru Saturday beach traffic to meet us for a day at the beach. Best laid plans and took them a long time to get to us and by that time I had called him to say that Amelia and I would be heading back to the house as soon as she woke up. The good news is that they came by the house later that day and it was so fun to get Amelia and Tatem back together to play, along with Tatem's handsome twin, Jude and older sister, Kat. Ezra and Maya also enjoyed the Petit crew where there was lots of chaos -- and beers for the parents!

Needless to say, Amelia and I didn't go back to the beach over the week -- but there was lots of other stuff to do. We went to the library each day -- which is also three blocks away. Amelia, Bubbie, Zadie and I went to Smithville one afternoon, which was really nice. A charming little village that dates back to the 1800's. One day we met up with some friends of my sis' at Ocean City and went on some rides and had dinner on the boardwalk. Another day we went to Storybook Land which was really a blast! Amelia went on lots of rides and looked at so many things. We went on one ride which were antique cars, Tin Lizzies, and she was steering up a storm --which is her favorite thing these days. One evening we went to AC to Caesar's, where we enjoyed the water show in the mall shops. Amelia seemed to like the between-the-show water acrobatics, which were small little dances with light cheery music -- but when the real show began -- the loud rock music, harsh lights and smoke upset her. Not a fan! So much so, that when we left the mall area and then walked back through, she started crying and shaking her head "no" until we got to the food court and she saw that we weren't going back to see another "water show". We went to "The Walk" on our last day there, which is the outlet shops in AC. Amelia scored big time! Bubbie and Zadie bought her a gorgeous "back to school" wardrobe for the fall...does it matter that she isn't actually going to school? I couldn't believe it -- but I bought her 4T. She's only 27 pounds -- but she's 37 inches long...4T is 38.5 - 41.5 inches -- by the time the cold weather comes...OY! While buying up Oshkosh, there was a woman shopping with her 26 yr old son, who has CP. He was sweet and looked as unhappy as Amelia being pushed through the isles. He laughed when I mentioned this fact. His Mom and I spoke for awhile about therapies and development. She talked about how much her tender, loving son has taught her and everyone else around him. "A lot of hard work" she said "but worth every bit of it." What a strong woman with a wonderful take on things.

Storybook Land

The girls on the Merry-Go-Round -- Amelia actually fell asleep right after this photo was taken and I had to take her off the ride. So cute!

On the flying elephants -- the operator of the ride was a sweet older gentleman who asked us at the end if we wanted to ride again. He asked if Amelia has CP, he told me his 44 yr. old son has CP and "gets around pretty good and loves the computer".

and the ferris wheel -- she wasn't crazy about hanging around while the operator let the other cars out at the end of the ride.

On Saturday, Jackie, El, Zadie and their kids drove back to Baltimore. Amelia, Bubbie and I drove back to NYC. We had an uneventful trip and got back to be greeted by Nestor, who had flown in from LA Friday night. The four of us spent Sunday together. I made a nice dinner with my Mom and Nestor made up a wonderful batch of mojitos from a mix we bought in Smithville -- along with some fresh mint. DELISH!!!!! My Mom and I did a little running around this morning and then she left on the train this afternoon. It was sad to see her go.

On Labor Day we will be going back to Long Island for the month of September. We are really looking forward to this trip out. We'll be in full swing -- HBOT, Therasuit and the Ronald McDonald House. Yippeeee!

Friday, August 8, 2008

I hate the playground

For two years I have been taking Amelia to Bleeker Park, on the corner of Hudson and Bleeker Streets. Two years. And I still only know less than a handful of people. I know Francis and Frank because he is one of Nestor's old buds from his East Village days. I know Tracy and Paul because they used to live downstairs in our building. I know Leona and Max because Nestor and Max are actors. But there are only a couple other Moms I've met in two years. TWO YEARS.

I make a point of taking Amelia there almost everyday -- weather and therapy permitting -- because I know she loves watching all the kids play. If it isn't too crowded I'll get her on a swing or the slide. I'll let her sit or stand on the edge of the sandbox (no hands in the sand because she is still sticking them in her mouth too much for my comfort) and play with the sand in her toes. Recently I've taken up walking her around the playground and jungle gym -- up and down wooden steps and bridges. But so much of the time there's lots of wild kids running around (it is a playground after all) or, believe it or not, clueless Moms on their cellphones barely noticing where they or their toddlers are going. The few times a child has stopped to acknowledge Amelia, it's usually to play with the toys on her stroller or to stare curiously at the little girl leaning forward in her stroller with her head tilted to the side. And moms will acknowledge Amelia and I with that small, polite smile which I have come to loathe.

So many times Amelia and I just park our stroller and sit on a bench and watch the other kids running around. I'll put her on my lap or stand her so she can lean over my legs but mostly, she just watches the others doing what, I'm sure, she wishes she could be doing. It doesn't always get to me, but today it did.

Another Amelia, who we met in the playground awhile ago, turned 2 today. She also has big brown eyes and curly brown hair. Ironically, the first time I spotted her toddling around I thought to myself that this little girl looked like she could be Amelia's sister. When I heard her father call her Amelia, I couldn't believe it! So today was her birthday and as Amelia and I strolled up to the sandbox this evening, they were having her party there. The birthday girl looked adorable in a little pale pink cotton dress. She said hello to my Amelia and then the party left.

What struck me was, all these Moms. They all know each other. I see them everyday striking up easy conversations about eating habits, potty training, how many words their child has, how they run around too much and are always falling down, or climbing up onto everything, can we get together for a playdate? I can't relate! I don't know any of these things.

Ask me how to vent a baby, cauterize a g-tube site, change a g-tube or hook up a g-tube feeding and I'm your gal. How to suction a baby's nose and mouth out so they don't choke on their own saliva. Ask me to show you how to soak all your tubings, syringes and attachments in vinegar and water so you don't have to throw them out after each use. Talk to me about all the specialists your child needs to see because maybe I know an opthamologist, neurologist, ENT, pulminologist, GI, surgeon and of course the pediatrician that you could use. Not to mention a nursing agency, medical supply company and two pharmacies on speed dial because I call them that often. I can show you how to put on AFO's (leg braces), strap a child into a stander, positioning chair or walker. My back is broken from carrying around my 25lb. child and from bending over to support her while trying to let her feel the accomplishments of taking her own steps. When my 2 1/2 yr. old child cries -- I don't even know half of the time if it's a serious internal problem or if I just put the wrong cartoon on because at 2 1/2 -- she still can't tell me!!!! She can't say "Mommy".

So when I see other Moms on the playground, I don't strike up whimsical conversations because there is nothing whimsical about my life right now. And that is why, after two years, I still don't know more than a handful of people at Bleeker Park.

Wednesday, August 6, 2008

Happy August

This is video from my phone from this weekend while shopping at BJ's.
She had sooooooo much fun!

It is a time of change. Our Speech Therapist, Sophia had her last session with Amelia yesterday. We haven't found a replacement yet, as August is a difficult time to find new therapists. Her Special Instructor, Melissa is leaving next week and Amelia has a wonderful new Special Instructor, Carol.

Amelia has a summer cold which she has lovingly passed on to me. Now I sound like Kathleen Turner...or a drag choose. The good news is that we haven't had to pull out the suctioning unit. Just a wipey (recieving blanket), breathing treatments, tylenol and a little bulb syringing here and there seems to be doing the trick.

Nestor has just left for the airport and as always, I'm happy he is leaving to work, but sad to see him go. He finished an episode of a new show called "Fringe" on Tuesday (the same folks that brought you "Lost"), which shoots in NYC and now he's off to LA to shoot an episode of "Medium". Episodics have started up, so hopefully he'll be able to land a couple more jobs before he heads home -- which means we're not sure how long this trip will be.

Next week we had planned a trip down to my parent's beach house in Margate, NJ. I think my Mom will come up next week and drive with the girl and I to the house. It will be Amelia's first time at the beach (the sandbox in Bleeker Park doesn't count) and I'm looking forward to dipping her little toes in the ocean!

The week we spent at Therapies 4 Kids and the 5 HBOT dives we did with Amelia were the perfect little refresher she needed until we get back there for the month of Sept. Toward the end of our stay, her stamina for standing progressed and she did some terrific walking. All in all, A+.

Last week was very busy for us as Eileen (the founder of Bright Steps Forward & Therapies 4Kids) and Annette (the President of the Co.) were in town and we tried to introduce them around as best we could. We took them to the Tony Darrow Celebrity Golf Tournament and also to meet my former bosses, Sonny Grosso and Christina Krauss. Both meetings were successful in different ways and ultimately they will both help Bright Steps Forward in different ways.

Tuesday, July 22, 2008

A little bit weak this week

We're back out on LI for a one week pop at Therapies 4 Kids and I must say that it's suprising how much endurance Amelia lost in her legs over the 3 weeks we went home. Her legs keep buckling after a few minutes when we stand her up in the Therasuit. We connect four bungees from the Spider Cage (it's a big 3 sided cage that you can connect pulleys and cords from) to her waist, which gives her suspended support (they are connected at waist level). Amy, our magnificent PT, has been having to use velcro braces around her legs to keep her knees from bending -- It's very frustrating. It's really her stamina more than anything, she just can't maintain standing for more than a few minutes in the bungees without fatiguing. But her overall strength has kept up well and her focus is still really good. I've been doing lots of walking with her at home (I hold her under the arms, but she initiates the stepping) and that's really good too. Although, Amy pushes her harder than I do in, in that, I give her a lot more support under the arms than she will, so Amelia fatigues faster with Amy than with me (I'm Mommy...I'm allowed to do that!)

One thing that Amelia did today that I was really impressed with -- Amy was trying to get her to use her arms more for moving (Amelia would always prefer to push off with her legs -- they're stronger), so Amy was holding Amelia's legs so she couldn't use them and our little girl starting walking her arms really nicely, one after the next, to get her toy. Amelia did really nicely and I was suprised that she did it. Amy used the velcro braces on her arms a couple times so she couldn't bend her elbows -- but when she took them off I figured Amelia would pull a "sack of potatoes" move on us -- but she didn't. She beared weight onto those little arms and walked them over to get her toy. Yay Amelia!

We're doing 5 HBOT dives while we're here for the week, because that's all they could fit us in for -- very busy over here! It certainly makes our day less hectic because we don't have to wake up a 5AM -- we now get up at a leisurely 7AM, so nice. We go to Therapies 4 Kids by 8:30AM and our HBOT dive is at 1PM.

We didn't bring the portable crib with us this time because Amelia is just too big for it. Instead, we bought a Kidco Princess Peapod Tent for her -- so adorable! She's camping out in the Ronald McDonald House and lovin it!!!! It's a great thing though and I encourage anyone who is sick to death of breaking their back on the pack and play to invest $84.99 in one. I spread a little playmat out in front of the tent opening, which I leave there and I can pull her out to change her clothes, diaper, deal with her g-tube stuff, whatever. There's an air mattress that you blow up and slide into a zippered pocket underneath the tent, so you don't have to worry about that, it comes with a sleeping bag -- and she seems to be sleeping nicely in it. But the biggest selling point for folds into a 19"x 6" round bag -- so much easier than a pack and play -- and certainly better than that portable crib! Anyway, sales pitch over.

We're still in limbo with lots of therapists leaving and some therapists located, but no one really in place solidly. And then most therapists take off the last couple weeks of August -- so it's a really weird time to be starting with new people on our case. Especially because I think we're coming back out here to LI for the month of September. So, we'll have new people for a couple weeks and then we won't see them again until October. Ummm, well, we'll see how that all works out.

Nestor's son, Spike will be home in a couple of weeks from Shanghai, where he's been for a couple of months with his girlfriend, Christine. They've been racking up some credits for school. Spike is now pre-med and actually sat in on a bunch of surgeries over there. He watched all kinds of things being removed (kidneys, rectums, etc.) and the weird thing is that over there, after the organ or tumor or whatever has been removed...they take it out of the operating room to the waiting room and show it to the family. That's right -- THEY SHOW IT TO THE FAMILY!!!! Talk about making sure you've gotten your monies worth! Spike and Christine were only supposed to be there for 6 weeks, but they both got tutoring jobs and stayed on for an additional few weeks. He'll be home mid-August for a couple of weeks and then take off for his junior year at Lehigh. Wow, time has flown! I cannot believe Spike is a junior already.

Hope everyone is getting through the heat wave without any serious problems or power outtages. OY! What a nightmare that would be.

Friday, July 11, 2008

6 months=6 months

We've been home for two weeks now and Amelia continues to process all she learned in her one month excursion to Therapies 4 Kids. It's incredible. We've been trying to stay on top it and have recreated some of the things she had out on LI. We bought ankle weights, so we can walk her (we hold her under the arms and she takes the steps -- and is doing really wonderfully with it) and she can have a sense of weight on her feet so she'll place them down after each step -- although she does really nicely with out the ankle weights too. We bought a big "under the bed box" and filled it with dried beans. We actually sit her into it as a sensory exercise and hide toys in the beans for her to scoop out. It's funny because when we take her out she has beans in all kinds of places...diaper, under her arms and in her toes -- cute. We also did lots of things using stairs, and even though we have a stairwell in our apt bldg, they're gross and very, very hard some-sort-stone steps. So get this, Nestor and I were at Bed, Bath and Beyond last week and we spotted doggie steps -- you know, for little dogs to get up on beds and furniture -- and we got them. They're actually not bad. We can put them up to our bed or sofa and practice walking up and down the 4 little steps -- ah, New Yorkers are certainly creative with their space! Amelia continues to be get stronger and very vocal. No official words (that we understand, yet) but she is fighting us and arguing with us like every other 2 1/2 year old.

Yesterday, Melissa, Amelia's Special Instructor who has been with us since Amelia was about 6 or 7 months old, told me that she is in the process of writing Amelia's 6 month evaluation (every 6 months Early Intervention has the therapists do progress reports) and she noticed that for the first time Amelia developed 6 months in 6 months. This does not mean she is all caught up, by any stretch of the imagination, but it does mean that she has that much less of a gap. Melissa mentioned that socially and cognitively she is doing many, many age appropriate things. Nestor and I were so happy to hear speaks volumes about what we and everyone else has been doing for our little girl.

Sadly, we will be losing Melissa in August as she will be moving to DC to be closer to her brother. But more importantly, she will be bringing her sweet charm and out-of-the-box approach to teaching to the special needs community in our nation's capitol. Also leaving us in August will be Amelia's Speech Therapist, Sophia. Sophia is so terrific, she's here so often that we've joked that she should just move in! And although we made a pact when she got married last summer "no pregnancy until Amelia ages out of EI" -- we didn't foresee her husband getting a job in Connecticut -- or I definitely would have added that. In any case, these two women have been so important in our lives over the past couple years and we will sorely miss them. Having said that, we are also excited for them and their new adventures. The kids in DC and CT are very lucky to have them!

As for us, we're heading back to Therapies 4 Kids on 7/21 for one week. We are so grateful for the opportunity to get her back in for a 1 week pop, we know how busy they are over there. We'll be doing the HBOT -- at this time they only have 1x daily available, but they may be able to squeeze us in 2x's depending on what happens over there with their schedules. And it looks like we'll be heading back out there again in September -- so exciting. We are truly so blessed to have met this incredible organization, who give us so much hope and inspiration to work harder and push harder, because we know that that's the only way to get results that will give Amelia the best chances in life.

Wednesday, June 25, 2008

And presenting, ingenue -- Miss Amelia Charlotte Serrano

Visit these links for more:

Tuesday, June 24, 2008

And the big debute

Go to this link to watch the clip from Good Day New York which aired this morning.

Monday, June 23, 2008

So they say...

...that the Fox news segment about Therapies 4 Kids, starring Amelia and Tatem, will air on Tuesday (tomorrow) between 7 and 9AM. It is subject to change, but that's their plan for the moment.

Friday, June 20, 2008

Coming soon to a TV near you

Ok, it is. I swear it is. We just got word that our segment has been pushed to Monday or Tuesday. I know, I know. But I'm not the CEO of the station yet, so I have very little sorry! I'll let you know when I know.

On a much more exciting note, Amelia has been pushing up onto all fours into a crawling position. She did it three times on Wednesday night while our friends, Art and Terry were visiting us at the Ronald McDonald House. Terry and I were there for it. The guys were off -- doing their manly things -- and we were trying to get her to go to sleep. Amelia was playing around in her crib and up she went. It was astounding! She went up twice and on the third one, she fell to the side and wiped out. I pulled out the video camera to see if maybe she would do it again and not only did she get up -- but she sat back onto her heels. The whole move was so controlled and purposeful. Terry and I were in complete shock! AND WE CAUGHT IT ON TAPE! What are the odds? It was really, really dark and difficult to see, but Nestor tweaked it in imovie and it's a lot better.

She's been "trying out" a lot of stuff. She's been pushing up here and there since the video was done -- and this is all just the beginning. The folks at Therapies 4 Kids were talking about all the magnificent things we'll see in the weeks to come. They told us that the learning, strength and coordination will continue to amaze us as she settles back into her daily routine. I can hardly wait. Amelia's responded so incredibly well to this whole program -- what a true blessing that we were introduced to them. Thanks Joe.

Wednesday, June 18, 2008

That's Showbiz

So, I'm sorry to report that there has been yet another delay in the airing of the Fox 5 news segment starring Amelia Serrano in her Television debut. Okay, it's really about Therapies 4 Kids and Bright Steps Forward -- we just happened to be here. Anyway, we believe it will be airing on Friday, the 7-9AM show. Stay tuned for more details.

After it's aired you should be able to go to to see the clip.

Tuesday, June 17, 2008


Amelia continues to do incredible things. She is the complaining girl these days -- and although it has puzzled Nestor and I (trying to figure out what's wrong), we've been told by Eileen (the founder of "Bright Steps Forward" & "Therapies 4 Kids"), Dr. Schwartz (the medical director of "Therapies 4 Kids" & runs the HBOT) and the chiropracter who works in the same office as the Therapies 4 Kids space -- it's all good! Any communication is a great thing. She's been so easy going for so long and now her brain is waking up and she's trying to express herself. And ot be fair, Amelia's doing a lot more vocalizing all around. And today, she has begun to wave "hi". We brought her in to have therapy this AM and Victoria, the woman who cleans the offices waved "hi" to her and with Amy (PT) prompting the phrase "hand up for hello." Amelia put her hand up to wave!!!!! HUGE! And then she did it again for me. And again when Anthony, Dir. of Development, arrived. I can hardly wait for Lia, our nurse, to show up to see if Amelia is for real or just putting us on (hee hee). I'm feeling giddy about it. Also, Amy has been working really effectively with her all morning. I'm noticing that she's getting herself into quadraped with very little effort. With a little support under the chest, she's moving really nicely on all fours. So exciting to see this all right in front of our dramatically.

Last night we went to a really fantastic fundraiser for Bright Steps Forward. It was held at a big old mansion in Westbury on the campus of NYIT. What a gorgeous place and lovely event. We're not sure of the numbers yet, but hopefully they raised a lot of moolah to help our kids. They are doing such important work here that is so effective -- and this is really their first big event. There's a bigger one happening in September and Nestor and I are completely on board to help out in any way we can. Big believers in what they're doing here. Not just helping to cope with your special needs child...but actually giving families rehabilitation and hope for their child's future.

By the by, if you were looking for us on Fox 5 NY news yesterday, I got the word late yesterday that our segment will be on on Wednesday (tomorrow) between 7 and 9AM. I know, I know...but this is the best we can do on finding the time out. I think you might be able to access it online too -- but I'm not sure.

Thanks for checking in and giving us so much support. We are so lucky to have such a wonderful community of support.

Friday, June 13, 2008

Amelia's Stand-up Routine

So this is from a few days ago...she's actually doing this move smoother these days. Will post new stuff next week when we edit it.

By the by, we were told that the Fox 5 interview will air on the Medical Report segment on Monday, June 16th -- not sure what time, will post when I know more. I believe you will be able to access it online if you go to their site too.

Thursday, June 12, 2008

Day 9

We're almost thru our third week and it's been a whirlwind so far. Amelia is being pushed further than she has ever been before. She is being put in more weight bearing positions, arms and legs, for longer periods of time than I've ever seen her do -- getting stronger everyday. She complains more than I've ever heard her complain too, but that comes with the territory. Such a hard worker our little girl.

Amelia is standing up from a squatting position -- without her AFO's and we have noticed that she will actually hold her feet flat on the floor (she usually curls them) if you hold them down during the first or second time. And when the therasuit gets put on (with her AFO's) -- watch out! She is walking between two ropes (being supported at the hips) but moving her hands herself on the ropes and holding on too. The other day she let go of one of the ropes and I said "Amelia, you need to hold on with two hands to the rope." She looked at the rope and reached out her hand and took hold of the rope. I couldn't believe it! She actually listened to me! Not that she doesn't do lots of things we tell her to do, but most of them have been learned over time with repition -- like when we read her a book and tell her to turn the pages, etc. This was totally spontaneous and I was shocked.

Amy (her incredible PT) and either Lia (Amelia's stupendous nurse) or I walk her from the therapy room to the staircase in the hallway, supporting her under her shoulder and helping her shift her weight, but she is taking most of the steps herself. Out there she crawls up stairs, walks up stairs, crawls down stairs and walks down stairs. It's so much for her but she is getting the hang of it -- so incredible! To watch her struggle thru it, but less and less every time lets you know things are falling into place and making the connections.

Amelia is really sitting nicely now -- pretty solid -- and truly curious and exploratory of her environment. She likes to spend quality time with laundry baskets and bungee cords these days, just fascinated by everyday things. This may not sound like a big deal to most of you, but she's never really been as present and curious of her surroundings -- mostly she's just been trying to breathe and get thru the day. Also, she's much more vocal than ever. Laughing more and complaining more than ever before. She is making herself known and accounted for!

Today Fox 5 news is coming to Therapies 4 Kids to interview us, Amy (PT) and the other family having therapy in the afternoon. Then they're going to follow us to the HBOT facility to film there. Nice, me not wearing any makeup or anything because of the oxygen therapy...whatever.

The other exciting thing in our life right now is the Celebrity Golf Tournament with UCP of which Nestor and I are the "Journal Co-Chairs." It's late in the game -- our deadline is Friday, June 20th, but we are trying to help sell space in the journal for fundraising (here's the pitch).

We would really appreciate the sponsership. UCP, NYC has been so instrumental in getting us to where we are today. They have held our hands and walked us thru some of the most confusing and helpless moments that a parent could ever face. UCP helped us obtain a Medicaid waiver for Amelia so that when her insurance caps out ($2 million cap, Amelia is past the $1 million mark at 2.5 years old) we won't be stranded. All of her adaptive equipment is from there: a stander, a positioning chair, a creepster, a walker, a bath chair and a carseat. They are items that make our lives easier; helping Amelia grow stronger, with correct posture and positioning -- which is so important for her as she grows. We go to their clinics to have Amelia's AFO's fitted with their incredible onstaff Drs. and vendors. And mostly, they welcomed us into their family. No one is getting rich here. We are just trying to do our part so that families like us can feel as safe and comforted as we do, knowing they are only a phone call away.

If anyone is interested in participating please contact Jennifer Alpert at (212) 683-6700 x208 or email .

Here are the options:

GOLD PAGE $1300.00
B/W FULL PAGE $900.00
B/W HALF PAGE $600.00

Thursday, June 5, 2008

Day 4

We just came from our 7th dive. FYI- a dive is basically when you go into the chamber (think a tanning bed that closes completely and locks you in, but the top and sides are glass so you can see out) and they pressurize for 7 minutes until you're at the level you're supposed to be at, below sea level, in our case it's about 20 feet below sea level. But no Jamie, you are just lying in the chamber -- not actually going under water. It's all done with air and oxygen pressure. You hang there for an hour and then they bring you back up for 7 minutes.

Also, just wanted to mention our first 3 minutes in the Ronald McDonald House, when we got there on Sunday. We walked in with Amelia in her stroller and a huge Goldendoodle named Harley came up to us, nose to nose with Amelia, and gave her kisses. He's a therapy dog who's at the house every Sunday. So sweet! The kids were just lying all over him, he just hung out.

Yesterday Nestor had to go into the city for a couple auditions and got stuck there a little later than we thought. I happened to bump into the the family who is also having therapy here at Therapies 4 Kids, Tatum (4 yr. old girl) and her Dad, Tim, in the kitchen around dinner time. They were just sitting down, so Amelia and I joined them. Tatum is adorable! She's a twin with CP and low tone. She speaks and smiles constantly, her congnition is right on but has physical challenges to overcome. Amelia loves her. When we came up to them I told Amelia "Hand up for hello" and she did it! Right away! It was very cool. So the four of us had dinner lastnight and it was really fun. I asked Amelia if she wanted some food, which she hasn't been wanting because she's so tired. But lastnight she wanted food, so I grabbed it out of the fridge and fed her about a tablespoon of apple-blueberries. She swallowed it like a pro -- not much drooling or pushing it out of her mouth. Yay!

So now we're at Therapies 4 Kids and Amelia is crashed out for her 15 minute power nap.

Tomorrow we head home to NYC for the weekend. It'll be nice to get home!

Wednesday, June 4, 2008

Therasuits, spidercage and HBOT, oh my!

Well, we're on day 3 out here. It's been such a whirlwind! We drove out on Sunday afternoon and arrived at the Ronald McDonald House around 5:00pm. We walked in and the sweet smell of dinner was wafting through the house. We threw our stuff in our room, hooked up Amelia's feeding and strolled down to the kitchen to partake of an incredible meal cooked by a wonderful Lebanese family. We didn't know what to expect of these "donated" meals brought in by volunteers each nite, but let me tell good and such a nice communal atmoshphere. Everyone down at 6pm or so. You make your plate, sit down at one of the 25 or so kitchen tables and enjoy. You just have to take your dirty plates to one of the 5 kitchen stations for a rinse and put into the dishwasher.

Then on Monday, 5am, we were off and running for our first dive in the Hyperbaric Chamber. I was really nervous because I had no idea what to expect and I've never been in an enclosed space like that, locked in,for over an hour. Well, we got into our scrubs, laid down to have our vitals checked (always before and after the dives they have to take your blood pressure, pulse and check your ears for redness) and then off we went. Very scary the first time. When that door locked behind me...OMG!!! But, I just kept repeating that this is for Amelia and whatever good it will do -- I have to see it thru with her and that's that! She did really well...oh and me too! Although,I had a moment of freak out when the guy who runs the sessions, Harman, was out of my eyeline for awhile and I thought maybe he had walked out of the room (there is always someone sitting next to the chamber to make sure everything is okay) -- turns out he was in the back of the room folding laundry (whew!!!). Our dive #5, this AM was really good. Our bodies are getting used to the pressure changes (not as much ear popping for me and Amelia has tubes, so she doesn't get that discomfort) and the 75 minutes sessions seem quicker than the first few times. I made a DVD of her favorite Backyardigans, so she seems quite happy lying there, munching her fingers and watching her buddies.

After our 6:30am dives we race over to Therapies 4 Kids (8:30am) for her 4 hour intensive PT/OT sessions. Wow! What a tremedous amount of work. The first two hours are spent doing stretching and strengthening excercises. She lies on a mat,with her head on a pillow, sandbags on what ever limbs aren't being worked to keep them stabalized, then Amy, her incredible therapist, has little 5lb. sandbags attached to pullies and works each arm and leg. Then they do situps, reaching, grabbing, etc. Then she has a 15 minute break. After that she's put into the therasuit for the last half of the session. She does standing, with bungee cords to help support her, squatting, crawling and sitting. It's very exciting! Unfortunately, she has fallen asleep each day for about 10-15 minutes...each time around 11am, so we decided today to try and work until she falls asleep, then make that her break -- so she can get a little power nap. We'll see how that works. But she's responding really well and Amy feels she has really great potential and said she has really good muscle memory. YAY!

So after our exhausting sessions at Therapies 4 Kids, we race back over to the Hyperbaric place for our 2nd dive of the day. Now, you would think that she would go right to sleep, right? Wrong. The oxygen is very invigorating and keeps you very alert, it's not until afterwards, when we get out of the chamber, that she falls asleep. We've had to wake her up after about 45 minutes though, otherwise she'll sleep for hours and then not go down at night...not that she has been - party animal that she is!

After the afternoon HBOT we head back to the Ronald McDonald House, she's been asleep then and we wake her up around 3:45pm to take her around the house to play. So many places to go and thing to do there. And all the folks staying there are so nice. It's been great because we've had our angel of a nurse, Lia for the past 2 days. Today I'm actually alone, Lia works at a hospital 2 days a week and Nestor had to go into NYC for a couple auditions today, although he was with me for the 1st dive of the day and brought us to Therapies 4 Kids before taking off -- so for the afternoon routine I'll be flying solo. Shouldn't be too big a deal because it's not as much of a race in the afternoon.

So that's pretty much it. I'm sooo tired. It's amazing and exhausting! Very emotional and very exciting. What else can I say? I'll post pics and maybe video soon. Oh, weird not being able to use any lotions, hair products, make-up, deoderant, etc. No diaper cream on Amelia or even chapstick -- all because of the HBOT. You can't have any oils or alcohol on you because you are in an atmosphere of 100% oxygen and those things are flammable. I told Nestor that I'm going to be looking like the people in the movie "Batman" (the first one with Jack Nicholson -- not the more recent version) when the Joker puts poison into all the beauty care products and the newscasters come onto the TV to report, without any products on and their faces are all white and pastey, with frizzy hair and pimples -- that's me! Really pretty!)

Friday, May 30, 2008

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

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

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

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

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

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

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

Tuesday, May 20, 2008


Daddy, Amelia & big bro, Spike

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

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

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

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

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

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

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

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

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

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

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