Snow Day

Yes! We are in the midst of a "White Out!" It's snowing friends. We are hunkering down for a laaaaazy Sunday! Can't wait!

Amelia's been having a good week, although she seems to have some kind of runny nose and sneezing thing. There's been lots of wiping and suctioning, but no fevers or up-all-night. It seems like the respiratory regimin we've been doing 2x's daily is keeping her on the healthy side. Amelia also got the second half of her H1N1 vaccination this week. Such a brave girl! She didn't make a peep when she got the needle.

Lots of good gifts for Chanukah this week too. What a scam! This girl gets both Christmas and Chanukah gifts! Who's better than her? Such fun. AND...we haven't even gotten down to Baltimore yet to see my family! Lot's of presents waiting there too.

Last night Nestor and I had a date. While Amelia hung home with Jozette, we hit The Angelica and saw "Crazy Heart". We really enjoyed it! It's the first movie we've seen in a really long time -- and this morning we went, at 7:30am to The Ziegfield Theater to see Disney's "The Princess and the Frog". Nestor is a Friar and each year the Friar's Club does a movie event for kids with special needs and kids from the inner city. It's flawlessly supervised and executed. The woman of the day, Allison Grambs, who is the planner, contacts us each year and sends tickets for us and any extras we request. She ropes off seats for us and it's so much fun! Last year we had our friends, the Leshin's join us (who have a little boy with CP too), along with Amelia's nurse, Lia with her son and we got a bunch of tickets for families at The Ronald McDonald House. We had no idea how Amelia would do last year and surprisingly, she loved it! I would say she did even better this year!!!! The Leshin's didn't make it (hope Sam and Judah are feeling better!) this year, but Lia made it with her son and also, Jozette, Amelia's respite worker, with her family. Then we scurried home and hunkered down for the rest of the afternoon. What a great day!

Next week is a short school week. We're taking Amelia to UCP on Tuesday to get her fitted for new AFO's (leg braces) and to look at some adaptive strollers. Uch! I've put this off for so long because I've been in denial that she would actually need a wheelchair. Well, this is the first step toward that -- hey, it is what it is...

We're spending Christmas with Nestor's family and staying around town because Amelia is having a Nucleur Test on Monday and Tuesday between Christmas and New Years. They will inject dye thru her g-tube and do some studies on her gastric emptying. We'll go home and come back the following day to get studies done on her chest to see if any of the material was aspirated into her lungs. We're doing all of this to see if Amelia's fundoplication has come undone. We'll know more after.

On Wednesday we're heading down to Baltimore to see my family. We'll spend New Year's there and head back to NYC on Saturday.

I'm really looking forward to having a nice long break to visit all our friends and family -- it finally feels like the holiday season and I'm loving it! Happy Holidays All!!!! Peace, love and above all, Happiness to all of you.

Heaven’s Very Special Child

By Edna Massimilla

A meeting was held quite far from earth.
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow,
“Accomplishments she may not show.
“And she’ll require extra care
“From the folks she meets down there.
“She may not run or laugh or play,
“Her thoughts may seem quite far away.
“So many times she will be labeled
‘different,’ ‘helpless’ and ‘disabled.’
“So, let’s be careful where she’s sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they’ll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven’s very special child.”

The Holiday Rush

The holidays are right around the corner and Nestor and I have been running around gathering supplies. Every year there is the regular gift list...but the last four years it's grown exponentially. We have lots of therapists, local pharmacies, nurses, Jozette (our respite worker) and Amelia's whole school crew...along with all the usual suspects. So what to do?

I've always enjoyed being crafty/baking so I've taken to making things for everyone each year. Last year it was gourmet caramel apples with Belgium chocolate, crushed nuts and oreos -- they went over really well! This year I'm mixing it up and doing cookies in a jar (you know, where you layer the ingredients) and my (slightly famous) white chocolate popcorn. I got the initial popcorn recipe from my Aunt Andi (thanks!) several years ago and have added and subtracted stuff to it over the years. It's great to give to a larger place, like our pharmacies, Amelia's school, etc.

What do you do for the people who help your world go round?

Cake, Bibs and Pups

Amelia smells like cake! She came home from school today with cake batter all over her clothes. Amelia doesn't eat so for me this is a huge treat. Anytime she has food stains on her clothes -- I jump for joy. Today at school they had "cooking" -- so cute! For those of you who enjoy the sweet smells your child has after they eat candy, cookies or pudding -- breathe it in, cherish it, then go spray the clothes with OXY! (that stuff gets out everything!)

I can't believe it's already been a week since Thanksgiving. Time is a flying! We went to my niece, Karena's in Jersey City. It was scrumptious, delicious and decadent! Amelia could not keep her hands off her big brother, Spike (21). She kept grabbing his shirt, hoodie, whatever she could reach from her stroller while he sat at the table trying to eat! We left her house and headed straight to Baltimore to see my family. We were there until Monday. It was a terrific trip which included being with my sister and father on their birthdays, seeing family, my 20th High School Reunion and a Memorial for a friend, Dyana, from my class, who just passed away after a long battle with cervical cancer. It was so good to see so many old friends -- even though the Memorial was sad, it was nice to be there for it. Being out of town means missing lots of things I wish we could be there for.

One of the things that struck me while in Baltimore is how Amelia's younger cousin, Maya (2) has finally passed Amelia. Amelia has been somewhat competitive with Maya in the past and would vie for Maya's brother's attention, Ezra (5) (who is off doing many "boy" things these days, very understandable:). But Amelia is now interested in this cute little girl, who is on the fence about holding Amelia's hand because "she hurt me". We explain that Amelia doesn't mean to and that she loves Maya -- but I get it! At 2, I'm sure I wouldn't want to hold hands with someone who holds my hand too tight either. Maya also wants to know "why doesn't Amelia talk?"

Before we start saying "awwww, that's too bad" I must go on to tell you that as cute as Amelia is -- she is also a bit of a hell raiser at school! (That's my girl) Nestor and I went up to the school to pick Amelia up for a doctor's appointment and I was watching the kids during circle time from the doorway. All these sweeties are sitting in their adaptive chairs, listening to the teacher recite a story and interact with switches and such when I witnessed Amelia reach to the boy next to her -- who was just sitting there minding his own business -- and grabbed his bib, yanking it to her. Poor thing! All the nurses and attendants sitting there got the fabric out of her little vice grip and restored order. Everybody laughed! OY! Obviously she didn't mean to hurt anyone...but she was curious and she wants what she wants, when she wants it!

In terms of health, we've been good! Six weeks of antibiotics will do that! She finishes next week. It's part of the new regimin our Pulminologist put Amelia on for a chronic sinus infection which, we believe, is due to reflux. We are still doing the Vest and Cough Assist 2x's daily. As we gear up to start a new round of tests (they will inject radioactive liquid thru her G-tube, wait, and if it shows up in her lungs we know she's refluxing) -- to find out whether her fundoplication has come unwrapped or loose, or if she is just aspirating on her own secretions...you get the idea. Anyway, hopefully we'll have more answers in the next couple weeks.

Amelia's been doing lots of grabbing at everything, everywhere, all the time! I love it. She also has a new found interest in dogs. We take Amelia to the puppy store windows on Christopher Street all the time and she loves watching the pups. She puts her hands on the glass windows -- and I have to say she's quite popular because she has more brightly colored toys on her stroller than most kids have in their toy chest -- hint, hint -- puppies love that! They come up to her from behind the window, eying her ball and rag doll. Fun! And there are a couple big dogs in our building who see her off to school most days -- Chloe (Boxer) and Marshall (big Labradoodle) -- she like to pet their noses! I would love to get her a service dog one day, down the road -- seriously down the road! But how fun would that be? I'd absolutely have that pup doing Amelia's laundry, making her bed, etc. I can just see it now with one of those Donna Reed aprons on. Is that wrong?

Happy Thanksgiving

This week is flying by and before we know it we'll be packing luggage, loading up cars and shlepping to friends/family/loved ones to eat/drink/eat...you get the picture. I have begun the preparations for leaving for a long weekend. A trip to the pharmacy to load up on Amelia's medications, two trips to Loehmann's (I had to buy birthday gifts...and I just happened to find some cute things for me!) and tomorrow -- build an ice cream cake, laundry and PACK!

Thursday we will trek to my niece & boyfriend's new house in Jersey City as they host their first big Thanksgiving dinner and then take off afterwards for Baltimore to visit my family. Really looking forward to it. My sister had surgery on her thyroid last week so it will be good to see her. Also, my 20th high school reunion is on Saturday and I have been looking forward to it...still am...but...

On Monday morning Dyana Eckstein, a friend from high school, lost her battle with cancer. She was 39. Dyana wasn't a close friend of mine. We hadn't spoken in years. We were Facebook friends and I had wished her a happy birthday not even a week ago....but she was a dear friend of several of my dear friends. We went to the same parties in school, then to the same bridal and baby showers and bachelorette parties. We were always around each other in our circle and I liked her. I knew she had been sick on and off for the past several years through our mutual friends, but I thought she was in remission. I didn't realize things had gotten so bad that she was in her last efforts to find relief through clinical trials at NIH. One of our mutual best friends, Bethe, had been in daily contact with her. When I saw a post on Facebook, "RIP Dyana" yesterday I flew to the phone to call her. She told me it was her. I am so sad. Whether or not she and I were close, she was a part of my past -- we were girls together. For the girl she was and the woman she became....for the battle she waged and lost...I am sorry for her and for her family and friends...most of them my good friends. I know she touched so many people's lives and will be missed sorely. I also know she was in pain. She told Bethe that she knew her life wasn't about longevity -- she just wanted to make it to 4o.

So this Thursday, when families across the country sit down together, to give thanks and look across the table at each other -- stop and really take it in. We are in a crappy economy. Unemployment is up. We're in a seemingly endless war -- but we have so much.

For those who are by my side or sharing the holiday someplace else this year -- or who are no longer here with us...I want to send you my love. Thank you for all you have given me. I hope to live in the moment during this holiday season -- snapshots to carry with me, to remind me of all I have.

How do we cope?

Since Amelia was born, so many people have said things to me like "Amelia is so lucky to have such a strong mother," "You do so much for her," etc. and my response is always the same: "What choice do I have? Any parent would do the same. Whatever it takes!"

Last week an old friend 0f mine stopped by with her daughter and boyfriend. She and I have been in each others lives for over 15 years. Crazy! Lots of fun times and too many adventures to mention. We hung out at our little apartment for awhile and when 2pm rolled around, we all went downstairs to wait for Miss Amelia to come home on the bus. Amelia's OT was due at 2:30pm and our small apt. got even tinier. I thought my friend and her posse were going to take off when the OT came, but to my surprise, they stayed. They stayed for the whole session! During Amelia's therapy session, my friend started talking about her nephew, we'll call him David.

David has Cerebral Palsy too. He is 3 now and has aged out of Early Intervention. My friend is sad, angry, frustrated, etc. because her sister-in-law has not transitioned him to the next phase of schooling - CPSE, ages 3-5 years old. David is not receiving any therapy now. David's mother also has a 5 year old daughter who she has not placed in Kindergarten yet either. She doesn't want be apart from them...but isn't proactive in do anything to socially or physically help them either because she has a painful Thyroid problem and doesn't have the physical strength or energy. David is non-ambulatory. My friend told me that when David gets up in the morning, his mother puts him in a laundry basket padded with pillows and sets him in front of the TV to watch "The Wiggles". David's father, my friends' brother, is never home -- he disappears to play golf, play in his band or go to work. My friend is stuck in what to do. She and her Mother (David's grandmother) have tried over and over again to talk, yell, demand, etc. that these parents take action and DO SOMETHING! They are at a loss. Do you call CPS?

Incredibly, this family did do a huge fundraiser last year and raised enough money to take David to China for a stem cell transfusion-- which is so wonderful. They just got back and my friend stated that David feels very different to her -- stronger. Maybe this will be the motivation his parents need to get him into the right program and resume his services.

Onto a personal moment of bragging....my friend video taped some of the amazing things that Amelia was doing with her OT on Friday in hopes of showing it to her sister-in-law. During the session, Amelia decided it was time to throw down books out of her bookcase (which is across the room from where she was) so she belly crawled over the bookcase. When she got there I told her to "sit up to get the books" and did a countdown (she loves 3-2-1) and SHE DID IT!!! I was shocked that she actually listened to me and did something when I asked her to (it so rarely happens that anyone in my house listens to me;).

All this to say, I know so many mom's -- with typically developing kids and with kids with special needs and I have always taken for granted that we all respond the same when it comes to giving our kids everything they need to succeed. To be the best they can be. I can't fathom not doing that. How can you not rise up to the challenge and fight to give your child mobility and language -- in whatever form that is.

A perfect example of this is my friend, Jodi who lives in Italy and is the mom of two adorable and wonderful kids. Her son, Jordan is deaf and uses a cochlear implant (see the link to her blog below -- it's fantastic!). It has been a success for him. Jodi has worked tirelessly from her little town in Tuscany -- traveling to Rome, Pisa, etc. - fighting, talking, pleading, crying, etc. to doctors, administrators, mayors, presidents, etc (you get the point!) to implement a newborn hearing screening for babies, when they are born, before they leave the hospital to go home. She has had incredible success and many cities in Italy have fallen in line and are creating programs for mandatory hearing screenings. Thousands of families will be better off because of Jodi. WOW!

I have to say that somewhere in the middle is Nestor and I. We schlepp Amelia out to hippotherapy (equine assisted therapy) on saturdays...if it's not raining, too cold, if Amelia isn't sick or if the PT who runs it isn't away. We have done 98 dives of hyperbaric oxygen therapy, a few sessions of acupuncture and craniosacral therapies each and three months total of Therasuit/intensive suit therapy through our friends at Therapies 4 Kids. I have Amelia on 10 supplements daily (muscle, overall health, antioxidants and brain enhancers) along with a full regimen of daily respiratory and standing therapies. She goes to school 5 days a week from 8:30-2pm and comes home for more therapies. Amelia's teachers come 5x's/weekly and her PT (Physical Therapist), OT (Occupational Therapist) and SLP (Speech and Language Pathologist) all come 2x's/ weekly (the sessions are 60 minutes).

We know about stem cells in China (stem cell trials from a child's own banked cord blood is the only stem cell therapy happening at this time in this country for children with CP -- at Duke -- and we never banked Amelia's cord blood) and robotics (see a couple posts ago). We know there is aquatherapy and a billion other therapies we have yet to explore.

But today, my little girl got off the bus in the heart of the West Village, NYC -- in one of the greatest cities in the world. I took her to the park three blocks from our little apartment -- at two blocks away, Amelia starts to squeal in delight, knowing the direction of the stroller. Once in the park, I headed to the swings and parked our stroller. I sat myself down on an old fashioned swing, placed my sweet girl in my lap and away we went! I held her with one arm and the chain of the swing with my other. I pumped my legs and swung higher and higher. Amelia gets so excited! She straightens her legs and moves her head side to side in a "no-no-no" pattern (it's a way of self stimulation and something she does when she's deliriously happy or seriously unhappy). When we've gotten enough momentum, I straighten out my legs so she can stretch herself out and lounge. There is laughter, happiness and cooing -- from both of us! I feel so overwhelmingly grateful to be able to give her these moments of weightless joy and flight, I could stay on that stupid swing all day! My arms get sore and my back is breaking, but who cares!!!! What better therapy could be out there than this?

So much to say

Firstly, let me say that Nestor has come home!!!! He had a terrific time down in Kentucky and Louisiana. I know he's happy to be home...but I also know he had a pretty rip roaring good time down there. Good eats, good sleep and treated like a king. Hey -- we have that here, just not the sleeping part...that is, until last night!!!!

No, no, get your mind out of the gutter. What I am talking about is my second topic here: Amelia has been soooooo sick since she got off her antibiotics after her hospitalization. She has been up nights unable to get comfortable. I've been suctioning her with the suctioning unit we've barely looked at for a year and a half. I've also been putting her on oxygen the last several nights because her oxygen saturation has been horrifying whenever she falls asleep (the lowest you want your saturation to drop is about 92, she's been dropping to 84/85) . So there's been no rest for the weary. Lots of breathing treatments too. Amelia seems to do great during the day while she's up and active (as most of us are when we're sick) but we just couldn't figure out what this new thing is -- she is sooooo unhappy.

In swoops Carrie (insert "Hero" music here) , a great friend who has a son with lots of similar issues to Amelia. Carrie called me the other day, I told her what was going on, she insisted that we take Amelia in to see her son's Pulmonologist, Dr. Marcus -- all the way out in Brooklyn, mind you. She claimed that he is "THE BEST"(by the way, she always claims this...and she's always right!). So yesterday was the big appointment.

Our lives have become a routine of shlepping Amelia from specialist to specialist. The times that you actually leave someones office and think "Wow, that was time well spent" are few and very far between...yesterday far surpassed any experience we've ever had thus far! This office and these professionals were incredible. Nestor and I were speechless! The Nurse Practitioner, Kathy came in and asked us all the important questions. Then Dr. Marcus came in, Kathy gave him the lo-down, he examined Amelia and then said "Let me give you the answers of what is going on here." Nestor and I just looked at each other, then at him and said, "Oh God, yes please!" Basically, he broke it all down to her GERD issues, reflux. All reflux related. The fundoplication Amelia had as an infant has most likely become loose over time and growth (it's where they take the top of the stomach and sew it around the base of the esophagus so when the stomach becomes full it cinches around the esophagus -- not allowing anything to go up it -- hence, alleviating reflux issues). Sooooo...the pneumonia was brought on by micro-aspiration of acids from her stomach, her airway is reacting to the acids -- there is possibly scar tissue forming in her airway from the acids going over all the time, therefore making it smaller and harder to breathe with the reflux and secretions in her throat and she has a chronic sinus infection from the acids going up into her sinuses when she refluxes. Everything is red, swollen and full of secretions! My poor baby. Sooooo....he changed up all of Amelia's meds, put her on an antibiotic for a 3 or 6 week course (not sure yet, have to have a CT scan next week to see how deep the infection is in her sinus cavity), Prevacid and Astelin. We're getting two devices: a Cough Assist (helps her cough) and a Vest (vibrates the chest and loosens mucous plugs). Both will help Amelia get her secretions up and out. We weren't happy to learn about all the things plaguing our little girl and that we're now going to have to deal with but at least it's nice to know what's happening so you can deal with everything appropriately. It makes me realize how unbelievably mismanaged Amelia has been.

I gave her 2 doses of the antibiotic, 1 dose of Prevacid and Astelin yesterday...I have a new child.
Amelia not only slept through the night, but she sounded amazing!!!!! So clear! Unbelievable.


So she was able to go to school today, dressed in her Halloween outfit -- not costume. Nestor is not a big believer in dressing children up unless they're in on it too. I get it, so we compromised and got her a cute outfit that is in the spirit of Halloween! So cute!



Third, and lastly, we have postponed our move to LA for a few months or so.





I have been in close contact with lots of wonderful people out in Los Angeles and the warnings are the same:

• California is broke.
• Services are being cut left and right.
• The amount of therapy Amelia receives in New York will not be duplicated.
• They don't use Speech Therapists out there, they have Occupational Therapists with "feeding specialty". That's 4 hours weekly of Amelia's mandate - GONE!
• The big one: RESPITE IS GONE! Kaput! Not happening! We have 20 hours weekly of respite here.

I am afraid that if we give up services to move out there now, even when the State bounces back (and it will) and those programs are restored, we will not see those therapies and respite again. Once something is given up -- it is very difficult to get it back. I would rather wait a little longer and go out there on the upswing of services and therapies being reinstated. It would have been nice for the three of us to go out there as a family (Nestor has to go out there for Pilot Season in Jan/Feb) but it is for the best to wait a little longer until things are more stable.

"Tanks for weading my blog!"