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!"

Robotic therapy holds promise for cerebral palsy

This was shared with me by another Mom. It's very hopeful to see what's out there for our kids.


Robotic therapy holds promise for cerebral palsy

Better Now

Here she is! Back and better than ever!!! The girl is incredible.

We weathered the storm, yet again. Our wonderful in-home respite worker/friend, Jozette, was able to meet me at the hospital last Monday and help Amelia and I home from the hospital. My Mom arrived that evening from Baltimore and actually just left this morning. Between My Mom, Jozette and Amelia's former-full-time nurses, Lia and Keisha - Amelia is back to her old self. She's tearing up the joint and voicing her opinions on which cartoons are worth her time to watch. The other lovely thing she's been doing is sleeping in until about 7:45-8am. LOVE THIS!!!! I'm a little bummed she's going back to school tomorrow because I know I'm gonna have to start waking her up (and myself) at 7am. Oh well...it was nice while it lasted!

It was really great that my mother was able to make it up here and stay for so long to help Amelia and I out. We are very grateful for the extra hand -- and thanks to my father for the loan-out this week...we sent her home just in time for your cataract surgery on Wed (!!!)

Yesterday Amelia, my mom and I went to my neice, Karena and her fiance, Jonathan's, new house in Jersey City for supper. My sister-in-law, Evelyn and her husband, Carlo were there and we met Jonathan's family for the first time. It was a really nice afternoon -- wonderful food, terrific company and I have to say, Amelia was sooooo good! She's always good, but she was really responsive, happy to be around everyone and just had an overall good time. No cartoons were put on -- which is sort of a huge thing. Normally, when we sit down to eat, I'll put on her mini DVD player -- otherwise I have to do "The Mommy Show", where I don't get to eat much, everyone at the table has to tolerate my innane songs and Amelia just gets bored anyway. But yesterday, she sat in her stroller at the table, listened, laughed and enjoyed being with her family!

Nestor will be coming home tomorrow for a couple weeks before heading back to Louisiana for another week. It will be great to have him home -- I'm definitely looking forward to a little time at home together.

NOTE: Thank you to everyone who offered up their help last week. I appreciate it more than you know. It's nice to know we have so many loving friends and family who will offer to go to such lengths and effort to support us. Your phone calls, blog comments and emails count too! We are truly blessed!

Fear

As a child, my brother had this rubber caveman mask that was the most terrifying thing I had ever encountered. I wouldn't go into the basement because I knew it was down there. One time, one of his friends called my name from the back of the basement, I carefully and slowly went back and he jumped out wearing the goddamned thing! I freaked!!!! I was crying inconsolably for the longest time (in reality, it was probably only a few minutes -- but in memory, I never really got over it).

As a teenager, I was in a traumatic automobile accident with my cousin's girlfriend and best girlfriend from school while visiting my cousin in Florida. We were cut out of the car with "the jaws of life." I fractured my transverse process, had a hematoma in my kidney and had never known pain like that before. I didn't know if/when the pain would go away or if I would even live to see tomorrow.

As a twenty-something, relationships began and ended. The raw ache it would leave behind each time got deeper and deeper. The notion of opening myself up to the next person seemed an insurmountable feat. Why would I even do that again? It will just end badly. I'll have that hole in my chest again that makes me feel like I need to stop breathing and that life will never be happy again.

At thirty five I had Amelia. Fear has a whole new meaning. Becoming a parent does this to you -- whether your child is healthy or not. Everything you ever thought about becoming a parent no longer applies and everything your parents ever did that you thought was crazy-overprotective or just plain crazy, makes sense.

Friday night/Saturday morning, at 3AM, I knew real fear. I heard my little girl fighting to breathe. My regular course of action, as we've been down this road many, many times with her small, reactive airway, is to give her motrin or tylenol and a nebulizer treatment. Normally, the treatment calms her breathing as the her fever is reduced by the meds and afterwards she goes right back to sleep. Not that night.

The treatment wasn't working. Amelia started to do something I've never seen her do before. She would tense her whole body, make a guttural cry out and cough, A LOT. Over and over she did this. I turned on all the lights so I could really see her coloring and her lips were darker than normal and she was shivering horribly. Without hesitation, I dialed 911. It seemed like too many minutes between me dialing 911 and a voice coming onto the phone. I stayed on the phone with them and was assured there was a team of emergency workers on the way.

I was so sure, as I stood there next to Amelia's crib, that I was losing her. She looked so bad. No longer making guttural sounds, her eyes were rolling up into her head and she was just struggling to breathe. I was racking my brain trying to remember child CPR. I kept repeating "stay with me Amelia, stay with mommy, little girl." The police arrived first, as the 6th Precinct is downstairs, then EMS and the Fire Dept. They took the nebulizer mask and attached it to the oxygen tank and we carried her out to the ambulance. Once inside, I told them I wanted to go to NYU because that's where all her Drs. are. When we reached 14th street the paramedic told me we were going to the hospital closest on 16th st., Beth Israel.

When we arrived at Beth Israel, they put us into the trauma room and started working right away. Heavy breathing treatments, IV and oxygen. Amelia's fever was 104. After a few hours of this, we were transferred up to the PICU. A full regimen of the same continued. There was no sleep -- which was fine for Amelia because she was all wired up on albuterol. Her fever was up and down yesterday, we had two more scary episodes. And so the day continued.

Coffee, cartoons, a private room and an egg and cheese sandwich were our luxuries yesterday. Then, our upstate friends -- Amelia's adopted Titi (Aunt) Terry called and was on her way into the city to lend her support for the afternoon. I had several offers from family to come up from Baltimore (thank you and I love you!!!) but it all seemed too much. This was perfect! Terry's son drove her in for several hours and I was able to run crosstown to shower, pack a bag and get the car, while Terry stayed in the room with Amelia. When I got back, we ordered in some dinner and sat around and "gibber jabbered" for awhile. I think the bit of normalcy was good for Amelia because she perked up seemed much better. She sat up in bed the whole time watching cartoons and playing with her couple favorite toys I brought back for her.

Last night was pretty good, considering Amelia had to have multiple breathing treatments, vitals checked, fights with cannula's and overall hospital stuff done all night long. No scary episodes and we both slept quite a bit. She sleeps even now. Ahhh...there's nothing more restorative than sleep. Amelia's breathing on room air now, hasn't needed O2 since we woke up this morning and they gave her her first feeding late this morning. I think they're moving us out to the Pediatric floor today and if all goes well, we should be home tomorrow.

Home sick.

Amelia and I are both sick and stuck inside on this rainy day in New York City. I'm trying to be slightly productive between blowing my nose and wiping hers constantly. I did, however, go thru a stack of papers and came across her school photo from last year. It's not the greatest pic of Amelia, but it's her very first school photo and is a milestone.