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.
Saturday, December 19, 2009
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!
Posted by Debbie at 10:10 PM
Wednesday, December 16, 2009
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 .
“Their precious charge, so meek and mild
“Is heaven’s very special child.”
Posted by Debbie at 11:18 PM
Thursday, December 10, 2009
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?
Posted by Debbie at 12:39 PM
Thursday, December 3, 2009
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?
Posted by Debbie at 3:38 PM
Tuesday, November 24, 2009
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.
Posted by Debbie at 9:37 PM
Monday, November 9, 2009
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?
Posted by Debbie at 12:42 PM
Friday, October 30, 2009
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
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.
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.
Posted by Debbie at 1:24 PM
Tuesday, October 27, 2009
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
Posted by Debbie at 5:29 PM
Monday, October 12, 2009
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!
Posted by Debbie at 1:37 PM
Sunday, October 4, 2009
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.
Posted by Debbie at 11:54 AM
Sunday, September 27, 2009
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.
Posted by Debbie at 3:24 PM
Wednesday, September 23, 2009
The Serrano's, it seems at this point, are Los Angeles bound. That's right, you heard it here first. It looks like we're hitching the horses to the wagons and heading west. We're hoping to be out there by January, so Amelia can start school when they return from winter break. So much leg work has been done already and we have a lot of work ahead of us.
This conversation first began around March or so. Nestor was in LA for pilot season (that's when all the networks green light pilots/shows for the fall and actors swarm to the sunshine state to audition and hopefully book a pilot, which will then, hopefully, get picked up as a show) and he mentioned to me that he and his Manager were discussing the climate of the industry and where it's heading. It's been a rough couple of years for us for several reasons:
1. The Networks/Studios are not paying the kind of money they once did. Almost everything is scale +10% (the 10% is to pay your agent/manager their percentage) -- no negotiating.
2. Most of the shows we watch are shot in LA, with the exception of "Law & Order," "Ugly Betty," "Gossip Girl" and a couple other shows. Not much steady work for Guest Stars, which are our bread and butter jobs. Although Nestor used to be able to work out of NYC -- Networks no longer want to fly actors out to Los Angeles, rent them a car, put them into a hotel and pay them per diem -- so they go for a "local hire." For awhile, Nestor was able to work as a local hire and would make all the arrangements for himself, but that's no longer financially worth it. Also, Productions don't like to be "out of control" of their actors (ie. his flight gets delayed or canceled -- at least if they're calling the shots, they can get him on another flight, etc.)
3. Everyone wants to do TV! The jobs that used to fall into Nestor's lap are now being snatched up by film actors who used to look down on TV. Everyone has/had a series now: Harvey Keitel, Christian Slater, Holly Hunter, Lawrence Fishburne, Chris O'Donnell, etc. Those actors are now looking for a steady gig that keeps them home with their families -- not on location half way around the world. Nestor needs to be in LA so that he can walk into the room and meet the Producer, Director or Writer in person. Not on tape from the Casting Director's office in NYC. It makes a big difference when it comes down to booking a job.
There are so many mixed emotions with this decision. Obviously, we love New York. Our families are based on the East Coast. I've lived here for 20 years -- over half my life. I love the energy and action. Amelia is in a wonderful school here, has an incredible team of therapists, doctors, nurses, respite caretaker and has so many remarkable services here.
California is broke. Nestor's amazing cousin, Colette, who lives in Calabasas (in the Valley) and works in the school system has been a tremendous resource and inspiration. She has an Autistic son who has grown up to be a mainstreamed, extraordinarily high functioning teenager -- and I am not exaggerating when I tell you that the credit goes to his petite mother who screamed until she was heard. Colette has sent me every name and contact number she could find to help me. She even found the school (Sven Lokrantz, in Tarzana) that is the perfect fit for Amelia. I have spoken to the Board of Ed out there and they are awaiting Amelia's current IEP (Individual Education Program) which is a Federally recognized document -- so the funding will come from the Federal, not State, Government (PHEW!) and Amelia will receive all the services in her mandate.
The kicker is The Regional Center. In California the system for people with disabilities is different than most other states. Out there, any services received outside of school is funded by The Regional Center and unfortunately, that is funded by California State. The cuts have been deep. However, I spoke with a lovely woman yesterday who told me that families are getting what they need -- it's hard for me to believe that, but she has told me that they are on the upswing and children are receiving the therapies and respite they need. I guess I have to throw positive energy out there and hope for the best. Colette has assured me that Amelia will get everything she needs...just keep shouting till you get it. I have no problems with that!!!!
The upside of moving is that the weather is wonderful out there -- maybe Amelia won't have to live on 2 breathing treatments a day. We'll be able to buy a house (the housing market is still really, really down out there, good news for us) and move out of our little 1 bedroom, 600 sq. ft. apt. We do have cousins and extremely close friends out there, who stood by us -- so fiercely, when Amelia was born. Also, with Amelia being born out there, we have a whole team of doctors in place.
Nestor has always relished the luxury of living in NYC and working in Hollywood -- or whichever filming location. But it looks like that has changed -- at least for now. We have talked for endless hours about the move, house hunted online and sadly, broken the news to our families. I am so nervous, excited, sad, apprehensive and giddy about the whole thing. Appropriate, for our next big family adventure.
He tells me we'll move back to New York one day, I think, I hope we will.
Posted by Debbie at 11:57 AM
Sunday, September 13, 2009
This is really incredible research.
We are trying to figure out how to dress Amelia up as a German mouse. Any thoughts? I'm thinking lederhosen and Mickey Mouse ears.
Snort stem cells to get them to brain - health - 10 September 2009 - New Scientist
Shared via AddThis
Posted by Debbie at 8:24 AM
Tuesday, September 8, 2009
It was pretty quiet last week. Just hanging around and seeing friends and family. Went to the park a lot and had drinks with a girlfriend on Friday night. I actually trekked all the out to Brooklyn!
Not too much else to report, which is good! School starts tomorrow and I couldn't be happier. Don't get me wrong -- we've had a very relaxing couple of weeks -- but I am really ready to get back to my own morning routine. Also, because Amelia gets so much of her therapy and socialization at school I always feel like she loses out on a lot when she's home for such a long period of time (3.5 weeks) around us boring grown ups.
Big shout out to Ezra who turned 5 yesterday!!!!! Also to my MIL, Regina who had a birthday yesterday too -- turning...more than 5;)
Posted by Debbie at 6:46 PM
Thursday, August 20, 2009
Well, Amelia finished summer session at Roosevelt and has three and a half weeks off until school starts again. Things have been really hectic here and it's been hard to muster the energy to blog it all down...but here goes.
Since we last saw you, my cousin Jen came up to NYC and picked Amelia and I up and drove us down to Baltimore for my Mother's Bat Mitzvah. My brother, Jeff and his family were already there from Albuquerque for the festivities. That evening we went to my sister, Jackie's for Shabbat dinner and later that night, Nestor arrived from Puerto Rico. The next morning was the big event and we all arrived on time, as directed, by 10am. Mom claimed that she would be up, doing her Torah portion by 10:15am -- don't be late. Well, Mom didn't get up until around 11am. We couldn't have timed the whole thing better...at 11:02am, Amelia, my niece, Maya, Jen's son, Austin, etc -- all the kids had the 1 hour meltdown and had to go out into the hallway. HILARIOUS! It was like a bad comedy to see all of us Mom's making a beeline for the exit with screaming kids in tow. They all had a 1 hour limit and it's just too bad for everyone else. The gathering after was really nice. It was wonderful to see all our family and friends on such a joyful occasion.
On Sunday we ventured back to NYC because Amelia had her last week of summer session. She did really well. Along with everything else that's been living at school, all her art projects were sent home. So now I have Styrofoam bowls with shredded green tissue paper and cutouts of birds, a ziploc bag with clear hair gel, red glitter and plastic fish, loads of colored in pictures with feathers, felt, buttons, beads, bows and pom poms glued on and last but not least, two big, clear but blue tinted plates, which have been glued together edge to edge, with cutout fish inside -- so it looks like an aquarium. Her teacher comes up with amazingly creative projects -- our little apt is filled up fast! But I love it all!!!!
This week has been our first official week of vacation, although, we did take Amelia to the surgeon's office on Monday to have her G-tube replaced. It was slightly traumatic and I was pretty sick about it all day until we went. For those just tuning in, Amelia had four surgeries done just under 3 months ago -- one of which, was sewing up her existing G-tube site and creating a new one, just above the old one. This had to be done because Amelia's old site had become too big and the gastrostomy tube (GT) was no longer working properly (milk would pour out from around the outside of the tube). So, the surgeon did the new site and put in a new GT called a Bard button. Amelia's last GT, called a Mic-Key, could be switched out by us at home because it has an inflatable balloon (you place the uninflated balloon into the site in the stomach and then fill it with water -- the balloon is on the inside of the stomach and holds the GT in place). The Bard button is different, in that, it is put in through the esophagus (she was under anesthesia for the surgeries) and is held internally in place, at the site, by a hard, mushroom shaped piece. The reason the Bard was put in is because it is more stable than the Mic-Key -- it won't come out -- and while the new site is healing that's really important. However, these buttons all need to be replaced every 3 months for sanitary reasons -- so we knew the Bard was going to have to come out sooner or later. Well...I had no idea how they did this. Silly me, I thought they would take it back out through the esophagus. Oh no, they yank it right out. The Nurse Practitioner, who is a robot -- I swear. Even she told me (in her androgynous voice) "this is gonna hurt!" She did it so fast I didn't even know why Amelia was screaming until I saw the gauze over the site and saw the NP reaching for the Mic-Key to insert it. I welled up a little and Nestor was holding his head in his hands. OY! Enough already.
So now we're just floating through the week until we go to the beach, for a few days, next week. Our in-home respite worker, Jozette, the extraordinaire, has been here this week to give us a breather in the afternoons --which is sooooo appreciated!
Yesterday, Nestor and I went up to The Highline. For those of you who don't know about this, it's the newest attraction in NYC. The city wanted to tear down some old elevated train tracks. People in the community protested with the idea of creating a usable space out of the deserted stretch of railings and concrete, which starts at 12th St and 10th Ave. and goes up into the 30's. What has been created is really incredible. Walkways have been created, utilizing the old structure and wild flowers and grasses have been planted. There are benches and wooden chaises that look out to the river and surrounding buildings. There are huge buildings that were built over the tracks and now provide a shady underpass. When Nestor and I went there yesterday, there was a downpour, a real summer storm and we, like everyone else there, scurried under one of these big underpasses, snagged a cafe table and two chairs and waited it out. What a terrific place to people watch. I recommend it if you're visiting. (See pics)
Posted by Debbie at 5:15 PM
Tuesday, August 4, 2009
He's going to work and that's always priority around here...it's the leaving. As Mom, I don't get to leave. I'm here...ALWAYS. Day in and day out, that's what I do. It gets to me, because I don't even know how I could separate myself to leave Amelia. Nobody knows her sounds or coughs like I do. Amelia can't tell us when she's not feeling well...but even in my sleep, I can hear her breathing change and I know I need to wake up and give her a breathing treatment.
The thing is, I know for most of my friends and family, who have kids, that this is a temporary setup. There will come a day when you won't need to listen for your baby's breathing patterns, they'll call out to you or get out of bed, walk to your bedside and get you. I pray for the day that this happens with Amelia.
Which leads me to my teary afternoon. Whenever Nestor leaves town, I take a little opportunity to watch a chick flick that I know he would forbade me to even play on our TV. Today it was "Mama Mia" (I live in NYC and am the last person on earth who hasn't seen the B'way version). I was happily watching this flick when it got to the end, where Meryl Streep is singing to her daughter about all the cherished memories she holds as snapshots in her mind. It is here that my floodgates opened up and whoosh...I couldn't stop crying. I tend to not think too much about "what will be" because to be honest, with a special needs kid, you just don't know. The greatest things could be just around the corner for Amelia, but as I watched this mother get her daughter dressed for her wedding I couldn't help being sad. I don't know what lies ahead for my little girl and I want her know every joy life holds.
On the other hand, being the glutton I am, I am also reading a novel written by one of my all-time favorite authors, Kathryn Harrison (read Poison if you want a really fantastic intro to her writing), called Envy. I haven't read much yet, but it's about a married Psychoanalyst, who is a sex addict and a father of two healthy children(boy & girl), in which the little boy drowned. It's the unthinkable to lose a child. So here I am on the other side of the spectrum, crying while I read my book, thanking my lucky stars for the gift I have, Amelia.
In other words, my child may never live the life that I imagined for my child when I was carrying her in my belly. I don't know if Amelia will walk, talk, eat, go to college, fall in love and get married, have children...but she will live the fullest life we can give her. The roller coaster that is Amelia, is the most exciting, fearful, tearful, exhausting, ecstatic and blessed ride I have ever been on. Ahhh, parenthood...I guess none of us ever get to actually leave it...EVER!!!!!
Posted by Debbie at 12:41 PM
Tuesday, July 28, 2009
Amelia is doing really well -- besides getting over a pneumonia, she's been doing great. The newest thing Amelia is doing is this acrobatic rolling/sitting up/belly crawl thing. She doesn't do it all the time, but it's starting. Although, the sitting-up-in-the-crib thing is a pretty regular routine now.
Amelia loves school and gets really excited when the bus comes in the morning to take her. Here's what happens:
8:30am - Amelia's nurse, Luiza arrives and buzzes up to me to let me know she's arrived
8:40am - I put Amelia in her stroller and we head downstairs to meet the bus
8:42-9:15am - the bus rounds the corner onto 10th Street from Hudson St., I pick Amelia up out of the stroller, while Luiza grabs her Tinkerbell backpack and feeding pump backpack. We carry her to the little bus and I pass Amelia off to the lovely woman who takes her and straps her into her carseat on the bus. Meanwhile, as Amelia gets strapped in and Luiza gets situated, I run around to the window where Amelia sits (just behind the driver) and wave...blow kisses...and make an ass out myself for the whole neighborhood to see! I love it and it makes her and all the other kids crack up.
HOWEVER, somewhere in this lovely morning routine -- some bitchy, grouchy, dumbass cabbie, scooter driver or whoever will inevitably shout out TO ME ...."awwwww, come on lady. WTF????" To which I respectfully yell back "REALLY? You think they're waiting for me to finish my goodbyes, Jackass????? They're strapping her into her seat, Moron!!!!!" Yesterday I even had my neighbor downstairs with me. She gave our verbal assaulter the finger. Ah, I love NY!
Yesterday, while I was shouting at stopped traffic, Nestor went off to play in the 8th Annual Tony Darrow Celebrity Golf Tournament for UCP, NYC. Nestor's been doing this fundraiser outing since it started -- long before Amelia arrived in our lives.
Back story: It was at one of these tournaments, 3 years ago, when we had first returned from California (where Amelia was born) that Nestor bumped into Ed Matthews, the CEO of UCP, NYC. He asked Nestor how things were going and to be honest, we were in a very dark place at that time. Ed asked "how can we help?". Three days later, Ed, his second in command, Linda Laul and their "get-it-all-done-go-to-gal", Chrysanthia Kaputsos were sitting in our living room, cradling our infant girl and putting together a plan for us. UCP, NYC has been incredible to us, holding our hands through some of the most slippery slopes we've ever had to navigate, as parent's of a child like Amelia -- and they continue to do so. It feels like there is no way they could possibly give of themselves as much as they've given to us day in and day out ...only to come to realize that this is, indeed what they do for everyone. These folks at UCP are angels.
Back to yesterday....Nestor left early in the morning with our neighbor and good friend, Joe Lisi so that I could have the car to drive out to where they were playing this year (about 45 minutes away) and come to the dinner reception and show in the evening. What a fun time! The food was fantastic (I think I ate 5 lobster tails and who knows how much sushi) and the show was, as always, very entertaining. The acts are always great, but it's the shenanigans that happens between the performances that's always fun to be around. Tony Darrow is known for his wiseguy roles in "Goodfellas," "Sopranos," etc. so he always invites his paisans to attend the fundraiser. All the celebs sit together and it's really a blast.
There is always a child honored at the event and this year it was a handsome, little boy named, Maximilian. He's turning 5 on Thursday. Max is small with little head control, he can't move his arms, he is in a wheelchair and his speech consists of sounds and lip movement, with no audible words. But I'll tell you what... he has the sweetest smile, charming personality and is so communicative in his own special way -- it lit up the room and everyone in it. And he is loved. So loved by his wonderful parents and grandparents, who were all there. They are lovely people and Nestor and I had the pleasure of speaking with them for awhile.
Nestor will be leaving next week for Puerto Rico to shoot a film for about a week. Amelia and I will be hanging here for those days until my cousin, Jen comes up on Thursday to drive back to MD with us on Friday. The fun thing is that we're going back to MD because my mother is getting Bat Mitzvahed on Saturday. That's right folks, my 68 year old Mother is getting Bat Mitzvahed on August 8th. She's been taking classes for 2 years and the day has finally arrived. My brother and his brood are all making the schlep from Albuquerque, NM for the event. Nestor will fly into BWI on Friday meet up with us.
I'm sort of happy it worked out like this though because Jen and I are best friends. With both of us having kids and being in different states, we don't see much of each other these days, so I'm really looking forward to getting out with her when she gets here. At least for a few hours while Amelia is with her respite worker and in school, Jen and I can get a glimpse of our lives before husbands and kids......
Posted by Debbie at 11:31 AM
Wednesday, July 8, 2009
So. Here we are. We've had quite the couple of weeks. Let's begin with the major efforts which was packing up the house upstate. I know, I know -- you're sick of hearing about it. Me too. So let me just give a big shout out to those who sacrificed weekends and holidays to help us make this thing happen.
- Evelyn & Carlo/Titi Evelyn & Uncle Carlo
- Karena & Jonathan
- Mom & Dad/Bubbie & Zadie/Dona Ruth & The Good Dr.
- Art & Terry/Titi Terry & Uncle Artie
- Josette & Nick
WE LOVE YOU!!!!
WITHOUT YOU, WE WOULD NOT HAVE BEEN ABLE TO DO ALL WE DID!!!!
That said, it's really strange for us to no longer have our beautiful place to go to anymore. Sad.
Moving on. After packing up the house into a Pod and having it picked up and put into storage, we brought several boxes, our luggage and a set of golf clubs back with us into the city and have been staring at them since. We've been able to unpack a couple of the boxes...but a few are now playing the role of "ornamental cardboard." Perhaps a coat of paint and they could live there? The luggage and golf clubs have been strategically camouflaged behind Amelia's therapy equipment in the corner of the living room...lurking under her therapy ball. Not too bad tho considering.
Because Amelia was off of school for a week and a half (6/24 - 7/6) before her summer session started, we took off for a couple of days (packing yet again!) for Baltimore to visit my family down there. We had a nice getaway and got to see everyone. BBQ at my cousins, Mitch, Barbara & Hannah's on the 4th and sparklers in the backyard. Lots of time with my sister, her husband and kids -- whom Amelia adores!
The big bonus for me was getting to see a friend of mine from high school, Jodi who has become such a wonderful friend and huge support for Amelia and I through our blogs(see Amelia's Friends link to "An American Mom in Tuscany: Jordan's Cochlear Implant Story"). She is a dynamic and fearless advocate for her son, who has Cochlear Implants and has inspired me beyond words. Also, I actually got to meet her son and daughter too (I've only read about them on her blog) which was really cool! I think she felt the same way when she met Amelia. We've become invested in each other's lives through our stories and tales...to actually meet the person who inspires it all -- and ourselves -- is really.....cool!
We came back a couple days ago and Amelia started school again. Monday night, Amelia spiked a fever. Tylenol and motrin kicked it. Then, yesterday I got the call from school that she had 99.8, so they gave her tylenol and off we went to pick Amelia up from school and take her to the Drs. office. They did bloodwork and sent us to the hospital to get chest x-rays...and as we suspected, pneumonia. A very small case of it, as we caught it very early. Allow me to give you the back story that a couple of weeks ago Amelia was spiking fevers so we took her in for bloodwork and it showed her white blood cell count was at 33.4 (15 being the norm and 20 considered high) -- so her count was very, very high! Knowing there was infection somewhere( we would have had to have done a battery of tests to find out exactly where -- so we decided to treat the whole person rather than put her through more studies), we put her on 10 days of Biaxin. That cycle ended last Wednesday...so you can imagine that 5 days later, when her fevers started again, we were disheartened -- to say the least. But, we caught it early -- 10 days on Augmenten and she'll be good as new. Amelia seems herself, just with heavier and thicker secretions -- but jolly and happy overall.
I also wanted to mention that I was able to attend the Bris of Judah Shai Leshin a couple of weeks ago and felt so blessed to sitting among all his friends and family. Carrie, Scott and Sam, he's going to take great care of you! My heart is bursting for you all. (See the Leshin's blog "In Through The Out Door" from Amelia's Friends.)
Posted by Debbie at 12:02 PM
Monday, June 15, 2009
The biggest challenge recently, for us, is getting our house upstate packed up for our new tenants moving in on July 1st. We have 20 years of Nestor's stuff to pack up, 10 years worth of my stuff -- not to mention the stuff that belonged to the woman who sold Nestor the house -- WITH EVERYTHING IN IT! So now I'm sifting thru a lot of her leftover stuff which is sooooo cool. The house is from the 50's and the couple who lived there built it as their summer home. They traveled the world and brought back lots and lots of stuff. Not sure if anything is worth anything, but it's so cute and kitschy -- I just can't part with much of it. There are sheets from the 50's and 60's still in their wrapping along with dish towel sets, aprons, oven mits, dishes (china and depression glass sets) and table cloths from that era. The colors and patterns are outrageous. I just love it all. So we're packing it up with the rest of the junk we have.
We didn't get nearly the amount of packing done this weekend as I had hoped to, but we have family and friends coming up next weekend to pitch in and help get our POD packed up. I did, however, weed through lots of stuff and throw out a ton of stuff. It's just a never ending pit!!!!! Nestor keeps assuring me that it will all get done...I'm not so sure I'm buying it.
We've also been cleaning house here in the apt to fit the stuff we're bringing from upstate into our tiny apt. It's so hard for us girls to get rid things because, unlike the boys, we need our fat clothes! I wear a size 6 right now...but I might get fat again one day and I'm gonna need that awesome size 10 dress. You know what I'm talking about!!! So frustrating. We have a Housing Works literally, downstairs from us and Nestor can't get my reject piles out of here fast enough -- so I don't change my mind!
Nestor is going back to Miami on the 22nd to finish a movie he worked on earlier in the month. He was supposed to go to Costa Rica from there to work on another project, but thankfully it looks like that was pushed to August, so we can get back up to the house when he comes home on the 26th for another few days to finish up the last of the packing.
Amelia finishes school on the 24th for a couple of weeks and then summer session starts on July 6th until mid August.
And me? Well, I'm just trying not to loose my mind in all of this and keep on the treadmill for my 7 miles a day. Oh and we drink wine...or rum...or...
Posted by Debbie at 5:18 PM
Thursday, June 4, 2009
So Tuesday was Amelia's first day back at school. We drove her as I was too afraid to put her on the bus. The woman on the bus who handles the kids is lovely -- but it's such a hectic couple of seconds as you pass off your non-ambulatory child to this hefty woman who puts them into their car seats, before the bus driver closes his STOP sign to oncoming traffic and I scurry across the street to catch a glimpse of my girl in the window, who laughs at me as I make a fool of myself on the street waving goodbye to her and blowing kisses. But Tuesday we drove her. She did so well that we decided to send Amelia on the bus on Wednesday. I told the bus driver and woman who places the children in their seats that Amelia had surgery on her belly and has stitches there -- and I could see she really placed her gently. THANK GOODNESS! So that's back to normal -- sort of.
Amelia has a new nurse at school, Luiza. She is a sturdy Russian woman who is very sweet, but clearly overwhelmed by the crazy school schedule. Amelia needs a lot of care and Luiza has another little boy who she needs to tend to here and there. But she seems to be getting the hang of it -- as reported to me today. I was afraid she wasn't going to last the week. I'm not sure how Amelia has taken to her, it's hard for me to tell because whenever I see the two of them, Luiza is talking to me about "how hard today" was. On the other hand, she must be bonding with Amelia in some way because Amelia doesn't cry when she sees her -- crying is usually the first sign to me that whoever it is taking care of Amelia isn't making the grade. So we'll just have to see about this one.
All in all, I know Amelia is so happy to be back at school with all her friends. They were so happy to see her too. Amelia's teacher, Patty sends updates daily in her "communication book" (it's a composition book). Yesterday Amelia came home with glitter everywhere...I mean EVERYWHERE! Her diapers were sparkly!!!! So fun!!! Her therapists report that she's doing really well too. I know she's seeing and hearing better and it's really something to see how remarkable her eye contact is since the strabismus surgery. Amazing! She responds more vocally and is into everything. Lots of playing with two hands and incredible sitting up. Amelia's belly is still sore. Her norm is to lie on the playmat on her belly -- can't do that -- so she's sitting up so incredibly, for an hour or so, just playing with her toys. We're also noticing a lot more mouth breathing and she's much quieter than she was.
Next week we go for our follow up appts and to get the stitches out of her site. That should make her more comfortable.
Also, we rented out our house upstate so we're in the process of emptying out 20 years of stuff. Sooooo much stuff. An overwhelming task to say the least. Gotta be out by July 1st. OY! Well, wish us luck -- we're gonna need it.
Posted by Debbie at 8:44 PM
Sunday, May 31, 2009
Well, it's been inching the right direction each day and today was the best so far.
We were released from the PICU on Thursday and came home to find my Mom (Bubbie) and Amelia's nurse, waiting outside for us. We loaded her out of the car, brought her upstairs and propped her up on pillows on her playmat in front of the TV for the rest of the day. Cranky and kvetchy, she just stayed there and watched episode after episode of all her favorites. Amelia was fed there and given her breathing treatments there -- all propped up like the Queen of Sheba!
Amelia has a new G-tube button called a Bard button and I'm still getting the hang of it. It's similar, but different enough from her old one to cause me stress -- the extensions and tubing are rubbery and it's not fun giving her medication thru them because I never feel like they're attached properly.
Nestor got a call Thursday late afternoon that his Manager had closed a deal for him and he was flying out to Miami on friday morning at 7am. Ummm...ok. So my Mom switched her plans and stayed here with me for the weekend into the beginning of the week. Thanks Mom! Always here whenever and wherever needed. We are very blessed!!!!
I think Nestor will be home tomorrow, so that's good -- cause I know Dad is missing Mom (awww!).
The first night home was pretty bad even tho I had given her 2 doses of Tylenol with Codeine throughout the night. The next night was a little better, last night better and well...I'm keeping my fingers crossed for tonight. We've been giving her Tylenol around the clock -- and no more codeine since the first night.
Today Jackie, my sis, El, my bro-in-law, Ezra,(4) their son and Maya,(almost 2) their daughter, visited us in the city. It was great. They came up on friday to go to an Anniversary party for old family friends of El's and stayed for the weekend up in his old neighborhood. So today they drove down and spent a few hours with us. Amelia was really happy to see her cousins. We had lunch and went to the park. It was Amelia's first time out since the surgery. It was a gorgeous day and she really enjoyed herself. I hadn't seen Amelia sit up so tall in her stroller in a week. It was great! They all left and of course, Amelia took a nice long nap. After, she got her breathing treatment and Bubbie and I took her back to the park before giving Amelia her first bath since the surgery (which she really seemed to enjoy)and dinner.
We're keeping her home tomorrow with the intention of sending her to school on Tuesday. Hopefully...
Posted by Debbie at 10:02 PM
Wednesday, May 27, 2009
Well, surgeries were a success. All three docs reported that things went well. Amelia is in so much pain. We spent hours in Recovery and then were put up here in the PICU overnight. They were concerned about her respiratory system. She had some pretty heavy stuff coming out in the ER and I've been suctioning her more than I have in years -- of course, she keeps crying so that's not a huge mystery as to why!
The Opthamologist did a great job and was really happy about how it went. But it's very sad to see your child cry blood tears. Amelia has a big, swollen blood clot, in the inside corner of her right eye, both eyes are reddish and slightly crossed (this is normal and within a few weeks/months they should straighten out).
The ENT told us that he had thought the adenoids were blocking 90% of her nasal passage, but when he got in it was worse. He said it was growing into the back of her mouth. It was completely blocking her nasal drainage and on top of that, her tubes were either no longer in/not working, so there was tons of fluid and puss built up in her ears. Poor little thing!
Amelia now has a little button in her belly called a Bard Button, as opposed to the Mic-Key button. It's smaller and more flush to her skin, but it doesn't have a balloon to inflate to keep it in her stomach -- it's more of a hard plastic mushroom on the inside to keep it secure. The downside is, if something happens to it, we need to run to the ER to have it replaced (I can replace the Mic-Key myself) because the Bard has to be inserted through the esophagus (YUCK!). So that's a little worrisome. However, the chances of it coming out is less than the Mic-Key because it's a more secure device -- no chances of a balloon bursting. Oh well, just a month or two before they switch it back out for the Mic-Key.
So that's us. Thank God this day is over. Each day will help her heal and get back to being her happy self. Right now she's in a crib, in a room, shared by two other kids, watching Tigger and Pooh on our computer at her bedside. She's crying and fussing and giving me a heart attack every couple of minutes as she throws her arm with the IV around or tries to kick around, while they're finally giving her some Pedialyte in the new g-tube. Glad to see she's getting back to normal.
And a BIG thank You to Chai Lifeline for bringing us a delicious, hearty and appreciated dinner tonight at the PICU. We are so lucky that they are just a phone call away in times of need.
Posted by Debbie at 6:21 PM
We're here. We met with the 3 docs doing Amelia's surgeries. I carried her into the ER. Sang "5 Little Speckled Frogs" as they put the mask over her little nose and mouth. She smiled up at me and then faded into sleep.
They have 3 hours allotted. Eyes are first, then ears and adenoids and lastly, close the existing g-tube site and create a new one. Each doc will find us here in the waiting room after they have completed their procedure.
Calgon take me away!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Posted by Debbie at 7:48 AM
Monday, May 25, 2009
I always look forward to Memorial Day weekend. As a kid, it meant that school was almost over and summer was about to begin. Camp, swimming, staying up late...all the good stuff. As I became an adult, I looked forward to it because it meant a 3 day weekend -- and when you're working an office job -- that's awesome!!!! Then, when Nestor and I got married, we decided on Memorial Day weekend, so we could throw a huge, boogie down wedding for all our friends and family -- many of whom were out of towners.
But today, well...as Mom of Amelia, I'm sad it's over, because it means that her surgery is the day after tomorrow. I know she'll be fine. I know the procedures she's having done are "routine". I know she's a trooper and that she'll be so much better off in the long run to have all this done at one time -- and just to get it all taken care of so she can progress. But tonight, as I put my sweet little girl to bed, she looked up at me with those big, brown, trusting eyes and gave me the look. The look that only a little trusting child can give a parent. The look that says "I know you'll never let anything bad happen to me."
I lost it.
I'm going to walk into NYU on Wednesday morning at 6:15am and hand over my baby girl to 3 different surgeons so they can perform strabismus eye surgery (working on 3 muscles), replace her ear tubes (3rd set), remove her adnoise (her nasal passage is 90% blocked) and completely redo her g-tube site (sew up the existing site and punch another hole in her stomach). Yes, these are top surgeons. Yes, this is all routine stuff. Yes, children have amazing resilience.
But I feel awful ....and angry -- so f#@^&*g angry that she has to go through this. Amelia's come such a long way. I know her site can't stay the way it is -- the track (think of the shaft of an earring hole) has stretched and all this raw gooey skin is sitting just under her Mic-key button. It won't allow the button to sit flat and we have to put cut pads around the site to keep the milk and stomach acids from pouring out of it.
On top of all the obvious pain and recovery, the other big thing is that we have worked so hard to build up Amelia's stomach muscles to help her core to strengthen and now, they're going to cut through a whole new set of stomach muscles. She's been sitting up so well -- finally. Yesterday I was playing with her and she sat up for a solid 45 minutes -- completely unassisted and effortless.
I know it will all be fine. I'll vent to you guys and get over my anger (for the moment)...I'm having a "why her" kind of night. The important thing is to keep my eye on the "big picture" and jet through this so we can see our beautiful girl with straight eyes (hopefully), ear infection free who no longer snores so loud and can breathe better, dare I say -- through her nose and gets her g-tube feeds hassle free -- with the incredible added bonus for Mommy of NO MORE CAUTERIZING!!!! Too good to be true.
Keep us in your thoughts and dreams. I'll keep you posted.
Posted by Debbie at 9:39 PM
Friday, May 8, 2009
This was actually taken at the Ronald McDonald House last fall -- I just love it tho!
Sooooo......we had to cancel Amelia's ear tube and strabismus surgery which was supposed to take place yesterday because our ENT felt uncomfortable at the the surgery clinic where they were going to do the procedures. It seems that last year they shut down their pediatric facility there and are no longer equipped for a pediatric emergency there. We are totally okay with this...but it's still gotta get done, so we're waiting to see what happens.
In the meantime, we took Amelia to the surgeon's office, Dr. Ginsburg out of NYU on Tuesday because we've been having such a headache with her g-tube site. I've been cauterizing it every other night and using steroid cream on it (shrinks the skin on the site) all for naught.
Dr. Ginsburg looked at her sore little belly and said:
"Yeah, you've done everything you could do. It's not your fault and we don't know why this happens, but we're gonna have to close up her existing site and make a new one".
Horrified looks on our faces -- as if we just got kicked in the gut.
ME: "Isn't there ANYTHING else we can do?"
DR. G: "Nope"
ME: "But I was just bringing her in so you could fix it. Here. Not surgery!"
DR. G: "Sorry. You can go home and discuss it and get back to me."
ME: "Could we do the tubes and strabismus at the same time?"
And that my friends is our new little headache. And we are actually trying to see if there is anyway on God's green earth that we can do all the stuff at the same time. I'd hate to have to put her under twice in such a short span of time. Problem is her other 2 docs don't work out of NYU so we're trying to figure that out.
On a happy note, earlier that same day we attended a lovely luncheon that is given annually by UCP, NYC. The "Women Who Cares" luncheon is held every year at Cipriani's on 42nd Street. What an event. So many wonderful people there who have done so much for the community as well as so many who have personally touched our lives and helped us through some of our darkest hours in learning how to cope with Amelia's needs. Nestor was honored to present their new website www.mychildwithoutlimits.org which is a resource for parents and families dealing with the day to day needs and services of their special needs child. I always sit at the event and just cry with each person honored and video shown of our kids. Always the most striking is when they show the "then" and "now" pictures -- which shows the stark contrast between how our kids used to be treated -- filthy institutions with NO stimulation, food, clothing, or any human rights to speak of and today, with wonderful programs and people who take our children and their rights very seriously.
And we are winding down our week in Baltimore at my parent's house. It's my little cousin's Bat Mitzvah tomorrow, so we came down here yesterday to attend the weekend of events. How fun! I'm very excited that I will be wearing the very awesome Nicole Miller dress from Nestor's and my rehearsal dinner from when we got married. Never thought I'd fit into that again! Fits like a glove. YAY! So I'm preparing for a little dancing, drinking and merriment.
On a last note, I was very sad to attend the funeral for my cousin Alan's Father-in-law, Leonard Ponfield today. He had been very sick. It broke my heart to see Alan, his wife, Jodi and their two children, Jamie and Brian and all their Aunts/Sisters/Mothers/Fathers/Uncles/Cousins so bereaved. I just hope they felt all the love that everyone at the funeral was sending them to help them through this devastating time.
Posted by Debbie at 9:23 PM
Thursday, April 30, 2009
We've had a really busy few weeks. Amelia is well. Still transitioning into school. She's been spiking these high fevers at night, I give her tylenol and breathing treatments and it's gone by morning and she's not showing any signs of being sick. Completely acting like herself and laughing at my silly songs and her cartoons. I spoke to Amelia's Pediatrician about it and we both agree it must be neurologically based. Lots of times kids with neurological disorders have trouble with the brain controlling the body's temperature. So that's been tough, because it means we're up all night and then she is sleepy for school. Also, her G-tube site is still a mess and I've been having to cuaterize it every other night, with silver nitrate sticks, which is horrific. I know the granulation tissue (the tissue that grows out of a g-tube site, trying to heal the "wound" which is the hole the g-tube is placed into) isn't supposed to have any nerve endings in it...it's a crock! Amelia screams and cries bloody murder. It's literally torture. The only thing that keeps me doing it is the knowledge that if I burn all this stuff off and clean up the site, I'll be able to stop doing it one day -- hopefully soon. She recovers pretty quickly tho if we turn the right cartoon on.
Speaking of which...our young miss has become extraordinarily finicky over which cartoon episode is put on for her. So funny and at times irritating. Nestor and I have gotten into arguments over this because I'll say "Enough! We're teaching her obnoxious habits, that she can get her own way every time she puts her hand in the air" (this pointing technique she's developed means "CHANGE IT NOW!!!!", subtle) whereas, Nestor feels like this is the only place in her life where she has any control and we should honor this small request; "she doesn't get to choose what kind of food to eat, which clothes to wear, where she wants to go or have the voice to make demands of us...so let her have this small concession if it makes her happy." sigh. I have to agree with this arguement. However, lets just state right now that after watching the first 2 seconds of what-used-to-be-her-favorite Backyardigans episode, it's not so easy to just keep putting on one after the other. We went thru 9 in a row the other night before she finally gave in and allowed us the viewing pleasure for about 15 minutes before raising her hand in the air to demand the next viewing choice. I'll tell ya...four letters, D-I-V-A.
Here are some pics that were sent by Amelia's Aunt Donna today. They're from Darmia's birthday party (a few weeks ago I posted about Amelia's fun time there) and from Amelia's spring break when we met up in central park with Aunt Donna, Uncle Shawn, Darmia, their friend, Alex with his newly adopted, 3 legged pooch, Alice.
Amelia making friends, as Mommy finishes the project
Amelia napping next to Daddy, while Alex rubs Alice's belly
Daddy enjoying the day -- with a very fancy cup holder!
Uncle Shawn and Mommy listening intently to someone saying very important things!
Posted by Debbie at 12:40 PM