Busted

So, this morning Nestor and I went to the LA Premiere of the amazing documentary, "Certain Proof: A Question of Worth."  It is a a tremendous project that gives a voice to non-verbal kids like Amelia.




At the end of the film there was a Q&A with the Director, Ray Ellis.  A question was asked by an audience member and when I looked back, I saw that it was a father from Amelia's school, who I used to see all the time in the parking lot at drop-off in the mornings.  I was a little surprised to see him in West Hollywood on a Saturday morning, so far from the Valley.  On the way out we stopped to say hello to him and his wife.  I hadn't seen him in a long time and he mentioned that his son is now in a different school.  He mentioned that he still reads my blog, to which I said "well, it's been awhile since I did an entry."  He agreed.  Oops!  Busted!  I love this blog and I have been very lazy lately in posting.

I plead morning sickness.  Nausea.  Exhaustion.  Yes...Amelia is going to be a big sister in November.  We are very excited and of course, feeling a bit cautious.  Amelia has no idea what she's in for.  I keep telling her that she's going to be the best big sister and I know she will be.  She is all love -- so how could she be anything else!  I am having an amnio on Wednesday -- so keep us in your good thoughts!

Also, Amelia's IEP.  Being put on the waitlist (#204) of the inclusion charter school, Chime -- which we are in love with and were hoping against hope that Amelia might get into for Kindergarten.  Running to GI, ophthalmology, speech therapy, occupational therapy, physical therapy, OB (for me!) appointments.  We've had some out of town company -- which was spectacular!!!!  And the rest is just general crazy life!!!!!

Amelia's latest thing:  lastnight Nestor and I went to see "Bridesmaids" (so fun!).  As we were walking thru the gate to come into the house, we could hear Amelia hysterically crying from outside.  We came in and she was in a full-blown state.  Big tears and huffing and puffing.  Her nurse said that it had started a few minutes ago right after she hooked up Amelia's dinner feeding.  At first I was sure that it was the cartoon on the TV.  She can be somewhat temperamental about it and seemed to be reaching toward it.  But huge tears and hysteria?  Didn't seem right.  As I went on the other side of her, I was able to see that she was pointing to the big cup next to the TV that holds an assortment of lollipops.  In particular....the big Mickey Mouse eared lolly.  We had given it to her a few days before, but because her secretions had been thick the past few days (cold or allergies?  not sure!) lollies were off the list for now (aspiration risk).  But seriously...she had stated her case and WON!  Out came the lollipop and she was absolutely silent for the rest of her feeding.  Joyfully glowing in the sticky residue of the pop.  It was so incredible to see her fight so vehemently for what she wanted and thank goodness we were able to figure it out.  It is so frustrating for us, but just imagine how Amelia must feel.  She has been reaching for the lolly at each feeding now.  I love it!  She is associating a food (even if it is a lollipop!) with her GT feeds.  Can you imagine never having eaten food -- for your whole life?  Amelia has no real relationship to food.  I hope this is another leap for her.  Small steps are enormous in her world...and in ours!

Enjoy it, my girl!  You deserve it!!!!!!

"What are you looking at?"

Yummy:))

All's Well at the OK Corral

 School picture 2011

Just wanted to give an update.  Amelia's surgery went well last week and we're going to be seeing the ENT this week for a follow up.  She still seems to be having sensitivity with the right ear...but I'm hoping it's just taking a few days longer for it to heal up.  Anyway, she seems to be happy and enjoying her new ear tubes.  Maybe it's because she got to watch A LOT of TV!

On another topic, we went to see an amazing augmentative communications specialist a couple weeks ago. Amelia did really well on her IPad and worked especially well with an App called "Proloquo2go."  It's $189.00.  The specialist said to me "I know it's really expensive!" to which I said "Ummmm....if my child is going to be able to speak to me with it...it's priceless!!!!"  Perspective is everything friends! 

The Same Tune

So....last night was one of those nights.  It started when Amelia was on the feeding pump.  She had too much gurgling going on and I knew I wasn't going to get much sleep.  I looked Amelia in the eyes as I put her to bed and I think she knew too.  The first wake-up was around midnight and kept up about every 45 minutes until 3:30am where I got my best sleep of the night, until 6am.  There was lots of coughing, a big ol' runny nose and lots of thick yellow secretions.  Fun.  I must have switched out the blankets I had under her about 7 times throughout the night and suctioned non-stop.

When I finally got her out of bed and into her stander for her respiratory treatment it was a relief.  You know what I mean?  It was that feeling of "Well, thank God we got thru that crappy night and now we can get on with the day and figure this thing out!"

At the stroke of 8:56am I called the Pediatrician's office and miraculously they picked up (4 minutes early!)  and gave me an appt for 10:30am.  The receptionist who picked up calls Amelia the "Subway Baby" because the first time we were taking Amelia to this Dr.'s office I was getting directions from her to the office and she told me to look for the subway on the bottom level of the building.  Having just moved to LA from NYC, I was bewildered and said "You have subways in LA????"  She replied "Of course!" That was the moment we both realized she was talking about the sandwich shop and I was talking about public transportation!!!!  It endeared us to her.  Hey, if it gets me a better appt, so be it!

I gave the whole rundown to the Pediatrician, she took one look in Amelia's ears and informed me that she has big, double whammy ear infections.  Back onto Augmenten (just got off a week ago).  Believe it or not -- the timing couldn't be more perfect!

A few weeks ago I scheduled surgery for Amelia to have tubes put back in her ears next Tuesday.  It will be her 4th set.  She's had about 4 serious infections in the last 3 months, so it seems pretty clear that it's essential for her to stay well.  Had this newest infection taken a few more days to surface, we would have had to cancel -- but we have 7 days.  That's easy.  YAY!  Never been so happy to see an easily-fixed-ear-infection.

So that's the deal.  Getting this girl into fighting shape for Tuesday.  Tomorrow we're off to CHLA to get the go-ahead from her new Pulmonologist, Dr. Platzker.  Good news is that when our Ped. listened to Amelia today she said her lungs were perfectly fine.  Ahhhh, music to my ears.

Certain Proof: A Question of Worth

 Tomorrow, Monday, March 21st @ 1pm EST, I will be Guest Co-Hosting with Tara Ecklund on Family Network TV on Blogtalkradio.  We will be interviewing the filmmakers, Susan and Ken Ellis of Footpath Pictures about their full length documentary "Certain Proof: A Question of Worth" and Dr. Karen Erickson, Yoder Distinguished Professor at UNC, Center for Literacy and Disability Studies.     Their film is so provocative and important.  It really hits home for me.

To watch the trailer of "Certain Proof: A Question of Worth" click HERE.

To listen to Family Network Radio on Blogtalkradio click HERE.

This project was brought to Susan and Ken Ellis by New Voices Foundation.  New Voices wanted the Ellis' to create a film that would bring awareness to a population who is largely overlooked and misunderstood because of their physical and communication limitations. 

To watch the "New Voices" project click HERE. 

Personally, we are just at the tip of the iceberg with Amelia and figuring out all the paths and battles ahead of us.  Amelia will start Kindergarten in September and I know things are going to become more challenging the bigger she gets.   I know how important it is to find a strong community of support for us.  I am hoping to help those who are coming up behind us...and seeking knowledge from those who have "been there , done that!"  It's so important to know what to expect so you can be ready.  Sadly, it's anticipating your oppositions move before they make it so you can be ready to defend what you have (ie. therapies, adaptive equipment, nursing, medications, DME -durable medical equipment, teachers, schooling, aids/assistants, oh the list goes on and on!).

Thanks for listening and please send feedback!  I love hearing from you.

Family Network TV

**BREAKING NEWS** Being a celebrity family doesn't immune parents from having a child with additional needs. Nestor and Debbie Serrano will be our guest to share their journey with their amazing daughter Amelia. Check out Debbie's blog at http://www.amazing-amelia.blogspot.com/ You'll recognize Nestor Serrano from countless TV shows and Major Motion Movies. As recently as his role in "Secretariat" Also SPECIAL co-host Marianne Russo founder of The Coffee Klatch! http://bit.ly/hw9eMb

 Nestor and I will be doing a live show on Saturday, March 5th.  Join us!
Click here to get to the show!!!!

Joe Mantegna: A Prayer from the Bench

Our friend, Tim sent this to Nestor yesterday. It's always captivating to me to hear other special parents' stories. To hear about the very beginning, the uncertainty, then the dust settling and finding "normal," your normal -- is comforting and inspiring to me.
I was particularly moved by the end of the article -- let's face it, I was mush! I've always felt this about Amelia but never found the words to articulate it. Beautiful sentiments, truly.


Joe Mantegna: A Prayer from the Bench

Stories: Everyone's Got One

 Amelia is great and everything is going well with her.  Lots of wheels set in motion for her including: getting thru a Neurology appointment last week, where we met her new neurologist at Children's Hospital and set up an MRI for her (hasn't had one since the NICU) for the end of February.  Met with LAUSD in informal "Due Process" and settled for an hour of Speech and Occupational Therapy weekly, outside of what she is receiving in school.  And we are on the hunt for a medically based Feeding Therapist, which Amelia's former OT (the fabulous Debbie Rabin), is helping me out with.  And lastly, she will continue with her PT 2x's weekly at Joy for Kids.  We have an appt. with Amelia's new pulmonologist tomorrow at CHLA.  So things are finally falling into place out here.

Today I am sad.  So sad. 

My mom's oldest girlfriend has been battling cancer for years and years.  She is a tough broad and has overcome every bad prognosis doctor's have thrown her way over the years -- with a huge smile and the sunniest attitude you've ever seen.  She is the epitome of grace.  Her body grows tumors.  Lots of them.  She has had so many surgeries I've lost count.  Yesterday was the day they were going in to do another surgery.  Sadly, they opened her up and closed her right back up as quickly, unable to complete the surgery.  This was one of everyone's, especially hers', greatest fears. 


My mother's friend and her wonderful husband are huge constants in my life, whom I love very, very much and have known forever.  We've taken family vacations together, had countless dinners together and every time we're in town, without fail -- they (and really, all of my folks' dearest friends) make a point of coming over for a visit.  I am so blessed to have them as solid role models.  For those who have "Team Amelia" t-shirts -- she was the source! 

We also found out yesterday, that my sister-in-law, will have to undergo chemotherapy.  Several weeks ago she had a mass in her lung biopsied (she was never a smoker, mind you) and it turned out to be malignant.  She had a surgery a couple weeks ago where they removed the upper lobe of her lung, and several lymph nodes that were suspicious.  Her prognosis is good, so we are all very grateful for that.

Time marches on.  Nestor and I have our story.  Amelia is a huge part of that story and all the things that can and will happen.  We have a child with special needs who will depend on us for a very, very long time.  But we all have special needs.  We all depend on each other for a very, very long time. 

I am so lucky to have two parents, who have each battled cancer and won, victoriously. 

I have a child who overcomes odds everyday and keeps fighting. 

I am sad for the stories, but I am lucky to be a part of those stories and I am so grateful for all the blessings.