Wednesday, March 30, 2011

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.

Sunday, March 20, 2011

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.

Thursday, March 3, 2011

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 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!

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