Friday, January 25, 2008

Some Good and Some Bad

There are 2 stories that relate to deafness happening that I wanted to share in this space. They are both worthy of much excitement, although for entirely different reasons.

Let's start with the happy story. Pepsi is running a super bowl ad that will be silent with deaf actors. I'm actually going to tune into the super bowl (possibly for the first time ever) just to see this ad that is supposedly very humorous. Here's the story:
http://www.msnbc.msn.com/id/22824530/

And for the bad: My friend Karen at the blog A Deaf Mom Shares Her World (the one I gave the Nice Matters Award to awhile back) was recently denied service in a drive-thru window at a Steak -n- Shake because she was unable to place her order at the speaker. When she told the worker that she was deaf and unable to hear him at the speaker he waved her on, even threatening to call the police for holding up the line in the drive-thru. He picked the wrong person to mess with! Fox and ABC have covered the story! (Insert evil laugh here).

And also in bad news land, I'm sick and SICK of being sick! Lord help me, I'm going to turn into the whiniest person on earth if I dont' get over this soon.

Monday, January 21, 2008

Sewing & Widgets!

First of all, I have to make an exclamation: I Can Sew! No one is more surprised by this than me. Motherhood has brought all sorts of new aspects to my life, not the least of which is a desire to make stuff.

I used to call this space the sun room. Now I call it the sewing room.

And without further adieu, behold my first sewing accomplishment!

See that pocket holding Ethan's body worn controllers? I MADE IT!

Can you believe how well that fabric matches his jammies? That was not planned folks. That's just how I roll around here. Heather Homemaker. Heather Hobby.

As for the widget explanation, my friend and fellow blogger La La told me that if I'm going to have a list of books that link to amazon, then I may as well sign up for the associates program and make a little money from the sale of those items. If someone clicks on one of my book titles and then purchases it from amazon, I'll get a small percentage of that sale. I set up an account that will turn the rewards into gift certificates that I can use to buy more books. That way I can quit taking Ethan to all these dumb doctors and just treat him myself based on what I'm reading! (ahem, not really)

I'm off to read another chapter in Sewing for Dummies. Maybe I should add that to my amazon bookshelf.

Friday, January 18, 2008

Books

This won't be much of a post, but I wanted to mention that I added a new section to the sidebar with the titles (and links to amazon) of the books that I've been reading over the last 2 years. If only one person "out there" finds this useful it will have been worth the time that it took to copy and past all those titles and urls!

Hey, it's FRIDAY! I hope all of you have a great weekend.

Wednesday, January 16, 2008

Gluten on the Brain.

In the last post I said “I’ve read about children with autism who seem to show food addictions to the very foods their bodies are unable to properly digest.” I wasn’t clear about the how and why of this until I started reading one of my new books.

I’m reading a passage of text about dietary treatment for autism that says: “Some people with autism may metabolize gluten and casein (the protein found in milk) into the form of an opiate-much like heroin. Basically, when they eat gluten and casein, they’re getting a high off it-and they’re becoming addicted.”

I’m also reading that celiac disease and gluten sensitivity are often misdiagnosed as IBS (irritable bowel syndrome) and CFS or fibromyalgia as well as migraines. The women in my family have IBS and migraines, so this really caught my attention. I read that acid reflux is a very common symptom of gluten sensitivity. Ethan has had acid reflux since infancy but we’ve never known why. Why didn't his GI specialist order labs to get to the bottom of it? Especially given the severity of the side affects, like the 12 times I've witnessed him cease to breath for upwards of a minute? He turned grey and his lips were blue each time. I think that warrants a little more than throwing a ppi drug at the problem and saying see ya next year. Why am I researching and ordering the labs? That baffles me since we know for sure that changing our diets can reverse so many digestive complaints.

We are going to have to delay our foray into the GF diet for Ethan since conventional wisdom concludes that lab work on the gut should be done during a “natural state”. In the meantime, I’m readying myself by reading about ingredients to avoid and new items to purchase. Most of this stuff isn’t cheap or easily available in our area. However, since we’re in Columbus once a week for Ethan’s speech I can just find a good place to shop and make it part of our weekly trip.

While I’m on a food kick, I’m happy to report that Ethan likes the blueberry oat bars I made yesterday with a cup of pureed spinach snuck into the filling. That Deceptively Delicious cookbook was worth every penny. He also loves the banana bread with the pureed cauliflower. If you’ve got finicky eaters who don’t like their veggies, I highly recommend this book. I can’t even taste the veggies in these recipes.

Sunday, January 13, 2008

Kisses, GFCF and insurance

Ethan is now a fan of giving kisses, though he’s still not sure how he feels about being on the receiving end. The fact that we are so excited by his kisses is really motivating. He’s been known to kiss me 12 times in a row, with a mini celebration of sorts in between each kiss. I’m going to try to post video soon!

Next, we work on hugging ;-)

We’re back to the therapy and home visit routine after a fairly extensive break. It’s hard to keep a fixed schedule between the holidays and the wide range of viruses that have been going around. E-boy and I are both dealing with a cold at the moment, but it’s nothing compared to the sinus infection I had around the holidays. When does it stop?!

I’ve been playing around on my new sewing machine that Grandma Innis got me for Christmas. I also have Amy Karol’s book Bend-the-Rules Sewing and love it! She has a blog called The Angry Chicken if you’re into that sort of stuff. I love to look, but I’m not much of a sewer or crafter – I’m an enthusiastic wannabe. I have sewn a few pockets (made by grandma) onto Ethan’s shirts and jammies and that has been a great way to get a feel for the machine. It’s nice to set time aside for myself and attempt learning a new skill. What took me so long?

I’ve also been doing a lot of thinking (and confusing myself) about Ethan’s diet and how best to approach the inevitable elimination of gluten and casein. I’ve ordered this book and this book to help jumpstart the process. They came highly recommended by a mother in the apraxia group. I’ve also joined a new yahoo group (now I’m up to 5) called CeliacKids; they welcome any parent who is trying the GF diet. I hope to find inspiration and recipes as well as shopping ideas.

It’s so hard to imagine taking away grains and casein (found in all dairy products) when it seems that’s all the boy wants to eat. He lives on cereal, toast, crackers, and granola bars. I’ve read about children with autism who seem to show food addictions to the very foods their bodies are unable to properly digest. There is a scientific reason for this, but what it comes down to is the fact that the only way to truly know what is going on in their gut is to get vital lab work done.

I’ve put off the lab work I wrote about recently since Ethan has been on so many courses of antibiotics. Now seems like a better time to see what’s going on in that tummy. The question I’m currently pondering is whether or not to go to his GI doc at Children’s or to set up an appointment with a DAN! Doc instead. The DAN docs are noted for their knowledge on the biomedical approach whereas the GI doc we have seems to be a very treat the symptoms kind of guy and he has never shown any interest in Ethan’s diet or nutrition. Our insurance likely won’t cover a DAN doc though. They will cover something that they will end up paying out for an eternity (like prevacid) rather than a DAN doc who will get to the root of the problem and be done with it (using enzymes and probiotics for starters).

I had better end this post now before I go off on some insurance rant! I haven’t seen the movie Sicko yet and I’m afraid my head will spin out of control and blow off my shoulders if I do.

If you have done the GFCF diet and want to offer me any tips or tricks, feel free to send an email. My address is on the sidebar over there!

Saturday, January 05, 2008

The Special Mother

Drew's mom posted this on Drew's blog recently and I wanted to share it with you. I have read it several times and it never fails to bring tears to my eyes.

The Special Mother -by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."


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The fact that Ethan is able to walk is not something that we take for granted. Cmv is heinous. And when my deaf boy does say his first word, especially "momma", every inch of me will understand that a miracle has taken place.

Friday, January 04, 2008

Ci Web Resource

I'd like to extend my most sincere thanks and gratitude to those of you who left comments on the last post about Ethan's new Ci. It amazes me that this blog has made it possible for me to "meet" people who are living through the cochlear implant experience as either parents or implantees themselves. I started the blog to keep our family and friends informed and a little over a year later I'm surprised and thrilled to see what has come of it.

And to my non-implant internet friends, I've been inspired and humbled by your continuous support and friendship.

Mom to Toes has shared a new resource with me that I'm rather impressed with and would like to pass along. It's a site called Cochlear World and not only does it touch on a wide variety of Ci topics, it also includes a link to a Ci Forum that looks like a really great tool for talking to others. The forum is newly launched and only a few of us have registered and introduced ourselves so I urge anyone interested to head on over and say hello.

Ci Circle is another resource that has been absolutely invaluable to our family over the past 2 years. The last time I checked, there were over 1200 parents (from all over the world) of Ci children registered there. It's a mailing list format though, which I find somewhat tedious and disorganized when compared to a message board with categories like the one I mention above.

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It's the weekend and I'm ready to sit back and inhale some homemade choc. chip cookies. Just because the holidays are over doesn't mean we have to stop treating ourselves to the occasional treat does it?