Louisiana Center for the Deaf

Kevin and I met with a representative from the La. Center for the Deaf. We'd done this before, after Elliot's mild hearing loss in his right ear was first diagnosed about a year ago. The conversation was different today, as was our reception.

We learned about ways to help Elliot (or anyone with unilateral hearing loss):

• eliminate background noise when possible (TV, music, white noise)


• proximity


• speak with him at his eye level


• create a language-rich environment (impossible to avoid at our house(-;)


• baby sign language

We also discussed the Bright School for the Deaf and hearing impaired, and ways that the staff there maximizes communication with those children. I'm planning on passing the suggestions on to our staff at Abeona, and scheduling a tour to see if those interventions could be integrated in a mainstream environment, or if he would benefit more from being there (or somewhere else).

We discussed different adaptive technologies, and why hearing aids aren't an option (can only amplify an additional 50 decibals). We discussed cochlear impants (which sound like a true miracle, but only for children who have bilateral deafness, and can't acquire speech with their limited hearing).

The meeting was comforting, and our contact Terri will be meeting with our speech-language therapist to coordinate an approach that best meets Elliot's needs. We are truly grateful for Early Steps, and this whole Early Intervention effort. I feel that we have seen through Elliot's progress the importance and value of acting decisively while children's brains are still "plastic," and create these pathways to success.

Ana asked me about my day over dinner, and as I took her through it chronologically, I described my meeting with "the lady who wants to help us work with Elliot's ear."

After I explained the tips given by Terri, Ana said, "Tell me more."

"More ways to help Elliot?"

"Yes. More rules to help Elliot."

I smiled. I really think God chose us for Elliot. And that includes Ana. She is a critical part of his development, as conscious as we are not to pigeonhole her in the present or future caregiver role. She can't help it, like the rest of us. She LOVES him.

Swallow study tomorrow. Say a prayer, or chant, or send a warm thought our way. Thanks.

Living with CMV

Our circular journey...

I feel like we're back where we were a year ago. Right after Elliot's diagnosis, our pediatrician warned us not to google CMV. The range of possibilities would overwhelm us, she felt. After a few months of neurology, audiology, therapy appointments, I ventured to spell out cytomegalovirus in the search line. I scoured bios and stories of children and families living with CMV, and the range was daunting.

Parents subscribing to a list-serv would sign their names with a series of complications (ie, Emmy, cerebral palsy, bilateral deafness, etc.). I gulped thorugh my fear, and managed to reach out to a family in Gonzales with our same neurologist. The mother seemed exhausted, desparate, hopeless. I thought we should meet for shopping? I'm not quite sure what I thought I would have to offer this woman. I sent her an encouraging email, telling her to hang on. After a couple of days, she responded, letting me know that she'd been meaning to remove her posts. That her daughter had died a year prior. That she was sorry if that added to my own struggle with this new diagnosis.

I dropped my subscription to the CMV group that day. My rationale was that I had nothing to offer these folks, and they might not have anything to offer me right now. I knew I had rich supports through my family and friends.

Well, tonight I found myself on the list-serv tonight, and was unable to access information (I'll have to be invited again). When I found myself here last year, my guilt was that my body was not a safe place for Elliot to grow as a fetus, that he was harmed inside me because of me. When I find myself here now, I wonder if my intentional shutting out of this community could've kept me from valuable information that could've saved Elliot's hearing. I am now learning about this drug called glanciclovir that has been shown to reduce progressive hearing loss. Shouldn't I have known about this sooner? We've been riding on the wings of faith...just wait and see. Look to Elliot for what he needs. And now I wonder if this is a form of laziness.

From what I've read tonight, Elliot's chances for bilateral deafness are pretty high. There is a tremendous sense of urgency I'm feeling...do I enroll in signing classes? I feel scared of his world going silent around him. How many songs can I sing to him before it all just goes away? Will his mind remember our voices, the sound of his name? I know I'm getting ahead of myself here, but that's what a night of research will do...The last hearing test we have coming will act as a "predictor" to what his left ear might do. Do we want to know? I know the answer is yes...we're just feeling beat down right now.

Tuesday is the swallow study. I've looked into what negative results might yield. There are a multitude of feeding strategies and therapies that can help Elliot move past possible chronic aspiration...they include thickening of his food, positioning. All things that don't scare us, unlike say, a feeding tube. I'm glad this test comes on the heels of the hearing. Let's just get it over with.

Thanks for all your love and friendship. I've got to say that lunch with Tina and Rene was really healing today. I can't remember the last time I just went out with the girls and talked about the challenges of relationships, parenting, living in this city.

Elliot's Hearing Test

Elliot had his one year follow up hearing test yesterday. He has lost the hearing he had in his right ear. Kevin and I are a little blindsided. Elliot has been making great gains in speech acquisition, and is communicating so well. his left ear is very good, which would explain his ability to hear and respond to us. Elliot is continually making great strides, growing, learning, making connections. This kind of news really threw us.

I have a hard time balancing the harsh truths with unwavering optimism for Elliot. How is it I am supposed to have both when we get this punch in the stomach every few months? I feel really weak when I let myself become overwhelmed like I feel right now. But these feelings are really familiar, as Kevin and I discussed today. We know this feeling of dread and sadness, and fear...it comes with the territory...and then it goes, after a month or so.

We have another hard one on the periphery...a swallow study next Tuesday. Elliot's speech therapist fears that he may be taking in some food in his lungs. He has poor motor control of his mouth, and seems to always have a gurgle in his chest.. Quite frankly, I don't think the results will be what we hoped for...but at least we won't be taken by surprise.

I feel like I need another vacation.

I'll be updating our blog with more in the next few days, and with the details of our vacation...which was really wonderful.

Back to Reality

We're back from our train trip to Memphis and Chicago, and will be sharing our adventure in the next few days. It's a gift to be able to spend so much time together as a family.

Some highlights: Seeing my cousin and her family in Tennessee (her son fell in love with Elliot), walking the "length" of the Mississippi River via Mud Island, seeing beluga whales up close and personal at Shedd Aquarium, getting lost on the "L," getting completely hosed in Millineum Park(a real "funniest video" moment), and travelling on Amtrak with the kids. The large bag of toys, books on tape, and surprises was a waste of space (except maybe Sesame Street UNO). The nuance of train travel wasn't lost on any of us.

Coming home is a bit stressful...thinking of all the work I left behind, and how much there is to do, not to mention the bags of dirty laundry. I felt like as soon as I really started to get my bearings around Chi-town and relax it was time to go. That's how it is with travelling, I guess. Our next scheduled outing is to the beach in a condo in August. The furthest we'll be travelling is up and down the elevator to the ocean and pool. What a relief.

Holly's gift

I feel so personally fortunate to have a friend in Abeona parent Holly Scheib. Besides being a fascinating and dynamic woman (you know, the kind who inspires you at every turn), she is also an "amateur" photographer. Some days she just roams around the school, taking pictures of the children in their everyday play. Somehow, she manages to capture the children in their most natural and comfortable states...not cheesing it up for the camera (which they do, sometimes, of course). I've heard that a good photographer just takes pictures until their subject reveals their secrets, their stories. That's what Holly's pictures do. Here are a few of her latest shots of my kids at Abeona. Thank you, Holly, for capturing my babies' spirits.

Vacation

On Monday, we leave for a family trip to Memphis and Chicago via train. For months, I've been secretly excited, imagining walking the full length of the train holding Elliot's hand as he eagerly explores the inside of the choo choo. As the trip has neared, I've become so overwhelmed with all that's required to actually leave town. Just preparing to go on vacation is wearing me out completely. Between staffing and interviews, payroll, paying taxes, and readying a grant due the day we leave, I am completely pooped. And that is without having packed!

How do I allow myself to let go of all of these stresses, to really enjoy my family and the joy of travel? This is a constant struggle for me...not just a vacation question. It's about lifestyle. Is it possible to find a balance, or is certain work by its very nature consume one's time and energy, leaving little room for all else? What do I want to teach my children about the nature of work and family? I'm sure this question plagues so many women with children who work. And is it even necessary? Having learned recently of the study showing that working mothers today spend as much time with their children as stay at home mom's in the 70s, is it just the nature of modern parenting to assume that our efforts are never enough?

I feel like I consistently choose time with my children, as evidenced by our dirty house, and the pile of dishes. If the kids want "outside" when I get home, that's the choice I make, and usually don't sweat the housework. However, I do wonder about the quality of my time with the kids...The thought of Kevin looking for other work that would have him home with us nights and weekends is SO tempting. I honestly can't imagine how this would redefine our family. Having consistently cared for both children most nights and weekends for the last year, I've felt like a single mom in many ways. This is not to say that Kevin's role and support are not critical. However, coming home to prepare dinner, ready children for bed, and prepare for the next day has been a nightly chore that I haven't enjoyed. I can see how single mom's do it, but the quality of the interaction with my children has certainly suffered. I view my nightly tasks as just that: tasks. With Elliot being the poor sleeper that he is, the bedtime ritual consistently wears me out. Kevin's weighing out his options with work right now, and it's exciting. and scary. but we'll be so happy to have him home.

Do I sound like I need a vacation? I can't wait. All this preparation will certainly be worth it!

Did I mention that instead of a nap today at school, Ana lay on her mat chanting quietly, Chicago! Chicago!Chicago! Sometimes when she says it, it comes out Dichago. I need to take a page out of her book, and let the spirit take over.

Changes Brewing

I don't usually go into much detail about my work with my friends and family. It's both consuming and gratifying, which makes it difficult to make the story short.

My work in creating Abeona House in collaboration with so many dedicated parents and teachers, is a great joy in my life. The challenges of the work is a puzzle to piece together, and thinking it through is intriguing and stimulating. I'm very proud of our little school...but mostly of our (the board, the staff, the parents) willingness to look at what we're doing, and make meaningful, thoughtful changes when things aren't working. It's pure Reggio...embracing the why.

Today, the staff met for a professional development day to discuss the physical space. After meeting at the Children's Museum on Thursday to see how their view of the child manifested itself in the preparation of the space. It's a real challenge to have no budget, then walk into the museum and see the ideal, and come away inspired and ready to make changes with what you have...but that's just what our talented staff did. So today, we began discussing the Master Plan for the space, which will hopefully take shape for the coming school year. I'm confident that, with or without the money, we will continue to make strides to have our environment act as the third teacher, and give the children a space to reflect and communicate their ideas.

Crawfish Boil at Tia Ella's

Elliot got an unfortunate itch while rolling his eggs in paint...

Fun times with our Tio Medardo (Tita in the background)

It's a bird, It's a plane, no it's Ana swiping my eggs!

Thank you, Tia Ella, for a lovely Easter Day!

Saturday Fun

Build a bear (excrutiatingly pink!) 39 dollars

Beignets and cafe au lait: 8 dollars

Easter train ride: One dollar

Playdate with Jamie: Priceless

Where's Elliot?

If you've been looking for Elliot, he's in his favorite spot on Dada's chest:

Thursday was his first day in a week holding down his food. He been whiny, immobile, clingy, and generally miserable. He hasn't even been interested in his favorite place: OUTSIDE. El's even been sleeping! He's getting better, but now Tita is sick)-; Should we put the kids on antibiotics so that don't get the second round of this going around? Any thoughts?

The Power of Green Eggs & Ham

After her nap, I told Ana that we were going to the hair salon with Tita. She shot her eyes at me immediately. "I don't want to get my hair cut, Mama." Hmmm...that Toralora story didn't catch on like I'd hoped.

I just let it hang in the air. We climbed in the car. Talked about Easter, sang "Iko, Iko," basically pretending nothing was going on.

Picked up Tita. Lots of us speaking in Spanish. Very fishy to our Ana. "Mama, I don't want to get my hair cut." Me stopping at the service station. "Let's get something for after our haircut."

Getting out the car with me, "Mama, I don't want..." (you get the picture).

Bad parenting at it's finest: "Ana, do you want the Hello Kitty lollipop or the candy microphone for after your haircut?"

A: Mama, I want the candy without the haircut.

She decides on the candy filled water gun. An all-time low.

Back in the car, on our way...

A: Mama, I don't want a haircut.

Me: Ana, remember Sam I am? That fellow kept saying, "I don't not like green eggs and ham. I will not eat them in a box, I will not eat them with a fox, I will not eat them here or there, I will not eat them anywhere," and then what happens?

A: He tries them.

M: He tries them, and what?

A: He likes them

M: You might like this new thing. Let's just go check it out, and be open. You know I'd never take you somewhere to get hurt. Let's just see what this place is about, OK. You should always try something new. Otherwise you might miss out on something fantastic.

We'll have to change this lesson for our drug talk in a few years.

A: Mama, I don't want a haircut.

M: Try it, and you may, I say.

Tita and I fill the air (in English) with talk about random things. We arrive.

Exiting car, fine. Get to the door: Frozen, and crying real tears.

A: Mama, I don't want to get a haircut!! Not fitfull, just kind of scared.

Opening door, revealing pink four-wheeler barber's chair...Ana's eyes widening...

M: Let's just go check it out.

Letsy, our Honduran hairstylist, told Ana to choose a chair, or she could sit on my lap. Pouting, she chose the pink four-wheeler.

Letsy: I have this magical cape for you to wear so that you won't get hair on you...

The first cut...

Ana, with the cape, sat and looked at books, played with toys, etched a sketch, as her hair was cut. Not a tear. Two ponytails of hair were cut off in big chunks. Yes, I tried hard not to cry.

Elliot was not to be left out of the toy action!

Letsy blew her hair dry, put a clip in it, and called it a day! Ana was so proud of her new do, and I think, of herself, for having the courage to try something scary, to trust her mama, and come out shining. I'm so proud of you, Ana.

Million-dollar makeover!

Ten inches!

Now you see 'em...

Now you don't!

Let down your hair...

I've been a nervous wreck today. This morning I decided that today would be the day Ana has her first haircut (not counting the time she got the battery-operated bubble blower that "looks like a hair dryer" caught in her hair).

How would I introduce this to her without inspiring anxiety by telling her in advance, or losing her trust by springing it on her by just showing up? I've been belaboring this since we scheduled the appointment at "Kids' Hair" this morning... a place that cuts your hair while you sit on a kids' sized motorcycle, or car...would she fall for these distractions? Ana's no fool.

And what's with my unreasonable hair attachment? All my efforts to withhold Barbie and Ariel and all this princess crap, so that my daughter will know that her merits and heart are the true measure of her worth, and here I am, obsessing over the loss of her hair, and the adulation of strangers asking if they can "have one of those curls?" What a weight will be lifted with the new coiff! I hope?

So again, how to broach the subject...at nap today, the Toralora story (she's our recurring character who deals with problems and situations) was about a hair cut.

Toralora's pride and joy had been, for many years, her long, flowing hair. She loved her locks, but in the morning, this hair resulted in many a throw-down with her mama. Toralora would resist her mother's efforts to make that hair cooperate in a variety of styles, and from time to time, the hair would hang in tangled ropes around her ears. And that was just fine with her.

Well, one day, Toralora's mother drove her into town (from the country) past the pecan groves, and pastures, past Ol' Miss Moses' house, past the Ice Man who was loading a large cube of ice into the back of Leo's pickup... until they arrived at a beautiful building where mirrors and metal shined brightly. Toralora wondered why her mother had never brought her here before, to this wonderful place. As they entered, her mama told her that this was a hair salon, and Toralora was turning for the door...until a friendly lady asked her to choose a chair. Nervous, and anxious, Toralora looked into her eyes, and her mother's and could see they meant no harm, and she took the seat closest to the door, in case she changed her mind.

The lady began touching her hair gently, then brushing it out. It actually felt kind of good. And then she took the scissors in her hand, and began cutting the hair away. (I breezed through this rather quickly)...I'll spare you the details of the large lollipop she got afterwards, and how she enjoyed touching the ends of her hair, and how light she felt. And how when she saw her best friend Maybelline on her way home, Maybelline was so excited about her hair (and the lollipop)...Ana smiled behind her nunu at this part...And how Toralora could climb her apple tree without her hair getting tangled, etc, and the next day at school Maybelline came in with the haircut too...
We leave in 30 minutes. Pictures will follow. Cross your fingers(-*

Our version of The Garden Gnome?

Today, Elliot decided the frogs' rightful homes were in the flowerpot, resulting in a topsy turvy bowl of flowers.

I'm imagining these frogs being used for all kinds of play this spring!

Ready for Easter

Our preoccupation with the garden is usually seasonal...Too many other living things running around to keep up with, but for right now, we're enjoying the front-yard blooms.

I've told Ana that these blooms will help the Easter Bunny find our house. She's eagerly watching them progress. There are about 10 buds on this one.

Today, Ana moved our concrete Mayan fertility frog next to the frog planter feet. "The baby wants to be with his daddy..."

The themes of family, and good and bad, are always around us...

When we're not coughing up green stuff or sweating off the fever, our quarenteened family is outside pulling weeds.

Happy Easter!

Elliot's hearing test post-poned

Poor little guy can hardly hold down Pedialyte. He had his "big" hearing test tomorrow. The 1 year follow-up ABBR...they sedate him for about three hours, and attach electrodes that can somehow detect the range of functional hearing. It's scary and hard...we had tried the less involved test with him responding to external stimuli. Is it just me, or does it seem inappropriate to expect even a typically developing 18-month old to sit still and wait for Sponge Bob to light up while mom and dad sit silently behind you?

All of this to get an accurate measure for his hearing aide. Which is a whole saga in and of itself...audiologist disagreeing with speech therapist...passive aggressive comments about the other back and forth. Can someone just tell us what's right for Elliot? I really should know better. Parents of children with special needs have no excuse for not being on top of all the current research, and need to be prepared to advocate for the best for their child. Our support team has been such a gift to us since all of this started. I didn't expect these kinds of debates until Elliot aged out of early intervention at age 3...

So the test is rescheduled. And the new debate begins between speech therapist and pediatrician about whether or not Elliot needs a "Swallow Study." How can we disagree when someone enters the possibility into our heads that our son "may be slowly aspirating?" What if we were living in a place with no health care? Would we be better off running our restaurant on the beach? Too many voices today.

ARGGGHHHHHHHHHHHHH

Nose Hose

We've all got "it" now, and it's no walk up the levee.

A whole house of us, miserable. Elliot home from school, with Tito babysitting. Now that's a first!

My head feels like a lead balloon, and I can't even hear. Theraflu, useless. Claritin, a waste, with a 24-hour timeframe. Should I have paid more attention to those ridiculous pharmaceutical ads?

Desparate, I reached for my pregnancy allergy aid. It's been in the back of the bathroom closet since I was pregnant with Elliot. That's right, it's the NOSE HOSE. Our homeopathic savior from pregnancy allergies. Have you seen one?

Fill it with salty water, and with some proper positioning, the salt water goes in your nose, and the mucus comes dripping out of the other nostril. Real pretty. Like a clown with the red handkerchief. But it's the first real relief I've had in days.

Keeping vigil

Last night, Ana woke up with 103 degree fever.
Legs hot, body burning, her moaning in her sleep...

Where's the first aid book? Are we out of children's motrin? Where's the thermometer? This one doesn't work, it reads I'm 93 degrees! Did you see the other one? These ear thermometers are a piece of crap. Next time, lets get the $100 one. Well, anyone can see she's just hot. very hot. Grab a cold rag. Take off her clothes. Where's the motrin? Is that Elliot crying. What's it read now. Ana, just take a sip of this water. Yes, it's cold. You're cold? She's shaking, Kevin. It's ok baby, mama's here. Daddy's here too. We're both here, and you're going to be fine. Just close your eyes, and think of the time Toralora won the fishing contest. Do you remember that story? Just close your eyes, and think of how cool the lagoon was when she jumped in afterwards, and how she spewed water out of her mouth like a blue whale. I know you don't like this thing under your arm. Just one more second, baby. It's fine. You're fine. It's just a little fever baby. You'll feel better with some sleep. Let's try to get some rest.

Spring Garden

That sink we bought on Ebay has been in the shed for months.

Today we put it to good use...

More bathroom photos...

Here they are...

Where the medicine cabinet used to be...

Tile walls ripped out, floor ripped out, joists repaired, plywood down...

Bella's First Birthday

Happy Birthday, Bella! It's a joy watching you grow.