A milestone a minute

Oliver is now sitting up with minimal wobble and the occasional face plant.
And a new tooth is budding from below!

The camera died, so just close your eyes and imagine!

Welcome Baby Freddie!

Congratulations, Charlie and Erin on a healthy, beautiful baby boy.



We are eager to share in the next phase of your lives with him.

Elliot's Hearing

Test- inconclusive.
His ear drum has "sucked in," possibly a result of the fluid in his ear two weeks ago.
This means the test is showing a mild-moderate hearing loss.

Although I don't detect a great shift in his ability to hear us, all my recent CMV connections and reading has me believing that my son is losing his hearing, and like so many others affected by congenital CMV, he will lose all his hearing at some point. All my preparations will assume this to be the case (I originally sought Br1ght school out for this, and somewhere along the way, got used to the idea of a hearing child with developing language...)??

We have another ENT appointment in two weeks to look at the eardrum, and see if it's OK for another hearing eval.

Honestly, I am not hopeful.
About the test.
I am eternally hopeful about my son. Despite every challenge, he is full of love and life. Stay tuned.

#62

In our struggle to find a good kindergarten, we have two choices, both with "cons." One day soon I'll document the whole thing. Right now it occupies so much of our thinking that I just leave it be.

Today we found out the free immersion choice held their lottery.
We are #62 on the wait list.
I don't believe that is a choice anymore.

It's Time

9 months and one coconut costume later, Erin is ready for Freddie!
Doctor says tomorrow is the day.
I'll keep you posted. I can't wait!

Journal for El

2/22/09
dinner- veggie tacos (brocolli, cauliflower, fresh mushrooms, tomatoes, olive oil, cheese blend, sour cream, salsa on a flour tortilla); 3 oz. skim and some pomegranate blueberry juice

threw up-1 hour post-dinner

at bedtime- lots of sneezing and mucus

other- activity and attention level strong; lots of finger-mouthing.

2/23/09
am diaper- loose stools

lunch-zatarain's jambalaya with turkey sausage, green salad w/ poppy seed dressing (tomatoes, brocolli, romaine, mandarin oranges); water.

reaction- while eating, rash around the mouth

behavior pre-lunch: active, happy
behavior post-lunch: tired (late lunch), defiant, cranky for the rest of the day ;

dinner-not very hungry. ate wheat bread and some pulled pork.

reaction- rash around face throughout the evening. unsure if it's related to food.

other-lots of finger mouthing & object mouthing; lots of mucus (appears to be getting a cold, or having an allergic reaction to food); wet breathing at bed-time.

Because I could not stop for Mardi Gras...

She kindly stopped for me: Mardi Gras re-enactments this morning...I look like I had a few too many...
King Kevin, reigns over his happy kingdom!

Ana & Elliot bombard us with throws!

Workin' on that aim, lil' mama! Ana is starting to feel better.

Maybe we'll make it to Fat Tuesday for real!

Oliver is 5 months

When I think of my little guy, one word comes to mind: pleasing.

Everything about him is so pleasing. The roundness of his soft cheeks, the warm dark honey of his eyes, the chubbiness of his thighs and bottoms, the floppy largeness of his ears, the swath of hair (the combover in the back), the way he reaches for me, his loud vocalizations, the crinkle of his nose when he smiles and locks eyes...it is all so very pleasing to me.

Oliver is now almost sitting up...lots of falling over but LOVES the new perspective. Yesterday, he discovered his feet (which is REALLY funny to me because he discovered Evan Roux's feet two days before that...is he so chubby he can't see his toes(-:)???

Oliver is very vocal, and has a lot to say, especially when it's time to eat and he sees the breast! Loud, grunty, sing-songy sounds make us laugh and smile.

He's swiping accurately, and grabbing anything around. He's tolerating greater stretches of tummy time. He has rice cereal once daily, although his doctor just approved us to bump up to two meals per day, and add fruit and vegetables! It's so exciting, all the tastes in the world! I'm happy to share them with him and see how he responds.

Here are his stats:

ht: 27" (75-90%ile)

wt: 20#11oz (>95%ile)

head size: 44 cm(75%ile)

pneumococcal and Hep B vax

Strep/UTI/Virus Saga

Because I've watched every cartoon in creation...

Just to have a record-

Ana-fever and tummy ache, 2/3-2/8
Vomitting/diarrhea, 2/9-2/11 (strep diagnosis)
Blood work 2/10 (UTI)
Blood work 2/13 (clean); back to school, symptom free
bm 2/17
fever and tummy ache 2/18 (virus)

For the good doctor

Hi Dr. Demmler,

I just posted to the CMV list-serv about our 3.5 yo son Elliot. My recent concerns are related to progressive hearing loss. I've read recently about a study you were involved in that compared SNHL in symptomatic and asymptomatic children. I was hoping you could help me by answering a couple of questions.

1. What determines if a child is symptomatic or asymptomatic? What are the symptoms (mom's CMV symptoms pre-baby)?
2. Our child gradually (complete loss in rt ear by age 2) lost his hearing in one ear. The other remains healthy (testing again next Wednesday). Does the loss, and progression of loss vary and fluctuate? Of course, we are hoping his loss is unilateral...I thought we were out of the risk zone but it doesn't seem to be the case.
3. What causes the progressive loss? Does it have anything to do with the shedding of the virus when reactivated?
4. WHat can you tell me about Glanci--?
5. Do you know of a doctor in the New Orleans area with a strong interest in CMV? Should we consult regularly with a virologist?

Any information you can give would be helpful.
Emmy
Mom to Elliot (3.5)

Cause I only want to write it once tonight

A cut and paste from my posting tonight on the CMV list-serv through Syracuse University:

Hi folks,
Thank you for all the information, and warmth, and love(-;

From the sound of our post, you might think that we're new to cCMV, but our son was diagnosed 3 years ago at the age of 4 months. We initially inhaled every bit of information out there, but at the time, we were so overwhelmed with our feelings, and setting up initial supports (therapists, appts w/ specialists et al)I don't know what I remembered. I was just trying to get down all these names with Latin roots...micro-what? cytomegalo-what?

I had originally posted here (or on Baylor's list-serv?), and connected w/ a mom near New Orleans. I tried to set up a playdate after reading her blog, and she had to inform me that her daughter had passed. This made me feel so hopeless and desparate...I had to opt out of the list-serv thing. It felt noisy and dark.

We've spent the last 2.5 years relying heavily on a great support system of therapists, teachers, and specialists. And had let go of so much of the fear just from watching him overcome so many of them...and I know this will be the case despite what future challenges lie ahead.

But recently, stumbling across CMV info about hearing loss (I NEVER read up on this stuff), I felt like our neurologist doesn't fully understand how the virus behaves, and that we were led to believe that his potential for future hearing loss was nil. This has made a tremendous shift in my thinking, and reliance on doctors for information. I've known since Elliot's diagnosis that I would always be an advocate for him, and I have been...where I felt like his RIGHTS as a child w/ spec. needs were concerned, I have educated and advocated. Where other parents struggled with their own diagnoses, I've championed early intervention...but as far as intimate knowledge of CMV, I assumed (wrongly?) that the damage is done, and have relied on medical experts to tell us next steps.

So now my thinking:
-I need at least one doctor who is intrigued by CMV and keeps up with the current research on it.
-We may need to consider Glancl? for slowing hearing loss.
-We probably need to learn ASL so we're not blindsided by the loss of "his good ear."
-I need to consider other possibilities for GI issues.
-I need to connect to the larger community, to learn what I can, learn from others' experiences.

Thank you for sharing your stories. I need to dig back through and connect with you...although I did check out Project Jack, and was moved to tears in my office in a broom closet in a hundred-year old New Orleans cottage on a street that rolls right near the Mississipp--and said, damn, that's just beautiful. Thank you for sharing that.

I'm coming around but I'm generally overwhelmed. I have three kids (my daughter Ana is 5, Elliot is 3.5, and baby Oliver is 5 months old today!), and I direct a non-profit childcare started by parents after the storm. My children go there, so it's highly motivating (and convenient where therapies, interventive strategies, etc are involved), and it keeps me very busy. My husband works nights so our lives are pretty cuckoo!

We have a blog that I'd love any of you to visit: http://lospininos.blogspot.com.

And Dr. Gail, if you're out there, can you refer me to a doctor in the Greater NO area? If I don't hear from you, I'll contact you through the website.

Thank you, everyone.
Emmy

Mighty Aphrodite

Forget the creationism vs. darwinism debate. Greek Mythology has really captured Ana's imagination. Her decision to be Aphrodite came from a long curly pink wig of mine, and the suggestion that she dress as Medusa. She was completely horrified at the thought. Especially since I've shown her the clip from Clash of the Titans on youtube (remember root canal vs. Medusa?)...

When she pulled out her old Cleopatra costume, those drawings of the goddesses immediately came to mind. She announced she'd be the goddess of love...and got to dressing up...

I thought of Botticelli's Birth of Venus, and we found it online. She wanted to draw it. Can you see what it looked like? The shape beneath the feet is the shell. Ana liked hearing that she rose out of the sea...

Mardi Gras to do

For Krewe of Abeona

• Get RIT dye & spray paint to update costume
• Buy new eyelashes and possibly a new wig
• finalize food donations with Juan's/Slice
• flier Oak Street neighborhood
• contact Marilyn
• decorate kids' wagon
• figure out El's costume? Ol's costume?
• finishing touches for Ana' costume (she announced today: Aphrodite. or 2 yrs ago, her Cleopatra costume)
• sort through last years' throws for easy-to-untangle stuff

For Mardi Gras Season

• Secure plans for Wed night, Muses (Thurs), Saturday night (Kevin is OFF for Endymion!!), Thoth (Paul & Holly?), Sunday, Lundi and Mardi Gras
• Buy juice boxes, chips, cold cuts, fruit
• Wash down foldable chairs; pack in car
• Organize costume chest (wigs and sunglasses, costumes, and hats)
• replenish diaper bag
• de-cobwebify the ladder

My funny valentines

Ana's favorite valentine gift: The YOYO ball
Emmy & Kevin's favorite valentine: Elliot playing a love song WITH LEFTY!!

Tita's favorite valentine: time with Oliver

Love the 4 month tummy poses!

xoxoxo to you all!

Second Verse, same as the first

It seems like the lesson as a parent I keep revisiting, is to JUST WAIT OUT those developmental downswings...they usually precede a growth spurt...

but whilst my love Elliot was

• running and hiding under the house every time we were in the backyard (my respite)


• staring blankly


• mouthing his fingers deeply


• pinballing from activity to activity to activity


• shrill-y screaming


• pushing me away

all I could think was "Maybe this is as far as he goes," and "What is wrong with him???" and "What did I do wrong? What more could I have done?" This has gone on for about 6 months. I've struggled to even own it in my writing, but my worries have been a dark cloud overhead for some time now.

And like Cher slapping Nick Cage in "Moonstruck"--they just seem to SNAP OUT OF IT! Suddenly, there's my sweet boy again, doing a host of new things:

• swinging (holding ropes with two hands, walking backwards on his toes, and lifting off!)


• speaking in long sentences


• discussing sequence, and understanding his place/turn/order


• saying he has to potty**


• trying to dress and undress


• exhibiting gentleness with his baby brother


• asking for time with me, snuggling


• attending for longer periods of time
• Lefty whole hand grab and release! WOW!

I try to remind myself when my children are on "the upswing," that this is their developmental path--intense regression with leaping forward...and I need to keep that in mind as we look toward kinder with Ana. That worry and doubt and fear gets in the middle of the relationship, right when they need the most unconditional love and support (and of course, the frustration I feel makes me less included to be the patient mom I know I can be). I need to work to develop this perspective on their growth and development...the experience that helps me relax with all of Ollie's baby stuff, knowing what to expect. After all, this is what sharing a life is. And they are watching me pull in and out of the fog as I grow too.

We're all in this together. And we're all we've got.

The Greatest Fan of your Life

I will truly miss
entire conversations
dissecting what
"your crying soda"
might mean,
and why that would be considered a love song.

You're growing so fast, Ana.

Dem rolls

Ana says when goo-goo-ing Ollie, and pinching his chubs:

These biscuits just have too much dough, yes they do!
They are just too much for me, little guy.
I think I need some butta!

Grand Prize Winna

Hi Emmy,

On behalf of HomeAway, CONGRATULATIONS on winning the “Why I Deserve a Getaway from HomeAway” contest. We look forward to helping you find and book the perfect rental home for your next vacation.

In order to facilitate the reservation process, please identify three properties from any of the HomeAway Web sites that you’d potentially like to stay in for your prize vacation, including your preferred travel dates. Searching by availability will help you eliminate any properties that might already be booked during that time. Also, if you’re planning to travel during the “peak season” of a particular destination, we recommend selecting your dates as soon as possible so that you have a greater selection of properties to choose from. The number of guests you can bring with you is dependent on the size of the property you decide to stay in. You can find some great homes within the prize value that will accommodate more than just your immediate family. In fact, having additional space is one of the many benefits of staying in a vacation rental property!

Once you’ve selected your favorite homes, I will work with the property owner to book your reservation.

In the meantime, please do not hesitate to contact EB, Director of Global Public Relations, or me if you have questions.

Once again, congrats!

Sincerely,
JD
******
Two things:
1. Wanna help me look?
2. Who's comin' with me?

Lassez Les Bon Temps Roulez!

Krewe du Vieux last night was the best "grown-up" time I've had in a long time, and a great way to kick off the carnival season...which will from this point on, consist of packing multiple snacks, hauling a ladder, to and from the cars, calculating best vantage points x bathroom locations, etc. So last night it was all about titillating floats, cold drinks, comical costumes, and banter with good friends. Here are the highlights (lowlights would be a picture of me, this morning, nursing an iced coffee with black mascara under my eyes, but hey- there's no one around to snap me!).

We started at the R Bar on Royal, and I couldn't pass up the chance to

photograph the barber chair that I associate with lots of fun (and trouble) in my

pre-married days...

A couple of brass bands...there were great costumes and rowdy floats too, but typical me...I got the back of everything; I'm never ready.

This was the coolest thing ever: A mobile drum circle with a cross-dressing cheerleader atop. And they were rollin'! This would've been one to follow, but we were off to Mimi's!

At Mimi's...we'd gone there to eat, and were a little disappointed at first because it's more club with tapas than sit-down meal. We put our forks in our pocket (note forks in pockets blaring speaker in the heat and tried to have the fun we really wanted to have. All we had to do was be patient (and drink more!)

Hey! That's my fork!

Ready? Set! Go!

Well, the tapas came out of the kitchen--little plates of manchego cheese with sauteed mushrooms on toast, calamari in cream sauce, cooked down stews in rich sauces, and we passed them around, along with more beers, forks out of pockets, and shared delicious morsels with friends and strangers to the pulse of loud music, through a smoky haze of liquor and dissipating inhibition... a uniquely New Orleans moment that I was happy to have.

And how could I not resist a pic of Denice and Dave getting a ride to their car in the back of Paulette's mini-van. At least last night I would've dubbed it The Party Wagon.

I am all about some more grown-up time with my friends, and more of these kinds of Mardi Gras moments...It's great to be in good company.

Comedy Night

Elliot:

Knock Knock

Who's there? (No interaction. He says all this himself)

Chicken butt!

(Peals of laughter)

Ana: Knock Knock (she prompts with her eyebrows)

Me: Who's there?

Ana: Handlebars.

(she waits. a smile pulls up from the corners of her mouth. Peals of laughter!)

Are your sides splitting too?