Cleft Stories

Emily discovered my Nintendo DS. She’s playing a Crayola coloring game. I thought she looked like such a big kid playing this the other day that I couldn’t resist taking her picture. I love her little dress too.

I bought Emily a hand made dress from a Web site called Etsy last week. The actual vendor site within Etsy is called Peanoonies, so if you like this dress then check out the site. It’s nice to support artists and not worry about stuff being made in sweatshops somewhere.

The dress arrived today and Emily was more than happy to pose prettily for the camera at my request. I really wanted to email a few pictures of her wearing her Peanoonies dress to the vendor so they’d know it was appreciated. I couldn’t resist posting a few of these pictures, including the one above. She’s just so cute!

I told her to pick the dress up the way princesses do. She knew exactly what I meant.

You can see the dress is two sizes too big for her in this shot. She’s wearing it as a nightgown now, but I think she’ll get a lot of use out of it. Her favorite color is yellow and when I asked her if she liked the dress she looked at me and said, very earnestly, “yes, mommy. It’s yellow. I love yellow.”

I just added two new babies to the ever-growing NAM gallery, Nolan and Joshua. Please check out their before NAM, during NAM and post-op pictures if you can. I love these photos - for any new or pregnant moms who happen upon this site, behold these gorgeous babies and please try not to worry. All will be well.

Emily had her annual cleft team visit at NYU last Wednesday. We went into the city a bit early with the intention of stopping at Toys R Us but we couldn’t find the store (Google maps was WRONG), so we ended up taking a nice stroll from Broadway to 1st Avenue which the girls loved. Emily calls New York City her city.

Here’s a shot of Emily just before we got into the car for the long drive to NYU. Her new thing is pose like this. She’s such a ham.

So the team visit was uneventful and went quick. They took photos of Emily and her surgeon, Dr. Cutting, spoke to us for about 5 or 10 minutes about what to expect next year - mainly, orthodontia. They’re not going to do anything this year with her. Shelley, the NYU speech therapist and team coordinator had Emily recite some numbers and make some sounds to assess her speech, and the pediatric dentist on the team (he was actually the head of Pediatric Dentistry at NYU) told us Emily really needed to be seen by a pediatric dentist every three months.

Uh oh. News to us. I figured twice a year was good, and Emily hadn’t been to see her dentist since last April (er, bad me). The team dentist also said regular brushing might not be enough for Emily and there were products that they can suggest to help us fight tooth decay. Unfortunately in all the commotion we didn’t get the name of any of those products.

So I made an appointment with Emily’s local dentist and she saw him today (so did Ana). Emily’s teeth were counted and cleaned. She did great! She has one small cavity and we’re getting that filled in a couple of weeks. Her cavity is on her upper incisor and the dentist says it should only take about 10 minutes to fill. I’m not surprised because her top front teeth are so incredibly hard to brush. I can’t even see them, plus they’re kind of crooked and there’s some rough surface area where food is prone to getting stuck.

I still have some questions for NYU that I wish I’d asked.

How often will she need to be seen by the orthodontist once she gets her palate expander?

What’s involved in being fitted for the expander? Will it hurt?

How much will it cost? I’m assuming my insurance won’t cover it because it’s dental stuff and not medical. I’m pretty concerned about this.

How long will she need to wear it?

Can she see a local Orthodontist once the expander’s in place? (I’m just curious about this. I’m pretty sure we’ll be going to NYU for all orthodontia because they know their stuff).

I’ll post the answers to the above (except for NYU’s fees) once I know them.

For now, I leave you with a photo of my little pookie pie…

The most hysterical part of Emily’s birthday part was the rainbow pinata event. I thought I’d be clever and get one of those pinatas with the pull strings because the ones you hit never break open (particularly when it’s a 4-year-old’s party). Well the strings didn’t work, so my brother-in-law ripped open the ends of the rainbow and candy poured down over the crowd. If you listen closely, you can hear the kids saying “ow!” over my constant stream of conciousness rambling. None of them moved out of the way though. Go figure.

Emily is four today. I’m not really sure if the hardest part is over, but the line “Don’t you know the hardest part is over” from the song “Little Wonders” sticks in my head whenever I let myself think about how far my little wonder has come. She’s beautiful and happy and healthy. I dreamed of this day when I was pregnant with Emily and we had no idea what to expect. Time goes by so fast.

We had a birthday bash for her on Saturday. The weather was absolutely perfect. It’s like the clouds cleared away and the sun came out just for the occasion. All the kids were wearing sleeveless dresses. It had to be about 70 degrees. The very next day it dropped down to 40.

Emily asked for a pink and yellow princess cake. Flavor: strawberry. This cake wasn’t strawberry, but the presentation pleased her. She ate some frosting from her slice and declared she was done after one minute.

Here’s a close up of Emily examining one of her presents. I didn’t get any good pictures of her party (except for the cake). She was very serious about inspecting each gift once opened.

“And i don’t mind, If it’s me you need to turn to
We’ll get by, It’s the heart that really matters in the end.”
–Rob Thomas, Little Wonders

Happy Birthday, Emily!!

This is what happens to 3-year-old’s by March when you live in New York. She’s crazy with boredom and hopped up on SpongeBob repeats.

We all need to get out of the house!! I promise next year I’ll get my flu shot, and I’ll try not to stress and I’ll make the girls take their vitamins (ha!) and maybe JUST maybe, we won’t all be sick for the vast majority of the winter months.

In case you were wondering, we’re sick again.

Actually, mostly it’s me that’s sick. I have shingles, a disease I thought limited mainly to 75 year old men. I’ve had it for 2-3 weeks now, and yes it’s painful but not excruciatingly so. The girls know not to hug me on my left side. I thought everyone else was healthy until this afternoon, when I noticed that Emily seemed a bit off. At one point she curled up like a little shrimp around my hip and didn’t lift her head for an hour. Then when I tried to move her, she put a little clammy hand on my arm and I thought…”uh oh…”

My mommy senses told me to take her temperature and sure enough, 102.5! Jim is always amazed that I know when a child is sick even before the child seems to know, but thus is the power of motherhood.

Emily is “sleeping” on daddy who is really sleeping on the couch.

I can’t wait for spring!!

Emily is fine. We just got back from the hospital and the pediatric cardiologist said the murmur was harmless, and the most common form of murmur in children, called a Still’s Murmur. It’s described as a “functional” or “innocent” heart murmur and can occur in 1/3rd of kids between the ages of 3 and 5 (although Emily’s murmur was initially diagnosed when she was just nine months old). So, whew on that one. I can go back to worrying about other things now.

Here’s my good girl. Ana bundled her up so they could both go to Mars (yes, this is a space suit and the world’s largest chunk of strawberry candy).

Emily was so good at the hospital getting her tests today. The technician who did the EKG couldn’t believe it. She had like 7 things taped to her little chest and she just held still and waited until the test was over. Then she didn’t even cry when all seven things were pulled from her skin and it obviously hurt because she wimpered and flinched. She also stood very still during the chest x-ray. She’s my little trooper.

We switched Emily from a pediatrician to a family physician a couple of weeks ago because the practice where we’d been going was getting crowded, with longer wait times and we never got to see her doctor. So this new guy is great - we took her there for a follow-up because she’d had an ear infection. Her ears were clear, but the new doctor heard a heart murmur. We’ve known about the murmur since she was about nine months old and were told it was benign. However, this new physician wants us to bring her for a chest x-ray and EKG which we’ll be doing this Thursday. He said the murmur sounds loud and he wants to get it checked out. Of course I’m worried, but I’m trying not to worry. Please send us some positive energy that this is nothing more than a benign murmur. Meanwhile, I’ll try not to frantically obsess (ha!)

Ana took this picture of Emily and I, so it’s slightly blurry (at least she didn’t cut our heads off)

This is Emily’s FAVORITE nightgown. It’s got princesses, acres of pink and frills. Ew.

I’ve just added a new cutie to the NAM gallery, “Ian Timothy. Ian receives NAM treatment at Children’s Healthcare of Atlanta. His orthodontist is Dr. Granger, and his lip surgery is scheduled for April 1st. Thanks to Mary, Ian’s mom, for sharing his photos. Please take the time to visit Ian’s blog and read his story. He’s so cute, I love his chubby cheeks.