Cleft Stories

I really don’t know what she’s singing, or how she came up with that tune. All I know is I couldn’t keep it to myself. Sing it, baby, SING IT!

First of all, Happy New Year to all! I can’t believe it’s 2009 already.

I also wanted to thank everyone who commented and emailed me about my last post. I want to reassure you all that Emily is as joyful and sweet as ever – this issue of her not liking her lip in certain photos seems to be something just emerging and more troubling to me than to her.

This morning she woke me up very early (far too early on New Year’s Day) and we had some fun with one of her Christmas presents – a Pilgrim costume. Why did I buy her a Pilgrim costume? Well, Ana was learning about Thanksgiving at school and she asked for a Native American costume from Santa and she said, “but you have to get a Pilgrim costume for Emily.” So blame Santa, not me. The costume was very, er, historically accurate and also far too large (but, strangely, the waist was really small and bothered Emily). Still, we had some fun taking pictures which of course I want to share.

I believe she was going for “delightfully evil Pilgrim” with this shot. Kudos, Emily, very creepy.

Surprised Pilgrim?

I told her to look serious.

Pilgrim of joy!

I was going for a “sweet” one here, but it kind of looks like she was holding her breath. Shortly after this shot was taken, the Pilgrim costume was returned to the costume bin (likely never to be seen again).

She’s now dancing around the house wearing fairy wings, sunglasses and a princess skirt pulled up to her armpits – I will attempt to get pictures.

Thanks again to everyone who reads and comments on the blog, and sends me email and support. It’s an amazing comfort to know we’re not alone in our journey. I hope Emily will be updating her blog by herself one day!

The other day Emily was watching a movie of herself and turned to me and said she hated “that movie.” She told me to turn it off, which I did. Of course I was surprised, since she usually loves to watch movies of herself, so I asked her what was wrong. I knew the answer before she told me.

“I don’t like how my mouth looks.”

She then pointed to my face and said, “Why doesn’t my mouth look like yours? I want it to be like yours.”

And my heart just sunk deep into my chest. I hugged her and told her I loved her and that I thought her mouth was beautiful, but that it was different because of her cleft. She didn’t say anything else, but the next day she was looking at a picture of herself and it came out again. It was a large 8×10 picture that I’d just had taken and it was a close up of her face.

She punched the picture of herself – exactly in the spot where her scars were and said she hated that picture.

I love my child, and I love her face. Everyone who meets Emily adores her. But this problem is larger than me, larger than anyone who knows Emily. I wish I knew an adult with a cleft right now so they could tell me if there is anything I can say to help her love herself as much as we love her.

I’m sure it’s not helping that Emily is as girlie as they come. She adores Barbie. She loves princesses.

How can I convince her she’s gorgeous when she stares at that face all the time? How can any of us live up to that?

The faces in the media, on posters, on t.v., and in Children’s stories are perfect faces. And though none of us are perfect, kids like Emily have a lot more to deal with than I can possibly imagine.

That’s why I’ve decided to seek the help of a child therapist for Emily. I want to make sure that I do everything in my power to let her know that she doesn’t need to be perfect to be beautiful.

I tried to embed the movie of all of us dancing, but it didn’t work. You can make an elf of yourself at www.elfyourself.com. Good times!

I haven’t posted a video of Emily in a while. So here’s a treat. This is a song she learned for a solstice celebration at her school.

Here are the words:

Great big stars way up yonder
Great big stars way up yonder
Great big stars way up yonder
Oh my little soul’s gonna shine, shine
Oh my little soul’s gonna shine
Shine

I heard from Ella today that Joel is doing just fine after his surgery. She even sent some pictures and he is so cute. I wish I could post them, but I need to get permission. She and her husband are so happy – thanks for your prayers and best wishes. Ella, Joel and family – congratulations on this new start. I’m wishing you the best.

Last month I got an email from Ella, a remarkable mom in Indonesia. Ella’s son, Joel, was born in September with a unilateral cleft lip and palate. There’s a lot of cultural bias against babies with clefts in her area of the world, but in spite of this and in spite of her own worries and concerns about her baby, she’s trying to create an outreach program for mothers of children with cleft lip and palate.

Joel’s lip surgery was scheduled for yesterday and I haven’t heard back from Ella yet. I’m sure she’s got her hands full. She’d planned to feed him with a spoon, but I sent her some soft sipp bottles and I’m praying they got to her on time to help with his recovery.

If you happen upon this post, please send out some healing vibes for Joel, or say a prayer, or a light a candle. This family needs your positive energy right now. Hopefully I will have an update on Joel in the near future.

We took Emily to NYU today for a consultation with Dr. Grayson, the ordodontist on the cleft lip and palate team. Unfortunately, Dr. Grayson was out sick but we met with his current Fellow (whose name escapes me). We had a great visit in the sense that Emily listened very well and did what the doctor told her.

He told us he saw nothing out of the ordinary based on Emily’s age. She’s missing her two upper canines (which we knew) and most of her top teeth fall behind her bottom teeth when she bites down.

Simply put, this is called an underbite, or “crossbite”. More technically put, this is called a class III malocclusion and is very common in children with cleft palate. Here’s a very helpful article on About.com which defines the various classes of malocclusion (misalignment of teeth).

So, what’s in store for Emily now that she’s been diagnosed with this? Well, she’ll need to get a full set of x-rays and other imaging in about 6-8 months at which point they’ll create a treatment plan at NYU. The orthodontist told us she’d need a combination of two devices to help pull her upper jaw forward and align the teeth.

A palate expander will need to be installed in her mouth. And by “installed” I mean cemented in there for about six months. Here’s an excellent article on why this is so important, complete with a picture of the appliance.

She’ll also need to wear something called “anterior pull headgear” at night. And thank GOODNESS it’s only at night, because, well, here’s what it looks like:

According to the doctor, she’ll wear it for six months and it will really help move everything where it needs to be. She may have to wear it again in another 8 months to a year. It depends on how her jaw grows. Yes, I’m anxious about this. It look awfully uncomfortable and she’ll be 5 when she starts wearing it. But I know she needs this and, like NAM, we’ll do what we need to do for her.

Now for the fun stuff…here are a few pictures from our day in the city:

Here is the delightfully cheerful outfit she picked out all by herself (okay, I talked her into the pink boots)

The sun was a bit glaring on the ride in, so I gave her daddy’s (broken) sunglasses to wear. We ultimately pulled into a rest stop and bought her a pair of kid sunglasses for the rest of the trip.

The ride home (I was doing this in the front seat)

Her hair..unbraided. I think big hair may be making a comeback!!

I took the girls to get professional pictures taken yesterday as a surprise for my mother and mother-in-law (they don’t read the blog unless I direct them to a specific post…hopefully). I have gotten permission from the photographer, Melissa MacDonald, to post a few of the pictures here. They are unbelievable. I am speechless.

I think we have this year’s Holiday card…

A shy little smile from Ana

And…oh my gosh…how cute is she?

I can’t wait to see the proofs. Thanks Melissa, for a great job! Check out Melissa’s blog for more amazing pictures of very cute children (and families).

Please welcome Kaden to the NAM Gallery!

Kaden’s still got tape on his lip in the above photo because he’d recently had his lip surgery.

Per Kaden’s mom:

“Kaden was born on 6/20/08 and very recently had surgery to repair his lip. Like Emily, Kaden was treated by the amazing cleft team at NYU with Dr. Brecht as the lead orthodontist (though we did see Dr. Grayson a few times) and, of course, Dr. Cutting performed his surgery.”

Read more about Kaden on his blog.

And don’t forget to check him out in the NAM Gallery.

Thanks, Anita, for sharing Kaden’s story and oh-so-cute pictures.