Cleft Stories

Okay, so I’ve been really bad about updating the site – now that it’s FEBRUARY! First of all, I want to let anyone who visits regularly know that we haven’t dropped off the face of the planet, I’ve just been busy getting some other blogs started (unrelated to clefts). I also have a terrible spam problem with this blog and so if you’ve posted comments and I haven’t responded or approved them, that’s why. I just deleted over 16,000 comments, most of them were junk. I’m sorry if I deleted yours! I’m going to come in at least once a week to check the comments from now on, but if you really need to reach me, please email me at jackie@jacquelinedooley.com!

Now for some updates on Emily.

First of all, she’s wonderful. She loves kindergarten and has many friends. She’s still happy and goofy and, as it turns out, she has a huge stubborn streak (her older sister has experienced it more than once lately).

She’s growing very tall lately too. I imagine many of my blogging buddies are seeing the same tremendous growth spurt and I PROMISE to visit all of your blogs over the next couple of weeks and leave comments. I really miss talking with other parents about our kids’ unique issues. Like, is anyone else fielding lots of “why was I born with a cleft?” types of questions from their child? Emily has been asking this a lot. I just don’t have a good answer for her.

We have a very exciting event coming up next week. Emily is going to be photographed by a professional photographer for a fundraising event for NYU! The event is being organized by the Smiley Faces Foundation

In all honesty, I don’t know much about the event except there will be many photographs of children with clefts being displayed at a big gala in the city in April. Emily turns six in April so I think that’s very appropriate! The Smiley Faces Foundation is a new foundation formed by Adam Bell and its mission is to raise money (and awareness) for NYU’s Institute of Reconstructive Plastic Surgery. Of course, we would do anything we can do to help with this cause!

Okay, I’ll end with a few recent pictures of Emily and her big sister from the last month or so.

Okay, so not one of Em’s better pictures (her lips are red and chapped), but a great shot of how she looks now in terms of her repair. This is from just a week or so ago.

Emily and Ana out in the snow after our “big” snowstorm on Wednesday.

A picture from the same day. Why is her hair wet, you ask?

That’s right. Score one for Ana. How did Ana react, you ask?

Yep. (Emily was fine)

She even got her sister back!

Wow, I guess I’ve been M.I.A. on this blog for a long time. I can’t believe I haven’t posted since the Forward Face Walk. Thanks to all who sponsored us! Unfortunately, we didn’t get to do the actual walk because the weather was horrible that weekend (Nor’Easter). The funds of course still go to Forward Face and to a very worthy charity.

We’ve been enjoying the holidays over the last few weeks. Here’s a snapshot of my cuties on Christmas Morning:

They’re gorgeous, aren’t they? They had such a great time digging into the gifts. They even hugged, which is a rarity..

See? Here’s proof!

I’ll leave you with one final shot of Emily – holding one of her favorite gifts. A ceramic mermaid for her room. I pray it doesn’t break!!

Happy Holidays to everyone! My resolution for 2010 is to write more – including updating this blog.

I can’t believe she’s five. Really, there are no words.

Here she is with last year’s backpack. It’s about as big as she is (still)

This shot cracks me up. Look at her little legs in those bright leggings! She was very adamant about wearing them on the first day of school.

All ready to go!

Sisters in matching sweaters – and a good first day of school was had by all!

There is no purpose for this post. It’s Monday, and I’m avoiding work..

It’s so very hot which is actually kind of a relief because here in the northeast it’s been unusually cold all summer (a moment of silence, please, for our poor, long-suffering garden).

It’s getting hot enough that the park is no fun…unless you can actually go swimming in a river which runs right past the park (for $1.00 per kid – a bargain even though the water is green and smells like an old wetsuit).

This is a smile of triumph because Ana managed to talk me into letting her go swimming in swamp-central

Emily searches for rocks at the bottom of the river

Emily’s “spontaneous” pose which seems to occur whenever she notices I’m taking pictures

They’re racing

It’s me! See, I DO exist. And so does the humidity, as you can see by my hair…

We’re off to NYU tomorrow so that Emily can have her Orthodontic workup with Dr. Grayson’s office (I’m not sure if she’ll see Dr. Grayson or not). This should set the expectation for her treatment for the rest of the year including what sort of mouth gear she’ll be wearing. She also has an appointment with her cleft team – this is called a cleft conference – and the entire team presents in a lecture-like room and examines Emily/asks us questions. Hopefully her surgeon, Dr. Court Cutting, will be able to tell us if she needs surgery in the next couple of years. The next surgery would be a bone graft to fuse her gums on one or both sides (both sides were completely cleft).

It will be a long day since one appointment is at 11:30 and the other is at 3:30, but I’m kind of glad for the long break in the middle. It will give us some time to eat and walk around a little.

I’m looking forward to seeing some of our old NYU friends again. It’s pretty amazing to stay with the same team for so many years – these are people who have helped us so much. I know they’ll be amazed at how big Emily has gotten. The first time they saw her, she was just 7 days old!

A sweet pose from Emily from last week.

Today was the last day of school for three months. THREE WHOLE MONTHS. Emily isn’t quite sure what that means, but older sister Ana is already planning her summer festivities which include a trip to Hershey park next month.

Emily will be starting orthodontia with NYU this month and, in all honesty, I’m dreading it on so many levels, not the least of which is the financial aspect of things. I know we’ll have to shell out about $1400 just for x-rays and other photos at the end of June, and it will be another $2000-$3000 for the orthodontic appliances she’ll need to help move her upper jaw.

So, thus begins the insurance nightmare component of this blog. My insurance is a high deductible PPO, which means I need to pay close to $6000 before any coverage kicks in at all. I’m also not allowed to go out of network…at all. Something I wasn’t aware of when I switched the plan (my own fault). So…we’ll likely need to switch insurance companies and I have a call into someone at NYU to ask some advice about that. I made that call about three weeks ago. I will call again tomorrow – it’s so frustrating not knowing what to do.

Ah well, now for some cutie pie pictures.

Such a cutie girl

A rare picture of me with Emily (I’m usually taking the pictures)

A trip to the local park/garden/zoo

Me and the girls