Stories about kids with cleft lip and palate, my Emily, nasoalveolar molding and more from an obsessed mom.
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!
Emily got her first “real” haircut yesterday and oh my gosh, it’s cute. I’ll let the pictures speak for themselves.
She refused to look straight at the camera
Side View
Silly face – look at those little curly curls around her face.
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…
I’ve just added this lovely little girl, Ava, to the NAM Gallery.
Check out her before/NAM pictures when you get a chance. She’s just so happy and cute and what a gorgeous smile.
We spent a marathon day at NYU yesterday for Emily’s 5-year-old cleft conference which was at 3:30. We also took her for an orthdontic visit at 11:30 where she got molds of her teeth, x-rays and photos. She’s had photos taken at NYU each year since she was a baby.
I brought my camera with me because I wanted to take a few pictures of the day, but I forgot my compact flash card! Luckily my cell phone came to the rescue, but the pictures are pretty poor quality. I still got a few good ones.
Here we are waiting to go into the ortho office. Emily was very patient and happy.
She got a toy eyeball from a vending machine. She was delighted it was pink and kept screaming, “I have a PINK eye!” I was like..um..you might no want to scream that.
Ana got a blue eye. Very appropriate.
Emily got her entire head x-ray’d. We saw the x-ray during the conference visit later in the day. It was pretty amazing. Emily’s first response when she saw it was, “I see bones!”
Emily did amazing when getting the molds of her teeth done and she also stayed perfectly still for the x-rays. I’m so proud of her! We took her and Ana to a little toy store around the corner from the hospital (we had plenty of time in between appointments). Here are some pictures from that trip.
Ana can’t decide what toy to choose.
A building we passed on our way back to the hospital. Emily liked all the windows. They reminded her of a Harold and the Purple Crayon episode where Harold draws a city. I think this is an NYU dorm.
I have a compulsion to photograph my children near iron bars. I’m not sure why…
Lunch! We ate at an exotic restaurant near the hospital. It’s called McDonald’s (they’re way more exotic in Manhattan).
So, the prognosis: Emily is doing very well! She was given the all-clear by the team speech pathologist (hi Shelley!) and her surgeon to move onto the orthodontia I’ve discussed on this blog in the past. Dr. Grayson and Cutting both confirmed that her front teeth are pointing inward toward the back of her mouth due to the scar tissue from closing her palate.
Right now her top lip is getting pulled back because of this as well, so it’s actually behind her bottom teeth. The palate expander and protraction headgear will pull her teeth forward and in just six months she’ll have a more normal profile. I’m very excited about this! We’ll probably start in September because Dr. Grayson (the orthodontist) is off in August.
I also asked about surgery and Dr. Cutting said that he actually was able to close the gum line when he did her repair back in 2004. So she may not need a bone graft, but he won’t be able to tell for another couple of years. If she does need the bone graft, it’ll happen when she’s about eight. So that’s something I won’t need to worry about for a while (WHEW)!
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!
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.
A trip to the local park/garden/zoo
Me and the girls
In November 2008 I received an email from Ella, a woman in Indonesia who’d recently had a baby with a unilateral cleft lip. We wrote back and forth for a while, and I sent her a box of stuff that included Soft Sipp bottles and Dynacleft tape, which unfortunately didn’t get to her until after her son’s surgery in January.
I hadn’t heard from her in a while and was getting worried, when the other day I got a package in the mail that contained some gifts from Indonesia and a lovely hand written note from Ella. She hasn’t had Internet access for a while, which is why I haven’t heard from her. She sent beautiful dresses for the girls from Indonesia, a hand painted sarong for me and some little toys for the girls. It was just amazing to receive this gift of friendship from a woman so far away. Ella will be publishing a booklet about feeding and caring for babies with cleft lip for the people in her community – this is quite amazing, since her culture does not readily accept children like her son and she had to hide his face prior to his lip repair.
Ella, I hope you can get to a computer and see this post! I plan on sending a thank you card, but who knows how long it will take to get there. Here are some pictures of Emily in the dress you sent – THANK YOU!!
Emily was more than happy to pose for this picture.
Looking demure…
Such a ham!
A few weeks ago I entered one of Emily’s drawings into an online art contest for kids. There was one grand prize winner who gets two tickets somewhere luxurious and 15 first place runners up – all of whom get free pajamas and lounge socks (apparently lounge socks are the product of cross-breeding socks and slippers).
Well she won!! Her artwork is featured in an online gallery on www.karenneuberger.com. It’ll only be up for a week or so – go check it out if you have a chance and buy some pajamas while you’re there (I haven’t tried the brand yet, but the reviews are fabulous).
And here’s a little gallery of my own. All of these, except the water color, were drawn when she was four.
The prize-winning picture.
Emily’s first water color painting (thanks Grandma Janne, for the art supplies)
A princess with dark skin (label by Emily)
A shape collage. The caption, by Emily, reads, “I made a house, trees, leaves falling from a tree and a tree with nothing on it.”
Rainbow princess
We took the girls to the park this weekend – it’s right on the Hudson River and there are lots of ancient-looking trees and big rocks. Emily thought one looked just like the rock from The Little Mermaid (her all-time favorite movie).
Hmmm, I wonder how many times she’s seen the movie?
(at this point I was trying really hard NOT to crack up)
Ana had a great time too. Here are a couple of shots of her on her own rock:
(Well, in all fairness, this is a tree not a rock but I love this shot of Ana)