Sponsor us for the Forward Face Walk

Sponsor Team Dooley at the Forward Face Walk for Awareness of Facial Differences 2009!

Forward Face, Inc., a grassroots organization based in New York that provides support to families managing the challenges of living with a craniofacial condition, is organizing Walk for Awareness to help raise money for the organization. We’re all taking the two hour drive into the city to support this important cause, so near and dear to us.

The walk is this Sunday, October 15, 2009 at Pier 84 in Manhattan. We’re trying to raise $1000 to support Forward Face fund educational outreach on craniofacial differences including programs to schools across the country.

If you’d like to sponsor us, you can donate online via Emily’s page:

http://www.firstgiving.com/emilydooley

New Addition to the NAM Gallery – Baby Ava

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.


Thanks to Ava’s mom and dad for sharing her pictures!

Trip to NYU

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)!

Happy Birthday, Emily!!

Okay, I’m not sure when it happened, but at some point I blinked and my little baby turned into an adorable, sweet, wonderfully mischievous 5-year-old. That was yesterday, so this post is a day late.

We celebrated Emily’s birthday pretty much all day. We gave her the first gift before school – these sparkly shoes:

And I baked cupcakes for her class. When she came home she got to open the rest of her gifts (mostly Barbie-doll related) and we took her to eat at her favorite restaurant (the diner). She’s having a big bash with all her friends on the 25th, so I’ll have lots more pictures from the party. I couldn’t resist getting her a cake yesterday though.

I didn’t have the foresight to buy birthday candles – those are tea lights on the cake (ahem). It’s also a red velvet cake which she loved, although I could swear it looked pink in the store. Nothing says Happy Birthday like a bright red cake!


What?

As a fitting tribute to Emily’s 5th birthday, I’ve entered Cleftstories.com into a contest to win a free ticket to the Good Experience Live 2009 conference (GEL) at the end of this month. Check out my entry here:

Click to play this Smilebox slideshow: Emily's Story
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Happy Birthday, Emily!

NAM Gallery Update – Introducing Ian!

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.

Support the National Foundation for Facial Reconstruction

The National Foundation for Facial Reconstruction (NFFR) provides funding for NYU’s Institute of Reconstructive Plastic Surgery. This enables NYU to provide care for families who may not have insurance or any money to pay the many medical fees associated with the care and treatment of a child with a craniofacial condition. Here is a snippet from the NFFR’s mission statement:

“The NFFR founded and proudly remains the funding arm of the Institute of Reconstructive plastic Surgery at NYU Medical Center. The Institute is a center of excellence that provides medical treatment and psychosocial services for over 1,700 patients every year, regardless of the severity of their condition, the length of treatment or the family’s ability to afford care.”

I can honestly say that we wouldn’t have been able to bring Emily to NYU it weren’t for the NFFR. I could not work full-time during Emily’s first year and handle the intensity of taping the NAM and long trips to the city each week. Emily attended NYU as a clinic patient which enabled us to afford the use of the NAM and, ultimately, the surgeries which were both a huge success. Thanks to the NFFR and the Institute of Reconstructive Plastic Surgery for this gift. The least I can do is blog about it!

NAM Gallery!

I’ve started a gallery of babies who used the NAM. Thanks to the moms who sent me pictures of their gorgeous smiling kids. They are all inspiring.

Visit the Gallery!

Photo Progression of Treatment with the NAM

The following is a progression of Emily’s progress with the NAM from birth to surgery in October 2004 when she was 5.5 months old.


Newborn……………………………….9 Days Old (pre-NAM)


…..9 days old…………………………..NAM week one


…..NAM week two………………….NAM week two


…..NAM week four………………….NAM week five


…..NAM week six………………….NAM week seven


…..NAM week seven………………….NAM week nine


…..NAM week 13………………….NAM week 16


…..NAM week 18…………………….NAM week 19


…..NAM week 20…………………….NAM week 21


…..NAM week 22…………………….NAM week 22

Post Operative Recovery Pictures


…..Recovery Day 1…………………Recovery Day 3

NAM Woes

I just added a post with pictures of Emily’s NAM – check it out. I put this post back in May for those people starting from the beginning (mostly new parents just starting out with the NAM.

Emily has been pulling out her NAM a lot since Wednesday (it’s now Saturday).At first we thought it was because she was just getting more adept at using her hands and the NAM was the most accessible “toy” she had, but now I’m wondering if it’s because it’s uncomfortable. We haven’t been to NYU since last Wednesday which is a long time to go between adjustments.
I called Dr. Grayson’s office yesterday and whoever I spoke with said she didn’t think it was the NAM not fitting right because there were no irritations and Emily wasn’t cranky. Of course right after I got off the phone with her Emily got irritable and really started rubbing her nose on her left side. She also screams and cries a lot more than usual when we put the NAM in, so I’m thinking something’s up. I’ll see what Dr. Grayson says on Tuesday. Until then, I’ve been putting a smear of Eucerin on the entire surface of the nasal stents to make them slide in easier and she’s wearing gloves (poor baby). The Eucerin seems to help.

Emily’s favorite toy!

Emily’s Tapes (pictures)

Part of the day-to-day management of the NAM involves “making” tapes. The tapes you see on Emily’s face here…

…are assembled by yours truly about every other day. I make up a bunch at once and we carry them around with us in a little baggy (like diapers, wipes, formula). She’s been going through them quickly lately since she’s been taking the NAM out. We’re not sure if she may be teething or if she’s just getting more nimble with those chubby hands.

There are two types of tapes we have to make – the kind that’s on her prolabium (the piece of skin just under her nose) and the longer tapes on her cheeks. We have to attach the tape to teeny red rubberbands (elastics). The third tape you see there labelled “base tape,” protects her cheeks from the Steri-Strips. They actually gave us something different at NYU to protect her cheeks, but it was difficult to handle and made her cheeks raw. The base tape she’s wearing is stuff I get at CVS. It’s called CVS Multi Day Use Regular Bandages (the 10 pack). I brought a box to NYU and now other parents are using it, which makes me happy.

The tapes on her cheeks keep the NAM in place, although originally they pushed her premaxilla (the segment of her upper gums where her first four teeth will come in) into place. Her premaxilla was actually out of her mouth when she was born and now it is in place and lined up with her lateral gums (the gums on either side of her mouth). Here’s what the raw materials look like before I cut up the tape and attach it to the rubberbands.

And here’s what the tapes look like after I get through with them…

It takes me about a half hour to 45 minutes to make this many tapes up and they can last anywhere from one to three days (depending on how creative she gets with her hands). So that’s your lesson on taping! WOO HOO. This can be daunting for first time NAM-ers. Send me an email if you have any questions.