Archive for August, 2005

Teething Pain?

Wednesday, August 31st, 2005


Don’t let her serene expression fool you, Emily has been a BEAR over the last two days due to (we think) teething pain, although I’ve yet to see any teeth. It started out on Sunday night – she woke up at 11 pm after going to bed as usual at 8. We could not get her back to sleep for hours! She’d scream and cry if I even approached the stairs (her room is upstairs). We finally gave her some motrin at about 1 am, at which point I went to bed and Jim put her down around 2:30 am! Last night she didn’t want to go to sleep at all by 8 pm even though we gave her Motrin way before bed time. She screamed in her crib for over 20 minutes and we took her downstairs. She continued to protest whenever we brought her near the stairs and finally we gave her Benadryl at 10 pm which worked. She slept from 11 pm to 10:30 am! Tonight she did protest, but she fell asleep in about 10 minutes.

I sent an email to Dr. Grayson, the orthodontist on the NYU team asking some specific teething questions because I wasn’t sure how a cleft palate can effect teething. He graciously answered them all and I think it’s good info for any parent so I’m posting it now.

Question: Emily is 16 months old and only has 4 teeth. That seems awfully late for so few teeth – should I be worried?

Answer: I would not worry at this point that Emily has only 4 teeth at 16 months. She is a little slow but not off the “cleft chart” for erruption of the baby teeth. Children with clefts are on the slow side of normal for tooth erruption (both the baby teeth and the adult teeth).

Question: Do you know if the teeth coming in can hurt a lot at this point if they are coming in weird or misshapen?

Answer: She is probably having the same or similar teething experience as her non-cleft peers, regardless of the unique shape of her errupting teeth. I have no significant reason to believe that the shape of the teeth affects the experience or pain level during erruption. (side note: Dr. Grayson is one of THE leading experts, so I trust his judgement on this)

Queston: Do you think that we should have her mouth x-rayed to see where her teeth are and/or should she be going to a pediatric dentist locally?

Answer: It is too early to take xrays of her mouth as she is most likely not cooperative enough for this procedure. Further, it is too early to do anything about the information that we would gain from xrays at this age. We will perform an xray survey of her mouth, if it is necessary to do so, at around age 4-5 years.

I believe that the national association of pediatric dentists suggests that the first visit with the pediatric dentist shoud be at around 12 months or shortly after the first few teeth have errupted. They want to establish a very early relationship with parents and patients, in order to provide the knowledge and skills for the prevention of decay.

I have scheduled Emily and Ana for a visit with a pediatric dentist in November (their first available appointment). Meanwhile, if Emily still seems uncomfortable tomorrow, we will take her to get her ears checked.

Meet John F.

Tuesday, August 30th, 2005


Another veteran user of the NAM, John is eight years old and was born with a wide unilateral cleft lip and palate. John has been a patient of NYU’s Institute of Reconstructive Plastic Surgery all his life. In the words of Kathy, his mom,

“Johnny is actually one of the institute’s true success stories. they feature his case around the world when they travel to teach other doctors their methods. Johnny has grown up to be a smart, very athletic, wonderful boy. We’ll be forever grateful to all the wonderful doctors at NYU who have helped him along the way.”

Looking at John’s handsome face does my heart good. I look forward to Emily’s glowing 8-year-old smile! Thanks, Kathy, for sharing John with Cleftstories.com. Please visit the NAM Gallery to see all of John’s photos (scroll WAY down).

Eye-Hand Coordination

Thursday, August 25th, 2005


Okay, so this post really isn’t about anything as on-topic and relevant as eye-hand coordination. It’s really just an excuse to show Ana and Emily drawing together. At 16 months old Emily has an amazing interest and ability to draw. She’s drawing circles and has started coloring them in. Her pediatrician didn’t even believe Jim when he said this – she said, “oh, she’s scribbling! great.” He said, “no, she’s drawing circles and coloring them in” and she apparently just nodded and smiled. But I have proof!


You see! Emily drew this picture today. She didn’t color anything in yet, but I think I took the picture away from her before she was done.


Ana as Peanut – A Self Portrait (4 years old)

Not to be outdone, Ana drew this self portrait of herself as a peanut. She drew another one of Emily as a peanut in the “baby hospital” and signed it. Thankfully for those of you reading this, the batteries in my camera died before I could snap a picture of it.

Growing up fast

Sunday, August 21st, 2005


It really struck me how big Emily is getting when I looked at this picture of her in her new sundress with all that hair. She’s munching a pretzel (a favorite food!) here and watching a Baby Einstein video. It was the only thing that would calm her down after her nap.


How cliche! She’s not just in a beanbag chair, she’s wearing sunglasses (shaped like hearts, no less)! I’m almost too ashamed of myself to post this kind of hokey parental self-indulgent crap. Almost! ha ha!

New words and other stuff

Tuesday, August 16th, 2005


Yet another picture of Emily at the table – her favorite place. She ate three wantons right before I took this shot – so that’s what has gooped up her cheeks and bib.

Emily is saying a bunch of words now including: baby, bye, hi, mama, daddy (“gaga”), thank you (“gang goo”), ow, yay, up, eeieeio (as in “Old McDonald Had a Farm…”) and I swear she said “bless you” when I sneezed today. I found an excellent web page that talks about language development in babies and young children which says that babies can learn up to one new word every two hours when they reach the age of 18 months. All these new words are great news since Emily’s speech therapist said she wanted to see Emily have at least six words at her last visit (about two weeks ago). At that time I think she had maybe 3 or 4. I can’t wait to tell her the good news during her next visit.


Emily isn’t the only one learning new things. Ana (4 years old), is learning how to read and write. Here’s a picture of one of the first words she’s ever spelled on her own, “bat.” We set up the computer to a blank document with large font and she’s in there typing ALL the time.


My girls. Gosh they’re cute.

Meet Noelle

Saturday, August 13th, 2005


Noelle is the latest baby to be added to the NAM Gallery. I think she’s about one week post op from her lip surgery in this picture – and she’s already smiling!! Noelle’s mom Catherine, and her grandmother, Laura, have both written to me. It is so nice to be able to connect with other families. I’m honored to feature Noelle’s gorgeous new smile on Cleftstories.com. Here’s a summary of Noelle, per her mom..

“Noelle Antonia was born on March 26, 2005 with an incomplete bilateral cleft lip. We did not know about her cleft from the sonograms taken at 20 weeks, and so we rushed to find the best surgeon possible in the midst of all the celebration and excitement surrounding her birth– the first grandchild on both sides! Noelle lives in NJ and loves the park, water, and sucking her thumb, which she became expert at even with the NAM. She’s a fabulously happy baby and loads of fun for her parents.”

Happy Birthday Ryan

Friday, August 12th, 2005


This is Ryan. He lives a good 6-7 hours from New York City, but his parents traveled weekly for his NAM adjustments and stayed in the city while he had his lip surgery. Ryan was born with several complications other than the cleft, all of which are related to a syndrome. He has had several surgeries for issues related to his kidneys in addition to surgery to repair his cleft. In spite of all the challenges he’s faced since he was born a year ago, his mom, Eunok, says he is always smiling at everyone and is a very happy boy. I met up with Ryan’s parents at NYU while Eunok was still pregnant and Emily was going through the molding process. They are the sweetest parents and I truly feel blessed to know them.

Meet Natasha

Thursday, August 11th, 2005


Natasha is (almost) eight years old and was born with bilateral cleft lip and palate. Thanks to her mom, Annette, I was able to post some pictures of Natasha in the NAM Gallery. I think it is extremely beneficial for those of us with babies and little ones to see older kids who have used the NAM. For those of you that have seen the NYU NAM brochure (I’d link to it, but the page appears to be down), that was little Natasha!! She’s grown into a lovely young woman. To read more about her, visit her Web site. You can also see a few more photos of her in the NAM gallery – scroll WAY down.

Eating with a Fork and Other Fun Stuff

Monday, August 8th, 2005


Emily’s favorite hobby is eating and she’s determined to master all the tools involved with this past time. Here she is enjoying a plate full of scrambled eggs. It’s the first time I saw her use a fork so well (that’s her “I’m concentrating” look). It was cute, and very impressive. I think she’s got a better grip (ha ha) on using a fork than Ana (who’s 4). She’s also got some new words which include “ow” and “quack.” So that makes five words – hi, bye, ow, quack and mama. Can you tell I follow her around with a notebook jotting these things down?

Support the National Foundation for Facial Reconstruction

Thursday, August 4th, 2005

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!