Cleft Stories

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.

An article published today in the NY Times titled, Cleft Palate Practice, Pre-Surgery, talks about a project being headed up by Dr. Court Cutting, NYU’s renowned cleft lip/palate surgeon (and Emily’s surgeon too!).

Dr. Cutting manages a state-of-the art computer animation lab where he has developed, with the help of 3-D animators, a CD-ROM simulation of the surgical techniques for repairing cleft lip and cleft palate. , This learning tutorial is being used to help train surgical residents studying at NYU and elsewhere. It is also being used to help teach the cleft lip and palate repair techniques to regional doctors in third world countries. The CD-ROM was funded by the Smile Train, which deserves its own link. You’ll need a username and password to view the article, but registration on NYTimes.com is free.

Here’s the queen holding her cup. This is such a a huge accomplishment for Emily since we basically held her bottle for the entire first year of her life (a bottle we had to squeeze so she’d get the milk). This is the first time she’s really had to work on feeding herself, and she’s doing a great job. She’ll still refuse to hold her own cup, but she’s getting more independent with it. She’s started having tantrums which are so sad, but she really is learning. She was throwing the cup down if I didn’t hold it, so what I started doing is leaving it in front of her when she signs “more” and walking out of the room. She’ll inevitably pick it up on her own and start drinking from it if there was no one to hold it for her.

A nice shot of actual lip closure around the spout (trust me on that). Can you see the dimple near her mouth in this picture? That means she’s actually getting suction. She can empty a full cup – with the valve slightly augmented – in about a half hour (she puts the cup down and picks it up a lot during this time).

Ana insisted on demonstrating that she, too, can hold her own cup.

She loves to stick her tongue out, especially if she’s looking in the mirror. I wish I was as easily entertained.

Emily’s gone seven full days without her soft sipp bottle and I think it’s safe to say that we’re rid of the thing forever. She’s now drinking from the Munchkin Healthflow Big Kid Sippy, even though she’s still a little kid. The spout is much wider than a normal sippy cup, and since Emily can already drink from a regular paper cup, she had no trouble drinking from it. In fact, I think it’s easier then a smaller sippy spout which requires she purse her lips more.

We give her juice in the Healthflow with a valve, but Jim widened the valve so that she doesn’t need as much suction to get the juice out. Still, she needs suction so that means….(drumroll)…she’s got suction!! She can’t get milk out of this cup with the valve in, I guess because milk is thicker. So we take the valve out for the milk and she does fine. She was on a milk strike over the last couple of days – would only accept the juice from the cup, but once we put milk in the Healthflow (instead of the Gerber cup), she started drinking it again.

She’s still not truly walking. She can take 6-7 steps at a time, but she’s extremely cautious and will only do it if I’m sitting close to her on the floor. She’s started standing up and sitting down by herself though, which is a great sign. She’ll just do that over and over again and giggle.

Here’s a picture of Em from yesterday. That little outfit is supposed to snap at the bottom, but she’s too chubby and it kept unsnapping. Ah well. It’s still cute.

Well, we finally did it. We got rid of the soft sipp post op feeder for good. Emily had been drinking milk from these bottles since her lip surgery in October 2004. She initially refused them and we’d had to re-hospitalize her for dehydration. We force fed her for about two days, which was agony, and then she just accepted them.

After the three week post-op period was over (from lip surgery), she continued to use them and absolutely refused her Pigeon bottles. We didn’t have the heart to force feed her again so we stuck with the soft sipps until her palate surgery last month. We’d ordered about eight more of the bottles back in October and we were still using them as of YESTERDAY. But they had begun to fall apart. They are not really for long term use.

This is such big news because it really is huge step for Emily towards normalcy. The soft sipp bottles were always a reminder that something was wrong. People always stared at them when we used them. They also only hold about 3.5 ounces and we were forever refilling them. What’s she drinking from now? She’s using a Gerber Soft Starter cup without the valve now. I think she is able to get some suction, but when we put the valve in she gets extremely frustrated. Overall, the transition to the cup was surprisingly painless. We’d been using the Gerber cups at meal times anyway (for juice) and so she was already familiar with it. This past Saturday she wanted her soft sipp and got pretty cranky, but after her second nap I put her at the table and gave her some gouda cheese, which makes her very thirsty. She glugged the milk from the cup and we haven’t looked back since! I’m so proud of her.