Cleft Stories

Emily refuses to let me feed her with a spoon and simply delights in feeding herself straight from the babyfood jar. We were about to phase out the baby food altogether, but she gets so excited when she sees the jars that we don’t have the heart. We can’t even pass by them in the supermarket without her bouncing around and trying to grab them. At least we know she’s getting her veggies.

You can stop wondering if she stuck her tongue in the jar. I’ll tell you right now. She did.

This is the last thing I saw before Emily grabbed the camera and tried to look at me through the lense.

It was much more enjoyable to write about Emily’s first haircut. Here we are just two weeks into the school season and Emily woke up with her first stomach bug (Ana goes to preschool three days a week and probably brought the bug home). Emily threw up for approximately six hours from 5:40 am to about 1 pm – off and on, of course. In between she looked like that (see miserably pale child on couch, above). She then had an afternoon nap and woke up ravenously hungry. I fed her (against my better judgement) and after that she was fine. Well, a bit feverish, but much better and drinking a lot.

Another shot of her on the couch – this time she’s got a towel over her because she threw up on all the blankets.

Emily was doing much better by bed time. Here she is on my lap and she’s her old smiley self. I hope she sleeps well tonight! Ana luckily seems to have dodged this bullet…keeping fingers crossed…

Emily learned to give kisses today. I thought she was saying “mom” at first, but it turned out she was trying to pucker and saying “mmmmmm-aaaaaaaa!” So now she’s kissing everything – her cup, my knee, her favorite stuffed animal (currently, a bunny). It’s so cute, I can’t even stand it.

Emily likes to feed herself so I often grab an extra spoon to help her along. She always grabs the extra spoon though. Such a model of efficiency. My Emily.

It is not currently understood what causes cleft lip and palate, although it is suspected to be a mixture of things including genetics, environmental influences and lifestyle factors. The U.S. Centers for Disease Control and Prevention are conducting a National Birth Defects Prevention Study which is a collasal undertaking that includes nine U.S. states, thousands of babies and will span up to 10 or more years. It is the largest single study of its kind and promises to give us new information about multiple birth defects, including cleft lip and palate.

The following states are participating in this study:
Arkansas
California
Georgia
Iowa
Massachusetts
New York
North Carolina
Texas
Utah

We were contacted by the CDC to participate in this study and have completed the first half – the questionnaire. We will also be collecting cheek samples from everyone in the house and sending them out for analysis. I hope this means that Emily and Ana will not ever have to worry about having a child with a cleft, or any other birth defect for that matter. I had originally posted a link that people could follow to contact the CDC about this study. However, the CDC has since notified me that people cannot volunteer to be in this study as I’d originally thought, but must be contacted by the CDC to participate. Ah well – if you hear from them, give them a break and participate. It is for the greater good, after all.

You may have noticed some straggly hairs getting into Emily’s eyes in prior posts. Her hair is actually quite thick and now it’s getting long. She pulls hairclips and rubberbands right out, so we decided it was time for a trim.

Voila! Here’s Emily with her very first haircut, courtesy of me and my largish scissors which are completely inappropriate for the job of cutting hair. So she looks a bit like a vulcan, but we think it suits her.


Can you guess who this is? It’s me! At about 6 months old (according to my mother), but judging from the hair I’m probably closer to a year old. This picture demonstrates Emily’s resemblance to me and also the fact that bad haircuts are a family tradition.

My heart goes out to all the people who have been affected by Hurricane Katrina and the aftermath of flooding in New Orleans. The least I can do is post some links to the various relief organizations where you can donate food, money, clothing and time.

Red Cross
Moveon.org
Hurricane Housing.org
America’s Second Harvest Food Bank Network
Salvation Army

We’ve kept Emily quite busy for the past few days (here she is singing Row Row Row Your Boat with grandma) and as a result she’s sleeping almost normally again. I keep checking for teeth, but haven’t seen any pop through yet. She had a rash all over her body on Saturday, so perhaps she had a virus and that’s what was keeping her up. She is still complaining when we put her to bed, but she generally quiets down by the time I get to the bottom of the stairs. I wish I spoke baby so she could just tell me what’s wrong.

We drove to New Jersey yesterday to visit my parents (a two hour ride) and Emily was quite tired by 6 pm or so. She’s sitting at the table drawing in this picture, but I can tell she’s exhausted. She only had a twenty minute nap or so. We got home around 10 pm and she is still sleeping as I type this (it’s 9:30 am). I think I’ll go wake the sleeping princess now so her schedule isn’t too screwed up.