Cleft Stories

Emily – 15 months old

Testing flickr, an online photo management tool.

I’ve officially ditched the blogspot domain and moved Emily’s blog over to cleftstories.com. I intend to change the tone of the blog to incorporate more of what’s going on out there with other kids plus cleft-related news and info. This means lots of links to lots of other blogs and websites. Thanks, Nick, for talking me into getting my own domain.

For example, Rachel (born with a unilateral cleft lip and palate) is just now learning to walk - and not even one yet! Good for you, Rachel! Rachel’s story is a great example of how parental advocacy is so important in caring for a child with a cleft. Rachel’s mom, Darcy, has been trying to get her on the schedule for palate surgery for months. Thanks to her hard work and PERSISTENCE, it looks like she finally succeeded. Way to go Darcy…and don’t fret…Emily did not get her palate surgery until she was one and she’s making great progress with speech.

I got together with a few other families this past weekend. These are people who brought their babies to NYU around the same time as I brought Emily and now the babies are all one and doing great! Pictures say more than words can..

From left to right Sean (18 months), Jackie (13 months), Zachary (13 months), and Emily (15 months). Jackie was not born with a cleft – she’s Zachary’s twin sister. Michael is missing from this picture which is a total bummer…

Here’s Michael helping Emily with her cup. They played very well together.

Zachary’s giving the puzzle piece a taste, and Emily is delighted with his ingenuity.

Emily and I in Colleen’s pool. It was the perfect day for a swim.

Thanks to Colleen for hosting this party. It was so great to see the babies together and have a chance to talk about the experience with other parents who understand. I hope we make this an annual ritual.

A true multitasker, here’s Emily eating a pretzel and waving.

After a cautious start about six weeks ago, Emily has gone from taking 6-7 tentative steps at a time to walking EVERYWHERE. She loves to walk from room to room waving and saying “bye.” She’s also starting to say new words such as “da da” and “cat.” She can make “g” “d” “b” and hard “c” sounds. She still only has four teeth (at nearly 15 months old). I can’t wait until more come in. She’s making progress at night – sleeping sometimes all the way through, but still wakes up about once a night for a cuddle. She goes to sleep without a fuss now – I just lay her in her crib wide awake, tuck the blankets around her, give her a kiss and her cup with water and leave. It’s amazing. She’s sucking normally now (I think) – she can empty a cup with a valve in mere minutes, though the valve is slightly augmented. She’s really a toddler and has begun throwing tantrums when displeased. It’s so hard keeping her royal highness satisfied!

Emily has suffered through another ear infection for this Fourth of July holiday. I’d thought we were done with those since she got tubes put in during her palate surgery in April, but apparently tubes are not a cure-all for infections. We all caught a horrendous cold last week so things have been miserable in general, but Emily seemed really hard hit. She had a fever of over 102 for three days in a row so I took her to the doctor and was shocked when he said her ears were infected. So we’ve been giving her ear drops for the last couple of days and she’s finally doing better – no more fever – and a happier kid.

Here’s Emily on the mend after four days of poor sleep and crankiness.

No comment necessary.

Ana may be too big for this toy, don’t you think?

My friend Colleen has begun the countdown to surgery with her son Zachary (he’s in the NAM Gallery) who is scheduled for his palate closure on Tuesday, June 21st. Please send prayers, white light, positive thoughts and positive healing energy out into the universe for little Zachary. Every bit helps. Colleen, you are so strong. I will be thinking of you and Zachary on Tuesday and wishing you well.

Visit Zachary’s website to see his gorgeous smile for yourself and sign the guestbook.

Emily started taking steps last week. I mainly held her a couple of feet away from me then let go and she’d sort of walk/stagger/fall into my arms. This is a picture of Emily with her grandma – she let go all on her own then took about 4 steps into grandma’s arms. This was during her and Ana’s birthday party on May 21st.

A delighted Emily falls into the arms of a very proud grandma.

Here’s Ana opening up a present. She had a great time at her and Emily’s party and didn’t seem to mind sharing the spotlight with her baby sister.

A rare shot of me (blogmistress) holding Emily. Em was very over tired and over stimulated at this point in the day, so I held her while she ate her dinner.

Here are a few pictures just for fun. I can’t get over Emily’s perky little nose.

Emily picked up a bagel that Ana discarded (the bite marks are Ana’s). She then proceeded to lick, gnaw and slime the thing until I finally put her at the table and fed her.

Ana had to get into the picture, but Emily didn’t mind. Neither did he poppy seeds.

Eating a bagel that’s as big as your head is serious business.

We spent this past Sunday visiting with the Troutmans – Tanyia (mom), Jacqueline (grandmom), Sydney (baby bunny) and Kennedy (big sister). Sydney is six weeks younger than Emily (yes, there’s a big size difference) and she was also born with bilateral cleft lip and palate. Sydney wore the NAM prior to her lip repair – she was is being treated in Virginia by Dr. Craig Dufresne (surgeon) and Dr. Maull (orthodontist). But enough cleft stuff – pictures are so much more fun.

Here are the big sisters, bonding. Kennedy is a year older than Ana so of course Ana loved following her around imitating her (just like she does with her older cousin, Chloe).

Ana insisted on spraying suncreen on Kennedy. It took Kennedy five minutes to rub it all in.

A picture of the girls at the end of the visit. I couldn’t get a good shot of both of them with their eyes open.

The Troutmans drove for hours for this visit and it was so exciting to see them. We met through Cleftadvocate.org (Tanyia found Emily’s picture). I can’t wait to get together again. Ana’s already asking if Kennedy is coming to her birthday party next weekend. I wish we weren’t seperated by five long hours of driving.