Testing flickr, an online photo management tool.
Introducing Cleft Stories…
July 30, 2005 By 2 Comments
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.
Audiology Update
July 29, 2005 By 1 Comment
Emily had a follow-up visit with a local audiologist this past week and the news was good. He said her hearing was perfect, and that her ear canals were three times wider than when we first took her in (about six weeks before she got the tubes put in). At that time he told us that she could not hear well enough to learn to talk. This is a scary thing to hear from an audiologist, but we knew it was only due to fluid and the problem would correct itself when she got the tubes (which it did). Plus the folks at NYU did not want Emily to start with speech until her palate was fixed so she would not develop bad habits. Now she’s making many normal sounds and saying a few words (“hi” and “bye” and “mama”). She’s doing so well that her speech therapist thinks that she doesn’t need therapy anymore! She’s going to come in once a month to follow her progress and reevaluate her again as she begins talking more.
She’s still a very quiet baby and only babbles when she’s around us (Me, Jim and Ana). She seems quite happy to watch the world quietly and, while she’s friendly, she does not open up to people that she doesn’t know. I guess it’s not second nature for her to use language because her hearing was so poor for her entire first year of life. I never realized how important that window of time was for language. I’m just relieved that she’s babbling now and starting to form words. She’s a silent talker – tends to gesture and use some signs to tell us what she wants. I’m looking forward to hearing more words, but I won’t push her.
Well, I had a little fun with all that baby hair. What else am I supposed to do with it??
NYU Reunion
July 25, 2005 By 1 Comment
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.
Milestones
July 10, 2005 By 3 Comments
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!
Holiday Blues
July 4, 2005 By 1 Comment
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?