Stories about kids with cleft lip and palate, my Emily, nasoalveolar molding and more from an obsessed mom.
I want to veer off topic to express my sorrow for those many, many families who have suffered due to the recent South Asia earthquake. I have donated what I can afford and compiled the following list of resources for those of you that have the means to donate. I am sending thoughts of healing and well wishes to all families effected by this tragedy.
Please Help The Tsunami Victims
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Emily’s waxing thoughtful in this shot of her right before dinner. She ate a ton of cheerios and we were very happy until she choked on one and threw everything up. Oh well. She seemed fine, but Jim and I got a good scare.
We spent the day at Aunt Amy’s house and Emily had a blast.
Emily did very well eating sweet potatoes at Amy’s house. Maybe it was the festive atmostphere or the fact that I was more relaxed when feeding her, but she ate like 9 spoons of food and drank lots of water from her cup.
It’s Christmas morning and Ana is still asleep, so Emily took the opportunity to swipe Ana’s Sponge Bob toy for a while. Ana relieved her of the toy when she woke up an hour later.
We spent all day at Amy’s so we had to improvise with naptime. Here’s a shot of Emily fast asleep in Amy’s walk-in closet (she’s the bit of pink between the white pillows). We put a blanket down, some pillows and set up her musical crib toy and she did just fine.
We celebrate both Christmas and Chanukah here at the Dooley household. And here’s the picture I chose for our holiday Chanukmas cards! Happy Holidays to all!!
We’ve been busy the last couple of weeks with Emily’s second ear infection (Ana got sick with an upper respiratory infection too), teaching Emily how to get to sleep and trying to get this kid to eat from a spoon. Shelley, the team coordinator at NYU, informed me that two ear infection means she’s got a history now and that she will probably get tubes put in her ears during her palate surgery in April. If she gets another infection before then, she may need the tubes sooner. She’ll have a consultation with Dr. Bernstein, the team ENT, in a couple of months to assess her hearing. Emily is also back on a nebulizer for wheezing due to her latest cold (which also caused the ear infection). My concern with the nebulizer is that Emily may have asthma, something we were worried about when she was just 10 weeks old and was nearly hospitalized for bronchiolitis. The nebulizer saved her from a trip to the hospital then, but she needed to be on it for three full weeks.
We’ve been signing with Emily since she was about five months old. She looks like she’s trying to sign some things back to us, but it’s hard to tell. This picture shows her doing something she does a lot – opening and closing her hands when she’s playing and excited. It’s sort of close to the sign for “play” which is to shake both hands back and forth while closing the middle three fingers.
Something we’re not making much progress on is getting Emily to take food from a spoon. Here’s a classic reaction from Em, shutting her lips tight and getting that resolved look in her eye until I move the spoon away. She enjoys self-feeding though – she’ll eat cheerios and other table foods such as teething cookies, bread, etc.
She scored a cookie and she’s happy. Still, it’s very frustrating trying to get Emily to eat and we’re working with a speech therapist from Early Intervention to help her get comfortable with her mouth again. She seems particularly sensitive to anything touching her upper gums (understandably), though lately she has been letting me massage her scar and even gently rub the upper gums. I hope that the more I touch the area and massage it, the more she’ll relax about things being near her lip and that may translate into her ultimately accepting a spoon.
The sleep situation is much much better. Emily can now fall asleep within minutes after being put down in her crib. We no longer have to rock her for a half hour then put her down completely unconcious only to repeat the procedure 4x a night. She is still waking up about once a night to eat a couple of ounces, but now the nightly visits take about 10 minutes (instead of 1 – 2 hours). Her naps are better too (for the most part) she is averaging one long nap and 1-2 short naps per day.
Dear Shelley,
Since I know you check my blog almost every day, I wanted to give you a shout out and say thanks for being such a great team coordinator.
Here’s a picture of me with my Aunt Amy who I love to snuggle with.
I know you’ll be proud to hear that I am now saying ma ma ma on a regular basis. I’m also making some other cute sounds that I’m probably not supposed to (baaaaaaa…daaaaa….) I miss you and can’t wait to visit NYU again so I can drool all over you.
Love,
Emily
Emily has astounded us (as usual) with her adapatability in all manners of everything (except, perhaps, with the transition back to her bottle which she still refuses). Since we started teaching Emily to fall asleep by herself only three days ago (sounds much better than “letting her cry it out”) her sleep has improved tremendously. So here are her firsts…
1) For the first time EVER Emily fell asleep all alone in her crib yesterday and it wasn’t just once, it was for both naps and at bedtime. She only cried about 10 minutes for naps and more like a half hour at bedtime. She then woke up at 2:30 am and we fed her a few ounces and put her back down. She fell asleep in a half hour (we checked in with her once) again, all on her own.
2) For the first time EVER Emily woke up and went back to sleep (this morning at 6:00 am). She cried for about 2 seconds and then was silent until 7:30.
3) And unrelated to sleep but pretty cool, Emily just started holding things with both hands playing with them for extended periods of time (while sitting on her own) – a sign that she may be ready to hold her own cup and begin to self feed.
That’s my big girl!!!!
Here’s an artistic shot of Emily in a tutu. She was fascinated with it – I think it was the scratchy material. By the way, still not sure about the white tongue. The doctor says it’s not thrush (it’s not bleeding or sore). We’re thinking maybe it’s like that because she doesn’t have a palate to scrub her tongue clean, so we’ve begun cleaning her tongue with a wash cloth and it’s gotten a bit better.
From left to right, Grandma Janne, Emily, Chloe (Emily’s cousin) and Ana
Grandma is explaining to 4-year-old Chloe that Emily doesn’t have a palate (note she’s pointing to her top lip). Emily is demonstrating this by arching her back and opening her mouth to grin up at Chloe and Ana (well her mouth isn’t open in this shot but trust me on that).
Well, over the past month Emily’s sleep habits have grown progressively worse. She needed to be rocked to sleep each and every time whether it was for a nap or for bedtime. She would occasionally fall asleep in the carseat on the road, but inevitably woke up the second the car stopped. It also began taking longer and longer to put her down (she’d stop herself from falling asleep or wake up as soon as her body hit the crib) AND she was waking up more often during the night. I started having anxiety attacks at bedtime and I walking into walls and hallucinating. Okay, maybe I wasn’t hallucinating but I did some research about the Ferber method and bought his book Solving Your Child’s Sleep Problems and we started two days ago.
Oh, the agony. In short, Ferber says to break your child of the associations she needs to help her sleep (like rocking and eating) and teach her to fall asleep in her crib on her own. That means putting her down in her crib while she’s tired, but awake, and letting her cry. We are allowed to go in and visit in increments of 5, 10 and 15 minutes (these increments get progressively longer each day). Eventually by day 3 or 4 you should see marked improvements.
Last night was the second night and we saw a marked improvement. She slept from 7:15 to 5:15 am! She cried for 40 minutes though when we put her down. We go in there and sing to her and rub her belly quite frequently and she’s fallen asleep in her crib (generally with Jim rubbing her belly, but we won’t tell Ferber that). We are not rocking her for her naps either, which I think is expiditing the process. Still, it is heart wrenching for us knowing all she’s been through. I do think this will help us in the long run, particularly when it’s time for Palate surgery in April. If she’s a good sleeper by then, it can only help her recovery.
Emily woke up at 5:15 am this morning and fell asleep on me for about 30 minutes starting at around 6:45 (again, don’t tell Dr. Ferber!)