Stories about kids with cleft lip and palate, my Emily, nasoalveolar molding and more from an obsessed mom.
Emily performed at her school variety show yesterday. The video in my last post didn’t have great sound quality – you couldn’t really hear her. This one is much better. I’m so proud of her!
Ana was perfect as well.
I’m so proud of both of them. Everyone was amazed. I wish I hadn’t turned off the camera when Emily was done because the cheering was way loud. There were about 300 people in the room.
Emily has grown into a very good singer/performer. She takes after her dad, who is a drummer/musician and her big sister Ana, who has just about the most amazing singing voice I’ve ever heard. I, personally, don’t have any musical ability whatsoever, so I’m the odd one out in this family. I still have bragging rights though, which is why I’m posting this video!
This is Emily rehearsing for her school’s variety show on April 10th. I’m hoping to get a better quality video of her at the show, but this will have to do. That’s her dad playing drums in the background.
And speaking of bragging rights, here’s Ana singing her variety show song – The Rose…
What good is a mommy blog if I can’t occasionally post videos of my children singing?
Emily went into NYU on Monday for a check up to see how she’s progressing. Her top teeth moved another millimeter forward, so she’s now officially got a (slight) overbite! We’re very excited. Emily can put the gear on all by herself now and she proudly showed the staff at NYU. It looks like she’ll be all done with the head gear at some point in May and that will be a major relief. We also officially got a surgery date for her bone graft – July 7th. I’m dreading it, of course. We’ll just take it day by day, I guess. Here’s a few updated pictures of her and Ana.
Emily got some make up for Christmas, which I’m starting to regret because she keeps coming downstairs fully made up in varying shades of pink. She likes to slop it all over her eyes even though I keep telling her to keep it away from her eyes (it’s nontoxic kids’ make up so at least there’s that).
Here’s a shot of her latest new look.
That right there is her “I’m a supermodel” face.
She’s doing pretty good with the head gear, now that we’re more than six weeks into it. I wish she would wear it more often – we probably average a little less than 14 hours a day because we are able to get her to put it on fairly early at night and she sleeps with it on without any problems. She’s decided she doesn’t want to wear it to school anymore and, really, who can blame her? She can actually put it on all by herself now, even though it now requires six rubberbands (three on each side).
She had an appointment at NYU a couple of weeks ago and Dr. Grayson (her orthodontist) said the width of her palate had widened 4 mm’s and her jaw has come forward nearly 2 mm’s. Though this sounds like a small amount of movement, it is very good early progress. I can actually see a big difference in her teeth, particularly in the two front teeth which used to be much closer together (now they are so far apart it looks like she’s missing her to front teeth). She’s an expert with the plate now and can speak completely normally and eat comfortably. She does hate the head gear and we’re all looking forward to the end of that!
I’ll post another update after her next visit at NYU which is scheduled for the end of January.
Happy Thanksgiving Everyone! Emily learned this song from her wonderful music teacher at her school.
We ARE thankful every day!
I have been meaning to write this post for the last couple of weeks, ever since our last visit to NYU which was on October 13th. Since then, Halloween has come and gone (which is a great opportunity to show a picture of Emily in her Halloween costume):
Okay, now that that’s over. So Emily was seen for all of five minutes by Dr. Cutting (her surgeon) and Dr. Grayson (her orthodontist) on the 13th. At that time Dr. Cutting confirmed she will need a bone graft this coming June, when she’s 7.
FULL SCREECHING STOP.
Okay, so maybe I convinced myself that Emily wouldn’t need another surgery until she was 8 or 9. Or maybe I just didn’t realize that Emily was approaching the window of surgery (ages 6-8 is around the time kids get a bone graft for a cleft), but whatever it was I was telling myself, I finally had to face reality. It’s coming, and it’s coming fast.
And if that’s not enough, why not bring on some elaborate head gear while we’re at it? So, in preparation for the bone graft (at least, to my understanding) Emily will need to start the head gear process I mentioned back in 2009. She went back to the city today with her dad and got a mold of her palate. They’ll take that mold and use it to create a palate expander which will be glued into her mouth for the next six months. She gets that placed in two weeks (11/22 is our appointment). She’ll also need to wear anterior pull headgear for 14 hours a day – that’s pretty much all the time, except for when she’s in school. Here’s what that looks like:
Emily is a trooper and even though she’s worried (she’s said as much) I know she’ll do well with the mask and that six months will pass quickly. That’s what I’m worried about actually, because surgery is terrifying and recovery means soft foods and other things (like a splint in her mouth for two months). She pretty much loses an entire summer of her life. An entire summer! That’s an eternity when you’re seven and you love to swim. My heart is already breaking, but I’m also glad that we’re getting it over with while she’s still so young. I’ll write with an update after her next visit.
Hey, we won a prize!
I’m not sure how we got on this list, but it’s pretty cool to be recognized. Click on the badge to see a list of other top cleft blogs!! I see we’re in good company – a lot of our friends are on this list as well.
*taking a bow*
Well folks, TODAY’S THE DAY! Emily and Ana started school and are now happily ensconced in academia (or so I imagine, as I sit here in the beautiful silence of my home office). I wasn’t able to get very good pictures this morning – the bus showed up at our house (this is a new thing for this year – woo hoo!). I only had time to snap a couple of shots before they were gone. I’ll try to get a better one of them tomorrow.
Emily was seen by Dr. Grayson on Friday. It had been a year and a half since our last visit..or maybe about a year, but in any case it was a while. Here’s a couple of shots of her in the chair:
I’ve seen Emily in dentist and orthodontist chairs so much in her short life that a trip to the dentist doesn’t produce any anxiety for me (or Emily, for that matter) at all. Dr. Grayson said he wanted us to get an iCat scan for Emily which would enable him to see a three dimensional image of her teeth. We were lucky enough to get an appointment the same day with an orthodontist who had an iCat machine right in his office, which was about an hour north of the city in Westchester, and en route home for us. Still, it made for a long day. The iCat was amazing though! I don’t have images of Emily’s iCat (and I’m not sure how I feel about posting medical photos of her on the blog), but here’s a sample of what iCat pictures look like:
The scan was taken in a machine that looks like this – and seriously took about 4 minutes to complete.
Emily has always had the ability to sit very still for x-rays and photos and this time was no different. The i-Cat allows the orthodontist (in this case, Dr. Grayson), to pivot the image and look at her teeth from the side, the bottom, the top – whatever. It was an amazing and unnerving thing to behold my child’s skull. I also now have a very strong appreciation for how healthy the above patient’s teeth are compared to Emily’s. Well, healthy may not be the correct word – “normal” maybe is perhaps a more appropriate term.
We have another visit scheduled at NYU on 10/6 to review the i-Cat results with Dr. Grayson and Dr. Cutting (Emily’s surgeon). At that point we’ll learn if/when she’s starting her orthodontia (see this post for details on that) and we’ll hopefully get the definitive word on whether or not she’ll need a bone graft on her right side.
In a word, I am overwhelmed. This phase of Emily’s treatment was always inevitable. I know that. But it’s all happening so fast. I hate to see her going through all of this now. In many ways, it was easier when she was a baby and didn’t know what surgery was or understand what it means to wear an appliance in her mouth.
Back then, she didn’t know she was different from everyone else, but now we’re in the thick of it – first grade. I find myself wishing she could just be a kid like every other kid. What 6-year-old knows their orthodontist by name? But I guess we just have to take what life gives us and try to grow from it. I think I’ll be updating the blog more now that we’ve hit this phase of Emily’s life (and treatment).
Of course I need to end with one happy kid shot though!
I can’t believe I haven’t posted since MAY! Emily has grown a lot this summer, as evidenced by the fact that none of her shoes fit her anymore. We took her to the dentist yesterday and she has one tiny cavity. Well, it’s not yet a cavity, it’s like a pre-cavity, cavity. The dentist called it a “pit” – so we have to get that filled, but I accidentally scheduled her appointment on 9/10 which is the same day as her next appointment at NYU. Oops.
I’m in the market for a new insurance provider (yet again). It seems like health insurance plans have gotten more expensive, but cover less stuff, than they did five years ago when Emily was in the midst of all her treatment and surgery. I’m looking at a plan by Blue Cross/Blue Shield which has out of network benefits but costs about $900 – $1400/month (it depends on whether or not I’ll include Em’s dad on the plan) and then we’d still have to meet like a 6K deductible for any out of network benefits. For us, NYU is out of network so that means we’ll be paying thousands before we see any reimbursement for anything at all, whether that’s orthodontia (which she’s due to start this year) or surgery (which will hopefully won’t happen until she’s closer to 9).
I guess this is the next part of our journey – insurance woes. As a self-employed person, I am really feeling the pain of poor health insurance coverage. Every single thing this family needs is an expense that comes out of pocket because we can only afford high deductible plans. I just got glasses (for example) for over $500. The girls both had dental checkups yesterday which cost close to $300 (we may get some of that back). It’s a real problem which I feel sort of powerless to fix.
(deep sigh) well, enough griping. Here are some recent pictures of Em from this summer. She’s getting so big!! They both are (another sigh)
I have so many more photos from the summer and I hope to get on in a week or so and post a few more. Soon I’ll be posting photos of my very own first and fourth graders! Time does fly…