Here’s the quick medical update: Emily has lost all four of her top teeth (I don’t know if she actually had four, but anyway, they are all missing). She is still wearing the post-surgical retainer that she was given after her surgical splint came off in September. Luckily she doesn’t need to wear it at school anymore, but otherwise it’s in all the time except for dinner. We got the depressing news from Dr. Grayson that she’ll need to wear a retainer (among other things – as yet to be determined) until adulthood. You heard me right. Emily was initially pretty upset about this but then I pointed out that many kids wear braces and retainers throughout their child hood and way into their teenage years and she was just starting a little sooner than everyone else.

We’re still not sure what Emily’s prognosis will be in terms of surgery. Her most recent visit at NYU was inconclusive in terms of whether the bone graft actually worked 100%, or at all and this is what’s going to determine if she needs more surgery. She’s going for a cleft team visit in April where she’ll meet with her surgeon and orthodontist at the same time, and also get a full orthodontic evaluation (separate from the team visit). So that will be a long day at the hospital, but hopefully we’ll come out of it with an actionable treatment plan.

Now for fun stuff! Emily just started Karate a few weeks ago and she absolutely loves it. Here’s a shot of her in her brand new gi.

My friend Tanyia’s daughter Sydney (age 7, born with complete bilateral cleft lip/palate) is having a bone graft in about a week. Sydney’s sister Kennedy (age 11) is getting surgery on her foot the very next day. Needless to say, Tanyia is struggling with exorbitant medical bills due to a crappy, high deductible insurance policy. I can’t imagine having to deal with surgery for both my kids just ten days before Christmas. Tanyia said she can’t even think of presents right now, she has to worry about gas, food and copayments.

I created a fundraising page for Tanyia to try and raise some much needed funds so she can afford groceries, medical expenses, travel expenses and all the other mounting expenses involved with getting two children safely through surgery.

I know a lot of people need help this time of year, but Tanyia is my friend and she needs me. She needs you too – if you can give anything (anything at all), please do so. Even if you can’t give anything, please help spread the word. Post to Twitter, Facebook and your blog (if you have one). Thank you and happy holidays!

I want to update the blog with a zillion things but really should be working right now. What I will do is let you all know that Emily is doing very well since her surgery in July. She got her splint out two days before school and was a bit frail and irritable at that point. She was down a few pounds and was really alarmingly thin (at least in my opinion). She was having issues eating regular food because she’d been on the soft food/liquid diet for so long. She’d even admitted to avoiding food and spitting it out in the sink because she was afraid of choking. Needless to say, I freaked out and took her to the doctor. At that point she had gone without the splint for about a week and was still getting used to real food.

Her doctor said she’d likely improve over the coming weeks -and he was right! She’s been eating more and more since then and has gained all the weight she lost plus more! She’s nearly 50 pounds now, which is saying a lot for a kid who couldn’t seem to get above 48 pounds for a year. She’s also grown taller and, my goodness, she’s such a big girl. I will DEFINITELY post again soon and try to keep the blog updated once a week. Emily is very excited to go trick or treating tonight, I will have costume pics soon. Until then, here’s a cute shot to leave you with! This is Emily hula hooping at her school last month.

Emily is only 7 and Ana is 10, and I had some reservations about letting them watch the show at first. There are some uncomfortably sexy scenes, plus one of the main characters gets pregnant in the first season (she’s the head cheerleader) and I wasn’t sure if it was too much too soon. But the show is also extremely musical (obviously) as are my girls and I really just wanted to see the cheesy performances, of which there are a lot. I admit it – I LOVE all that singing and dancing.

The show surprised me with its depth of story and characters though – and I found myself being very grateful that it wasn’t…well…Disney and Nickelodeon where things sort of happen, and problems sort of arise but everyone is essentially happy and perfect and it all works out in the end. Sometimes in Glee, things don’t work out in the end and some of the characters are battling very real issues about acceptance of themselves (and acceptance in society as a whole).

Even the main character, who is a self-absorbed extremely talented singer named Rachel, is adorable but completely insecure because she’s not classically pretty. She has a large nose – her most defining feature. In one of the later episodes in the second season, she breaks her nose and her doctor says that is the perfect opportunity for her to have a nose job. The rest of the kids in the Glee Club try to convince Rachel that she wouldn’t be Rachel without her nose and she’s beautiful the way she is. At one point, even the former head cheerleader (the girl who was pregnant in the first season) confesses to feeling insecure and she’s clearly gorgeous.

This is really big stuff for a kid born with a cleft. I mean, it’s huge. She can hear me say that no one is completely happy with how they look, and I’ve always hated my nose, etc. etc. but to see the characters she loves struggling with the issue and staring at themselves in the mirror and talking about how they want to change something is an amazing opportunity. It lets me bring up the subject with her in a safe, unselfconscious way and also gives me different ideas on how to talk to Emily. For example, I asked her, “Do you think Rachel should change her nose, Emily?” And Emily’s response…”No, mommy! Rachel is pretty!” And so I said, “well that’s how I feel about your nose.”

Here’s the video that Rachel (the dark haired girl) and Quinn sing from this episode which is, by the way, titled “Born This Way” (and, yes, the cast does perform this song at the end!)

We all went back to NYU yesterday for Emily’s first post-op visit with Dr. Grayson. The purpose was to check the surgical splint to make sure it was properly in place, and hopefully get cleared for soft foods.

Unfortunately, Dr. Grayson wants to keep Emily on a liquid/blended diet for another week. He saw a couple of spots where the surgical site was still bleeding (just a spot of blood – but it indicates that it’s not 100% healed yet).

The danger with eating anything thicker than a shake at this point is that food particles might get caught in the splint and infect the surgical area, causing the bone graft to fail. So, a very disappointed Emily (and me!) headed out of the first appointment and up to 2nd Avenue where there’s a Baskin Robbins. I bought her a big cup of rainbow sherbert and Ana got some mint chocolate chip. We walked around the city a bit but Ana and Emily quickly got tired so we headed home.

I’d given Emily a bowl of chicken with stars soup the day before the appointment (she doesn’t eat the chicken) – thinking it was fine since she’d be moving to soft foods the next day, but that’s definitely off limits unless I blend it, so now we’re back to her three staples – yogurt, jello and milk. Jim blended scrambled eggs yesterday into a fine creamy concoction and she ate some of that, but was very resistant (it looked like bright yellow pie filling or something). But I’m happy to say she ate an entire bowl of Maple & Brown Sugar oatmeal even though I’d blended it to a fine powder and it came out kind of like a paste.

I have decided to go on a liquid diet with Emily until next week so she doesn’t feel like she’s all alone in this. I went to the supermarket and bought some stuff for both of us yesterday (chocolate pudding for me!) and a lot more soup. I’m hoping if we sit down to eat the exact same thing together, she’ll be less resistant to trying new things. I’m also constantly reminding her that this is temporary and we’ll get through it, but it’s important for her recovery.

Well, it’s day five and you can see by the photo she’s still pretty swollen. Things are getting back to normal in many ways though – wow, what a difference a week makes. I’m back to work today and it’s nice to feel somewhat normal again. I also got a 12 mile ride on my bike and that felt great.

She’s completely off the pain meds for two whole days and today is the last day of antibiotics. She even seems to be getting her appetite back, which is kind of heart breaking because she can’t eat anything yet. She’s still living on yogurt, milk and…um…oh yeah, Jello. I got her to eat some Miso soup for dinner today and that amounted to like 12 calories. She won’t drink any protein shakes (or any shakes or smoothies of any kind). She’s so stubborn! This is the kid we had to take back to the hospital when she was six months old because she refused to eat from the post-op bottle.

But, she did just have some ice cream and then asked for Sherbert, but it would be nice if she ate something with some sort of nutritional value. I dearly hope she’s allowed to have soft food on Thursday (that’s when she goes back to NYU for her follow-up visit) and I hope that includes some fruit – like blueberries. I want to take both girls blueberry picking on Friday but only if Emily can eat them!

Emily actually took a two hour nap today and I’ve yelled at her more than once to stop climbing, running, jumping and bouncing. I think this kid is ready for her first visit from a friend (tentatively scheduled for Friday) as long as she feels okay about the bruises and swelling.

This morning started out with Emily waking up before all of us. I found her downstairs by herself (she’s back in her own bed) and singing while playing with Barbies. When she saw me she said, “I don’t have any pain this morning, mommy! I feel like myself!” She hasn’t had Tylenol since 7:30 a.m. yesterday.

She’s a lot less swollen too – though still quite puffy. But she gave me permission to take pictures AND post them to the blog. So – here’s the first post op photo.

Yes, that’s a smile! As you can see, her cheeks are very bruised and I think that’s from whatever instrument they used to keep her mouth open during the surgery. I know she’s still quite swollen, but this is like a thousand times better than Tuesday.

Back to her old silly self. As you can see from this shot, her lip is quite swollen too, but she’s got a lot more mobility than she did even yesterday (it was difficult to understand her when she was at her most swollen on Tuesday). Here’s another silly shot. I would’ve preferred to edit myself out of these pictures, but Emily insisted that if I posted her, I had to post myself too.

And, here’s a surprise for you – Emily let me record her singing a song! She didn’t want me to record her face though – so she had her hand “lip sync” while she sang.

You can hear how her voice is muffled a bit – that’s from the swelling. As I type this, Emily is dancing around the living room (without any hopping or too much hip shaking, at my insistence). This is a child who had hip surgery four days ago! Hooray!!

It’s been a busy few weeks since my last post. Well, I guess it’s been over a month. As we approach surgery, I want (plan) to update the blog more frequently with Emily’s progress. Here’s what’s been going on since my last official medical update in March.

May 24th – Emily got the palate expander removed and no longer needs to wear the anterior pull headgear device at night. And good riddance I say! This was an event that was greatly anticipated by Emily, unfortunately for her, it was very painful to have the device removed. It was also a bit of a let down because she still needs to wear a retainer in her mouth 24 hours a day until the surgery date. This will prevent things from moving back after all that stretching and pulling we’ve been doing over the last six months. Emily’s mouth bled for a day or so after the palate expander was removed and she was, quite frankly, a little depressed. I think it really hit home that she was going through something “not normal” and she really felt sorry for herself for a couple of days. “Why do I have a cleft? I don’t want a cleft!” was her general feeling. It breaks my heart to hear her say things like this, but I didn’t want to water it down for her. I let her cry on my shoulder and told her I agreed it wasn’t fair and I’m sorry her mouth hurt. Then we went and did something fun and in a couple of days she was back to her old self (and completely comfortable with the retainer -which I keep calling a “plate” and she keeps correcting me).

May 31st – Emily visited her local pediatric dentist to check for cavities – a mandatory request from the folks at NYU. She had none and walked away with clean teeth and a skip in her step (or maybe I was the one skipping – I was very relieved she wouldn’t need cavities filled on top of everything else she’s going through). I may have skipped too soon though, read on…

June 6th – We all schlepped back to NYU so they could double check her for cavities and do a final oral exam before the surgery. Well, it might not be the final exam, but it was the last big one and this is when Dr. Grayson broke the news that she may have to get two teeth pulled. One tooth was loose and the other was sticking out of her palate – both posed an infection risk (if either tooth falls out after surgery, it opens a channel to the graft area where bacteria can be introduced). Dr. Grayson said he’d consult with Dr. Cutting (the surgeon) to see if he wanted those teeth pulled. Meanwhile, we needed to make an emergency appointment with Emily’s dentist to have the teeth pulled since she needs three full weeks to heal after they are pulled and surgery is just four *choke* weeks away!

June 13th – Here’s the “more pain” part – Emily got those two teeth pulled yesterday. She was an absolute trooper about it! She got some happy gas and didn’t even cry, although there was a moment after it was all over, when the gas wore off and she was sitting up, that she looked a little terrified and extremely vulnerable and my heart broke in about a thousand pieces. She was sleepy for about an hour after the procedure, but back to her normal happy self by the evening. I took her and Ana to a local toy store where they got a few trinkets and then we all watched Glee before bed (in celebratory fashion).

So…next steps…we go back to NYU on the 23rd and the 30th for pre-operative stuff (testing, information, etc.) and the surgery itself is scheduled for July 7th. Throughout all of this I’m dealing with some pretty hefty medical expenses. All of this is pretty much out of pocket since I have a high deductable insurance plan – I don’t get any benefits until I pay $5000. Add to this the dental bills (some of that does get reimbursed, but I have to pay for it up front) and the expenses involving travel to and from the hospital and, well, I’m FLAT BROKE. I’m just going to take it one day at a time and try not to stress over money (or the sorry state of healthcare in this country).

Emily taught herself a bit of Heart & Soul on the piano, so of course I want to share. She’s been taking piano lessons for a couple of months and she’s very motivated to learn. She seems to be able to pick up songs by ear and, like Ana, she’s got a good ear for music. I guess I’ve got a budding musician on my hands!