I’m still updating Ana’s blog regularly, but I wanted to quickly pop back over to Cleftstories so I could post this video of Emily singing at her school’s variety show yesterday. This is a kid who was born with a complete bilateral cleft lip and palate -meaning she had absolutely no palate when she was born! It didn’t stop her from learning how to sing. This is the third year she performed in the talent show (she was six the first time!) and she completely blew me away. That’s my girl.
As you may have noticed, I don’t update Emily’s blog very often. In fact, I’ve only updated it about three times this year – the last was in April around Emily’s birthday. I’m not sure if it’s time to take this blog down or not. I know that once in a while, a new family finds some of my old posts and benefits from them. Plus Emily’s journey isn’t over. She’ll be going back to NYU for the rest of her childhood for orthodontia and more surgery (likely to reconstruct her lips and nose a bit more to her liking). So, for now, I just want to say that she’s doing very well. She’s happy, healthy, a talented singer and has been taking Karate for nearly a year. The girl can kick!
So, Emily is doing well. She’s beautiful, she’s happy and she is mostly okay with herself (though she still doesn’t like to talk about her cleft). But…our family is not okay. This past August, Emily’s sister Ana was diagnosed with a rare form of cancer which extends from the portal vein (the main blood supply to the liver) to her liver. The tumor is slow-growing and hasn’t spread – but it is considered malignant because it’s very aggressive, and very large. Ana is eleven. She underwent chemotherapy throughout September and October but it only shrunk the tumor minimally. So now Ana needs a liver transplant. This the only “cure” for this tumor. I have been blogging about Ana’s journey on her blog Healing Ana. There’s stuff about Emily on there too. I really can’t believe I’m blogging about another sick child. Ana’s been going to Westchester Medical Center for most of her treatment, but we are in the process of switching her t Columbia Presbyterian for the transplant.
I hope to at least get onto CleftStories once a month (ish) to update Emily’s blog. She’s got an appointment at NYU in January and will likely start again with a palate expander and anterior pull headgear (the second round with that). She may also need a second bone graft because her surgeon did not like the amount of bone he saw on her last x-ray. Fingers crossed that she won’t have to go through that again.
Did I mention that Emily is a gorgeous singer? I’ll leave you with a video of her singing Simple Gifts – a song she learned from a very special parent at school.
And here’s a picture of Emily wearing one of the wigs we bought Ana when we thought all her hair would fall out (it didn’t – she did lose a lot of it though). We got this one, a bright blue one and also a very expensive human hair wig which we’re going to hold onto until we know for sure that the post-transplant medication doesn’t also cause her to lose her hair (I’ve read it can do that).
Please come with me back to Ana’s blog and follow our family’s new journey.
Well, it’s finally happened. Emily is officially eight years old as of a couple of weeks ago. She performed in her school’s variety show on her birthday, so we had her party last weekend. She did great at the show and so did big sister Ana. Here are videos of both of their performances.
Emily performed “Just the Way You Are” by Bruno Mars. That’s her dad on drums. The entire audience of about 200 people sang happy birthday too her, which was kind of awesome.
Ana pretty much blew the roof off with her cover of “Set Fire to the Rain” by Adele.
Well, so much for my many promises of updating this blog more frequently. The holidays have come and gone, and now we’re in the midst of a very spring-like February here in New York. Emily is growing like a little string bean.
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.
If you follow this blog, then you know I’m trying to raise money for my friend whose two children are getting surgery on the 14th and 15th of this month. I live about 7 hours away from Tanyia and I can’t be there to help her with the day-to-day things she needs (childcare, shopping, dinner) – and so I asked the question, “how can I help?” That’s when I found GiveForward.com.
GiveForward is set up specifically to help people raise money for medical expenses. There are many heart breaking stories on the site of families in need. It was launched in August 2008 and, according to the site, “has helped thousands of people raise millions of dollars for things like chemotherapy, organ transplants, mission trips, funeral expenses, and their favorite non-profits.”
When I set up Tanyia’s page, it started out like any other web-based, person-free online experience. However, a couple of days after the fundraiser began, I was contacted by a fundraising coach who offered to help me in any way he could. GiveForward’s Marketing Director also reached out to me to give me some support, offer up encouraging words for Sydney and Kennedy and just let me know that there are a bunch of humans behind the machine. That really meant a lot.
Now, I’m going to get a little political here which I try not to do on this blog, but as the parent of a child who has unusually high medical needs (as are many of you who find this blog), I can’t help myself. Raising money for medical expenses is nothing new. Even if all medical expenses were completely covered by a person’s insurance, other needs arise – like if the primary breadwinner gets sick and can’t provide…bread.
But when I read through people’s stories on GiveForward, the sheer NEED for a better healthcare system in this country is painfully, embarrassingly apparent. Tanyia should NOT have to lay out 40% of her earnings for the year just so her children can get the surgery they need. Cancer treatments, kidney transplants, rehabilitation after strokes, car accidents and heart attacks should not cripple a family!
I am thankful for GiveForward and for the ability to help friends and families raise money for people with enormous medical bills, but I am also extremely angry that we’re all in this position in the first place.
The site has helped raised over 8 million dollars for various medical expenses which is, indeed, huge. But, here’s what makes me mad. In 2009, the five largest for-profit insurers reported a combined profit of $12.2 billion.
In May 2011, the New York times reported that Health Insurance companies showed record profits because people are paying exorbitant premiums and going to the doctor less. I ask you this, WHAT THE HELL ARE WE PAYING FOR?
I’m writing all this now because I know that it’s not easy to ask people for money. I feel bad about it even though I desperately want to help my friend. I’m sure the people on the site who need the money to save their child, their spouse, their friend – all feel this odd guilt about asking for money, but what choice do we have? Why don’t insurance companies feel bad about raking us all over the coals while they make record profits?
This year I will have spent over $8000 in insurance premiums to “cover” my family and paid an additional $7000 out of pocket which doesn’t even meet my family deductible of $10,000. This is not a good deal! My insurance coverage this year will be just as crappy, although I am happy to say my premiums are going down for the first time in years. But for this luxury, I will need to pay $9000 out of pocket before I see a dime in benefits.
So, let’s not ignore the elephant in the room. Insurance companies are not providing a service. They are getting in the way of people receiving good healthcare (or any healthcare) and it’s not right.
*getting down from soapbox*
So, all that said, let me turn back to the main purpose of GiveForward – which is to help families – by providing links to the pages of all the families I could find who are trying to raise money for their babies who need cleft surgeries.
Love to Navy Bean Goal $25,000
Pendley Smile Fund – Goal $11,000
Franky Minaglia – Goal $6000
Give for Gavin – Goal $10,000
Jacob Andrew Glover – Goal $15,000
Mending Milo’s Heart – Goal $10,000 (Milo also has a cleft palate)
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 can’t believe that it’s been three months since I’ve updated the blog. I had nearly 20,000 comments which had accrued – 99.9% of them were spam, I’m sure, but if you left a comment and didn’t see it (and know me) please repost or send me an email. I apologize for my supreme neglect!
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, Ana and I discovered Glee a few months ago and we subsequently blew through all two seasons on Netflix and Hulu in about six weeks. We’re now obsessively watching our favorite episodes over and over again while we wait for the season three premiere in September.
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!)
It’s hard to believe that fifteen days have passed since Emily’s surgery. We’ve begun to hit some recovery-related milestones…drumroll…
She was cleared for soft foods! Well, some soft foods. Here she is having her first sort of solid meal since before the surgery – fried rice and lo main from the hospital cafeteria. It was extremely soft and overcooked..thus, it was perfect! She ate it all up.
A shot of her in yet another dentist’s chair. This is a bit of a sentimental one for me though – it was the room where she regularly got her NAM adjustments when she was a baby. She really can’t help posing like this when a camera is pointed at her.
Looking coy? I’m so glad to see her sense of humor is intact and her silliness is as strong as ever. She’s such a bunny.
Here are the girls in front of Jim’s garden. He wanted me to zoom in on the garden, but the kids were cuter.
We did end up going to Chuck E. Cheese and it wasn’t as horrible as I thought it would be. This smile from Emily was really worth the entire trip. She can’t do much this summer, and it was really great seeing her have fun.
So a few other milestones besides the soft food – today she lost her last stitch from the surgical site in her mouth – she was so excited! It was like she’d lost a tooth or something. She’s also been cleared to take baths again (she was only allowed showers while her hip healed) and she can play Just Dance! She’s not allowed to jump around though, but she can dance around. I also think she grew about a half inch in the last couple of months – if you notice in that picture with Ana, she’s looking a bit stretched. Almost ready for second grade!
Here’s a picture of Emily which I took this morning. My parents came for a visit yesterday and my mom and I took the girls to the mall where we got them some hair accessories and earrings. Emily got herself all dolled up – right down to the hair accessories this morning and now we’re going to go to Chuck E Cheese Full disclosure: I LOATHE Chuck E. Cheese and swore I would never set foot in there again a few years ago, but Emily can’t run, swim, jump, dance or do anything remotely related to summer and she loves ski ball…so…yeah. She also loves to bowl but I think it may be a bit soon just ten days after hip surgery.
Here’s a shot of Emily’s new earrings (well, one pair – we bought like five.)
Here’s Ana wearing a pair of her new earrings (donuts). They look delicious!
So, food update: we discovered that Emily absolutely loves the mashed potatoes from Popeyes Chicken – they have one at a rest stop that we go to on the way home from the hospital and Emily and I both got some while my Jim and Ana got chicken. It was very satisfying and the mashed potatoes are very smooth (no lumps). I’m guessing they’re made with tons of cream or fat or whatever.
Emily had the mashed potatoes with some yogurt last night for dinner. The yogurt was like dessert – I find she’s way more open to eating sweet stuff if she can have some salty stuff first. We’ve also been blending Maple Brown Sugar oatmeal in the morning to a fine powder before mixing it with water – Em was resistant to eating this first, but now she gobbles it up. Oooh, and one more thing – Italian ices! Emily loves these and they’re like 100 calories each. I let her eat as many as she wants. Not the best nutrition, but at least it’s got calories. We’ve had no luck with soup except Miso broth which has very little calories.
Emily has been napping daily since she’s on this diet – she sleeps for a good two hour nap a day. I figure with all the carbs, plus the reduced calories – she needs the break. I lie down with her then peel myself away when she falls asleep (unless I fall asleep too).
Emily has another follow-up visit this coming Thursday and I’m hoping we can graduate to soft foods. Keep your fingers crossed for her.