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 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!)

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.

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.

She is starving! She is also picky and that means she’s mostly eating yogurt, jello, soup (we gave her some chicken and stars soup today and she mostly ate the stars, so I guess we cheated) and lots of milk which I guess fills her up. I weighed her today and she was actually up about two ounces- so hooray for milk and jello!

We have our follow-up visit at NYU tomorrow and hopefully she’ll be officially cleared for soft foods. PLEASE PLEASE CLEAR HER FOR SOFT FOODS. I’m also going to ask about the stitches on her hip which are still covered by a big surgical bandaid thing that I’m afraid to touch. She says it itches like crazy and I want to know if we can remove it.

She’s been a little more tired than usual, which I think is pretty normal considering the reduced calories and the amount of healing. I hope she gets some sleep in the car tomorrow because we have to leave at 7 a.m. to get to the hospital by 10.

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!!