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)

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.

Just a quick update today. Emily continues to do better and better. There doesn’t seem to be a change in the swelling (it’s very much reduced from where it was four days ago though) and the bruises around her mouth actually look worse, but I guess that’s because they are healing.

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.

I woke up to a happier Emily this morning, although she’s still extremely swollen. The surgeon said it was going to go down way slower than we’d like it to, so I guess we’ll just have to be patient. Emily saw herself in the mirror yesterday and completely freaked out. She made us turn all the mirrors around (there are only a couple). That broke my heart.

But, the good news is that this morning she did wonderfully with food, drink and medicine. She ate four gogurts right out of the plastic pouch thingies (I told her to squirt them on her tongue and sort of slurp them into her mouth, but she figured out a way to have them sit on her bottom lip so she could squeeze the yogurt into her mouth. I think it helped a lot because even though gogurt is totally liquified, it made her feel as though she were eating. She even said, “I’m full, mommy!”

She also took her antibiotics without much complaint (I’ve been mixing it with about two tablespoons of white grape juice) and said she didn’t need Tylenol. I gave it to her anyway because I can’t quite believe that she’s not in pain after just three days – plus there’s the swelling. She actually rolled her eyes and drank it.

I also started using the Peridex today – that’s a prescription strength mouthwash which she needs to rinse out with twice a day in lieu of brushing her teeth. She’s not allowed to come near her mouth with a toothbrush at this point. The Peridex is minty and feels a lot like Listerine when you swish around with it, so naturally Emily hates it. It burns her mouth a little, particularly her tongue. I wish it came in cherry flavor or something to make things a bit easier for this kid. It’s important to use this to help prevent infection – I let it slide for a couple of days because she’s so extremely swollen I couldn’t even get into her mouth. It was even difficult today – not sure how much actually got in there. We’re using an eye dropper to put it in.

Emily is writing out Thank You cards right now using brand new art supplies and stickers. She is in great spirits and seems a lot like her normal self (I even had to tell her not to run, so I guess the hip’s feeling better). The only thing that’s still causing significant worry is the amount of swelling. I’d also love to see her eat a bit more, but she seems to be doing great with liquids.

Here are a few pictures from yesterday and this morning.

Emily had fun painting with watercolors (a gift from one of her friends).

This is a bag Emily decorated with fabric paint – I spent WAY too much on craft supplies yesterday, but it kept her and Ana busy.

This is a card Emily made for a friend this morning. Writing out Thank You cards is a fun project when you have tons of new stickers and markers to decorate with!

Dear Emily,

I’m glad you’re asleep. I’m glad this day is over. My heart broke a thousand times for you today. I know you are trying your best to understand that what you’re going through is necessary. I know you, in your sweet, brave way trust me completely, but I can see the doubt in your eyes. I can’t even imagine how hard this is for you. A 7-year-old shouldn’t wish like hell to be anyone but themselves.

I think today was just about the worst day ever. I think I told you a hundred times that the swelling will go down, and you’ll be able to eat more food next week, and the medicine is really important, even though you hate it. I know you think I’m mad that you cry when it’s time to take your medicine, or you won’t drink enough or you say you wish you were Ana, but I promise you that I’m not mad.

I want to explain that my voice shakes and I seem so frustrated because I’m just so sad and scared. I’m angry too, because why should you have to go through this? But I need to be strong for you, because I’m afraid if you knew how heartsick I am, having to watch you go through this, it will make you feel even worse. I’m writing this to you now so you’ll know how very much I love you.

So for now I guess I’ll tuck these thoughts away and maybe I’ll show them to you when you’re grown up, and all the pain of this awful day is dulled by time. It will be a day when you realize how beautiful you are, and you’ll be smiling at me with a full set of gorgeous teeth.

Maybe by then you’ll be ready to forgive me for not being able to make it all better. I wish like hell I could just make it all better!

So, I’m glad you’re fast asleep right now. And believe me when I say that I dearly wish you the sweetest dreams you’ve ever had. Good night, sweetie.

Love,
Mommy

Emily woke up early this morning and was extremely swollen. So much so that I freaked out a little (not in front of her or anything) and called the surgeon. She also had some blood on her lips and I wanted to make sure this was normal.

The surgeon called me back immediately (thank goodness) and said that the swelling was normal – and the second day after surgery was the worst in terms of swelling. The blood is likely from pooling blood in her cheek – which contributes to the swelling and the blood that’s been on her lips. He said the good news is that the more blood I see, the more the swelling will go down.

I am not posting any pictures of her until the swelling diminishes a little – it’s really THAT bad. Even the skin under her eyes is puffy and her face is completely unrecognizable as my little Emily. She’s talking well though (if a little muffled sounding) and I’ve gotten her to drink a bit of fluid – mostly chamomile tea with honey. She fights me when I try to give her anything heavy like Ensure.

We’re having trouble getting her to drink the antibiotic they gave us at the hospital because it’s very bitter. The surgeon said it was okay to mix it with some juice, so we’ll try that next. Also, at this point as I type this (about two hours after i gave her plain Tylenol) she’s much better than she was when she woke up. She just got up and walked over to our cat Basil, picked him up and took him back to the couch. I’ve also gotten some giggles out of her this morning – a sound that is pure music to my ears.

We made it to Manhattan at about 6 p.m. on Wednesday evening. We stayed in an apartment provided by the National Foundation for Facial Reconstruction which is an organization that helps families like ours afford care at NYU. If you’re wondering about what charity to donate money to this year – you can’t go wrong with the NFFR. They make it possible for Emily to go to NYU. Here is a direct link to their donation page.

Once we settled into the NFFR apartment (located in an NYU dorm building directly across from the hospital). We sought out some Japanese food for Emily’s last meal before surgery (and, really, her last solid meal for the entire summer).

Here she is enjoying some Teriyaki rice and she also really loves Teriyaki soup, which is good because she can only have fluids for the next week. More on that later.

We walked around the city after we ate and Emily posed in front of this little boutique. She’s my little fashion diva.

A bunch of wigs from a store called Ricky’s. Emily loved all the purple ones.

Here we are in the waiting room on the day surgery floor. They have a room just for kids, which is great. Emily was so good – she was happy and silly even though she hadn’t eaten since the night before (it’s about 11:30 a.m. when I took this picture).

Another shot in the NYU waiting room.

Here we are right before Emily went into the OR. I went in with her (thus the Michelin Man costume). They gave her something to make her relax, and BOY was she relaxed! She was happy up until the very moment she fell asleep and then they kicked me out. It was so hard to leave her.

The surgery took about three hours and Emily did great in the recovery room. I didn’t take any photos of her at this point because I wanted to respect her privacy (she was all wired up, looking drugged and bruised). She slept almost the entire time in recovery – we were in there for a couple of hours. When she finally woke up, she asked me when she’d be getting her surgery. She didn’t even know she was done! She was astounded when I told her.

We went down to the Pediatric floor around 7 p.m. and Emily had already had about 4 ounces of apple juice. She was on Tylenol with Codeine for the remainder of the evening, but she hated the taste so much that we switched her to plain Tylenol in the morning. She was discharged at 7 a.m.

Here she is in her wheelchair waiting to leave.

Dr. Grayson checked her surgical splint, said everything looked good and we went home. She slept in the car most of the way home. She’s extremely swollen at this point so I’m not going to post any pictures until her face looks better (it’s atrocious – I feel bad posting a picture of her in this condition).

Our biggest worry now is she hates the liquid diet and her stomach hurts on top of everything, likely due to the antibiotics she’s on. She has taken a few ounces of broth, some water and a sip of milk or ensure that we’ve threatened into her. Her grandmother came up with the idea of rewarding her with a quarter every time she finishes 3 oz. of fluid and that worked very well. So…bribery it is! I’ll update again tomorrow. For now, I’m happy to see she’s playing with her sister and seems in good spirits. We even had a visit from the cousins today and that really seemed to lift her spirits.

Thanks to all family and friends who have been there for us this past week. It has helped tremendously to have everyone’s love and support.