Friday, August 28, 2009

Bows Are for Helmets, Not for Hair!

Becca got her helmet today! She did amazingly well at her appointment, and she doesn't mind the helmet at all, except that Mommy and Daddy are still a little rough getting in on and off. She'll wear it for a few hours today, sleep without it, wear it a bit more tomorrow, and go full-time starting at bedtime tomorrow. I think she's so adorable in it!

The lady in the pictures is Kathleen, our practitioner at Restorative Health who worked with Becca all the way through the process. They have been so wonderful, even rushing to get it done before we leave town next week!

Becca's Helmet Fitting 001

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Becca's Helmet Fitting 020

Thursday, August 27, 2009

Fun in the Pool!

I snagged a pretty good-sized baby pool on clearance at Target the other day for $7.  Sweet.  Becca and I busted it out today for the first time.  It's awesome - enough room for Becca to walk around in her float while Mom lounges against the corner.  Pretty comfy.  Here's a video of our dog days fun - complete with a burp.  Too funny.  Speaking of dogs, they were interested in the pool, but refused to jump in.  Sasha did scrunch the side down enough to drink out of it, though.  She was thrilled to have discovered a gi-normous water bowl in her own backyard.

Here's the link: .  Enjoy!

Becca's Last Good Hair Day...for a While!

Tomorrow is helmet day!  I'm excited, but also a little bit sad that now that she finally a pretty head of hair, we have to cover it up for 6 months.  So of course, I took some pictures!  I had a hard time getting good pictures - of course, when I finally don't want her to look at the camera, she can't get enough of it.  Oops.  Hopefully over the next few months, we'll have some good progress shots.  I've got a selection of hairbows velcroed and ready to pop on her helmet before we are even out the door. 

Arial view:

Becca pool fun and flat head 005

Left side:

Becca pool fun and flat head 018

Right side:

Becca pool fun and flat head 020

Becca, how do you feel about spending 3 hours at your fitting appointment tomorrow?

Becca pool fun and flat head 013

But how do you feel about getting your super-cool helmet?

Becca pool fun and flat head 014

I'll let you know how tomorrow goes!

Wednesday, August 26, 2009

Saying My Piece

I'm hesitant to write this piece.  I will undoubtedly offend some of my beloved readers.  I know that some of you will disagree  with some or all of what I have to say.  And I know that my daughter's story shouldn't be exploited for political gain or manipulation.  At the same time, though, I know that because of the road we have trod these past 18 months, I have learned a little bit about our medical and insurance systems.  And so, in light of these experiences and my deep theological conviction that all of God's children are loved equally, I want to share with you the conclusions that I have drawn regarding healthcare reform.  Feel free to ignore what I have to say, but please be nice with any comments you may have. 

Deep breath.  Here goes...

In 14.5 months of life, Becca has accumulated healthcare bills totalling about $831,000.  That's a lot of moolah. 

Flashback to 18 months ago, when we were preparing to move and change jobs.  Remember how I was all stressed out trying to make sense of insurance coverage, networks, alternative plans, etc?  Obviously, it's a good thing I worked all of that out, because our out of pocket expenses for Becca's care total $2000.  Out of $831,000.  (We had to pay more for my care, but that's kind of a long story - but only a few thousand dollars out of pocket for me, too.)  Even with our astronomical insurance premiums ($1760 a month for the 3 of us - thankfully not all of this is our responsibility), we made - as Howie would say - "a very good deal."  But we were very lucky.  Very, very lucky. 

When we first discussed the fact that we would be moving mid-pregnancy with our O.B., she assured us that "insurance can't deny you because you are pregnant."  So when I saw how much the premiums for the clergy group health insurance policy would run, I sought out other options.  (As an elder serving full-time, John has to participate in the group plan.  As an elder serving part-time (at the time), I had the option to shop around.)  I quickly learned that I did not qualify for any other plan.  Nobody (Blue Cross Blue Shield, Humana, Aetna, etc.) would even look at an application from me because I was pregnant.  And this was before I even had a chance to tell them about all the risks associated with my pregnancy. 

Thankfully, though, since I qualified for the clergy group policy through John's appointment, I was able to maintain coverage.  (This is what Dr. Walsh meant with her comment - that a group for which you already qualify cannot exclude you on the basis of your pregnancy.  That was good news, at least.)  Now, because of the way the pregnancy unfolded, I'm pretty sure that none of those companies would have anything to do with me -  even though I'm notpregnant...which means, of course, that without employer-provided health insurance, I am uninsurable.  

Becca, on the other hand, was born uninsurable.  Those of you who have had children in, oh, the last 40 years probably remember all of those mailers that you get about the Gerber Grow-Up plan - the life insurance policy that turns into a savings bond when the child turns 21 or something like that.  It reads like every child qualifies.  But not Becca.  I didn't even waste the time on a phone call.  Private insurance companies wouldn't go near her with a ten-foot pole, no matter how cute she is.  Simply by telling an adjuster her birth weight, I can get a good laugh. 

Again, though, as John's dependent, she qualifies for the group plan, so she's covered.  She actually gets double coverage right now, though, because since she is technically disabled (based on birth weight, health conditions, and developmental delays according to her actual birthday), she qualifies for TennCare, Tennessee's version of Medicaid.  (This is why we have paid less for her care than mine.  As secondary insurance, TennCare picks up the co-pays, deductibles, etc. that our private insurance does not.  But they don't cover helmets either, FYI.)  We LOVE TennCare.  It kept us from having to pay a second deductible on her when we switched insurance when she was 9 days old (a technicality of appointment changes in the UMC), and when the new calendar year rolled around.  It has covered the $15 co-pay we have for every doctor's appointment - and when you see a pediatrician and 7 specialists, those $15's add up.  (Remember how often we were going to the doctor at first?)  It has kept her prescription costs low (read: $0).  However, as I have mentioned before, there is a chance that she may lose her TennCare, due to the unknown ramifications of a recently-settled court case. 

Losing TennCare would be unfortunate, but she'd still have our primary coverage.  Except that....our primary insurance has a lifetime cap of $2,000,000.  If we anticipate Becca's being on our plan until she's 25 (assuming she's in school, so on and so forth) and remember that she's already $831,000 along, it's not hard to imagine a scenario in which she hits that cap.  What if her issues that we are just monitoring now become bigger deals?  What if she needs more surgery?  What if she gets in an accident?  What if she gets cancer?  What if....I need to stop thinking about these scenarios...but you get the idea.  It wouldn't be hard to do.  And that's a LIFETIME cap.  So what if, heaven forbid, she decides to become a United Methodist minister in Tennessee?  Oops.  No insurance for you!  (Okay, that's a long way down the road, but still, she's a year old, and already the deck is stacked against her.  Not fair.)

Again, we are good for now, especially since now that John is fully ordained, he is guaranteed an appointment (and thus, insurance).  But what would happen if (I can't even type this without tearing up) something happened to sweet John Hill?  Or, in a more mundane story, what if he decided that he wanted to change careers?  Or go back to school?  Or strike out on his own, as an entreprenuer of some sort?  Becca and I would be S.O.L.  So we really are John's dependents in the strictest sense of the world.  I hate that we are a burden to him in that sense - not that he thinks of us as a burden or minds it - but I wish that we were able to free him up to follow as God may lead.  (We're still planning on following as God leads; we're just trusting that God will lead us in directions that involve health insurance at this point.  Perhaps when we were younger (those were the days...) we could have gone it would just be squandering the gift that God has given us in Becca.)

It is terrifying to me to think about Becca and me going without insurance.  It would compromise our access to care beyond emergency services.  It would definitely mean no more babies for me, and one emergency room visit with a hospital admission could financially ruin us.  If Becca starts wheezing this winter, I don't want to have to think twice about going to the doctor to check for R.S.V., when I know that quick treatment is crucial to her survival.    I don't want to have toweigh the importance of prescriptions against the need for food.  I don't want to have to live every day wondering if Becca's amazing strength will hold up.  (Okay, I do that last one already, but I don't want the threat of imminent bankruptcy to be the soundtrack to those worries.)

And think about this - Becca and I are privileged people.  I was born to parents who planned for our college funds before we were born (I think they planned, at least...somehow it worked out and I was expected to go to college).  I had access to education, extracurriculars, healthcare, good role models...I'm not saying my childhood was perfect; I'm just saying that I had everything I needed to get ahead in life.  And I think I made good on it.  I'm not a shiftless lazy slouch who is whining that nobody is giving her free healthcare for doing nothing.  At least, I don't think I am.  And sweet Becca, as we know, has had to fight from the very beginning.  And she's just a kid!  How could she have done something wrong already? 

Becca and I have not fallen through the cracks, and for that, I am deeply, deeply grateful - to God, to John, to all of you fabulous taxpayers, to our families.  But it does feel like we spend a little time every day, standing on the edge and peering down into that crack.  Because I know, all too well, that at any moment, life can change, and we could be sent plunging. 

A system that allows people like me and Becca to live so precariously is not a just system.  I'm not saying that Becca and I are special. (Okay, I am saying that she is special.  But I'm not.)  But John and I have been responsible people who have made responsible choices.  I would just like to see those choices made available to everyone.  It might mean that those of us with great access to excellent healthcare would see some changes.  Perhaps we would have to wait longer to see non-emergent specialists.  Perhaps our beloved doctors would have to bill a little bit less.  But isn't it just like the stewardship of all other resources?  As in, don't those who have a lot need to share with those who have little in order for everyone's (both the giver and recipient's) needs to be met?  Isn't it possible to think beyond ourselves, even in matters as personal as healthcare?

I am a "Reverend," and I do have both a B.A. and Master's in Religion, but I'm not in the business of guessing what Jesus would say or do about much of anything.  Just a quick glance at the Gospel of John reveals a Savior as enigmatic as loving.  But I do think that Jesus spoke pretty specifically on this matter in Luke 10.  To the "expert in the law," Jesus tells the parable of the Good Samaritan.  You know that story, but let me refresh you.  Jesus tells the expert that in order to fulfill the law, you must love your neighbor as yourself.  In defining who one's neighbor is, Jesus tells a story about a man robbed, beaten, and left for dead.  Several people pass the man by, but the Samaritan acts as a true neighbor and provides care - healthcare - for the man.  In verse 37, Jesus tells the expert - and us - to "go and do likewise." 

Friends, this is our chance to do likewise.  This is ourchance to to show mercy to our neighbors, whatever their scenario may be.  It's not our place to judge if someone is worthy of care, whether or not they are down on their luck or have squandered their opportunities.  Because life is not a level playing field.  Look at Becca, for Pete's sake.  Please talk with your senators and representatives and encourage them to pass significant healthcare reform that guarantees access to healthcare for everyone - regardless of their pre-existing conditions, their previous health costs, or their employer's prerogative to offer (or not to offer) insurance coverage.   And please, in the process, show the same mercy and respect to those with whom you agree and those whose opinion couldn't be farther from yours.  Please, let's learn to be good neighbors.

p.s.  Just to head off anyone who might be ill-mannered enough to say this - in my reading of the prominent bills (not word for word, but pretty thorough for one who is no longer in the legislative business), I have found absolutely nothing that would have impacted the kind of care that Becca received.  There are not weight limits, definitions of viability, limits on care except as deteremined by a patient and his or her doctor(s).  I did find a greater emphasis on quality pre-natal care, which is proven to reduce the risk of premature birth.  There are no "death panels," no support for abortion, and no, as I read on a sign outside of the town hall meeting I tried to get into tonight, "Obama-care [does not equal] Granny's going down!"  And please, whatever side of the issue you are on, think about the words you choose before you put something on posterboard and wave it around for the cameras.  Seriously.

Monday, August 24, 2009

Helmet, Take 2

Okay, where the Signature Health Alliance failed us, the much more humane insurance collective known as the Hill family has stepped in, and Becca IS getting her helmet!  Yay!  Even though she would have still been gorgeous and - if you don't mind - a kick-ass diva with a flat head, we're going to see what the helmet can do.  As John said, "Our kid only gets one head."  Good point.  So begins the helmet therapy.

We went for the casting today, and we'll go back for the (3-hour!) fitting appointment on Friday afternoon.  It normally takes 10-12 days to have the helmet made, but I convinced the kind folks at Restorative Health to rush it so that she will have a few days in it at home before she goes to Nana Camp and we go to Malaysia.  I opted for a plain white helmet so that we can accessorize with bows to match her outfit and/or the upcoming holiday.  I'm learning to make the bows to velcro on to the helmet - which reminds me of when Heather and Stacy (and Leigh and Carla and Millie!) used to glue bows onto her sweet, tiny little bald head.  I'll never forget Heather saying (the first time we saw her in a bow), "She's wearing a bow because she's fancy." 

She is fancy, and now she'll be fancy in her state-of-the-art, patent-pending, custom-made helmet!  Thanks, Nana and G-Diddy!

Don't worry - I'll be sure to post pictures on Friday.

Saturday, August 22, 2009

Becca Meets Brooke

John, Becca, and I met the most amazing photographer today - Brooke Kelly.  She read about Becca's story and contacted us, offering to do a free shoot for Becca's birthday.  How awesome is that?!  I have wanting to have professional portraits done for a long time now, but, as you can imagine, it was on the list of "wants" instead of "needs" - it's not like we haven't documented her first year right?  But wait until you see how they turned out...amazing.  Not even I knew Becca was THIS cute.  (Okay, maybe I did.  But the pictures only magnify her beauty.)  Here's the link to the preview she posted on her blog:

If you want to book her for pictures of your darlings, engagement and wedding photos or whatever, visit her site for contact and details.  Her site is  I can't recommend her highly enough!   We had a great time!  Thanks SO much, Brooke!

Friday, August 21, 2009

Friends and Flatheads

I was looking through recent pictures for a silhouette so that you can see the flat head of which I write, and in so doing, I found a couple of pictures of some special friends that I hadn't posted.  In each of the sets below, I've posted one just plain adorable shot and one that shows the side of Becca's head. 

In July, between the mission trip in Atlanta and the week at the beach with John's family, we spent the night with some of our dear friends from seminary, Narcie and Mike...and we got to meet their two little ones, Enoch and Evy.  Narcie and I appear to have similar taste in baby clothes (or our mothers and mothers-in-law do!) because Becca and Evy often have matching outfits.  Here they are, with big brother Enoch (who is crazy fun!), in matching dresses.  Enoch is 2-ish (?  Narcie, correct me!), and Evy is 6 months.  These kids are destined to be friends, if for no other reason than to commiserate.  Enoch was born during Annual Conference, and on Evy's birthday, Narcie went straight from the Advent service she was preaching to the hospital.  Love those PK's! 

Here they are, about as posed as you can get 3 kids 2 & under:

Becca June-July 064

And here's Becca manhandling Evy so that she can swipe Narcie's cell phone from her:

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Don't worry; Evy wasn't hurt.  My girl's a bruiser, though!

This next little man is in the running to be Becca's boyfriend (along with Hunter, Colin, and Enoch, of course).  Clark is - follow me here - John's parents' best friends' daughter's kind of like a cousin on a separate family tree.  He was born 2 weeks before Becca, but was full-term (so he's kind of older).  He is aDORable, and I'm sure it will get more and more fun to see them together as they get older.  Here they are on the last night (sniff sniff) at the beach. 

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And just being cute - note the linked arms!

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And for one of the most specialest friends in all the big, wide world - Becca wrestling with her G-diddy:

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Phew.  That was hard work.

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State of denial...

Official word came through from insurance today: no helmet for Becca.  The claim was denied.  That's unfortunate, because I was planning on paying for her college tuition through her work as a Gerber baby.  (Rumor has it that Gerber only uses babies with big heads.  Check.  But they probably need to be round.  Uncheck.)  Seriously, though, we had decided to go for the helmet therapy if insurance would cover it, but it's looking like it's a no-go.  Several of you have indicated (publicly or privately) that you might be willing to sponsor a portion of this darling cranio-facial-shaping orthodic device, but, let's face it: Becca is darling enough as is.  Let's save your generous hearts for another instance, say, oh, when we need to buy plane tickets to Milan for Becca's runway debut as Europe's premier petite model...or to Stockholm when she accepts her Nobel Prize in biochemistry or astrophysics or both...or to St. Petersburg when she is competing for the Women's Gymnastics All-Around gold at the 2024  Summer Olympics (has the venue yet been selected?).  My point is, your many kindnesses (both in words and gift offers) have not gone unnoticed, but anything that Becca would have done with a perfectly round head (which the helmet was not guaranteed to produce), she can do with a moderately flat head instead.  Besides, knowing Becca, if anyone were unwise enough to make fun of her plagocephalic macrocephalus, she would kick them in the shins and move right along. 

I'm disappointed, but I can't be too upset.  This is, after all, the first claim for Becca that our insurance has denied (I'm still wrangling with them about a claim for John), and though our premiums are astronomical (seriously, you think your insurance is expensive?), we've certainly gotten our money's worth.  But more on the state of insurance and health care later. 

I didn't want a stupid helmet for her anyway.  They don't come in purple.

Thursday, August 20, 2009

Divas like dinos, too!

Here's the dinosaur dress I made for Becca!  I'm not good at curves, so the armholes ended up rather the "dress" is more a jumper...but that will work better for the fall, anyway.

Early August 017

After finishing some burp cloth baby presents, a Halloween dress is next up! 

Oh, and because I'm really weird and enjoy torturing my little boy dog, here's Buster in a pair of Becca's shorts. 

Early August 016

They fit him pretty well.  Seems he's a 3-6 month size.  I think he would have liked them had there been a hole for his tail.

Saturday, August 15, 2009

Happy girls

My dreams have come true.  Today I danced around the room with my little girl, singing along with Annie to "Tomorrow."  Seriously, these are the things I dreamed about doing with my kids.

Look at where we were a year ago...or worse, 15 months ago.

Life is goooooood.

Becca June-July 124

Friday, August 7, 2009

The Diva Strikes Again...

Here's the link to Becca's news story.  Enjoy!  (Okay, this seems to be the link to the channel's video player.  Once you get there, you have to scroll through to find the story about Becca.  Right now it's on page 7, but it will likely move farther back as more stories are posted.)

Tuesday, August 4, 2009

Tune in...

...tomorrow night (Wednesday) at 6 to NewsChannel 5. They are covering Becca's story! For you non-locals, I'll be sure to post the link.