Friday, December 17, 2010

TennCare Cuts

Last night, Nashville's NewsChannel 5  covered another story about TennCare and disabled kids.  The Hamby family's story is very much like ours (except that their son has had 21! surgeries, making Becca's 5 look pretty measly).  Little James will be losing his TennCare coverage as of January 1st.  (I'm not sure why had got to keep his so long when most of us were kicked off early this year.)  His mom stays home to take care of him and to shuttle him to doctors' and therapy appointments, and his dad works 4 jobs, one of which is as a public school teacher.  Even with their private insurance, the co-pays and excluded items will cost a great deal of money, and they are afraid that even with dad's 4 jobs, they won't be able to cover it all.

These are not irresponsible people who have made poor decisions.  They are (or at least appear to be -- I don't actually know them) hard-working people who had the misfortune of having a son born very early.  (In the piece, the reporter says that he was born 5 months early, but I'm guessing what she really meant was that he was born AT 5 months - 23-24 weeks, as opposed to 20 weeks gestation.  I could be wrong, and people have assumed that Becca's birthweight is a typo before, but I think I most likely would have heard about a surviving 20-weeker born in the mid-state area.)  They didn't choose this path, and they are doing everything they can to give their son the best shot at living up to his potential.  But then, due to "budget cuts," the state pulls the rug out from under them, and they will likely have to begin choosing from among the many therapies, appointments, and/or procedures, all of which are contribute to giving little James the best shot at a normal life - and, if you have to think about it in economic terms, the best shot at becoming a contributing member of society, functionally and financially.  Sure, in the article you hear that a local business collected $1,400 for the family, and that's GREAT, but let me tell you that $1,400 will not go far.  $1,400 won't even pay for 2 weeks of Becca's co-pays and excluded expenses.  

I don't mention Becca's expenses and the community contribution to the Hambys to ask for pity or contributions.  I mention it because it's evidence that we need a systemic, societal approach to caring the members of our community that cannot care for themselves.  I don't want to get into a debate about people who other people think could or should  care for themselves; I'm talking about people who flat-out can't do so.  Good Lord, if we, as the wealthiest society in the world, can't care for disabled kids, what in the world is wrong with us?  What's next, shooting golden retriever puppies for the fun of it?  To me, this is one of the basic functions of government: to serve as a safety net for those members of society who can't meet their basic needs.  And I'm also not talking about having the state pay to send Becca to Disney World or, oh, Harpeth Hall (though, HH folks, if you are reading and want to send a full scholarship our way, I'll be happy to share Becca with you in, oh, 7 years ;) ).  I just want to keep my baby from being cut off from her health care.  

Our private insurance does not cover any of Becca's feeding supplies (about $700/month) or her special formula (also about $700/month) or her growth hormone shots (about $1,000/month, but that will go up as her dosage increases), and it leaves us with 20% of nearly all covered expenses.  20% of her therapy costs is $822 a month (yes, that's the 20%, not 100%), leaving us with a grand total of about $3200 a month.  Add in a pediatrician appointment, a visit with one of our nine specialists and a lab test of some sort (which would be a pretty slow month doctor-wise), and we're easily up to $3500.  Multiply that by 12, and you've got $42,000 a year.  What "normal" family can afford that kind of cash?  Even if I do (crossing my fingers) find a job, we'll have to pay to put Becca in daycare full-time (and only certain daycares would accept her, mind you), which would run somewhere around $10,000 a year in these parts, which quickly tops out above the top range of my earning potential- and I have a master's degree.  We have been very, very, very fortunate to be able to keep our TennCare coverage this year (for Becca - John and I don't qualify, and that's fine with us) because of our modest income, but next week I have our recertification interview.  We could quite possibly lose our coverage in January, too.

Makes you think, doesn't it?  Especially in a week in which Congress voted to extend tax cuts to the wealthiest Americans, essentially giving them $36,000,000,000 back in their overstuffed pockets, and to exempt the first $5,000,000 of an inheritance from estate taxes.  Perhaps unfortunately for me, I don't know anyone who will benefit greatly from these breaks, as they are reserved for the wealthiest 0.1% of Americans.  

I count among my readers some very conservative, very compassionate, very faithful and very generous people, whom I know interpret the role of government differently than I.  Many of them would say that it's best to let people keep their own money so that they can distribute it to charitable causes as they see fit.  And many of you actually put your money behind your words.  But I guess I'm a realist (some of you will no doubt see me as a pessimist): I think that when left to our own devices, we hoard more than we need and we, the collected members of society, fall short in helping others meet their basic human needs.  Often charitable giving is heartfelt and helpful, like the $1400 given to the Hamby family...but it's still a drop in the bucket for this family, and there are many more families like them.  I have a dear friend who has long been a political and theological conservative, but lately she has tended to vote more Democratic because, in her words, she "had to stop voting based on how [she thinks] the world should be," with folks, churches, etc. giving enough to help everyone who truly needs it, "and start voting based on how the world is."  

I would love to be proven wrong.  If you count yourself among the super-wealthy (or if the IRS does), adopt James.  Or Dax.  Or Bella.  Or Mary Farris.  Or Becca.  Cover their expenses.  Go for it.  I dare you.  But I'm not holding my breath for you.  

To the rest of you, who may not be plotting the best way to pass on your $20,000,000 estate to your kids, all I ask is that you keep these issues in mind as you ponder your political inclinations, as you vote, as you talk with friends.  And if you're in Tennessee, maybe you could contact your incoming state legislators to encourage them to reinstate TennCare coverage for disabled children.  Because, really, if we can't agree to help these kids, I'm afraid there is very little hope for any of us.

Thursday, December 16, 2010

Weekly Weigh-In

Last week8.85 kg (19 pounds, 9 ounces), 32.5 inches
This week: 9.0 kg (19 pounds, 13 ounces), 32.5 inches
Week's change: +150 grams (4 ounces), +/-0 inches
Net change:  +1300 grams (38 ounces), +3.5 inches 

A surprisingly good week, considering she's got a cold, so she's throwing up during the day.  (She throws up with any illness, stomach-related or not.)  It may have to do with the fact that she hasn't pooped in 2 days!

Wednesday, December 15, 2010

1-2-3 Blast Off!

Lately, Becca has been obsessed with space.  It started with the moon, spread to the stars, and then encompassed all things space.  She'll tell you that she wants to be an "AAAA-naut" (astronaut) when she grows up, but I think that with this spacesuit from Aunt Jenny and crew, she makes a pretty good one now.

p.s. Don't forget to contribute to Aubrie's Angels through the link on the right!

Tuesday, December 14, 2010

Aubrie's Angels

You probably remember hearing me talk about my fabulous friend Mollie. She's amazing and hilarious and if you like this blog, you'd probably like hers (maybe even better; she's that amazing). On her blog, you hear about Daxton (who "wasn't ready for the world," born at 23 weeks, 5 days) and Tyler (for whom "the world wasn't ready," the big ole full-term chubster that he is). Each of these boys is in the running for Becca's arranged marriage partner. But on Mollie's blog, you'll also hear about Dax's twin, Aubrie, who was born at 21 weeks and really, really wasn't ready for the world.  Sadly, she only lived in this world for about a day.

For the past two years, Mollie has been trying to figure out how best to commemorate and honor Aubrie's brief yet beautiful life. A few weeks ago, THE idea hit her, and Aubrie's Angels was born.

I've whined mentioned before that having a kid with developmental issues involves a lot of extra costs, even if insurance covers everything medical (which is usually doesn't). With Becca, there is/was all the food we had to special order, the thousands of dollars in gas to get to and from all the therapy and doctor appointments, the special clothes, the adaptive gear, the therapy tools, and the toys.

"Toys?" you say? All kids need toys, right? And most of the kids we know have far too many toys! True, but for kids with special needs the right kind of toys are very important. Preemies and other special needs kids need toys that appropriately stimulate their various senses and specifically work their developing skills. (Think about it: it's not like you can tell an infant or toddler to do 10 reps of a certain motion, like you can do in adult physical therapy. You have to provide him or her with the motivation -- on their level -- to do perform the desired activity again and again.) I can't tell you how many times we've been in a therapy session, and the therapist has suggested and/or asked us to get a particular toy to use in our home therapy exercises. I'm a sucker for any excuse to buy a gift for Becca, but these toys (often premium or specialty brands) don't come cheap. While money doesn't exactly grow on trees here at Itty Bitty Hill, we manage. For many other families, though, the cost of these toys is downright prohibitive, and their kids go without the extra help of these important developmental and sensory toys. So these kids, already at a disadvantage because of their early birth or other special needs, fall farther and farther behind.

But you can help! As one of Aubrie's Angels, you can donate to help provide very special Christmas gifts that will benefit these kids throughout the year. In their first year, Mollie set a goal of collecting 100 developmentally-stimulating toys, and Aubrie's Angels across the country have stepped up to the challenge, almost meeting our goal already! But we'd also love to provide each child with a developmentally-appropriate book to go with their toys...because we at Itty Bitty Hill know the tremendous effect reading with a child can have on all aspects of development. And since I want to make any gift you give to Aubrie's Angels go even further, I am happy to use your monetary donations to purchase Usborne books at cost to give to these special kiddos.

And look what your small (or large!) gift will provide! A gift of $3-$7 will provide a basic learning board book (ABC's, 123's, etc), a visually-stimulating "Find-the-Duck", etc book, a special touchy-feely board book, a first-learning workbook, or -- so important to this population -- a book about going to the doctor. A gift of $10-$12 will provide a deluxe Touchy-Feely book, a first word dictionary (great for kids with communication delays) or the ever-popular Animal Hide-and-Seek, with flaps AND touchy-feely patches, (ideal for a toddler with sensory and fine motor issues).  Your generous gift of $20 will provide The Complete Book of Farmyard Tales, which includes 20 stories with 2 reading levels and a read-along c.d.* I'll have to get this order in soon, so take a minute now to donate securely by clicking on the link below. Thanks for helping to honor baby Aubrie by helping some special kids -- you truly are an Angel!

*The books listed are intended to give you an idea of how far your gift can go. I will work with Mollie to choose books that are best suited for the individual child who will receive them. If you'd like your contribution to be used for a particular book, please indicate it in a comment on this post. Thank you!

Friday, December 10, 2010

And the Winner Is...

Peace Love Ribbon Christmas Card
Create beautiful photo Christmas cards at
View the entire collection of cards.

Card #2! Thanks for all you input! All three designs had their fans, but in the end, the balanced composition of #2 won out. Enjoy the finished product! (And please don't be offended if you don't receive a card in the mail; we are doing family only this year...unless I get a surprise offer of employment from an early Santa. :) ) Wishing you each and all peace, love and joy this Christmas and throughout the year!

Wednesday, December 8, 2010

Weekly Weigh-In (Kind Of)

Well, apparently the "Weekly" part isn't even accurate these days!

Here's a recap of the past few weeks:

November 17 (regular Wednesday weigh-in): 8.95 kg (19 pounds, 12 ounces), 31 inches
November 24 (regular Wednesday weigh-in): 9.05 kg (20 POUNDS! Wohoo!), 31 inches
By the time we arrived at Grandma and Granddaddy's house for Thanksgiving that Wednesday night, Becca was running a little fever. It got worse over the next few days, peaking at 103.8 that weekend. By Saturday, I was on the phone with the pediatrician. From Saturday afternoon to Sunday evening, she was fever-free. Sunday night, the fever came back, and on Monday we went to see good ole Dr. Rawls. As always, they weighed her when checking her in:

November 29 (sick visit): 8.90 kg (19 pounds, 10 ounces) (We didn't do height.)

That meant that she was down 6 ounces in 5 days. Yuck. (Perhaps I should note here that when Becca gets any kind of illness, even if it's not stomach-related, she stops "tolerating her feeds," meaning that she throws up every night or morning...hence the loss of weight.)

The good doc determined that Becca had a "non-specific viral illness" that we just had to wait out. She wasn't feeling horrible, just tired, extra whiney and a little pitiful. I decided that when 2-year-olds get sick, their threshold for 2-year-old behaviors gets lowered. Anything could set off a tantrum, and heaven forbid if I didn't "Hold you!" all day long. I can't blame her, though. When I'm sick my threshold for 2-year-old behaviors drops, too. We watched a lot of t.v. but muddled through mostly in one piece.

On Wednesday, she was still running the fever (on day 8!), so we couldn't go to therapy, so we skipped the weigh-in as well. (It's usually done all in one trip.) Her fever finally broke for good on Thursday, and now she's still tiring quickly but doing fine. We never saw any respiratory symptoms, and the only GI symptom was directly related to the tube feeds (which we ended up slowing waaaaaaay down and mixing with Pedialyte to help with her toleration). She's back up to full feeds now, and we're back to our regular routine, which brings us to today's measurements:

December 8 (regular Wednesday weigh-in): 8.85 kg (19 pounds, 9 ounces), 32.5 inches;*

Which leaves us with a grand total of 100 grams (3 ounces) lost since November 17.

And that puts our net change, exactly 5 months from the day her g-tube was placed and about 4 months from the time we started growth hormone injections, at a weight gain of 1150 grams/35 ounces and a height gain of 3.5 inches.*

Even with the up and down months like this one, I feel like putting the tube in was a good decision. And the growth hormones are DEFINITELY a good decision (especially since she seems to be experiencing very few side effects from them and usually doesn't even mind the shot.) She's moving through clothing sizes now (currently in 12 months, but bumping up to some 18 months for the length), whereas she spent an entire year in 3-6 month clothes. That may not be the most scientific measurement, but from a mommy's point of view, that's a very good sign! Developmentally, she's picked up a lot of steam, too, and while it's impossible to pinpoint the tube feeds as the cause, having more consistent nutrition has definitely helped. If I had it to do all over again, I would probably push to have the g-tube placed when we were considering it in the NICU, but we had no way of knowing what the next 2 years would look like. Still, I'm glad we got it when we did - almost in the nick of time from some serious nutritional deficients. All's well that ends well, I guess.

*I highly doubt this height measurement is accurate.

Tuesday, December 7, 2010

Christmas Is a Season, Not a Day...

...and that's what I keep telling myself as the days of December click along without my getting ready for Christmas! Well, I guess I'm not doing too badly, thanks to my on-the-ball husband. (Okay, I admit it. His organized neuroticism can help me out at times.) We got the house decorated last weekend, and we've established a family Advent calendar tradition, which involves M&M's, making for one very happy little girl. I've actually got nearly all our shopping done - just some photo presents left to produce and order for the grandmothers. And that brings me to my final big project for the season: The Family Christmas Card.

Even though we are on major austerity program at the Hill House these days, I HAVE to send out at least a few cards. I always agonize over our Christmas cards, which I've only started sending since Becca was born. (That means that "always" means the past 2 years...which often feels like my entire life!) She's just so darn cute and adorable and any card I'm going to send out has to reflect her beautiful face and soul, and, frankly, not many card designs are good enough for my girl's face. (I'm sure you other moms know what I mean.) Not to mention the fact that, hey, I'm a pastor and see the card as an opportunity to give a gentle reminder of the true meaning of Christmas. (I'm not opposed to either the traditional secular Christmas symbols (Santa, etc) or to more generic holiday cards (especially since not everyone on our card list celebrates Christmas), but I do notice the theological nuances to certain card designs.)

But this year is easy! First off, our friend Jessica Kelley snapped some AWESOME pictures of us at in a somewhat impromptu photo session at Crockett park. When I saw this picture,

I knew I was looking at our Christmas card photo. So perfect. Such a Becca face. So full of joy and that Advent sense of expectation. And her bow even looks good. (I make them myself, so I get a little picky about that.) Usually just selecting the picture takes days, but before I even saw the rest of them (many of which would have made adorable cards, too), I knew this was the one. Step one, done.

Next I had to decide where to have our cards printed. I've used several different websites in the past, but have generally been happiest with the products I've gotten from Shutterfly. I particularly love the Super Hero birthday invitations I got from them for our own Super Baby's 1st birthday party. And so when I heard about this blog promotion, I knew we had a winner. You know how I love a good deal...and good pictures of my kiddo! Step two, done.

And here I am with step three...and I need your help. I've got to select a card design. This is usually the hardest step because it's difficult to find a design that works well with the chosen image, is theologically appropriate and matches our family's style (not too fancy or formal). However, Shutterfly's 2010 collection is so vast and varied that it was hard because there were so MANY great options! (You can see them all by clicking here (for Christmas cards) or here (for general holiday cards). I've narrowed it down to 3 options:

Card 1: Peace on Earth (their design names)

Card 2: Peace Love Ribbon

Card 3: Mod Love

I tried to share links for you to see them each with Becca's picture, but I can't figure out how to do it. It may not be possible (so as to keep you from just stealing their designs). But I bet you can use your imagination. Please do, as I'm letting my readers pick our family's card! I've set up a poll; it's in the right sidebar. Take a second to vote for your favorite design, and that's the one I'll order and send! Why, you ask, is such a control freak letting readers, many of whom are strangers, pick out our family's card? Because, of course, they are all adorable, so you really can't go wrong! :) Besides, I may never be able to decide without you. (In years past, I have gotten multiple designs simply because I can't pick a favorite. I might have issues.) I'll close the poll on Friday and call step three done.

Once you've picked my card, go check out the others to select yours! And remember, as long as we get them out in the 12 days of Christmas (which, by the way, begin with December 25th), we aren't late! :)