Weigh In and GI Update

January 26: 9.6 kg (21 pounds, 2 ounces), 33 inches

February 16: 9.8 kg (21 pounds, 10 ounces), 33 inches

Three weeks' change: +200 grams (8 ounces), + 0 inches

Net change:  +2100 grams (67 ounces = 4 pounds, 3 ounces), +4 inches

So we're still moving along...a slower pace, but still gaining, which is better than we did last fall.  For the next couple of weeks, she will be likely to have gained about her coming home weight (from the NICU at 5 1/2 weeks past her due date) since we got the feeding tube in July.  I don't remember exactly how much she weighed when we brought her home, but it was somewhere around 4 1/2 pounds.  

Two weeks ago, we had an appointment with the GI doc.  I'm not sure if I mentioned it on here or not, but we changed her reflux med from Zantac to Prevacid about a month ago.  We didn't go to the doctor then; it was all done over the phone and Vandy's messaging system.  I spoke only to a nurse but ASSUMED that she was actually talking to the doctor, or at least that the doctor was at least aware enough of the situation since he was the one (again, I assumed) was writing the prescription.  

Silly me.  When he asked how everything was and I launched into how the new med wasn't really helping (b/c she was still vomiting), he stopped me as he looked back over her chart again...because he didn't even know that we had switched meds.  When I mentioned it, he thought our regular pediatrician had done it because HE DIDN'T WRITE THE PRESCRIPTION.  He had no idea that I had even had a minor battle with the nurses to get anything changed.  What.  The.  F.  Since then, I've pulled up the electronic copy of the prescription (via the aforementioned messaging system, which is really handy), and it was NOT written by a doctor. I can't tell if the prescriber was a nurse practitioner or a just another nurse b/c it's written in some secret code (something like "written by XXXX in accordance with policy #78431598713.1").  

Let me be clear.  I love nurses.  I love nurse practitioners.  I have nothing against them, and would have no problem seeing one myself (with the exception of OB care since I'm in the major leagues there).  I would be happy to send my sweet husband to an NP.  The NICU NP's saved Becca's life on a regular basis.  I'm a fan.

BUT - I'm going to go out on a limb here and say that if a child has specialists from NINE (9) different departments, maybe, just maybe, that patient needs to be treated by the full medical doctor who knows her and her history.  Call me crazy.  I'm quite sure whoever I was speaking with did not take the time to read Becca's entire medical history or her chart.  I know how long it takes STAR panel (the medical charting software they use) to load her chart because I often have to make awkward small talk with the providers while they wait.  So maybe, just maybe, when I send a message to the doctor about a significant part of my daughter's medical care and well-being, that doctor should at least lay eyes on the message, consult with the nurse, etc, even if he is too busy to actually take the time to call me himself (which, mind you, several of our doctors do).  But our doc did not even KNOW that we were having issues.  

You can guess how blunt I'm going to be in the message I'm sending them tonight.  "PLEASE MAKE SURE THAT DR. MOULTEN SEES THIS MESSAGES PERSONALLY AND RESPONDS TO ME DIRECTLY."  At least I'll say "please," right?

Wow, I'm more upset about this encounter than I had realized.  Thanks for you patience with my blog therapy.  :)

Still, even with the less-than-stellar communication and complete lack of teamwork, the medicine switch hasn't been a horrible thing.  But it's still not working.  This week, Becca has thrown up 4 times.  That's maybe an improvement, but it's still way too much.  Yes, she's still gaining weight, which is the first difficulty with the vomiting (the sheer loss of calories), but she is still vomiting a lot.  And I think it's starting to have a psychological effect on her.  I think I've told you that she makes Baby Rosie throw up occasionally, and the other day she told me that Elmo was crying because he was sad because he had thrown up, and then she had to carry him around and comfort him for several minutes or "he" would start crying again.  As if there is already enough going on in her life to give her an eating disorder.  That's just pitiful. 

So here's what we did: the nurse had started us on 7.5 mg of Prevacid twice a day, and Dr. Moulten upped it to 15 mg twice a day.  Prevacid is a stronger medicine than Zantac, and the doctor (unlike the nurse - I specifically asked her) was able to explain how it might actually help reduce the vomiting.  Zantac basically just reduces the pH in your stomach so you don't have as much acid floating around.  Prevacid (and Prilosec as well, I believe) actually shut off the acid-producing pump in your stomach by blocking the receptors that tell it when there is food in the stomach, starting it up.  It still produces some acid, but not nearly as much.  And less acid in the stomach makes for a healthier esophageal sphincter.  (That's the muscle band at the top of the stomach that opens and closes to let food in - and vomit out).  If the sphincter is inflamed (which Becca's is), it is looser, so it's easier for things to pop back up.  That's why she is way more likely to vomit when she gets choked up on something - once the reflex is triggered, there's really not much to stop the contents of her stomach from making their reappearance (much like my innards when I was pregnant).  I'm also guessing that the fact that she had a tube running through the sphincter and into her stomach for 18 weeks of her life, including 5 of them when she was a past-term infant, hasn't exactly helped to strengthen its muscles.  We don't actually see much textbook reflux (or at least we didn't in her tests), but when she gags (which happens frequently, given her sensory and feeding issues), you better get out of the way (unless you are SuperMom or SuperDad, who run TO the puke, which is what makes us Super).  

So - the Prevacid should help get the sphincter healthier and keep food down.  But like I said, she's still puking.  And here's the ironic part - 3 of the past 4 vomits have been triggered by her choking on her Prevacid quick-dissolve tablet.  I know that either Prevacid or Prilosec is availing in a liquid form because I have friends whose infants have taken it, but apparently TennCare won't pay to have medicines compounded into liquids anymore, so we may be stuck with the puke pill that is supposed to stop the puking.  Awesome.

I think the next step is for me to send a polite-yet-firm message to the office requesting to speak with Dr. Moulten himself.  I think (because he told me this would possibly happen) that he's going to add the Zantac back in and see if together they can settle her little tummy down.  

And then we've got to get back into feeding therapy.  Yes, we took a little (3 week) hiatus.  Long story short, we are switching therapists, not because of any particular issues but because of insurance changes, etc.  Once we get all the paperwork in, Becca will start getting feeding therapy AT school, which is awesome because it means that they can actually do part of the session in the classroom during snack or lunch, so she'll have her peers around to help encourage her.  (And it's also awesome because it's done during school hours so we don't have to take an entire morning to trek 80 miles round-trip to Vandy every Friday - woot!)  Both of her former feeding therapists have been happy with her actual chewing, but I think there are some issues there.  There's the gagging, but we're also noticing (because we get to see her meals multiple times) that she's swallowing a lot of things whole.  She threw up in the bath tonight (got choked on some water) and started playing with the mini pepperonis.  Niiiice.

I'll keep you posted.  If I had known GI issues were going to be so much trouble, maybe we wouldn't have added them to the cadre of doctors this summer.  Ha - if only it worked that way, right?  :)

p.s. John took down the crib tonight.  We had left it up in her room in case the switch to the big girl bed didn't go so well.  She never needed it - and now there's no going back!  

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.

An Appointment a Day Keeps the Doctor Away?

Oh wait.  That doesn't work.  But we tried it this week.

Monday: First visit to WAVES.  See two posts ago for more details.  Definitely a fun, fun appointment.

Tuesday: Endocrinology.  Regularly scheduled, also turned into hospital follow up.  See detailed description below.

Wednesday: Physical therapy with Ms. Ashley at 100 Oaks.  I may have said this before, but Ms. Ashley is wonderful, though she is definitely no Ms. Jane, but the facility is a magical playland.  I want to have my birthday party there.  Zip line, foam pit kind of thing, a track around the room for riding toys, a mini basketball court, and fancy stairs with - how to explain this? - colored water in the walking surface that moves around when you step (make any sense?).  Becca had a hard time focusing on the task at hand (whatever the task was at the moment), but, frankly, so did I.  So fun.  Now that Itty is walking, we are working on stooping to pick up a toy and learning to use our feet (to kick, etc.).  It involves putting stickers on the tops of her shoes and kicking beach balls.  PT is fun.  (And this makes me feel better about spending Becca's gymnastics money on repairing the leaking water main.  Homeownership is not fun these days.)

[Just for the record, I am ignoring my daughter, who is standing at the back door (I am on the deck) screaming, "Mama! Mama!  Mama!  Mama!"  I wonder how long it will take until it bothers John, and he rescues her.  (He is "primary parenting" right now, as I like to call it.  Thank God for Fridays.)]

Thursday:  Occupational therapy evaluation.  Good eval; still looking at weekly therapy whenever a spot opens up.  Fine motor still looks good, but we'll work on sensory issues and some related feeding issues.  (OT is the primary discipline for working with sensory integration, the kind of therapy required for kids with sensory processing disorder, or "SPD.")  I'm still crossing my fingers that Karla will miraculously decide to transfer over to Vandy, but for now, I'm waiting for a call.  For sanity's sake, I might hold out for a slot that piggybacks on PT.  Therapy exhaustion is a very real issue, and not just for the kids.  There's only so much back and forth and home therapy exercises you can do before you all burn-out.  But hopefully that will open up soon.

Friday:  Feeding therapy, first session.  Again, no Ms. Caroline or Ms. Roxi, but I think Melissa will work well with Becca.  She did convince her to lick a piece of peach drenched in syrup, so that was progress.  We'll do 20 sessions once a week, which is down from the 2 per week we were doing, due to availability - as in, we are only able to get into therapy because being inpatient for so long (and having a fabulous inpatient therapist) bumped us up - not even kidding - 40 spots on the waiting list.  Wow.  Again, I say: pediatric feeding therapists, get thee to Nashville!  We need you (and your GI buddies).

Okay, now back to endocrine.  The good news is that we don't have to test her blood sugar anymore, unless we see something suspicious.  But the bulk of the appointment was spent talking about growth (our regularly scheduled programming, right?).  Now that she is two, beginning therapy with growth hormone is an option.  Once we begin therapy, we will continue it until her growth plates close around age 14.  (Yes, that's 12 years.)  After reading Becca's "bone age test," which is just an x-ray of her wrist, looking at whether her growth plates are closing more or less quickly than average (they aren't), Dr. Lomenick's best (highly) educated guess is that her full adult height, without the help of growth hormone therapy, is around 4 feet, 7 inches.  Yikes.  (Note to anyone reading who may be 4'7" or shorter: I am not saying there is anything wrong with being of very small stature.  But I would like to spare Becca some challenges in life, since she's faced more than just about any of the rest of us in her 2+ years.  My guess is that you would agree.  And I'd love to her your input either way.)

To clarify: Becca's body does produce growth hormone effectively, but it likely doesn't use it efficiently, and even if it did, she had such a disadvantage at birth (you know, being 9.5 inches, stretched out head-toe), that she needs extra hormone to help her reach a more manageable adult height (hopefully somewhere around 5' - 5' 2").

John and I have decided that, assuming our insurance will cover it (according to the docs, they have never had a company deny it when it is specifically for kids who were small for gestational age at birth - but I'll believe it when I see it!), we are going to begin therapy right away.  We'll have to give her daily subcutaneous injections.  (Subcutaneous means "under the skin;" they aren't injected directly into a muscle, like many vaccines are).  "SubQ" injections, like the ones I gave myself while I was pregnant, are less painful, though they are still no picnic.

We could have decided to wait a couple of years to begin so that Becca would be better able to understand why we were giving her all of these shots, but there are several reasons we want to go ahead and get the show on the road.  The most important is that the longer you give the shots, they more effect they have.  (Makes sense, right?)  If we're going to do this thing, let's do it.  Kind of how we approach much of life.  This way we'll also see faster results (again, makes sense).  After seeing her at school on Monday, so so so so much smaller than her peers, we agreed that it would be good to at least help her a little before kindergarten.  Dr. Lomenick thinks that if we start now, she might at least be near the bottom of the growth curve by the time she is 5 or 6.  (By the way, she is still hanging out 6 inches below the 3rd percentile.  I'm serious when I say she's not on the charts.)  And finally, if we start now, she'll be used to getting the shots.  She won't like them, I'm sure, but she is a tough kid who gets accustomed to doing difficult things, so I think it's wise to go ahead and use that adaptability to her advantage, rather than waiting until she is a more inflexible 4 or 5 year old (when changes or unpleasant experiences tend to be more difficult to introduce).

As Dr. Lomenick said, though, the question was really about when to begin treatment...because the question of whether or not to treat her, when we have a therapy that is safe and effective, and at least attempting to help her grow taller than 4' 7", is really a "no-brainer."  (Seriously, his words.  Very rarely are doctors so forward in sharing their opinions on such matters.)  And he's right.  I hate the idea of giving her shots, but I know we can do it, and when you start thinking about independent living at 4'7", it gets difficult.  Not impossible, of course, and I have no doubt that Becca could manage just fine, thank you, but that's a lot of adapting.  For example, imagine someone the height of an average 9 1/2-year-old girl (pre-growth spurt) trying to see over the steering wheel when driving.  That's tough.  So we're going for it.  We should hear back from their office with clearance from insurance by next Wednesday.  And we had better have clearance from insurance...because growth hormones are very expensive, especially 12 years' worth.

Next week, miracle of miracles (okay, not really - it was just a lot of rescheduling on my part), we have no appointments, because we will (probably) be going to camp!  John is definitely going to lead a week at Aldersgate Camp (his old church camp and his favorite place in the world), and I'm hoping that Becca and I will get to join him for a few days, God willing and the creek (aka the bog from the leaking water main) don't rise - and the plumbers cooperate.

That's all well and good, but I'm pretty sure 90% of you are here for the pictures.  How about this gem for today, then?

Mommy and Becca, mid-silliness

S.W.A.M.P.E.D...for Good Reasons

No, it doesn't stand for anything, but I just wanted to make the word longer.

Sorry to me MIA. We have been swamped around here.

Silly me scheduled a book fair the week of the March for Babies, so I was running around like a crazy women last week getting ready for and, um, executing both events. We had a great time at the March for Babies! We had 18 people on Itty Bitty Becca's Team come out for at least part of the festivities, and as a team, we raised over $1500! I haven't gotten final word on what the entire event raised, but I feel like we did our part, thanks to all of you guys who donated, bought t-shirts, and walked with us! (If you bought a t-shirt, by the way, I'm hoping to mail them out this week. Sorry I'm a bit tardy with them. If you haven't heard, we've been swamped around here.) I'll give the March for Babies its own post at some point, complete with pictures. I also need to post some pictures of Becca in her Easter finery, too - don't think I've forgotten! Anyhow, the book fair and the march (and the awful sinus infection that resulted from the combination of little sleep and lots of pollen) have kept this SuperMom pretty busy, but so has something else...

We're moving!

This summer, John will become the associate pastor at Christ United Methodist Church in Franklin, Tennessee. We are really excited about this move. We will definitely miss folks in Bethpage (and if you are reading this blog, you can be assured that you are one of folks we will miss most - I know who you Becca fans are!), not to mention the spacious parsonage and the vast and gorgeous yard, but we Methodist ministers do tend to stay on the move. I, for one, am beyond thrilled that we get to stay in Tennessee (there was some question about moving back to Kentucky for a while there), though I know that John will continue to miss his beloved commonwealth. I'm just thankful that even though we're from different states (and, more importantly as Methodist ministers, annual conferences), Kentucky and Tennessee border each other, so we'll easily be able to get back to the Bluegrass to visit friends and family. But enough caveats. Let me tell you some of why we/I am thrilled about this move:

• The staff at the new church - The lead pastor is Carol Cavin-Dillon. Um, to say that I'm a fan of Carol would be quite an understatement. Carol was my pastor in my late teens and early 20's, in a time of much emotional turbulence and general confusion. Carol then became my employer (and the best boss ever) when her son was born and she returned to work, boldly leaving sweet Tate in my care. Carol pointed me towards Candler and the most amazing graduate school experience I could imagine (complete with a husband by the end of it). In fact, Carol secured said husband for me by marrying us...and by dolling up her son to be our ring bearer...and delivering the best wedding homily ever. So, yeah, I'm a fan. A fan +, perhaps. I'm really excited to see John and her working together because I think their "gifts and graces" (as we say in preacher-talk) will really pair well together. AND the rest of the staff is fabulous as well. I went to high school with the youth minister, Paul Bonner, and he and his family are incredible...not to mention a lot of fun. We grew up in the same youth group as well - I think he actually graduated high school the year that Carol came to our church. (His mom, incidentally, was my friend in faith for Confirmation, and one of her paintings hangs in our bedroom.) And the mother of another friend of mine from high school is on the administrative staff. Crazy connections. I'm really excited about meeting the rest of the staff as well. The music minister literally helped write one of the UM worship books.
• The church itself - is one that I'm very excited about attending. When you don't get to pick the church that your family attends (assuming that you'd like your family to attend the same church), it's kind of a crapshoot regarding whether or not you are serving at a church you would choose to attend. This one (like Bethpage), I'm really excited to be a part of, and now that the doctors have given us the green light to mingle with the world, I'm looking forward to getting involved...and to signing Becca up for the Mustard Seed Choir when she turns 3. How cute is that name? Perfect for our tiny girl.
• The area - Franklin is much closer to Nashville than Bethpage. That means, of course, that it's closer to Vanderbilt, to family, and to women I've been friends with since I was 10 years old. That's exciting. The church itself is just a few miles away from my parents' old house. (They have since retired to East Tennessee.) I used to drive by the church all the time to get to my high school boyfriend's house. I worked at the Target 1.3 miles away. (Yes, I have been a fan of the big red store for quite some time.) Really, it's like going home for me.
• However, we can't afford to buy a house around there, so we've found another great area in which we are hoping to buy a home. Spring Hill is south of Franklin and actually straddles the county line. It's full of young professionals with young kids and has not only a Target, but a SuperTarget. I can just hear Kristen Wiig proclaiming, "Heaven has a TARGET!" (Wow...they really should pay me for these endorsements.) We're looking for houses on the Williamson County side of town, since they have the best public schools. This is particularly important to us because a) we value education; b) we're public school kids; and c) Becca rolls to the public school system for her special ed services when she turns 3 - which, unbelievably, happens next summer! Whoa! (Services for kids 0-3 are provided through Tennesse's Early Intervention System; once kiddos turn 3, it's the local school system that provides services, like special education pre-k's for which Becca is likely to qualify.)

That's the highlights. (Funny how my highlight reel is always at least as long as regular posts, huh?) Of course, the difficult bits will be the actual moving process (though it's always amusing to hear what the movers have to say about our, um, extensive book collection), switching therapists (sad!) and dealing with the inevitable insurance issues that come with switching providers (and since Becca's therapy costs somewhere around $4300 a month, we've got to make sure we've got the kinks worked out), finding her a new inclusive preschool to start a few days a week this summer (we had one lined up in Gallatin), saying goodbyes to dear friends up here (but we won't be far away, remember!), and, oh yeah, finding a house, which is where most of our "free time" has been going lately. We've made 4 trips down to Spring Hill (1 hour and 15 minutes away) with Becca in tow, scoping out the area and looking at houses, and we're really hoping to get something going soon. (And just in case you are curious, we don't qualify for any of the tax credits because we have been out of our house for only 2 years - you have to have not owned a house in 3 years in order to qualify for the first-time buyer credit (which, oddly, has nothing to do with actually being a first-time buyer), and we obviously haven't lived in our own house for 5 years to qualify for the step-up credit. This scenario is very difficult for my discount-oriented mind to swallow.) So if you see of any houses for sale (for cheap!) in Williamson County, give us a shout! We've got a wonderful realtor, but things like houses for sale by owner aren't really publicized in the usual way, so if you are down that way, be our eyes for us!

I'll keep you posted, and I promise more Becca cuteness very soon! Here's a little dose for you...further evidence that we take early literacy skills seriously in the Hill house:

p.s. All this busyness has served as a wonderful distraction from the emptiness of my womb. Trying a new medicine -- no, an old one -- Metformin. We'll see how it goes!

Healthcare Reform

Well, it passed! John and I watched C-Span for longer than I'd like to admit to you, watching debate (much of it silly parliamentary stuff, along with enough rabbling to evoke the British Parliament at work), and I nearly cried when the bill finally passed. Tears of joy, that is.

My lovely readers obviously know where I stand on the bill. It's not perfect, it's not far-reaching enough, and it really only addresses the insurance side of the equation (and not topics like tort reform). It's not so much healthcare reform as it is insurance reform. So why is it important to me? Because in this case, insurance reform means reform of disparities of access to healthcare. And in this sense, insurance reform IS healthcare reform to many people, like the 32 million who will now have access to health insurance, and thus, access to healthcare beyond emergency rooms.

And yes, this bill does benefit my family. Becca can no longer be denied coverage because she is, as a friend wrote, "a walking pre-existing condition." (Okay, for now she's just a cruising and crawling pre-existing condition, but you get the point.) And when the full plan goes into effect in 2014, I will no longer be denied coverage for my pre-existing condition (almost dying in pregnancy). Becca won't be kicked off her plan when she reaches her $2,000,000 lifetime cap (remember, she's halfway there already). Eventually (assuming we don't have a massive increase in our family's income), we will receive subsidies to pay for our health insurance (because we make less than $88,000). And, diagnosed worrier that I am, I don't have to worry about how we will pay for treatment if one of us is in a terrible accident or is diagnosed with cancer. I just have to worry about everything else that goes along with those awful occurrences.

But that's not really why I am so excited about this bill. Our family would get by. We have a great support system, and while we are not rich, we manage and would continue to do so. I am excited about this bill because in many ways (not necessarily every way), the ends that it is seeking to achieve are simply right. I know that is a somewhat rude thing to say in this climate of partisan vitriol. I do try to respect and listen to all reasoned and factually correct positions on the issue. But this is where I come down on it: it is simply unjust that people in the U.S., the wealthiest nation in the entire world, cannot go see a doctor when they are sick because they cannot afford it. That is simply wrong. It is flat-out wrong that people who have paid their premiums for years are dropped by their insurance when they get sick. It is flat-out wrong that kids born into this country with a medical condition (be it prematurity or asthma) are denied coverage (and remember, coverage = access to care).

I know this bill isn't good news for everyone. Some of my friends who work in higher-paying industries will see some additional taxes (individuals making more than $200,000 and families making more than $250,000, I believe). Theoretically, I guess, insurance companies may see lower profits, even though they will increase their customer base tremendously, because the bill includes a minimum of revenue that must be spent on actual services to enrollees. And larger companies would face fines if they don't provide insurance to their employees. Folks who are on employer-provided insurance may see premiums raised, but, seriously, have you seen how much they are being hiked anyway? When in full force, the bill will limit these premium increases.

I don't know enough about physician billing to fully understand how it will affect our friendly doctors (and trust me, I want to keep doctors happy - we looooove doctors at our house!), but I do know that there are incentives for new medical grads to go into primary care, which is by far the lowest paid area of medicine. (Seriously, I see a lot of doctors and a lot of EOB's, and our wonderful pediatrician bills at a fraction of the cost of the specialists...but she's our go-to and the one holding all the care together. Seems backwards. Plus, she's awesome and reads this blog, and now I'm just plain kissing up. But she is awesome.) I realize that specialists usually have additional training years, but really, the pay difference is so great that we have a primary care physician shortage in our country...so these incentives are a good thing.

I don't think I'm close-minded. I know that it is very much possible for you to agree with the ends that I see as justice (that is, helping everyone in our country to have access to quality healthcare) and still not see this bill as the appropriate means to this end. And, again, I don't think it's perfect. Not even close. But frankly, I no longer expect perfection out of Washington. I'm not sure why I ever did. Our senators and representatives are just human, after all. And in a messed-up two-party political system. But it's what we've got, and I've learned that you've got to do what you can with what you've got (while trying to make improvements) instead of holding out for perfect. So it's a start. And I think it's a big step in the right direction. Time will tell - and I think that's an another important point.

There are lots of folks on every side of the issue making projections about what will be wonderful and what will be horrendous about the bill, but the truth is, we never know exactly how a piece of legislation this complex is going to play out. And I don't think that is a fault of the bill. I'm just saying that we can't predict the future. Make projections, yes. And that's very important. But I think that maybe we should all take a deep breath before we run for the hills. Let's see how it goes. And, in the meantime, let's celebrate the parts of the bill that I think we can all agree on: more kids will be able to get more care. Families fighting cancer won't have to declare bankruptcy to pay off medical bills. And grieving families of a terminal patient won't get a rescission letter from their insurer. (And yes, I do have a friend who's husband was dropped while he waited for a heart transplant. Wow.)

There. I've had my say. I'm happy about this bill, and I hope you are, too. I would love to hear what you have to say about it, but please, please, please be kind and check your facts before you comment. I have a habit of deleting comments that are not respectful or are blatantly inaccurate. Let's see if we can all play nice. And if you want to learn more about the bill from some relatively balanced and unbiased sources, check out these links.

From the BBC: http://news.bbc.co.uk/2/hi/americas/8579658.stm

From PBS: http://www.pbs.org/newshour/interactive/static/stories/healthcare-comparison.html

A fun visual explanation: http://www.slideshare.net/danroam/healthcare-napkins-all

From the Wall Street Journal: http://online.wsj.com/public/resources/documents/st_healthcareproposals_20090912.html

More on Preemies and Healthcare

My friend Anne has done it again: hit the nail on the head. If you have a moment, scoot over to her blog and see what she has to say about cost benefit analysis vs. life benefit analysis in healthcare decisions, whether they regard premature infants or elderly adults.

And, no, I haven't forgotten to blog about Christmas - just haven't rescued the pictures from the camera yet...but there is major cuteness coming!

TennCare

TennCare, oh TennCare, I hate you; you stink.

I wish I could wash you away in the sink!

(my apologies to Shel Silverstein)

Actually, I love TennCare. But we're about to lose it. Ugh.

The gist of the issue is that Becca is technically disabled (because of her birth weight, her extensive hospitalization, her delays, and her significant risks for further delays), so she has been covered by TennCare, Tennessee's Medicaid. Since we have private insurance, TennCare has functioned as our secondary insurance, covering several thousands of dollars of bills each year. A specific court case has settled, allowing the state to purge the TennCare rolls of kids (and adults) who qualify for SSI based on their disability but don't qualify for SSI checks because of their parents' income and/or resources (and, mind you, it's not like our one-income parsonage family generates millions). We are appealing, etc., but the end game is that we'll lose the coverage (unless we are reading the guidelines incorrectly). But yes, this means that the grand old state of Tennessee is taking away health coverage for the most fragile of children because, say, their parents both work, or they own 2 cars, or are responsible people and have more than $6000 in the bank. Because apparently $6000 in the bank will cover the nearly $900,000 in bills Becca has accumulated in the first 18 months of life.

This story about our friends, the Sheppards, explains the situation fairly well. When we lose our coverage our medical bills won't be as great as theirs, but we are looking at some significant expenses, particularly with some extensive ear procedures on the horizon and the likelihood of our losing our WIC eligibility based on this development (remember how much Becca's milk costs?).

So, TennCare, I love you...whatever bureaucracy that is breaking us up...I hate you.

Resources for Families with Kids with Special Needs

I've been meaning to write this post for quite some time...you know, to be helpful instead of just whiney. I still hope that it is helpful to families out there, but I'm going to have to throw a little whining in here as well. I'm finally getting around to telling my beloved readers about these resources because it seems that I am about to engage in quite the battle to keep some of them, unfortunately. I'll keep you posted on that, but in the meantime, here's the background you will need to understand the blow by blow that I'm sure I'll share with you -- and, more importantly, a list of resources that have been invaluable to us. I hope you don't find yourself in a situation to need them, but if you do, here's a little help getting started with them. Some programs are specific to Tennessee, but many states have similar programs.

SSI

SSI, or supplemental security income, is more commonly known as disability payments. It is administered through the Social Security Administration. You must go -- in person, I believe -- to the SSA office to apply, and it's important to do it as soon as possible...and that's how we ended up at the SSA office the day after I came home from the hospital (what, 3 days post c-section? and lactating like crazy? good times.) for several hours. Many preemies (and probably all micropreemies) qualify for SSI based on birthweight. If they are larger preemies, they often have to demonstrate other developmental or medical issues to qualify. While a child is in the hospital, payments are made without regard to the family's assets or income, and they are at a standard $30 a month (presumably to pay for things like gas to the hospital...so $30 for a month is laughable when it takes $15 for one roundtrip to your kid's hospital - but hey, $30 is $30!). Once you baby comes home, you have to (by law) contact your SSA office and notify them of a change in status. This is the point at which income and asset limitations kick in, and many families with modest incomes (like ours) do not receive payments.  However, you remain on the SSI rolls for 12 months after discontinuation of payments.  After that, even if you are disabled (according to their definitions) but have too much income or assets (like 2 cars), you are no longer classified as disabled.  Because, I guess, you can buy your way out of your disability.  (Notice the sarcasm?)  The reason that being considered disabled even when not receiving payments is important is that it qualifies you to receive TennCare.

For more info on SSI, visit the SSA website.

TennCare

TennCare is Tennessee's Medicaid. Medicaid is nationally mandated but state-run; in Georgia it's PeachCare; in Kentucky, it's Passport; etc. Chances are your state has been making major cuts in their program. And that is not a good thing (at least not to vulnerable kids like Becca). But I digress. Slightly. Many people qualify for TennCare based on income, but others, like Becca, qualify/ied for TennCare based on disability, the thought (correctly) being that if one is disabled, private insurers will not cover you and/or you will max out your coverage rather quickly (remember, Becca is 17 months old and has already eaten up about 1/2 of her lifetime maximum coverage). If you do qualify for a group plan through a family member's employer (the kind that has to give you coverage if you qualify regardless of pre-existing conditions), like Becca does, TennCare becomes your secondary insurance. So, when we take Becca to only of roughly 16,043 doctors' appointments, we don't pay the $15 co-pay that our private insurance requires; TennCare covers it. When we max out our therapy benefit (say, if your adorable daughter is in 3 different therapies), TennCare kicks in to cover the rest (assuming it's through a doctor's prescription and your case manager approves it). TennCare has been a lifesaver for us. Yes, I know it is abused mightily by some people, but there are also many others, like our family, that honestly need it and use it honestly. Because kids like Becca qualify based on disability, you must first go to the SSA office and apply for SSI (see above) before coverage kicks in - this is why it is so important to go to the SSA office as soon as possible. Those first few days of Becca's life -- when she wasn't covered by TennCare -- cost us a bundle because coverage is not retroactive.  I don't think we had to go anywhere else to sign up for TennCare...it seems like the local SSA office handled it. John, pipe in here if you remember. (He did, after all, amazingly handle all of this stuff and still itemizes every single medical bill or EOB we get. Thank God I married a closet statistician.)

For more info on TennCare, visit their website.

WIC
W.I.C., or Women, Infants, and Children is the supplemental nutrition program that is also federally-mandated and state-run (I think).  Like TennCare, many folks (pregnant or breastfeeding women and kids under 6) qualify for WIC based on income, but some (like Becca) also qualify based on disability.  WIC used to only cover formula (or milk), juice, and cereal for kids, but they recently revamped and expanded the program so that you are able to purchase a (specific) variety of foods with your vouchers, including fresh fruits and veggies (up to $6 worth), whole grain bread, cheese, beans, eggs, and cereal.  Here's a picture of the WIC foods I purchased for Becca last month:

Unfortunately, Becca doesn't eat all of these foods, but I keep buying them in hopes that she will eventually eat them.  She actually did do quite well on last month's produce: she ate some pomegranate (it's hard to see in the picture) and a couple of bites of the sweet potato fries SuperDad made!  I've yet to bring myself to cook the bag of lentils in the center of the picture, but I can say that she's definitely gone through all of her WIC Cheerios, cheese, and eggs - and she even ate a couple of her WIC blueberries today!  Notice the variety of the food - and its nutrition.  The vouchers are very specific; for example, you have to buy bread or tortillas in a certain weight, and the first ingredient must be whole grain.  No Wonderbread for my Wonderbaby!  With our vouchers, I've been able to experiment a bit more with Becca's foods.  It's awfully hard to bring yourself to shell out a bunch of cash to try a new food with her when there is about a 90% that every little bit of it will end up on the floor and/or in the dogs' mouths.  WIC is definitely helping all three of us eat more healthily by changing my overall shopping habits.  I had a friend tell me recently that WIC is one of the few government programs that pays for itself, and I think this is why - because healthier foods and access to basic nutrition, along with the health education classes and appointments that are a part of the program make for better health of the participants - and lower TennCare expenses for taxpayers.  [Just for the record - most people who use these services are also taxpayers.  For example, as clergy, we pay higher taxes than most people (b/c we are self-employed), and we haven't stopped paying taxes just because Becca gets WIC...so us/them rhetoric is dangerous in this regard.]  I don't have data to back this specific claim up, but the friend who shared this with me is quite trustworthy and generally not into big government programs...so I believe him.  And there is plenty of research on the health benefit of WIC, including this gem that stands out to me (wonder why?):

WIC during pregnancy reduces the rate of low birth weight babies by 25 percent and of very low birthweight  babies by 44 percent. (“Federal Investments Like WIC Can Produce Savings,” General Accounting Office,
1992)

The grocery vouchers through WIC are nice, but the real lifesaver for us is in their milk provision.  For most kids Becca's age, vouchers for whole milk would be included, but since Becca needs more nutrition than regular cow's milk, she has a prescription for "therapeutic formula" through her pediatrician and/or the NICU nutritionist (depending on who filled out this month's form).  First it was Neosure (Similac's formula for preemies), and then, for several months, we got vouchers for 15 packages of Pediasure, which has extra calories, protein, vitamins, minerals, etc.  That amount is a month's supply at 24 ounces a day (an ambitious goal for our little girl, but really what she needs to be getting calorie- and nutrient-wise).  With regular whole milk running about $0.02 an ounce and Pediasure costing about $0.22 an ounce, you can see that Itty Bitty's special diet would have been putting a very un-itty bitty dent in our bank account.  We were already getting some help from our favorite Abbott sales rep, Mr. Leo, but still...that sugar milk doesn't come cheap!  And this is why it's important for families with kids with special needs to have access to programs like WIC.  No kid is cheap, but our special kids tend to cost a pretty penny, even for their basic needs.  At our last NICU follow-up clinic appointment, they switched Becca to a new kind of milk with an even higher caloric content: Boost Kid Essentials 1.5.  (The 1.5 is for 1.5 calories per milliliter.  Yeah, that's thick stuff.)  This formula is not sold in stores, so it is delivered straight to the health department for us, and I pick it up monthly.  If we did have to buy it on our own, it would cost about $150 a month, plus shipping.

For more information on WIC, visit their website.  If your child needs special formula (such as Neosure for prematurity or Pediasure for failure to thrive), ask your pediatrician for a prescription and a therapeutic formula form.  WIC is handled through county health departments; that's where you will go for your initial sign-up and pick-up and recertification visits.

Tennessee Early Intervention Services

Miss Cindy is a saint.  Here she is helping Becca "paint" with strawberry syrup...and getting painted herself.  What a good sport!  She comes to our house once a week to work on all kinds of things.  We do a lot of fun physical-therapy-related exercises, practice feeding, work on sensory issues, and periodically evaluate Becca's development, gearing activities to Becca's needs at that time.  The actual content of an early interventionist's visit varies greatly with the child's needs, but in general, they help kids with special needs and/or delays reach their potential.  A lot of their work is training and educating parents about how we can encourage development.  Since so much of a child's development is determined by the time they turn 3, Early Intervention targets kids in these early years in hopes that they can help resolve many of their issues and help them close the gap between their abilities and those of their peers.  Really, though, it's about helping kids live up to their potential, whatever that may be.  Cindy has been great.  She is really creative and encouraging, and she's helped make having a child with special needs not as overwhelming.  And Becca just adores her.  EI can also help pay for therapies for kids without TennCare, so they may soon be our lifesaver in that respect as well!

Every state's Early Intervention program varies, and it's moronically not actually required that each state has a program.  (Services beginning at 3 are federally-mandated.  But the vast majority of development takes place before 3, and intervening early can make a dramatic difference.  I know it has with Becca.)  But most states (if not all) do have an EI program, though many are experiencing drastic funding cuts these days.  This is a shame for many reasons, not the least of which is that it's a fiscal mistake.  If kids like Becca get the help they need early on, many of them would be able to overcome their disabilities.  If they don't get the help they need in the first 3 years, there's a much greater chance that they would continue to be disabled into adulthood - and then require even more government spending through SSI, etc.  It's another one of those programs that tends to pay for itself in the long run.  So if you ever find yourself in a position to advocate for Early Intervention programs, trust me: they are so worth it.

For information on Tennessee's Early Intervention System, visit their website.  If you are looking for specifics on eligibility and/or making a referral, visit this page.  Anyone can make a referral, but they often come through a hospital social worker or case manager or the pediatrician's office.  But, again, anyone, including parents, can refer a child to TEIS, and they will then determine eligibility.  I can't emphasize enough just how helpful this program has been to us.  And it's free.  And they come to your home.  So if you think you might qualify, please, please, please look into it!

Children's Special Services
I actually don't know a lot about Children's Special Services, as we just recently signed up and haven't actually received any services, but here's what I do know.  They are diagnosis-based, which means that they can assist with needs related to specific diagnoses.  Becca is qualified under reflux (GERD), septo-optic dysplasia, hypothyroidism (which we think she's grown out of, but we'll see), and her absent septum pellucidum.  So far, we haven't had specific expenses directly related to these diagnoses (other than her Zantac for reflux, but that's been covered under TennCare), but I believe that if we did, they could help.  For example, if she needed glasses because of her septo-optic dysplasia, they could help cover them.  They may be able to help with her formula if we lose WIC, as well, which would be tremendous.

Here's a blurb about Children's Special Services.  In Sumner County, at least, they are a part of the county health department.


Family Support Services
This is another agency that I don't know much about, but I wanted to at least mention them so that parents in need would know to research them some more.  They provide one-time (each year, I believe) payments to families with kids with special needs for a specific need.  For example, one friend used their FSS payment to install a wheelchair ramp at the child's grandparent's home, where he often goes when mom is at work.  This program is geared toward children and adults who have severe disabilities who need special help in order to live with their families (instead of in some kind of institution).

For more information, visit their page on Tennessee's website.


Until Journey's End

Unlike the rest of these resources, Until Journey's End isn't government sponsored.  It's a private non-profit begun by some incredible people who have their own incredible journey.  From their website:

Who We Are

Our Mission and Vision

Until Journey's End is a 501(c)(3) nonprofit organization whose mission is to provide a support system to families living away from home to be with a loved one in medical crisis.

We strive to achieve our mission by:

• PROVIDING families we serve with practical support such as care packages and financial relief
• PARTNERING families we serve with other needed resources
• PROMOTING service to and support of people in crisis

The vision of Until Journey's End is to provide a support system to every family who experiences the difficulty of caring and advocating for a loved one who receives medical treatment far from home.

_____________________________________________________________________________________

Why We're Here

When God revealed to Jason and Tiffany Evans the son whom they were to adopt, they had no idea what the next several months held in store for them.

Isaac was born at 24 weeks gestation, weighing 1 pound, 8 ounces and measuring 13 inches long, in Canton, Ohio. Since he was unable to be transferred to a hospital in their hometown of Grand Rapids, Michigan, they decided that Tiffany and their toddler daughter, Hannah, would temporarily move to Ohio while Isaac continued to grow. Their stay in Ohio lasted almost 5 months and included the McKinley Grand Hotel, the home of a couple they'd never met before, and the Ronald McDonald House of Cleveland.

Throughout their stay in Ohio, many people, including people they'd never met, comforted and supported their family.

Because of the love, support and generosity of so many people and the desire of the Evans' to serve others, Until Journey's End was created.

The folks at Until Journey's End were great about supporting us throughout Becca's hospitalization.  The are proactive about finding folks who need help; they even found us on their own!  Every few weeks, they would send us a care package with helpful items, like toothbrushes, Target gift cards, and notes of encouragement.  Since they know what it's like to have a child in the hospital for an extended amount of time, they know that support often drops out after a few weeks, but they are there...wait for it...until journey's end.  While they often seek out families, you can also contact them through their website.

Tennessee Disability Pathfinder
This program helps connect families with services based on their needs.  It's not a service provider in itself, but more a navigator and a guide.  They have a searchable services database and trained staff that can help you make sense of it all.  Visit their website, or give them a call at 1-800-640-4636!

Okay, that's all I can think of for now.  If you have any questions or need help finding specific programs (even those not listed above), please leave me a comment with your e-mail address, and I'll be happy to get back with you and help you locate the information.  It can be really overwhelming at first, but once you are used to navigating the system, it gets easier - though not necessarily any less time-consuming!  You'll spend a lot of time on hold, but it's worth it!

Tune in Tonight at Ten!

Nashville folks, be sure to tune in to channel 4 news at 10 p.m.  Becca will be on, along with her buddy Daxton, a 23-weeker!  The story will explain the situation, but it's about Becca's losing her TennCare.  I'll go into details later, but I've got to go set the DVR!   If you aren't local, visit their website for video of the story and possibly more extensive coverage.

Update: Here's the link to the text of the story.  There doesn't seem to be video up, at least not yet.  And, by the way, my face is not quite that round, thank you very much.

Just for the record, we aren't thinking about getting divorced.  That's the other couple.  ;)