Wednesday Weigh-In & GI Update

Last week: 9.9 kg (21 pounds, 13 ounces), 33 inches

This week: 9.85 kg (21 pounds, 12 ounces), 34 inches

Week's change: -50 grams (1 ounce), + 1 inch

Net change:  +2150 grams (69 ounces = 4 pounds, 5 ounces), +5 inches

Becca was sick over the weekend with another NSVI, so the weight loss is not unexpected. (NSVI = a non-specific viral illness, which means that the docs don't know and don't need to know what it is because it's not very serious and they knowing would change the course of treatment.  We've had several of these this winter.  I think it's amusing that there's a technical name for it.)  She's still a little puny but doing fine and no longer contagious, just a little more, um, opinionated and tired than normal.  

The second half of last week and this this week have been a little crazy as I've had to work with several of Becca's care providers and suppliers in order to get things straight.  (Yes, Becca has suppliers.  And we had to switch some of them around due to insurance changes (not doctors, just her dealers).  It reminded me of why I'm not working full-time these days!  We also ended up in a feeding supplies crisis, as we still don't have the feeding bags that we needed on Monday, 'cause, hey, we don't REALLY need them every night, do we.  (We do.)  Super friend Mollie helped me out and saved us from having to wake up every couple of hours to bolus feed the tube-fed princess.  

We did finally connect with the GI folks.  I spoke with a nurse who was either consulting directly with Dr. Moulton or is at least smart enough to say that she was.  :)   After a good bit of trouble finding a pharmacy that would work with use (see above), we have now started Becca on the compounded generic formulation of Prilosec.  (Compounding just means that they take the solid medicine and make it into a liquid.  Only certain pharmacies do it and only certain compounding pharmacies file insurance claims for those meds and only certain methods of compounding are covered by TennCare.  These are things I learned this weekend.)  We were able to dissolve the Prevacid solutabs in water and give them to Becca because the little balls of medicine (like the ones that are in the adult capsules) are designed not to dissolve.  We couldn't crush it up and put it in applesauce or any other food that consistency because she doesn't eat those foods.  She has taken a few bites of applesauce in her life, so we did try that and she gagged on it and puked...which made for a negative association with applesauce in general.  Awesome.  Besides, the Prevacid didn't seem to be working anyway, since even when we could it get in her, she still usually threw up another time during the day.  The liquid Prilosec apparently tastes really gross (to Becca), so we shoot it directly into her button.  It's kind of a funny process - we measure her 5 ml's in a small syringe, squirt it into a big syringe, add an adapter that fits into her button (which the small one doesn't have), and squirt it in.  But hey, she's not gagging on it and throwing up!  Actually, she is still throwing up, but not from the medicine, and it's only been a couple of days on it.  I'll keep you posted!

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!  

Things I Forgot To Say: TennCare Decision

Not sure how I forgot to tell you all this one, but Becca gets to keep her TennCare!  I went for our interview last month, waited forever, then sat in a cubicle while the agent typed a bunch of numbers into the computer without even looking at me.  After a few minutes, he turned to me and said, "She's accepted!"  I said, "What?  Just like that?" and he smiled and said, "Yep.  She's good for another year."  I'm not even kidding when I say that he looked like Santa Claus in that moment.  This news is SUCH a relief to us.  When I told John, he was so happy he felt like doing this:

Make an on-line slideshow at www.OneTrueMedia.com

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.

Hospital, Day 1.5, aka Days 126-127

Don't know if today counts as the first day or the second day since we are just now zooming in on 24 hours. I don't have much energy to wax eloquent, so I'll just give you a run-down of the day.

We got to our room last night a bit before 9 pm, and after Becca was poked and prodded and had an n-g tube shoved down her throat, she fell asleep around 10. Thank goodness the nurses decided to ignore the orders to check vitals every 4 hours so that she could sleep! (Seriously, she's not here because she's sick - why wake a sleeping toddler who is here to grow every 4 hours by taking her blood pressure?) She woke up at 6, so she got 8 of her normal 12 hours of sleep. Not too bad by hospital standards. They gave her 12 ounces of her formula (Boost Kid Essentials 1.5, packing a whopping 45 calories per ounce, same thing she gets in her sippy cup) through her n-g tube over 10 hours. When she woke up and I realized that she had already gotten 80% of the calories she needed today, I felt like a new woman. Giving her breakfast was actually enjoyable (even though she ate 4 cheerios and 1 grape).

This morning, we saw the resident on GI duty and the GI fellow. Actually we saw each of them twice. We never did see the attending (!) or the endocrinologist that we were hoping to consult.

We stayed busy throughout the morning. We (and by "we," I mean Becca and I, as John was at home waiting for the interwebs guy) saw a child life specialist (perhaps the coolest job in the hospital), who brought us a playmat (not like we can keep this kid off the dirty floor, but at least we can cover part of it and make it more comfy for mom and dad to sit on) and some fresh toys, including a plastic Fisher Price armchair, which is adorable and the perfect size for Becca. We may have to use some birthday money to get one for home. I particularly love that it has a book attached to the side table. But I digress. We also talked to the social worker, who gave me some numbers to call to investigate ways for me to go back to work without causing us to lose our TennCare (again). Then Becca received a short occupational therapy evaluation. The OT suggested that we still keep the (rescheduled - was set for tomorrow) outpatient evaluation so that they could do more thorough assessments of her, but she is recommending that she get OT 3 times a week while we are here. (That's way more than we normally get, but, remember, we're in feeding boot camp, so I guess they want to hit the sensory issues hard while we're here. I'm all for it!) We also managed to see the speech/language pathologist (aka feeding therapist) at lunchtime, which was great! She is actually making calls/sending e-mails to get us fast-tracked into group therapy instead of sitting on the waiting list with 41 other kids. I guess having the GI admit you and threaten you with a feeding tube moves you up the list a bit. Of course, Becca totally made a liar out of me by...drumroll....Karla, Caroline, and Roxanna, this is for you....eating 5 bites of applesauce off a spoon! Wow!

After lunch, Daddy arrived, which was very exciting for both Becca and me. Once we got Becca to sleep, we got to spend some time with two of my most favorite people in the world, Carol and Pam. Becca woke up while Pam was here, so she even got to play with her some. Pam being the rock star that she is, she even helped entertain/comfort/distract Becca while they shoved the tube back down her nose into her stomach.

Oh yeah, I forgot about that one. Mid-morning, Becca was sitting on my lap, eating some pretzels, when she, as usual, gagged, coughed, settled down again, and then puked. Good times. I even had to go back and revise her food journal because I could identify pieces of breakfast that I didn't notice her actually eating. Yum. The amazing part? The nurse cleaned it up! Whoa! I didn't have to clean up the vomit! We may never leave this place.

But back to the afternoon, which I am apparently not recounting in chronological order, because before Pam arrived, I took a nice nap (though nowhere near Becca's 3 hour slumber) while John watched World Cup games on the computer (okay, he probably worked on his sermon some, too, but I only saw the soccer games) and talked to the visitors I missed, including the nutritionist and our buddy Melissa. Oh, and I also ran into a friend in the Taco Bell/Pizza Hut line (love healthy hospital food!) who happens to work in the sedation/surgery/etc office and offered to act as our mole. She later gave us the down-low on tomorrow's plan (since, you know, we never saw the attending, though he apparently stopped by, didn't see us, and didn't bother to ask the nurse where he might find us even though we were just a few yards away eating lunch - ugh).

So here it is:

She's getting tube feeds from 10 pm - 4 am, though now that I think about it, I don't know how much they are giving her. At 4 am, they will switch to IV fluids, which she will get up until her procedures begin at 1 (per my mole) or 2 (per the resident, via the nurse). She will be NPO (nothing by mouth) from 4 am on. At some point they will give her an enema and/or a suppository. Yay! Sounds like a fun morning for both of us! They will put her under general anesthesia and perform an upper and lower endoscopy. They are looking for...umm...irritation, tears, and inflammation, I think, and will take teeny tiny biopsies. Both with their pictures and the biopsies, they will look for things like food allergies, including celiac disease. After the scopes are done, they will run another tube down her other nostril and place a pH probe in her esophagus. Over the next 24 hours, the probe will measure the pH levels, checking for stomach acid shooting back up.

My hope is that the tests will show clear results (as in, obvious ones - I'll be kind of pissed if we've come this far in dealing with obvious reflux and they don't show ANYTHING wrong) and that she doesn't wake up from the anesthesia completely hysteric. Last time she had to be put under, the recovery nurse very emphatically suggested that we take her out of the unit when she got so loud and inconsolable that other parents were coming and checking her out. Seems that itty bitty has an awful lot of her cousin Emma in her, reflux and anesthesia hysteria included...but she's also just as smart, strong, and sassy, so I'm all for the resemblance. :)

I think that's all. Oh! We also had another visitor, via child life: Ozzie, the mascot for the Nashville Sounds (our minor league team). Becca LOVED him. She couldn't care less about the pitcher, but she followed Ozzie down the hall, knee-walking and squealing all the way. Pretty cute.

And now, I'm going to attempt to very quietly watch some Mr. Monk before I sleep. Thanks for all your kind thoughts, words, visits, etc. It's really weird to be back here -- on the same floor as the NICU and in the same unit, kinda-sorta, even -- but it's also really...comforting? Or at least it feels like we might get to the bottom of some of this stuff. Or work out some of the other stuff. I mean, we've been here 1 day and look at all the departments that have looked at her. We're getting somewhere!

On [Not] Being Normal

Warning: the blog post you are about to read could be interpreted as being whiney. While I am a champion whiner, please know that my intention to help you wonderful readers understand my experience of parenting a little bit better. You've been warned. :)

Recently, I have had several well-meaning mothers inform me that there is no such thing as a "normal" child.

I beg to differ.

I am well aware that each and every child on this earth is a unique individual, created by God and in need of an individual type of nurturing that respects his or her individuality. We're individuals. Got it. And yes, your child is very, very special. I'm not saying that normal kids are cookie-cutter kids.

But...claiming that there is no "normal" trivializes my experience of motherhood - and Becca's experience of growing up different. You see, if you say there is no normal, you imply that there is no abnormal. And while my child is no more special than yours, our life together is, simply put, not normal. I can't recall ever hearing a mother of a child with special needs saying that there is no such thing as a normal kid. We moms know all too well what it's like to be abnormal. And even excepting the extraordinary circumstances surrounding Becca's birth and the first 4 months of her life spent in a hospital, Becca is still not a normal child.

People accustomed to normal children simply do not get it. For example, I was at lunch with a group of friends the other day. They asked how Becca was doing, and I said that she was doing well. In fact, she's doing so well that she ate 3 whole, fresh strawberries at lunch the day before. I made this announcement with great bravado and was met with not congratulations, high fives, or exclamations, but...silence. When I explained that we have been in therapy 3 times a week for months in order to achieve such a milestone, they did warm up a bit, but they were nowhere near as impressed with my child as I was. Because they don't get it, even though they are lovely, compassionate people. Why should they understand? I didn't understand until little missy came along.

A normal child eats when she is hungry. A normal child loves to play with messy food. A normal child probably has to go to some kind of therapy at some point in her childhood, whether it's speech, occupational, etc., but probably not 5 times a week, indefinitely. A normal child has some quirks, but they usually don't interfere with basic life necessities. A normal child may be big or small, but is on the growth chart somewhere. You know, with a height that isn't so low that it's in the weight section and a weight that is in the box with the Abbott Nutrition advertisement. (Moms out there know what I mean.) A normal kid is allowed to be around other normal kids. A normal kid gets to make friends. And go play. And check out library books (not that there is any shortage of books in our house these days!). And a normal mom gets to drop her kid in the nursery while she goes to church, to the YMCA, to Bible study, to a mom's group, somewhere, anywhere, outside the house!

Normal is not:

• Trekking 32 miles round-trip for 4 therapies a week, in addition to 1 in-home therapy each week.
• Regularly travelling 80.8 miles round-trip to be seen by 6 specialists.
• Wearing 6-9 month clothing (yep, she's moving up!) 20 months after you are born.
• Not being able to bring yourself to let someone put a spoonful of food in your mouth no matter how much you want it because people shoved tubes down that same mouth for months and months.
• Not being able to function when you get something on your hands because your sensory system didn't have time to develop. Seriously, she f.r.e.e.z.e.s if her hands get anything wet, sticky, or squishy on them, though she is improving here as well.
• Not crying when you get your toddler shots.
• Having to quit your job and set your career aside because your child is too medically fragile to go to daycare. (But I'm really not complaining about this one. It kind of gave me permission to do what I secretly wanted to do all along. But having to do it is still unfortunate.)
• Then having to start a home-based business because you're having to tap into savings because you've had to leave your professional job behind (see above) and you can't afford the ancillary expenses of having a child with special needs (see below). [The business, by the way, is going well.]
• Spending beyond your means to special order food from California (most of which becomes very expensive dog treats), repeatedly fill the gas tank to make it to all those aforementioned appointments, pay premium for the few clothes that actually fit because you have an infant-sized--toddler-shaped child (thank goodness that the grandmothers help out here, along with copious amounts of hand-me-downs), purchase the therapeutic supplies and toy that the therapists "prescribe," and so on and so forth and so on and so forth. See why the break we got with TennCare is so important? And how we'd be s-c-r-e-w-e-d if we ever lost our health insurance (cough, cough REFORM, cough, cough).
• Evaluating every cough, sneeze, sniffle, warm forehead, inexplicable fussy time, or clinginess to make sure that this isn't "the big one" that you fear and secretly expect to come about.
• Counting your child's calories and nutrients -- and feeling her ribs when getting her dressed -- because if she doesn't gain weight, the doctors will cut a hole in her stomach through which food will be deposited.
• Crossing your fingers that your child will walk before her second birthday and doing exercises every day to boost the chances that she will.
• Becoming a mind reader because your toddler communicates even less than other children her adjusted age. Okay, all moms of toddlers have to become mind readers...but our mind reading phase is lasting longer than most. Thank goodness for baby signs!
• Pondering whether or not you should soon begin giving your child daily injections that you will have to continue for the next 12 years in order to give her a fighting chance at breaking 5'.
• Having to plan your life around your proximity to a major children's hospital because your child will need special care for years to come.
• Having to plan your life around your proximity to your high-risk obstetrician and a top ranked NICU (not just any NICU will do for Hill babies, we now know!) because of the high risk that you and/or your child could have very, very serious complications if you were to become pregnant again.

At the same time, though, Becca does lead a more normal life than many other children. We do expect her to eventually do all the things that other kids do. I mean, she probably won't be in the WNBA, but she'll walk, talk, run, go to school, make friends, eat, play sports, dream of being in the Olympics (I'm thinking ice skating or gymnastics - or both, but no pressure), go on dates (if she wants to), go to college (is she can), get married (if she wants to), make me a grandmother (if she wants to...I guess...but if I had to choose between this one and the Olympics, I'd go with the grandbabies, but not until she is settled in a quality relationship (preferably a marriage) and old enough and ready to be a mother herself. But I digress.). And right now she's not on oxygen, not hooked up to any machines, is able to get herself around, and is able to live at home. I know that we are a lot closer to normal than a lot of families. And I am grateful for it. And because I am grateful for it, I will not minimize their challenges by saying, "Oh, all kids have challenges and everyone has their own special needs."

I don't know; maybe I am complaining. I guess I am. What bothers me is not Becca (duh). What bothers me is not even the fact that we deal with all of these difficulties. She's so beyond worth it. What bothers me is when people think they understand and try to skim over the difficult bits of our lives. It seems like it's easy to do now that Becca is doing so well. She looks so good and strong, and medically, she is doing great. But there is far more to the story than meets the eye. Ans so when people miss that fact, like when they laughingly say, "Oh, there's no such thing as a normal kid!" (or when they question the decisions I make on behalf of my child - like whether or not to take her to public gatherings, etc. - but that's an entire post in itself!), I get frustrated.

Those of you who know me personally know that I have never tried to be normal. In 5th grade, I got in trouble with our DARE officer who thought my self-esteem was low because I took being called "weird" as a compliment. (Why he got mad at me for it, I don't know. My pastoral mind now has some questions about his own self-image!) I've never before wanted to be the same as everyone else. But frankly, since that first maternal-fetal appointment in April of 2008, that's all I've wanted to be. Normal. Someday we'll get there. If you are there now, please be thankful. And be careful what you say to those of us who aren't.

(Almost) Speechless

Holy crap. Team Becca scores another miracle. Becca is NOT losing her TennCare. I just opened the letter, saw that John and I don't qualify (um, since we didn't even apply for it!), and thought it was talking about Becca, too. Turn the page over and....bam! "Rebecca Hill qualifies for TennCare Medicaid." Beautiful. She qualifies under rule blah blah blah - seriously looks like a serial number. Frankly, I don't care HOW she qualifies. Point is, she's covered! Hooray!

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.  ;)