Weigh-In

Hey, remember when I did these weekly?  We only recently stopped weighing her weekly, but as you know, I stopped posting weekly quite some time ago.  Looking back over the blog, it looks like the last time I posted stats is June 1, 2011.  Is that really possible?  Sheesh.  I'm a bad preemie mommy blogger.  But we were at the doc on Wednesday, so here are her stats as of then and total gains since she got her feeding tube and we began growth hormone shots.

June 1, 2011: 11.20 kg (24 pounds, 12 ounces), 34 inches
February 1, 2012: 11.70 kg (25 pounds, 13 ounces), 36 inches
8 Months' Change (surely it hasn't been THAT long!): 0.5 kg (1 pound, 2 ounces), 2 inches
Net Change: 5000 grams (133 ounces = 8 pounds, 5 ounces), 7.5 inches

Soooo...her weight gain hasn't been great, but a 3-year-old to growing 2 inches in 8 months isn't too shabby.  Her docs aren't so concerned about her weight gain at the moment because she is picking up height, which tells us that she's getting enough nutrition.  She's got the rest of her life to gain weight.  Percentile-wise, her weight is back down to the < 3rd percentile range, but her height is 6th percentile!  Wohoo!

Wednesday/Weekly/Bimothly Weigh In

Hey, do you guys remember me?  My name's Nancy; I've got a little girl who used to be a really, really, really, really little girl?  And she's super duper cute?  Yeah, that's me.  I'm still around.  Just gone radio silent.  For no good reason, really.  Or for lots of good reasons.  There's been so much exciting happening in our lives the past month or so that I keep avoiding the blog because it will take forever to actually catch you up.  (No, I'm not pregnant.)  But I've got to start somewhere, I guess, so let me give you your first stats update since March 19.  (Craziness, I know!)  


March 19: 10.05 kg (22 pounds, 3 ounces), 32.75 inches
Today: 11.20 kg (24 pounds, 12 ounces), 34 inches
11 Weeks' Change: 1.15 kg (2 pounds, 9 ounces), 1.75 inches
Net Change: 4500 grams (115 ounces = 7 pounds, 3 ounces), 5.5 inches


That looks great to me!  We go to the GI doc this afternoon, so we'll see what he thinks, too.  She's now gained the weight of an average-sized newborn.  :)

"Wednesday" Weigh-In

Wednesday, Saturday, what's the difference?  :) 

Last week: 10.00 kg (22 pounds, 1 ounce), 32 inches
This week: 10.05 kg (22 pounds, 3 ounces), 32.75 inches
Week's change: +50 grams (2 ounces), + 0.75 inches
Net change: +2350 grams (74 ounces = 4 pounds, 12 ounces), +3.75 inches

These measurments were taken at the endocrinologist's office, so we may seem some fluctuation on the weight next week as we move back to our regular scale.  And I'm quite sure that we'll see some fluctuation in the height, too, because that's how we roll, apparently.  I do think that this is probably the most accurate height measurement we've had in a while.  Since endocrinology follows many kids specifically for growth concerns, the nurses in that office are very well trained in taking height measurements.  They've also got slightly different equipment that I think is more accurate.  So, all of that is to say that Becca is indeed NOT on the growth charts yet, but she's making some great progress. 

When we started growth hormone shots last summer, Becca was 3.79 standard deviations below average (a.k.a. the 50th percentile line).  (If you don't know what standard deviations are, sorry, but I don't really know how to explain them.  Just look at the numbers and be impressed.)  After nearly 9 months of therapy, she has bumped up to 2.45 standard deviations below average.  The 3rd (Or is it 5th?  Crap.  I think it's 3rd.) percentile line is 2.0 standard deviations below average.  So she's getting much, much closer!  Maybe in another few months, she'll actually be on there!  She is at least no longer falling off the bottom of the paper, so that's better. 

Becca is having a harder time with her daily shots, though.  As hard as it is to see her upset, this is probably a good sign, because it (probably) indicates that her sensory integration therapy (OT) is kicking in and she's feeling pain more.  Yes, that sounds crazy, but it's a good thing that she can sense pain.  After consulting with my friend Bekah, who is a preemie mama and a Child Life Specialist at Vandy, we've started giving Becca a Band-Aid after every shot.  The needle is so tiny that 90% of the time she doesn't need one, but she LOVES "bannai," so getting to pick which one she gets (right now it's Elmo or Pooh Bear) and getting to help put it on is a big deal.  It not only distracts her, but it also empowers her a little.  She doesn't have a choice in getting the shot, but she can choose her Band-Aid!

Wednesday Weigh-In

Told ya we wouldn't stay on the charts!  Still, I didn't expect her to shrink TWO INCHES!  You'd think measurements would be a fairly exact science.  Apparently not.  Her weight gain was good, though!

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

This week:  10.00 kg (22 pounds, 1 ounce), 32 inches

Week's change: +150 grams (5 ounces), -2 inches

Net change:  +2300 grams (74 ounces = 4 pounds, 10 ounces), +3 inches

We go to endocrine next week, and they are really particular about measuring her height, since they are the ones really looking at her size.  Should be interesting to compare!

Off the Charts...

...is where we usually fall.  But check this out:

Yes, ladies and gentlemen, for the first time in her life, Itty Bitty Becca is ON THE GROWTH CHART FOR HEIGHT!*  6th percentile!  Wohoo!  That means that she's taller than 5% of other kids her actual age!  Now - this measurement was taken at her weigh in last Wednesday, and you've heard me talk about how these measurements are not exactly scientific.  This particular measurement had Becca growing an inch in a week, so it's probably a generous measurement, but, still she's been trending upward relatively sharply lately, so even if she drops off the chart this week, I expect she'll be back on it soon.  


Seriously, y'all, this is crazy awesome.  When I say this is the first time she's been on the chart in her life, I mean LIFE in the most pro-lifer sense you can imagine.  Her very first measurements were taken at 8 weeks gestation.  She was a little smaller than expected then, so they adjusted my due date to 4 days later, even though I can still tell you to the hour the day that she was conceived.  (Don't worry; I won't.)  So she was essentially 4 days too short then.  (Normally, I wouldn't think of an ultrasound that early being behind, but since a few weeks later she was significantly behind, I think (in retrospect) we were seeing her poor growth pattern that early.)  At 17 weeks, she was a full 2 weeks behind.  When she was born at 28 weeks, she was 9-10 weeks behind on length (and slightly less behind on weight and even slightly-er less behind on head circumference).  


And of course, since she formally became a baby, she's been off the charts.  Literally.  As in, if you tried to plot her height and weight (particularly height) on a standard growth chart (or on one for preemies that has the 3rd percentile line marked), there are not lines on the graph on which to put her dot.  (And I don't mean the growth curve line.  I'm talking about the actual grid.)  


But here she is, standing tall at 34 inches and ruling the 6th percentile!  Take that, IUGR!  And big thanks to you, growth hormone "pokes"!  Her weight is still waaaaay down there (note in the photo that it says "< 3rd percentile" - that's the lowest interpretation they put there - so it doesn't mean that she's in the 2nd percentile or anything).  She's in 9-12 month clothes on weight but 2T in height, and that does make finding clothes for her challenging, but heaven knows I've managed to assemble a wardrobe with 1 or 2 things in it for her.  :)  But still...


Watch out, world.  Becca Hill just may hit 5 feet yet!




*She's been tracking in the very low percentiles for head circumference for a while now - that's the asymmetrical part of her asymmetrical intrauterine growth restriction.  

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!

Wednesday Weigh-In

Back to the original title!  Hooray for me!  Here's the scoop:

Last week: 9.8 kg (21 pounds, 10 ounces), 33 inches

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

Week's change: +100 grams (3 ounces), + 0 inches

Net change:  +2200 grams (70 ounces = 4 pounds, 6 ounces), +4 inches

Still haven't heard back from GI.

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!  

Weekly Weigh-In: The You're-REALLY-Not-Going-to-Believe-This Edition

Last week: 9.3 kg (20 pounds, 9 ounces), 31.5 inches

This week: 9.6 kg (21 pounds, 2 ounces), 33 inches

Weeks change: +300 grams (9 ounces), + 1.5 inches

Net change:  +1900 grams (59 ounces = 3 pounds, 11 ounces), +4 inches 

I knew this was going to be a big week.  But I didn't think it was going to be this big again!  Even though Becca threw up 3 (or maybe 4?) times, she has been looking v.e.r.y chubby.  So chubby in the cheeks, in fact, that the possibility of mumps crossed my (hyper-vigilant) mind more than once.  In lighter moments this week, though, I taught her to play the old youth group favorite "Chubby Bunny".  (She's been "packing" a lot this week - filling her cheeks with food like a chipmunk without actually eating any of it.)  She's a champ.  And again, I don't think she grew 1.5 inches in a week, but I think the past few weeks have been short.  She's definitely been getting taller lately.  

Dr. Rawls still isn't worried about the pace of the weight gain.  (Because of her risk of metabolic issues, I'm a little nervous when she puts on so much weight at once.)  He is quite proud of her, though, and made a point to show her off to a resident who was in clinic today.  Sure, he's impressed with her medical history/recovery/story, but he is mostly impressed with her awesome monkey impression.  The girl's got skillz.

Wednesday Weigh-In: The You're-Not-Going-To-Believe-This Edition

Last week: 9.0 kg (19 pounds, 14 ounces), 31 inches 

This week: 9.3 kg (20 pounds, 9 ounces), 31.5 inches

Weeks change: +300 grams (11 ounces), + 0.5 inches

Net change:  +1600 grams (50 ounces), +2.5 inches 

Yeah, WHAT THE CRAP? Up 11 ounces in one week?  We weighed her twice to make sure - and got consistent results.  Same scale as every week.  Stripped down totally naked, like always.  And she gained 85% of her birthweight in one week.  Wowzers!

Dr. Rawls thinks that part of the massive gain is due to the fact that she had been sick (perpetual cold), but has been feeling better this week.  You naturally drop weight when you are ill, but you pick that weight back up pretty quickly.  

I, on the other hand, chalk it up to the Olive Garden!

Wednesday Weigh-In

Last week: 8.95 kg (19 pounds, 12 ounces), 31.5 inches

This week: 9.0 (19 pounds, 14 ounces), 31 inches (Seriously, I might just stop posting the length, though it's handy to keep track of it in the long run.  This was measured by the same woman and on the same table as last week and two weeks before that.  In the past 3 weeks, she's "lost" a full inch and a half...and yet is taller than ever.)

Weeks change: +50 grams (2 ounces), - 0.5 inches

Net change:  +1300 grams (39 ounces), +2 inches 

Up a bit!

Weekly Weigh-In

Sorry to start back with a lame weight check post, but it's Wednesday, after all!  I'll try to get something with pictures up later.  But here are this week's stats:

Two weeks ago: 9.0 kg (19 pounds, 13 ounces), 32.5 inches

This week: 8.95 kg (19 pounds, 12 ounces), 31.5 inches

Two weeks' change: -50 grams (1 ounce), - 1 inch

Net change:  +1250 grams (37 ounces), +2.5 inches 

And that puts us right where we were on November 17th.  No gain in 7 weeks.  If only we could keep her from vomiting...I'm really starting to wonder if we should have done the nissen surgery that would prevent her from throwing up.  The doctor didn't think it was necessary, but, like I've said before, he's never actually seen the massive pile of puke.

Becca got a baby doll from Santa, and today she made her baby throw up.  Good pretend play, but I sure wish "doh dup" wasn't so embedded in her psyche.

(On the upside, though, Becca has just about kicked the cold she picked up travelling, and she actually signed and said "eat," walked over to her high chair and said, "Yeah, yeah," which roughly translates as, "Please do whatever it is that I am asking you to do, right now, please." (She's quite the combination of stubborn and polite, little stinker.)  That's a good sign!)

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.

Weekly Weigh-In

Last week: 8.85 kg (19 pounds, 9 ounces), 32.5 inches

This week: 9.0 kg (19 pounds, 13 ounces), 32.5 inches

Week's change: +150 grams (4 ounces), +/-0 inches

Net change:  +1300 grams (38 ounces), +3.5 inches 

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

Weekly Weigh-In (Kind Of)

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

Here's a recap of the past few weeks:

November 17 (regular Wednesday weigh-in): 8.95 kg (19 pounds, 12 ounces), 31 inches

November 24 (regular Wednesday weigh-in): 9.05 kg (20 POUNDS! Wohoo!), 31 inches

By the time we arrived at Grandma and Granddaddy's house for Thanksgiving that Wednesday night, Becca was running a little fever. It got worse over the next few days, peaking at 103.8 that weekend. By Saturday, I was on the phone with the pediatrician. From Saturday afternoon to Sunday evening, she was fever-free. Sunday night, the fever came back, and on Monday we went to see good ole Dr. Rawls. As always, they weighed her when checking her in:

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

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

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

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

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

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

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

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

*I highly doubt this height measurement is accurate.

Weekly Weigh-In

Last week: 8.9 kg (19 pounds, 10 ounces), 31 inches

This week: 8.95 (19 pounds, 12 ounces), 31 inches (though we had an endocrine appt. yesterday, and she had hit 9.0 kgs exactly, but I don't want to throw the weekly pacing off)

Week's change: +50 grams/2 ounces, +/- 0 inches

Net change (since July): +1250 grams/38 ounces, +2 inches

Slower than the past 2 weeks, but still gaining!

Weekly Weigh-In

Last week: 8.75 kg (19 pounds, 4 ounces), 30.5 inches

This week: 8.9 kg (19 pounds, 10 ounces), 31 inches

Week's change: +150 grams/6 ounces, +0.5 inch

Net change (since July): +1200 grams/36 ounces, +2 inches

That's right; another 6-ounce gain (and back on our regular scale), meaning that she's gained very nearly her birthweight in 2 weeks! Still no puke at night and just a little puke at meals - I'm not changing a THING!

Wednesday Weigh-In

Last week: 8.3 kg (18 pounds, 5 ounces), 29 inches

This week: 8.4 kg (18 pounds, 8 ounces), 30 inches

Week's change: +100 grams/3 ounces, +1.0 inches

Net change: +700 grams/24 ounces, +1.0 inches

Good week! She up a pound and a half in exactly 2 months!

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