p.s. Yes, I did just change the background to an official Christmas one. I tried to stay on the Advent side of things with the blue one previously, but now it's officially Christmas, at least for several more days! Remember, Christmas isn't over 'til the fat lady sings...er...or until the magi make it to Bethlehem on Epiphany!
Wednesday, December 30, 2009
Free Books!
Free books? Does life get any better than this? Well, maybe if they were catchy kids' books, because they are infinitely more fun than our grown-up stories. But, hey, I'll take free books for me, too. Here's the link from SouthernSavers.com: http://read-it-forward.crownpublishing.com/ . I just ordered mine, so I don't know if it works, but it's worth a try!
Monday, December 28, 2009
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.
Thursday, December 24, 2009
Guess Who?
Look who Becca met yesterday!
I broke all kinds of infection-prevention protocol to do this, but sometimes a girl just has to get a picture with Santa. Or sometimes a mama needs her girl to get pictures with Santa. She loved meeting him (though she doesn't look thrilled in the pictures - she was mesmerized!), and he was really impressed with her. He said that she's a "Santa record" - the smallest baby (at birth) he's ever held! And Santa holds a lot of kids! Also note her new headgear. While we were waiting for Santa to get back from feeding his reindeer, we stopped into Gymboree to hit up their sale, and I realized that since Becca will probably get her helmet off in 2.5 weeks, it's still going to be cold, and she's going to needs some winter hats after all! So I picked up this doozy and another pom-pommed one, and she looks oh so cute in them.
Santa, you're the best! We are so excited that you will be stopping by our house tonight!
(Oh and a stat check - at Becca's 18 months well baby appointment (I know, 18 months - crazy, right?), she weighed in at a chunky 14 pounds, 11 ounces and measured 26.2 inches tall! That's awesome growth for our itty bitty! Way to think chubby, Becca!)
Wednesday, December 23, 2009
Itty Bitty Artist at Work
About every week or so, we try to finger paint to help with some of Becca's sensory issues regarding slimy things on her hands. Here's the artist at work.
You can tell by the end that she's had about all she can take. But this is progress!
And because I am feeling particularly goofy tonight....check this link out!
More Micropreemies in the News
Here's an article from the New York Times on micropreemies (preemies born weighing under 2 pounds). I found it interesting and encouraging, though to their final point, I don't have to wait until Becca enters the workforce and starts paying taxes to know that she was worth the expense of keeping her alive. ;) Enjoy!
Friday, December 18, 2009
Houston, We Have a Word!
What, you didn't really think I'd break my streak just because I got out of the house (kid-free) today, did you?
Here's a post you've all been waiting for: Becca's first word. That's right! She's been saying a word for a couple of weeks now, and we just recently decided that it's an actual, intentional word. I think first words are interesting. On one hand, they are kind of arbitrary - they tend to be whatever mom and dad decide is their first real word (and my theory is backed up by my genius cousin Dr. Debbie who studies parent-child language development!). For example, Becca tends to practice her "b's" in the bathtub ("ba ba ba ba ba..."), but we're not sure that she's actually trying to say bath. But she might be. But I also think first words can be revealing. Those of you who know us will understand this example. John didn't speak at all until he was 2. His mom was seriously concerned that he had a cognitive disability. Then he starts talking in full sentences: "Put it right there!" Very commanding. My first word? "Cookie." Still often the first word out of my mouth each morning.
So what was Becca's first word? Well, I think it will come as no surprise to you that our little social butterfly who knows no stranger and loves to wave initiated her vocabulary with a sweet, insistent, very Southern-sounding "Hi!" Love it. Here she is (it's easier to understand her without her hand in her mouth, but she refused to stop gnawing on those fingers!):
Priceless.
Thursday, December 17, 2009
Appointment Run-down
I think I'm behind on updating the clamoring crowds about Becca's recent appointments. It seems that just about every doctor wanted to see her this month, and we've just got one left. So, let's see...
Last Monday we had 5 appointments. That's a long day.
1. Dr. Kelly - the helmet guy - is happy with her head-shaping progress, and doesn't expect to see much more change. He said that we could try another month and hope for some more growth, or we could just be done with it. Since the helmet was such an investment, we decided to give it another 5 weeks and see if we see any more change. I am a bit more lackadaisical about the 23-hours-a-day rule, though. Her hair is just so cute, and I love kissing the top of her little (big) round head. She's probably still wearing it 22 hours each day, which ought to be plenty as we wind down treatment.
2. The genetic counselor just wanted to see what concerns we have, I think. It was a very odd and awkward appointment. I couldn't really figure out what she wanted from us, and I think I offended her when I asked why the genetics department was still following us. Oh well. In the end, she was really willing to help...but I don't think I needed it!
3. The geneticist wanted to lay eyes on her now that she's bigger and see if it looks like there are any syndromes or conditions becoming more apparent. He's one of my favorite doctors (even has a daughter named Rebecca!), and we talked for a long time...because he still has some concerns. First off, he says that she can be diagnosed with septo-optic dysplasia (which kind of contradicts what the ophthalmologist said, but not really). Whatever. Whether you slap a diagnosis on her or not isn't going to affect her care. He also looked at her growth and had some slightly elevated suspicions about potential dwarfism. Most preemies show significant catch-up growth by this age, and Becca, as you know is still lagging behind -- you know, not showing any progress towards approaching the growth charts (quite the opposite, in fact). They don't expect preemies to be caught up to their peers by now, but most show that kind of trajectory. Since she's not, he wants to know why. It could be explained by her eating issues, but he wants to talk with the endocrinologist (the growth experts) and probably do another full skeletal scan to look for any bone composition abnormalities and/or a form of skeletal dysplasia (a.k.a. dwarfism). You may remember that we first visited this issue when we were still in Louisville, before Becca was born, because her long bones (her arms and legs) were lagging so far behind (probably because her smart little body was sending all of the few nutrients it was getting straight to her genius brain). It was brought up again when she was in the hospital, and they did a full skeletal scan then. (A skeletal scan is basically a series of x-rays that together show her entire skeleton. Pretty cool.) That's when they found her fractures -- otherwise, we wouldn't have known, tough kid. The skeletal dysplasia expert read them then and thought she looked fine. But now that she's bigger (not much!), they may be able to see something else. Again, we don't think there is anything wrong, but they want to check it out. Any way you slice it, though, she's probably going to be a little person, whether she's a Little Person or not. Unless we do growth hormones and they work their magic...but we'll talk with the endocrinologist about that next month. Incidentally, the geneticist said that, all things being equal, any daughter that John and I had would grow up to be my height (he did the calculations). Of course, all things were not equal with Becca, but it's helpful to know what her genetic potential is thought to be. I'm 5'6", by the way.
4. We scooted over to the helmet technicians to have them make the adjustments to her helmet indicated by the doctor. Not a big deal, but it was super annoying when we had to sit in the hallway outside their office for 1/2 an hour while they had lunch. We had a picnic in the hall, and I didn't even feel bad about the mess that Becca left. Yay passive-aggression!
5. After killing some time at the outdoor mall in Hendersonville and noting that the Barnes and Noble there had zero books on preemies (I was hoping for something about older preemies), we made our way to her feeding therapy evaluation at Sumner Station. We met Caroline, the speech pathologist, and she is awesome! Becca really liked her -- and the fact that she has lots of fun toys to play with in her room. After spending so much time in the carseat and the stroller, she was ready to get down and play! Caroline evaluated her eating (by actually watching her eat a bit and asking us a lot of questions about Becca's tendencies), and decided that it would be beneficial for us to see her twice a week. I was thrilled. After so much time and energy spent trying to get food in this girl, I am so relieved to have a professional therapist on board and helping us. I can't say that I've seen a miraculous turn around in Becca's eating in the past week and a half, but I feel about 50 times better about mealtimes now. I don't actually wake up dreading feeding Becca breakfast. Phew. We are trying a method called "food chaining," where you start with the foods that she will eat and then slowly introduce foods that are similar in appearance, taste, and/or texture. It's slow going, but our emphasis for right now is just on getting as much food in her as we can, so if she only eats cheese all day, I'm just supposed to give her as much cheese as she wants - and we'll worry about adding other foods later.
Speaking of food, I came home after that appointment to find our delivery from Just Tomatoes. Another preemie mom had told me about their products when I mentioned that Becca loves freeze-dried strawberries that only come mixed in with bananas - and there are only about 2.3 strawberries in each bag (because strawberries are so much more expensive than bananas). Just Tomatoes sells freeze-dried everything, it seems like, and you can get an entire tub of -- you guessed it -- Just Strawberries! Yum! Since Becca is really picky about her textures but will usually eat freeze-dried fruits, I ordered Just Strawberries, Just Blueberries, Just Corn, Just Carrots, and Just Peas. So far she loves the strawberries, is getting more and more into the blueberries, and has even eaten a few peas! Wow! I may even get the courage up to try a couple of peas myself!
Anyway...back to appointments....on Wednesday, we had our 1 year Early Intervention evaluation and planning meeting. I'll spare you the tedious details about our goals for Becca for the next year (I'm sure you can guess them -- you know, like have her grow and develop -- not rocket science), but I think you'll be really proud of her assessment scores! Remember, she's 15 months adjusted and she scored at:
11 months in gross motor skills (big motor skills, like cruising, pulling up, etc.);
12 months in fine motor skills (little movements - picking up cheerios, etc.);
11 months in communication (though when Caroline evaluated her, she thought she was more like 14 months);
15 months in cognitive skills (you know, genius baby and all);
15 months in social/emotional development (that's where the "demonstrating tantrum behavior" falls);
and 15 months in self-help skills (Becca do it!).
Since we are in physical therapy (gross motor) and speech therapy (feeding/communication) and going for our occupational therapy (fine motor) evaluation on Monday, we are right where we need to be. The areas she's behind in are the easiest to work with. I'm not saying that 4 therapy sessions a week is easy, but they are areas that you can do therapy in, so that's great.
And speaking of therapy, (wow, it's all connected tonight!), we kind of graduated from physical therapy this week. Becca's strong enough now that she will probably be able to move through the next few stages of physical development (standing without holding on to anything, walking, etc) without too much extra help. Jane's not discharging her because there's a good chance something funky will crop up, but we don't have an appointment scheduled at the moment either. That's pretty exciting. And a little sad, because we are big fans of Ms. Jane. But still exciting.
Today we were back at Vandy for a hearing evaluation. Becca didn't do so hot, though I'm not sure how they could actually interpret the results, as the process involved a lot of manhandling by mommy dearest. Becca was not a big fan of the headphone-y contraption she had to wear, and she wasn't too patient when they actually stuck stuff in her ear (can't blame her there). At any rate, she again showed a moderate hearing loss. It appears that her tubes aren't working; she still has fluid stuck in her middle ear, which is keeping her eardrum from moving properly...so her hearing is mushy (that's my technical term..."slushy" would also work, as would "muddled"). Basically, we are where we were at her last test 3 months ago - only worse. Of course, at the last test they said, "Let's wait and see," and it only got worse. Can I tell you how sick I am of "wait and see"? Seriously, we know something is amiss; let's fix it! We've had to wait and see our way into physical therapy, feeding therapy, helmet therapy, and on and on...and every time, mama has been right! So there's no more Mr. Nice Mom. We're going to get this hearing thing figured out pronto...
...after our ENT appointment in a month, of course. Ugh. I'm going to see if I can get it bumped up, but I'm not too hopeful, as Becca's schedule is quite full with therapies, and the ENT office is notoriously hard to schedule with. The plan at this point, though, is to see the ENT (remember, not one of my favorite doctors!), see what he says, and then do another ABR (the really extensive hearing test for which Becca will be sedated). There's a really good chance that the doc is going to want to wait and see until she grows some more...and if he says that, I'm pretty sure I'm going to tell him where he can shove his little ear probe thing. Okay, maybe I'm not that bold in person, but, wow, I'm sick of not getting answers. At least now we kind of have a plan, though. If the ABR comes back clear, it's probably an issue with the tubes, and we'll have to look at a different kind of tubes for Becca, but I don't know much about what the options are. If the ABR shows permanent loss, we'll do hearing aids. I'm fine either way. Let's get to the bottom of this, though.
Oh my. These doctors didn't know what they were in for when Becca came along...and they definitely didn't know what they were in for when I became Becca's mom. Watch out for the Hill girls!
Phew. We've been busy! On the upside, though, Becca got to meet yet another boyfriend today! We were soooo excited to get to visit our nurse Carla and meet sweet Eli! He's beautiful and cuddly and adorable, and Carla and Ethan are wonderful and glowing (though sleep-deprived) new parents. I'd post a picture, but I left my camera at their house (an hour away, right before Christmas - silly me!). Besides, you might just melt into a puddle when you saw the picture of Becca and Eli holding hands, and then you'd have to clean yourself up.
And that image makes it pretty clear that it's time for me to go to bed. Hope you feel caught up on the medical side of Becca's life!
Wednesday, December 16, 2009
Mommy Will Be Middle-aged Tomorrow
"Eating" her first candy cane!
Okay, I know I've gone blog-wild here this week, but just today, Becca has learned to say "m" (as in Mama, of course!) and to crawl up the (2) stairs in our house.
I'm pretty sure that this time next week we will be filling out college applications.
Tuesday, December 15, 2009
15 Months Adjusted! (Almost 18 for real)
Becca turned 15 months adjusted yesterday! I'm not sure why, but this one feels like a really big deal to me. Maybe because 15-month-olds are just definitely not babies anymore. I don't know...but for whatever reason, I like this one. At 15 months (adjusted), Becca is crawling all over the place -- and pretty quickly! She's pulling up to a stand on everything, including walls, and cruises the entire length of the couch as she tries (usually without success) to catch a puppy dog's tail or ear to pull. She loves to wave and is obsessed with Mommy's computer. We've started feeding therapy (more on that in another post), and even though feeding is still an issue, her new super milk seems to be helping. According to my very unofficial measurement (stepping on and off the scale with her in my arms), she's -- wait for it -- gained some weight! Wohoo! She's somewhere around 14.5 pounds now, and she looks a little bit taller to me. Who knows, though. She's busy, and she's happy. Unless she is (how do they say it on the developmental checklist? oh yeah...) "demonstrating tantrum behavior." But I'm glad to see her spirit and independence, though they come as a surprise to none of you loyal Becca fans!
In celebration of her adjusted 15-month birthday (wow, we celebrate everything, don't we?!), SuperDad helped me wrangle the all too elusive crawling-for-the-camera out of our Itty Bitty. It looks like she's crawling crooked in the video, but Daddy was standing just off-screen to the right, so she was actually crawling directly to him -- no surprise there!
In celebration of her adjusted 15-month birthday (wow, we celebrate everything, don't we?!), SuperDad helped me wrangle the all too elusive crawling-for-the-camera out of our Itty Bitty. It looks like she's crawling crooked in the video, but Daddy was standing just off-screen to the right, so she was actually crawling directly to him -- no surprise there!
Monday, December 14, 2009
Celebrity Micropreemie
I learned yesterday that there is a new celebrity micropreemie. Josie Duggar, of 18 Kids and Counting fame, was born on Thursday night, at only 25 weeks gestation. Super-baby-maker mom Michelle developed pre-eclampsia and had to have an emergency c-section. I'll admit that I'm not a fan of the way that the Duggars have decided to create/plan/raise a family, but that's not the point. I am all too familiar with the journey that they are starting out on, so I wish them only the best, particularly for little Josie.
But - I am ticked about how Josie's birth is being reported...perpetuating the myth that micropreemies are just like full-term babies, only smaller. All they have to do is stay in the hospital long enough to fit into newborn clothes, right? Ugh. The family spokesperson even said that Josie is "resting" in the NICU. What? Resting? Fellow preemie mom blogger Anne posted a commentary on her blog that hits the nail right on the head for me. I hope you'll take a minute to read it and see exactly what I mean. I don't expect cameras in the NICU or anything, but I do hope that TLC and the Duggars can accurately represent what they are going through as their micropreemie journey unfolds...'cause it ain't no picnic. Anyway, here's the link to Anne's blog post: "Resting?" Be sure to comment back here so I can see what you think!
But - I am ticked about how Josie's birth is being reported...perpetuating the myth that micropreemies are just like full-term babies, only smaller. All they have to do is stay in the hospital long enough to fit into newborn clothes, right? Ugh. The family spokesperson even said that Josie is "resting" in the NICU. What? Resting? Fellow preemie mom blogger Anne posted a commentary on her blog that hits the nail right on the head for me. I hope you'll take a minute to read it and see exactly what I mean. I don't expect cameras in the NICU or anything, but I do hope that TLC and the Duggars can accurately represent what they are going through as their micropreemie journey unfolds...'cause it ain't no picnic. Anyway, here's the link to Anne's blog post: "Resting?" Be sure to comment back here so I can see what you think!
Saturday, December 12, 2009
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.
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
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.
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:
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.
Who We Are
- 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!
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!
Thursday, December 10, 2009
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. ;)
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. ;)
Friday, December 4, 2009
Over the River and Through the Woods!
This year we literally traveled over the river (Tellico) and through the woods to spend Thanksgiving with my family at my parents' home in Tellico Village, outside of Knoxville. They moved there a few years ago, after they retired, figuring that since we were in Kentucky and my brothers were settled in Ohio and Knoxville, they didn't need to stick around Middle Tennessee for their kids' sake. Oops. Here we are! Seriously, though, it is the perfect place for them, and they are having a grand time. It's a retirement-oriented community, and just about everybody there is new to the area, so they have all kinds of clubs and activities -- we say that it's like college without the classes. Nice. They go to "Walk and Talk," and bike about a million miles a day. My parents are on a planning committee for the Muddy Boots Club (the hiking group), and they even hosted a wine-tasting a couple of weeks ago. Those of you who knew my parents when I was growing up can pick your jaws up off the floor now. (FYI for the rest of you - they weren't very social back then.) So it's really cute, and we make fun of them all the time for living in an old people's community, albeit a very active old people's community. Like I said, it's perfect for them, busy old farts that they are. And they have a nice big-ish house and a community playground (not to mention the boat in the summer!), so it was perfect for our crazy family gathering.
It was blessed chaos. Here's a glimpse:
If you didn't figure, that video was taken just after we had opened presents. Becca was given the Speas family traditional gift: the big red Radio Flyer wagon. Each family gets one when the oldest child is deemed big enough to use it. It's a big hit. It's seriously the best wagon ever, complete with seatbelts and not one, but two cupholders per passenger. Sweet. Becca and Lucy Kate (the Knoxville cousin in Becca's cohort - who turns 1 this week!) had to try it out immediately, with a little help from Shelby and Riley. Take a look:
And because there is no sitting around the house in Tellico Village, we took a Speas family adventure to Bald River Falls in Cherokee National Forest. I have to admit, it was pretty cool, and everyone seemed to have a good time. We even lugged the babies up to the top of the falls, scurrying after the big kids -- and Grandma and Granddaddy, who left us all in the dust, of course.
And, yes, I hear you sister preemie moms gasping...it was a total germfest. But totally worth it. This is the only time my whole family gets together all year long (and we still weren't quite whole without Uncle Doug!), and we skipped last year but decided that it was worth the risk this year. Of the 6 cousins, only 2 were visibly symptomatic, which isn't too bad, considering the time of year and the age of the kids. Apparently it was enough for Becca and I to get sick, though. We're both hacking and drippy, but so far there have been no fevers, so we're icky but not scary sick. Let's hope it stays that way! Even if we stay icky for a while, there is no replacing the memories we made...getting put "under arrested" by Taylor, cuddling with sweet Shelby, cracking up at witty Emma, helping Lego phenom Donald build and build and build, getting beat (legitimately!) at Disney Scene It by the brilliant Riley, and watching Lucy Kate bowl over Becca time and again (love the helmet!). So, so, so fun. Definitely worth a few days of sniffles.
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