Developmental Update

Okay, I know I've been slacking on giving you actual information about our rock star preemie.  We've had a lot of assessments and change over the past several months as Becca turned 3, so let's rewind back to the spring, as we approached her birthday.

Becca received Early Intervention services from the time she came home from the NICU to her third birthday, and they made a TREMENDOUS impact of her development and our understanding of the ways we could encourage her to meet her milestones, albeit at her own pace.  Early Intervention is a federally-mandated, state-sponsored program, and it is worth every penny our taxes put towards it (and could use a lot more pennies thrown that direction).  Without it, Becca never would have made the progress she has made, and it's even more important to other kids whose parents aren't able or willing to go to advocate and care for them the (very difficult) way that kids with special needs require, because the Early Interventionists are able to (somewhat) step into that role and equip parents to, well, parent better.  So, we are fans of Early Intervention.

But once you turn 3, if you require "services" (therapy and/or special instruction), you are the responsibility of the public school system.  So beginning in January, we began transition meetings with the Williamson County school psychologist.  A few months later, Becca had a whole battery of assessments: one morning the psychologist and the speech therapist double-teamed; another morning the physical therapist and the occupational therapist worked with her.  We then had several meetings with me and John (and Becca), the psychologist, an OT, a PT, a SLP (speech/language pathologist), an early childhood special education teacher, and either the school principal or assistant principal.  These meetings were...difficult.  And at times, not-so-professional.  And definitely not family-friendly (like most everything in Early Intervention is designed to be), meaning that everything was at their convenience, on their schedule (or re-schedule), and flexible only on our end.  We even had to pull Becca out of therapy one morning to have a meeting about how Becca needs therapy.  Ridiculous.  BUT - in the end, we were (and are) VERY happy with the Individualized Educational Plan (IEP) that we have in place for Becca.  Here's what it includes:

• Physical therapy:  Becca's biggest area of delay continues to be gross motor (motor skills that use the big muscles, like walking, running, jumping, climbing, etc.).  At her assessment, Becca was 34 months old, and she scored 20 months in this area, so she obviously need physical therapy, which she will get at school 20 minutes a week.
• Occupational therapy: Occupational therapy mostly works in 2 domains: fine motor and sensory processing.  In her fine motor assessment (again at 34 months), Becca scored 28 months, which is actually considered the very bottom edge of normal, though there's still a delay.  However, we know Becca's sensory processing shows significant dysfunction, as she demonstrates "over-responsiveness to visual, auditory, touch and oral tactile forms of sensory input that impacts her ability to attend to task in busy or noisy environments, impacts her ability to participate in daily functional activities at home and at school, and impacts her readiness to learn;" "sensory seeking with visual, auditory, proprioceptive and vestibular forms of sensory input that also impact her ability to attend to task;" and "decreased perception of proprioceptive and vestibular sensory input.  Combined with her gross motor skill delays, this impacts her balance and coordination along with her higher lever motor planning skills."  The OT's rec?  "Becca needs consultative OT services integrated into the classroom."  Which won her a place in the...
• Early Childhood Special Education classroom:  While Becca was somewhat borderline in whether she qualified for services because of her strengths in the communication and cognitive domains (talkative genius that she is), she qualified for classroom instruction because of the ways that her particular delays impact her ability to access the classroom environment, appropriately attend to task and progress towards kindergarten readiness.  I was really happy that she qualified for classroom services because it is SUCH  a great program, and we L.O.V.E. Ms. Jamie, her teacher.  More on how the classroom program is structure below.
• Transportation to and from school:  Yep, she rides the short bus, and we're so proud of it! 

What it doesn't include:

• Speech therapy: Becca is no longer delayed in her receptive or expressive language.  In fact, at another round of assessment at the NICU follow-up clinic, when Becca was 36 months, she scored 42 months on expressive language.  That's my girl! 
• Feeding therapy:  Because everything done through the school is focused purely on helping the kids success from an educational perspective, they do not provide feeding therapy, I guess because you can be fully tube-fed and still participate in the educational process fully.  Not that it's totally disconnected; the sensory work they do in OT especially can help make progress in her sensory-based feeding issues. 

So, what is Becca's schedule like these days?  Well, on Monday, Tuesday, Thursday and Friday, she's in school from 8:30-11:30.  They have a morning and afternoon session, and Becca is in the morning session, since she (theoretically) still naps in the afternoon.  (You get to do one or the other.)  Wednesdays, they don't have class so that the teachers and therapists can do assessments and IEP meetings.  On Wednesday, Becca and I head out to her private PT and OT sessions anyway, so that worked out for us.  (But, yes, we are still going to PT, OT and feeding therapies at Vandy in addition to the school therapies.)  It's frustrating that the program schedule is SO not working-parent friendly, and Becca's teacher even said in one of the meetings the she wouldn't have been able to participate in a program like this as a kid because her parents both worked.  But part of that is a function of the community we're in, where there are many families who have one parent stay home with the kiddos - but it's living in this same community that makes being a part of the awesome program possible. 

And the program is awesome.  Half of the kids are on an IEP (a.k.a. have special needs) and half are peer models from the community (a.k.a. normal kids - by the way, it's FREE preschool for these kids, and I don't know why everybody doesn't put their kid in this program, particularly if the schedule does work for your family!).  There are always four adults in the classroom: a teacher, two teacher's aides, and one therapist.  The therapist alternates between speech and occupational because both of those disciplines provide integrated services, meaning that they build the therapy into the classroom program.  (The PT pulls Becca out for her session.  It's have to practice walking on a balance beam, climbing and jumping with 13 other 3-year-olds without it becoming pure chaos!). 

Everything they do in school is coordinated, but in such a way that the kids don't notice or feel confined. They work on 2-week storybook units, meaning that they base their different activities on one book for two weeks.  For example, they have been studying The Kissing Hand, which is a really sweet book about a little raccoon who misses his mommy at school, so she kisses his hand so that he always has her love with him.  So in OT, they stuffed "raccoon tails" (tube socks) with newspaper and painted them.  In art, they made a little raccoon mask.  In dramatic play, they wore their masks and tails and pretended to be raccoons.  Another time in art, they made trees by drawing rectangles for the tree trunk (because the rectangle is the base shape for the letter of the week, which was "F") and glued cotton balls on the top for the leaves (an activity Becca is averse to because it involves getting glue on your hands).  It's just so well thought-out!  So, like I said, it was a little frustrating getting there and working out the scheduling logistics so she can go to school and I can work, but it is so, so, so worth it.

And we're still busy outside of school.  Monday afternoon, she gets a super quick nap/rest time in before we head out to feeding therapy, and on Thursdays (starting this week), we'll go to ballet in the evening.  Add in Wednesday therapies and weight check and the regular Sunday/Wednesday church schedule, and she's one BUSY little girl!  And I'm one tired mama...but, thankfully, we've got a great Team Becca, including SuperDad, her second family (the aforementioned Lovells), and a new SUPER babysitter who - get this - used to play Mickey and Minnie at Disney World.  I mean, really, could you have any better credentials for playing with young kids?  :) 

We're slowly getting adjusted to the new schedule and working out some of the (pretty major) kinks - and relying heavily on the loving hands at church to make this whole mom's a pastor-dad's a pastor-Becca's got special needs charade work.  And after I had to steam clean the youth room carpet after Becca disconnected her tube feeding while "napping" in there while mommy and daddy worked, we're having to think creatively about scheduling.  But we'll get there.  And we're accepting any and all advice.  :) 

Here are some pictures of the big elementary school student!

"Bye bye, Mommy!"

"Tan I go NOW?" 

Time for one more goodbye on her first day

There's the short bus, dropping her off right in front of our house!

So tired after school - "No picture, Mommy!"

Developmental Update, 2 Years Adjusted

One of our appointments last week was Becca's 2-year visit to the NICU follow-up clinic. We were sad to find out that Dr. Daily had retired, but we got to once again see Odessa Settles, who I believe has been working with preemies at Vandy for 40-some-odd years. Wow. She's extra cool because she's a vocalist on the side, appearing as a regular cast member on Tokens, "Nashville's New 'Old Time' Radio Show." In fact, they are recording an episode at the Ryman on the Sunday before Thanksgiving, and the guests include Keb' Mo' and Shane Claiborne. John and I are going, so let me know if you'd like to join us...or if you want to hug an Itty Bitty that night. ;)

But back to Becca. This visit involved a complete Bayley exam, which measures development in 5 areas: cognitive (thinking and figuring things out), receptive language (words she understands), expressive language (words she actually uses), fine motor skills (tiny movements) and gross motor skills (big movements). (The previous link describes the 5 areas in more detail, if you are interested.) For each area, I'll give you 4 scores: the overall average for kids taking the test, her score based on her actual age (27 months), her score based on her adjusted age (24 months - remember, this is based on her due date "birthday"), and her age-equivalent.

Cognitive: Average = 85-115

Actual = 95

Adjusted = 105

Age-Equivalent = 25 months

Receptive: Average = 10

Actual = 10

Adjusted = 12

Age-Equivalent = 26 months

Expressive: Average = 10

Actual = 8

Adjusted = 9

Age-Equivalent = 22 months

Fine Motor: Average = 10

Actual = 8

Adjusted = 10

Age-Equivalent = 23 months

Gross Motor: Average = 10

Actual = 6

Adjusted = 7

Age-Equivalent = 18 months

When thinking about these scores, keep in mind a few things:

• These scores are a snapshot of the tasks she was able to complete on a particular morning. I'd say that she was pretty much herself that morning, though she did get tired by the end of the 2-hour exam (go figure).
• When looking at month-by-month age equivalents, our goal is still for her to track according to her adjusted age. Many doctors, schools, therapists, etc. stop adjusting for prematurity at age 2, but folks in the NICU follow-up clinic say to give micro-preemies (preemies born weighing less than 2 pounds) until age 3 to catch up. In other words, she will look more delayed because most assessments stop adjusting, but don't get too worried about lack of developmental catch-up until she is 3. (But then again, much of a child's developmental trends are well in place by age 3; that's why many public health organizations focus on the 0-3 years.)
• Given her history, every single one of these scores is absolutely amazing and far better than we even risked imagining 2.5 years ago.
• And the usual caveat: no developmental assessment (or any standardized test) is perfect.

That being said, these scores are okay. I wouldn't say she blew it out of the water or anything, but none of these scores is really surprising. Based on her adjusted age (24 months), she is delayed in expressive language (by 2 months), fine motor skills (by one month) and, most significantly, gross motor skills (by six months). Based on her actual age, she is delayed in every category, the most dramatically so being her 9 month delay in gross motor skills. This score is even more sobering when I realize that had she not started walking this summer or had we done the assessment at our regularly scheduled appointment (the day after her birthday), she would have scored at an 11-12 month level for gross motor skills. The positive flip-side of that is that she gained 6 months worth of skills in 2 months just by learning to walk. So I'm pretty sure that Jane and Ashley (our physical therapists) deserve a very big shout-out on that one. In fact, let's take a minute to thank ALL of our incredible therapists: Cindy, Jane, Caroline, Karla, Roxanna, Ashley, Tom and Melissa. Without their help, I shudder to think of how far behind we'd be. As much as I get sick of carting the kiddo around to appointment after appointment, I am so thankful for all the work and love these therapists have poured into my sweet child. It really does pay off!

Based on these scores, we're not sure if Becca is going to qualify for special education services when she turns 3. I don't know if I've mentioned it on here or not, but at age 3, kids with special needs shift from Early Intervention to the public school system for their services. When we moved, we made it a priority to live in a school district with a very good special education program in case we needed it (whether for Becca or for our other potential preemies down the line...and yes, John and I do plan that far ahead for such extenuating circumstances...at least when buying a house!). We'll begin our transition meetings with Early Intervention and Williamson County Schools in January, and they will do another round of assessments, but it looks like she may be borderline for services, depending on which ones they consider primary vs. related. (For example, in many school systems, physical therapy is a related service, meaning that you can't qualify for special education services on physical delays alone. However, if you qualify, say, on speech, you can receive physical therapy at the school as part of your Individual Education Plan.) I know, I know, I'm getting ahead of myself here, but, wow...that's really not that far away! I would be thrilled if she flat-out didn't need services, but I'm afraid that she will fall just above the cut-off and not end up getting the services that would really benefit her. Especially if we lose our TennCare at our next review in the spring, we'd be left with muchos therapy bills. (And therapy is NOT cheap. I opened a bill from PT recently, and each 1-hour session was running about $300. Holy crap.) For now, I try not to think about it too much!

The most important point, though, is that Becca is making tremendous progress. Given the incredible odds stacked against her, she has exceeded everyone's expectations. In fact, if she were taking her O.W.L's, I would have given her straight "O's," for "Outstanding." Yes, we have lots of therapy in our future. (Now that I think of it, I was really hoping that she'd come out with amazing scores and we'd be able to drop some sessions...but we're not there yet.) Yes, we have to do a lot of hard work at home. But yes, she is -- and will continue to be -- absolutely amazing. I'm very proud of you, little girl!

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

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

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

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

We're moving!

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

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

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

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

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

Documented Strawberry Miracle

Here it is, folks: indisputable proof that Becca will now eat fresh, juicy strawberries. Well, half of one, at least. She likes to give the other half to the dogs. Works for me! Many thanks to Caroline, Karla, and Cindy for making this moment possible!

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

On [Not] Being Normal

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

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

I beg to differ.

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

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

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

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

Normal is not:

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

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

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

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

Bloggity Blog Blog

I've been avoiding blogging because there is so much to post about and I never have enough time. But oh well - I'm going for a series of short, disjointed posts and the writer in me will just have to deal with it.

Here's my list -- your blog trailer, if you will --

1. Snowed In!

2. Therapy, Therapy, Therapy

3. Weekend at Bernie's...I Mean Grandma's...Only Grandma Wasn't There

4. Wooove.....Twue Wove

5. The Rumble B's - or - Lucy and Becca Have a Party!

See, it's already time for me to chase my kid, and I haven't even started! But I trust that you loyal Becca fans are happy that there is much kid-chasing to be done. And she's got a new way of running away now. Check this out this video of Becca and Cindy, our Early Interventionist Extraordinaire (and Sasha and Buster, of course)!

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Busy Week!

Tomorrow kicks off the week of a million appointments. Or eight of them.

Tomorrow morning we see Dr. Kelly in the morning to see if we are done with helmet therapy! I'm so glad that we did it, but I'm so ready for it to be over so I can kiss my little girl's head! Tomorrow afternoon we see Jane for physical therapy and Caroline for feeding therapy. Jane is thinking about discharging her, but I'm not sure that she's ready, since she isn't making any moves towards walking or standing on her own. We'll see what Jane says. Feeding therapy should be same old, same old.

Tuesday we see Dr. Lomenick in endocrinology. He'll be looking at her growth and may order the skeletal scan I mentioned a few weeks ago and begin the process of evaluating for growth hormone therapy.

Wednesday, I go to traffic court in the morning (oops!), and then swing home to get Becca and go back to Vandy to see the ENT. I may have to lay the smack down here again to get some answers and a plan because heretofore (ha! I said "heretofore!" That was fun!) I have been bumped back and forth between the ENT and the audiologists. There is definitely something going on with her hearing, as she keeps performing poorly on her tests, but Dr. Werkhaven keeps failing to see a problem. We'll see about that. You may remember that he is not my favorite specialists, but he is growing on me. He'll win big points tomorrow if he a) washes his darn hands before touching my preemie in the middle of RSV season and/or b) figures out what is going on and how we are going to deal with it. My guess is that we'll end up scheduling surgery for a new set of tubes (very minor surgery, no worries).

Friday we have Early Intervention, occupational therapy, and feeding therapy, all regular appointments.

Well, that makes for a full week! I'll report back as I can!

And because she's so darn cute, here's your Monday morning Becca fix:

Might be one of her last pictures in her helmet!

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!

Resources for Families with Kids with Special Needs

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

SSI

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

For more info on SSI, visit the SSA website.

TennCare

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

For more info on TennCare, visit their website.

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

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

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

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

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

Tennessee Early Intervention Services

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

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

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

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

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


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

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


Until Journey's End

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

Who We Are

Our Mission and Vision

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

We strive to achieve our mission by:

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

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

_____________________________________________________________________________________

Why We're Here

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

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

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

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

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

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

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