Pouches for Parents

Two posts in one day...craziness, I know!  But this one's not about me and my little family.  Well, not directly.  But y'all have heard me complaining about the discomforts of hospital life more than once...and while we are staying far away from hospitals this summer (so far, so good), thousands of kids and their families are taking up residence at Vanderbilt Children's Hospital, otherwise known to Becca as "MY hospital!" (BTW, the current Vandy Children's marketing campaign - totally ripped from Becca's brain.)  And Vandy is great, but no hospital is actually comfortable, especially when you end up there on short notice and without the personal niceties of home.  So my friend Allison Glasgow, whose niece is often a patient at Vandy, is doing something about it.  She's a 31 consultant who's running a very special deal, outlined below. Basically, she's turning a staple 31 item into a care package for parents of kids in the hospital.  It's a brilliant idea (and one that I hope NOT to be on the receiving end of this summer).  I'll let her explain the rest in the flyer below, but let me also say that the Large Utility Tote she mentions (which you can buy deeply discounted as a bonus) is my FAVORITE 31 product out there, and I'll be completing our family's set when I make my pouch donation and buy one for baby boy, just as soon as his name is solid enough to be monogram-able.  Also note: the flyer says that she has to have your order by June 22, but she's willing to leave it open until June 29 - but that's a firm deadline so that she can get the orders in by month close.  To order, use her contact info in the bottom right of the flyer.  (You may need to click on the picture to view it larger.)  Thanks!

p.s. I'm not getting anything from this sale - except a great deal on baby boy's bag when I donate 3 pouches.  I just think this is a great idea, and one that hits home with our family and many of your families.  And if you ever find yourself heading to the hospital with your kiddo for an extended stay, I highly recommend taking your own toilet paper.  Theirs sucks.  :)

Even Though She's Very Small...

...inside she's very TALL!  

After Trunk-or-Treating as a very SCARY MONSTER at church and dancing as Tinkerbell at ballet, Becca finally settled on (with my, um, encouragement) being Madeline for real trick-or-treating.  I was really excited about this idea because she's been on a Madeline kick lately, she's as adorable, tiny and mischievous as Madeline, and it was the warmest of the three costumes, which became important by Halloween night.  It was an assembled-at-home costume, thanks mostly to the adorable blue wool coat we picked up at our church's clothing giveaway this fall.  Add a peter pan collar and a red bow, and voila! - Madeline.  Or, at least, close enough to Madeline to convince a 3-year-old.

We had a great time hanging out with our friends (and Becca's other family), the Lovells, where Halloween night is a BIG deal.  They don't mess around with the candy.  Here's what they had to give out:

And, yes, those are full-sized candy bars!  And, yes, if you answer your question correctly, you get several of them!  Tammy is 3rd-grade teacher, so she knows just what kind of question each kid ought to be able to answer.  She even made me explain the difference between Arminianism and Calvinism.  Makes me think that the Board of Ordained Ministry might be well-served to pass out chocolate as they ask their questions.

But back to Becca.  She had a great time being Madeline...

I had a great time being a butterfly (and silly!)...

And John had a good time being...John!  (Actually, he wasn't feeling too hot, so he bailed shortly after we took Becca around the cul-de-sac.)

Becca even picked up a little French!

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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!"

Things I Forgot To Say: Becca's Garden

While I can remember freakishly minute details of things that happened years ago, I am horrible at remembering practical things.  You may say I'm much too young, but I, with startling regularity, will walk into a room and not remember why I am in there.  Lately, I've even been forgetting a thought mid-sentence.  I chalk it up to mommy brain, but feel free to diagnose me otherwise.  


But the point is that this forgetfulness has affected my blogging.  There is so much that I meant to tell you about in 2010 that I simply forgot to mention.  I mean, I definitely remembered these things a lot, even writing posts in my head, but I never remembered then at a time when I could actually sit down at the computer and write.  Oops.  Some of these thoughts and stories will fall by the wayside, but there are some that I'd like to document - like, say, Becca's 2nd birthday!  (Yep, never got to that one...got caught up in the hospital drama, then traveling, etc.) So for the next few weeks, I'll be running an oh-so-creatively-named series called "Things I Forgot To Say."  Might as well call it like it is.  :)  So first up:  Becca's new bedroom.


When we moved to Spring Hill in June, we bought a house, which meant that, unlike living in a parsonage, we could do whatever the heck we wanted to it.  And what I wanted was for Becca to have a cozy, magical room for her pre-school years.  Lucky for me, our friend Jeannie has the talent and kindness to make my dream come true!  For Becca's birthday present, Jeannie painted a mural in her room - on all four walls!  John and I painted the walls "twilight purple" and Jeannie transformed it into a gorgeous garden at dusk.  


It is so beautiful.  It's cheerful and calming at the same time.  I love it so much that when Becca isn't home, I sneak in there to sit in the rocking chair and read.  When I was rearranging Becca's furniture last week, I took the open-walled opportunity to snap some photos of it.  It's a small room (and I'm not a great photographer), so I wasn't able to get pictures of entire walls, so you'll have to use your imagination to picture how it all comes together.  But trust me, it's awesome.  


First, let me tell you about the decorations.  Since the walls themselves are so beautiful, we choose not to hang many of the pictures that were in Becca's room in Bethpage, but we kept a couple of things.  Here are the BECCA letters that Aunt Robyn made for her (and Becca can name each of the letters now!):  

And this next piece of artwork makes me cry a little (in a good way).  You've heard me say before that we had the BEST primary nurses when Becca was in the NICU.  One of these five amazing nurses, Stacy, is also amazingly crafty.  Since she worked nights, when the NICU is calmer, she had a little more time to "play" with the babies.  Every month, she took footprints of Becca's tiny feet, heels touching to make a heart shape.  She matted and laminated them and left them for us to take home.  I saved everyone of the them and had them matted and framed, along with her crib card that I count as a badge of honor, bearing Becca's tiny statistics at birth.  I love how it turned out, and I will be forever grateful to Stacy for taking the time to make such a special keepsake for us!  Here's a picture of the entire piece:

And one of the crib card:

And one of her first footprints next to my thumb for size reference:

And then the last footprints taken shortly before we brought Becca home:

Okay, without further ado, here is Becca's garden!  (The pictures go around the room clockwise.)

(I'm posting this one mostly so you can see the funky cut-out over her closet.  What do you call that?  When I get my act together, I'm planning on draping some flower garland off of it.)

(Note the gorgeous curtains that were passed on to us by my friend Scottie - so perfect!)

Becca's crib now sits right under this tree.  

I think it will be especially cozy when she moves to a big girl bed!

 See the handprints at the bottom of that bush?  Here they are up close.  Jeannie and Nana Dana surprised me with this detail, which is SO precious!  Becca loves to put her hands on them and give herself five.

 I mean, seriously, you want to move into her room, too, don't you?  Stacy, Robyn, Scottie and, most of all, Jeannie, thank you SO much for making Becca's space special!

Aubrie's Angels

You probably remember hearing me talk about my fabulous friend Mollie. She's amazing and hilarious and if you like this blog, you'd probably like hers (maybe even better; she's that amazing). On her blog, you hear about Daxton (who "wasn't ready for the world," born at 23 weeks, 5 days) and Tyler (for whom "the world wasn't ready," the big ole full-term chubster that he is). Each of these boys is in the running for Becca's arranged marriage partner. But on Mollie's blog, you'll also hear about Dax's twin, Aubrie, who was born at 21 weeks and really, really wasn't ready for the world.  Sadly, she only lived in this world for about a day.

For the past two years, Mollie has been trying to figure out how best to commemorate and honor Aubrie's brief yet beautiful life. A few weeks ago, THE idea hit her, and Aubrie's Angels was born.

I've whined mentioned before that having a kid with developmental issues involves a lot of extra costs, even if insurance covers everything medical (which is usually doesn't). With Becca, there is/was all the food we had to special order, the thousands of dollars in gas to get to and from all the therapy and doctor appointments, the special clothes, the adaptive gear, the therapy tools, and the toys.

"Toys?" you say? All kids need toys, right? And most of the kids we know have far too many toys! True, but for kids with special needs the right kind of toys are very important. Preemies and other special needs kids need toys that appropriately stimulate their various senses and specifically work their developing skills. (Think about it: it's not like you can tell an infant or toddler to do 10 reps of a certain motion, like you can do in adult physical therapy. You have to provide him or her with the motivation -- on their level -- to do perform the desired activity again and again.) I can't tell you how many times we've been in a therapy session, and the therapist has suggested and/or asked us to get a particular toy to use in our home therapy exercises. I'm a sucker for any excuse to buy a gift for Becca, but these toys (often premium or specialty brands) don't come cheap. While money doesn't exactly grow on trees here at Itty Bitty Hill, we manage. For many other families, though, the cost of these toys is downright prohibitive, and their kids go without the extra help of these important developmental and sensory toys. So these kids, already at a disadvantage because of their early birth or other special needs, fall farther and farther behind.

But you can help! As one of Aubrie's Angels, you can donate to help provide very special Christmas gifts that will benefit these kids throughout the year. In their first year, Mollie set a goal of collecting 100 developmentally-stimulating toys, and Aubrie's Angels across the country have stepped up to the challenge, almost meeting our goal already! But we'd also love to provide each child with a developmentally-appropriate book to go with their toys...because we at Itty Bitty Hill know the tremendous effect reading with a child can have on all aspects of development. And since I want to make any gift you give to Aubrie's Angels go even further, I am happy to use your monetary donations to purchase Usborne books at cost to give to these special kiddos.

And look what your small (or large!) gift will provide! A gift of $3-$7 will provide a basic learning board book (ABC's, 123's, etc), a visually-stimulating "Find-the-Duck", etc book, a special touchy-feely board book, a first-learning workbook, or -- so important to this population -- a book about going to the doctor. A gift of $10-$12 will provide a deluxe Touchy-Feely book, a first word dictionary (great for kids with communication delays) or the ever-popular Animal Hide-and-Seek, with flaps AND touchy-feely patches, (ideal for a toddler with sensory and fine motor issues).  Your generous gift of $20 will provide The Complete Book of Farmyard Tales, which includes 20 stories with 2 reading levels and a read-along c.d.* I'll have to get this order in soon, so take a minute now to donate securely by clicking on the link below. Thanks for helping to honor baby Aubrie by helping some special kids -- you truly are an Angel!

*The books listed are intended to give you an idea of how far your gift can go. I will work with Mollie to choose books that are best suited for the individual child who will receive them. If you'd like your contribution to be used for a particular book, please indicate it in a comment on this post. Thank you!

Prayers for a Dear Friend - Updated!

Our friend Narcie is a United Methodist campus minister at Winthrop University in South Carolina. About 2 weeks ago, she was at a campus ministry conference, and she had a seizure. Turns out that she has a tumor. In her brain.

Suck.

You may remember Narcie, Mike, Enoch, and Evy from our visit with them last summer. They are fabulous and amazing and some of my favorite people in the world. Oddly enough, Narcie was present for part of mine and John's first date. (It's a long story that tells you a lot about my husband - but our first date involved a free campus dinner that Narcie hosted. Good times.) Becca is between Enoch and Evy age-wise. And they are adorable.

Narcie had surgery today to have the tumor removed. I haven't yet heard how the surgery (a left frontal craniotomy) went. The surgeon was hopeful that he would be able to fully remove the tumor and was glad to see that though it was touching the motor cortex, the tumor had not penetrated it. Even so, he was messing around in some really delicate areas (hello, it's her brain), and we've been praying all day for steady hands and precision.

Assuming that everything goes perfectly, Narcie will be in ICU tonight and on a regular floor for a few days before beginning her recovery at home. They won't know anything about what the tumor actually is for 2-3 weeks.

I'll update when I hear something, but please do remember the Jeter family tonight and in the coming weeks and months. The next few weeks and on are going to be tough, no matter what this "interloper," as Narcie called it, may be. So do what you guys do: pray, think good thoughts, meditate, hold crystals, whatever. Just send these guys some love. They are such lovely people!

p.s. If you would like more information, you can follow her blog at http://narciejeter.wordpress.com. I'm not sure if someone will post in her stead over the next few days or not, but if you have a few minutes to check it out, I'm sure you'll understand why we love Narcie so much!

*Update! Narcie came through the surgery well, and they think they got all of the tumor! Wohoo! Of course, that's not the end of the issue, but it's a great big huge wonderful step in the right direction! For more info visit http://narciejeter.wordpress.com/ .