Community Helpers

Becca's class has been doing a unit on community helpers, learning about public servants like firefighters, police officers, teachers, construction workers, mail carriers, nurses, and doctors.  At the end of the unit, they had "Dress Like a Community Helper" day.  Not surprisingly, Becca chose to dress like one of the helpers she is way too familiar with - a doctor.  Apparently, the day before, when they talked about doctors, Becca told the class everything a doctor does at an appointment.  It seems she's been through a few of those.  :)  Here's our Dr. Becca!

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!"

Report Cards

Becca LOVES school, which she very adorably calls "tool". She loves her friends (one of whom is an old NICU buddy! Let's hear it for Pod E!), she loves her teachers, she loves the toys, she loves the playground, she loves everything about school. If you ask her, she'll tell you that she wants to go to school every day. (Right now she goes for 2 hours on one morning.) Which is one reason I am furiously trying to find a job. (No 2nd income = no $ for school...though I wouldn't mind all the free time!)

Because Becca's school (W.A.V.E.S.) is a special instruction classroom for Tennessee Early Intervention, she has an Individualized Family Service Plan with goals, outcomes, etc. (It's the toddler version of an IEP.) We need to do some updating on her goals (especially regarding snack time!), but right now her school goals are:

1. Initiate social contact with others during 2 play activities.
2. Use words and gestures to communicate wants and needs during 2 classroom activities.
3. Walk independently from place to place during 4 classroom routines. (This includes stepping from surface to surface on the playground.)

We get a progress report every month, and this month I was excited to see that she is doing each these things "all of the time" with "very little help." What a big girl!

What I love most about these progress reports, though, is the few sentences her teachers write to summarize her progress. Here's what this month's note said:

"PROGRESS: Becca continues to become more active in the classroom, moving from place to place in order to participate in a variety of activities. She uses words to request and to identify objects, pictures and people when asked and approaches friends to join play activities."

Here's what I hear/see when I read it:

"PROGRESS: Becca is the most adorable child ever. She is very independent and is walking everywhere! She is a genius and enjoys sharing her genius with her many friends in class. We just want to squeeze on her all day long!"

I know it's no summa cum laude or anything, but I couldn't be prouder!

I could be out of control by the time she gets to kindergarten!

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!

Ish

11 days post-op, and we're still doing fine. I can't think coherently at the moment, so I'll just throw some words up here and see what sticks. Like pasta on the kitchen cabinet.

Becca's tummy is healing up well. Her bellybutton incision is looking good (though still red, but John and the pediatrician swear it's fine), and her tube is doing fine. It's still oozey, but from what I hear, it might be that way for a while. That's good, because gastric juices are fun. At least it's one bodily fluid that doesn't stink. Toddlers are stinky. Seriously stinky. Poop, pee, milk, juice, sweat, dirt, smelly feet....stinky kids.

We followed up with the (new) pediatrician on Friday. Dr. Rawls. He's kind of adorable. Like I kind of want to bring him home and keep him around because he's cute and sweet and adorable. But then he'd probably want to bring his own 2-year-old with him, and our house can only handle the stink of one toddler (see above).

Also in the fun, new category: Becca's school. The really exciting option for which TEIS would pay for two 5-hour days (High Hopes inclusive preschool) has yet to work out. As in, there are 3 kids ahead of her on the waiting list...which is not what I was led to believe initially. Crush my dreams already, will you? BUT - option b will still be good for her. Option b = WAVES (which I think stands for something, but I don't know what). She'll attend the WAVES early learning classroom (10 2-year-olds, 4 developmentally delayed (like B) and 6 typically developing) for two hours a week. Yeah, two is way less than ten. Especially when the school is 25 minutes away. But two is more than zero, and she's going to love it. And they are fabulous. We visited today and Becca had a great time, even going "owside" on the playground with the class. (By the way, "owside" = paradise to Becca, even though it's hot as Hades these days.) Every day, they work on some kind of sensory issues (today it was getting paint on your hands and doing handprints) and practice using an open cup during snack time. If I can get them to potty train her, I can retire. Of note: Becca is tiny. It was crazy to see her in a room full of kids her age. Granted, she's on the young end of two, but, wowzers, Itty Bitty is seriously itty bitty. Crazy to see it so obviously. She didn't mind though; as Miss Lola said, "I think she'll hold her own." Understatement? Mwahahahahahahahaha....Becca's taking over the classroom. I think the word "gregarious" might have been used. Or maybe that was at church. At any rate, I don't know where she gets it. John and I are so antisocial. (Demystifying John Hill lesson #45763: yes, he's on the quiet side, but he's extremely social...as long as someone else makes the plan.)

But the really exciting development in our house is the addition of new life...in the form of fish. Last Thursday, Becca and I went to PetSmart and picked out two male gouramis and one male and one female dalmatian mollies. I thought it would be fun to have fish babies down the line. Little did I know that Ms. Perdita was already knocked up. On Saturday when I went to bed, we had 4 fish; on Sunday morning we had 11...then 12...and then today, we discovered another baby, for a grand total of 13 fish: 4 adults, 9 baby mollies. On Sunday afternoon, I drove the 6 minutes to PetSmart again (seriously, 6 minutes! Wahoo!) and bought a little floating baby fish net/cage thing to keep Pongo, Perdita, and the as yet unnamed gouramis from eating Freckles, Thunder, Lucky, Patch, Rolly, Cadpig, Pepper, Penny, and/or Two-Tone. (Big thanks to cousin Jessica for the exhaustive list of named Disney dalmatians.) Becca hasn't noticed the babies yet, but she loves watching her "ish!" (always with an exclamation mark). I'm trying to figure out the best way to give her some extra inches without tumbling to her death while ish-watching. Still, very, very fun. I promise I WILL post pictures...just like I still promise that I'll post about everything else...someday...maybe for 2 hours on Monday mornings...with a chocolate butterfly at Meridee's...yum. (Did I mention that Becca's school shares a parking lot with Meridee's Breadbasket...which is, to put it mildly, heaven...and even more special because I used to hang out in the owners' house and eat their fresh bread, sweets, homemade pastas babysit for the owner's kids. And the kids were pretty sweet, too.

I can't stand it any longer. I've got to go watch the season premiere of Psych. Man, I love USA and their USA network original series. And I probably need some ice cream. Probably. Definitely.