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!"

On Therapy

One of Becca's old therapists is giving a lecture on working with pediatric patients and their families, and she asked me if there was anything I'd like to pass on to a group of aspiring therapists.  Apparently, I had a lot to say, so I thought I'd share it with you.  Preemie/special needs parents, what else do you have to add?

So here's my advice to therapists, which is also fairly applicable to nurses, now that I think about it.

Balance the professional and the personal.  We've had some sessions in which I've felt like the therapist and I interacted more than Becca and the therapist.  But worse was the therapist we had that was SO "professional" that it was completely isolating.  I didn't feel like I was involved in her therapy at all.  I sometimes wondered if I should just wait in the lobby - Lord knows I could have used some downtime for myself and a book!  I know absolutely nothing personal about that therapist to this day.  (And if I'm completely honest, I'll admit that I'm petty enough that it at times affected my implementation of our home therapy program.)  Being the parent of a preemie is SO SO SO isolating.  Remember from September through March (or whatever RSV season is in your area), family, doctors, nurses and therapists -- and maybe a few close friends -- are essentially the only people we see and interact with on a regular basis. Seriously.  So be friendly with us, even if you can't/don't want to really be friends with us. You are our support system.  I mean, I don't need to know about the fight you had with your boyfriend last night, but I love knowing that you've got, say, a daughter the same age as Becca or a kid in college or a pair of pugs that are the light of your life.  Give me something to humanize you and make me feel like we are partners in our efforts.  (Note: if you do have a child about my child's age, DO NOT compare their abilities.  We do that enough already and don't need your help in that area.)

Know that therapy fatigue is real.  Most of these kids will be in multiple therapies each week, each with a home therapy program, likely alongside lots of medical needs.  Let us know what we need to be doing, but prioritize.  We can probably only manage about 2 assignments a weeks.  If it's appropriate, give us permission to sit in the lobby occasionally.  Most likely we'll want to be in the sessions, but every now and then a break is an amazing treat.

Work together with us on goals.  Don't just make them up on your own.  At least run them by us and see what our priorities are.  With all due respect, I know you are a professional, but in the grand scheme of things, what matters are MY goals for my child (and if they are old enough, their own goals), not your goals.  Therapists come and go, often frequently, but we're the ones raising this child.  Provide a written copy of the goals (whether it's hard copy or e-mail) so that we can remind ourselves of them and share them with other parents, caregivers, etc.  

Help us work with the doctors.  Sometimes you are able to get access to them that we are not able to get on our own.  Sometimes you can express our concerns to them and they will be received differently (and taken more seriously) if they come from you.  However, remember that we are the experts on our children, not the doctors. 

I can't believe I have to mention this, but it has happened on more than one occasion: if my child makes some kind of artwork/picture/design/anything on paper during the session, DO NOT THROW IT AWAY IN FRONT OF HER.  Even if it's a mess of shaving cream on construction paper to you, to them it's a work of art that they are proud of.  Set it aside, and when I don't take it with me, toss it - but not in front of the kiddo.  They notice these things, even at age 2.  Becca even requests that her pictures goes on the wall (we have a special frame) or on the fridge.  Sometimes she puts them up herself.  She knows that what you do with a picture is a commentary on it.  So respect her efforts and her feelings, please.

And in general, if we are a little high maintenance, a little (or a lot) scattered, not always punctual, and/or just generally nutso, give us some grace.  Unless you have been in our shoes, you can't understand the scars that our journey has left and the stress that we continue to be under. We have spent too much time fighting for our children's lives for us to be normal, and with therapy, we're still fighting for our children's quality of life, even if they aren't in physical danger anymore.  A pattern of missed sessions and non-compliance is one thing, but otherwise, a little kindness and understanding can go a long way with us. And we will love you forever for it.

Becca Ou-shide!

This bit of adorableness brought to you by Nanny Hitchcock, who gave Becca the cute shirt, Mary Farris, who passed on the ridiculously fun pig squeaker shoes, and our amazing physical therapist, "Miss Ash-ee," who taught Becca how to kick a ball.  Enjoy!

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Biker Chick!

Looks like Becca doesn't need Mama anymore to be a biker chick!  She's got wheels herself, and she knows how to use them!  Big, big, big thanks go out to Mr. Kyle, Miss Ashley's (our PT's) husband, who specially adapted this tricycle so that Becca could have a bike just like the other kids her age - and still reach the pedals!  Ashley and Kyle are into cycling (Ashley's actually the one who got me into this triathlon mess :) ), Kyle's an engineer, and Ashley (obviously) works with kids with special needs.  Put them together and, voila!  Ashley and Kyle are a part of a non-profit that works to get adapted bikes to kids that need them.  We were honored for Becca to be their guinea pig.  Kyle essentially stacked the pedals so Becca could reach them and attached velcro straps that wrap around her feet so that she'd have some extra help as she pedaled (much like fancy pedal clips).  He also added a bracket so that he could move her seat up farther.  It means so much to me (and to Miss Ashley!) to see Becca learning such a "normal" child behavior!  Pretty soon, we'll be riding side-by-side (though Becca and I both still love riding together on my bike)!  As Becca says at the end of the video, "Thank you Mr. Kyle [and Miss Ashley]!"

(Sorry about the crappy cinematography.  An uncoordinated camera lady walking backwards while filming on a phone does not good video make.  But I think you get the gist of it!)

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TennCare Cuts

Last night, Nashville's NewsChannel 5  covered another story about TennCare and disabled kids.  The Hamby family's story is very much like ours (except that their son has had 21! surgeries, making Becca's 5 look pretty measly).  Little James will be losing his TennCare coverage as of January 1st.  (I'm not sure why had got to keep his so long when most of us were kicked off early this year.)  His mom stays home to take care of him and to shuttle him to doctors' and therapy appointments, and his dad works 4 jobs, one of which is as a public school teacher.  Even with their private insurance, the co-pays and excluded items will cost a great deal of money, and they are afraid that even with dad's 4 jobs, they won't be able to cover it all.

These are not irresponsible people who have made poor decisions.  They are (or at least appear to be -- I don't actually know them) hard-working people who had the misfortune of having a son born very early.  (In the piece, the reporter says that he was born 5 months early, but I'm guessing what she really meant was that he was born AT 5 months - 23-24 weeks, as opposed to 20 weeks gestation.  I could be wrong, and people have assumed that Becca's birthweight is a typo before, but I think I most likely would have heard about a surviving 20-weeker born in the mid-state area.)  They didn't choose this path, and they are doing everything they can to give their son the best shot at living up to his potential.  But then, due to "budget cuts," the state pulls the rug out from under them, and they will likely have to begin choosing from among the many therapies, appointments, and/or procedures, all of which are contribute to giving little James the best shot at a normal life - and, if you have to think about it in economic terms, the best shot at becoming a contributing member of society, functionally and financially.  Sure, in the article you hear that a local business collected $1,400 for the family, and that's GREAT, but let me tell you that $1,400 will not go far.  $1,400 won't even pay for 2 weeks of Becca's co-pays and excluded expenses.  

I don't mention Becca's expenses and the community contribution to the Hambys to ask for pity or contributions.  I mention it because it's evidence that we need a systemic, societal approach to caring the members of our community that cannot care for themselves.  I don't want to get into a debate about people who other people think could or should  care for themselves; I'm talking about people who flat-out can't do so.  Good Lord, if we, as the wealthiest society in the world, can't care for disabled kids, what in the world is wrong with us?  What's next, shooting golden retriever puppies for the fun of it?  To me, this is one of the basic functions of government: to serve as a safety net for those members of society who can't meet their basic needs.  And I'm also not talking about having the state pay to send Becca to Disney World or, oh, Harpeth Hall (though, HH folks, if you are reading and want to send a full scholarship our way, I'll be happy to share Becca with you in, oh, 7 years ;) ).  I just want to keep my baby from being cut off from her health care.  

Our private insurance does not cover any of Becca's feeding supplies (about $700/month) or her special formula (also about $700/month) or her growth hormone shots (about $1,000/month, but that will go up as her dosage increases), and it leaves us with 20% of nearly all covered expenses.  20% of her therapy costs is $822 a month (yes, that's the 20%, not 100%), leaving us with a grand total of about $3200 a month.  Add in a pediatrician appointment, a visit with one of our nine specialists and a lab test of some sort (which would be a pretty slow month doctor-wise), and we're easily up to $3500.  Multiply that by 12, and you've got $42,000 a year.  What "normal" family can afford that kind of cash?  Even if I do (crossing my fingers) find a job, we'll have to pay to put Becca in daycare full-time (and only certain daycares would accept her, mind you), which would run somewhere around $10,000 a year in these parts, which quickly tops out above the top range of my earning potential- and I have a master's degree.  We have been very, very, very fortunate to be able to keep our TennCare coverage this year (for Becca - John and I don't qualify, and that's fine with us) because of our modest income, but next week I have our recertification interview.  We could quite possibly lose our coverage in January, too.

Makes you think, doesn't it?  Especially in a week in which Congress voted to extend tax cuts to the wealthiest Americans, essentially giving them $36,000,000,000 back in their overstuffed pockets, and to exempt the first $5,000,000 of an inheritance from estate taxes.  Perhaps unfortunately for me, I don't know anyone who will benefit greatly from these breaks, as they are reserved for the wealthiest 0.1% of Americans.  

I count among my readers some very conservative, very compassionate, very faithful and very generous people, whom I know interpret the role of government differently than I.  Many of them would say that it's best to let people keep their own money so that they can distribute it to charitable causes as they see fit.  And many of you actually put your money behind your words.  But I guess I'm a realist (some of you will no doubt see me as a pessimist): I think that when left to our own devices, we hoard more than we need and we, the collected members of society, fall short in helping others meet their basic human needs.  Often charitable giving is heartfelt and helpful, like the $1400 given to the Hamby family...but it's still a drop in the bucket for this family, and there are many more families like them.  I have a dear friend who has long been a political and theological conservative, but lately she has tended to vote more Democratic because, in her words, she "had to stop voting based on how [she thinks] the world should be," with folks, churches, etc. giving enough to help everyone who truly needs it, "and start voting based on how the world is."  

I would love to be proven wrong.  If you count yourself among the super-wealthy (or if the IRS does), adopt James.  Or Dax.  Or Bella.  Or Mary Farris.  Or Becca.  Cover their expenses.  Go for it.  I dare you.  But I'm not holding my breath for you.  

To the rest of you, who may not be plotting the best way to pass on your $20,000,000 estate to your kids, all I ask is that you keep these issues in mind as you ponder your political inclinations, as you vote, as you talk with friends.  And if you're in Tennessee, maybe you could contact your incoming state legislators to encourage them to reinstate TennCare coverage for disabled children.  Because, really, if we can't agree to help these kids, I'm afraid there is very little hope for any of us.

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!

This Week's Preview

This is one very busy girl this week.

Monday, she goes to school (hooray!) and then to see the nutritionist at Vandy.

Tuesday, she goes to gymnastics in the morning and then the ENT and audiologist in the afternoon -- AND TURNS TWO, ADJUSTED! Wowzers!

Wednesday, she has physical therapy, occupational therapy, and a pediatrician appointment (probably with a flu shot), all in a row.

Thursday, she has her 2-year (albeit late) NICU follow-up appointment, which is rumored to be 2 hours full of in-depth assessments. I, of course, am excited about this one, except that we are going to have to wake up at the crack of dawn to get there!

Friday, she has feeding therapy, like normal.

SuperDad is in Kentucky all day on Tuesday, and on Thursday night I - I'm so excited! - fly to NYC to see one of my best friends in the whole wide world (Lauren S., for you Brentwood folks) and her sweet baby Everett (or Eh-vy, as Becca calls him)! We had some vouchers from past travel so Lauren's sister, Sarah, and I are flying for $64 roundtrip! Wohoo! So it's really a busy week for all of us, but I'll try to update as we make our way through appointments. And while we don't actually (yet) use the Wii in her therapy, I do often see this hard-at-work expression on her precious face. She's such a trooper! You're doing great, Becca Hill!

Gymnastics!

Last week when I caught Becca doing this:

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I knew that my plan to enroll her in parent-and-child gymnastics classes was a good one! (And apparently Sasha needs them, too!)

We started today at the Spring Hill location of Let It Shine, the same organization through which I took gymnastics classes as a kid. She had so much fun! (And I kind of kind of loved it, too!) We spent the first 15 minutes working our way through an obstacle course, which included activities like climbing up and going down a slide, walking on two stripes (that will eventually turn into crab walking or bear crawling), doing a very rudimentary cartwheel over a bolster, trying out a forward roll down a slope, etc. Then we moved into the big gym and bunny-hopped and/or ran down the tumbling track (think huge mattress with sides), rode a zipline (on a seat and being supported, of course), walked on balance beams, jumped on the trampoline and, yes, jumped into the foam pit! (The foam pit is a big pit with a trampoline at the bottom, filled with foam cubes. It's fun to get lost in, to wiggle in, to bounce in, really to do anything in. Everyone loves the foam pit! Is this a Let It Shine thing, or do most gyms have them?)

Becca did really, really well, considering that it was her first class and given her sensory issues. I often talk about her sensory issues in relation to her eating, but they also come into play (in a big way) with gross motor skills. Since her vestibular (balance) centers are wonky and she doesn't have good proprioception (the ability to know where you are in space and in relation to objects and such), skills like standing, walking, running, jumping (and even earlier skills like crawling) are difficult for her (hence the delays). At the same time, though (I feel like I say that all the time...sensory issues are so complicated!), since she is hypo-sensitive, generally speaking, (meaning that she doesn't really feel things correctly), she seeks sensory input she can feel well, like rolling, spinning, swinging (depending on the direction), shaking and generally rough-housing.

Gymnastics, then, is perfect therapy for her! It works many of the areas that need to be worked by doing things that she loves to do! And actually, her physical therapy sessions these days really do look a lot like gymnastics class, complete with a pit (not foam, but similar), a balance beam, stairs and a track. (There are also other exercises, like kicking a ball, that we do that aren't really gymnastic-y, but they all work together.) And since Becca is so social (if you know her in person, you are smiling now, right? Because she's really beyond social. :) ), the class setting is ideal for her. She loves to watch other kids and then jump right in. According to her (new) occupational therapist (who is great but is no Karla B. ;) ), since things feel weird and unstable to her, she depends more on watching other kids (or people in general) do things to know that they are okay. The good thing is that with her personality, she doesn't just watch for very long!

And I'm not going to lie; I really liked getting to meet other caregivers of young kids in the area (mostly moms, but one dad and one grandmother). I'll also confess that while I certainly don't want to put any pressure on Becca to become a star athlete at age 2, I also have some long-term motivation in enrolling her in gymnastics. Becca can and will do whatever she wants in terms of extracurriculars (as long as we can manage it logistically and financially), but I also want to introduce her to the areas that might be a little easier for her. Let's face it: she's not built like your average WNBA star. Of course I'd never say that she's not going to play and love basketball, but it makes sense to start her off with activities in which she's not already at a disadvantage because of her size. I mean, she is still our Itty Bitty - but I'm not about to be the one to tell her so! :)

p.s. Big thanks to Aunt Daphne and Uncle Rob (and crew), Martha S., and Cousin Mary Lou, our gymnastics "sponsors" for September and October classes! :)

An Appointment a Day Keeps the Doctor Away?

Oh wait.  That doesn't work.  But we tried it this week.

Monday: First visit to WAVES.  See two posts ago for more details.  Definitely a fun, fun appointment.

Tuesday: Endocrinology.  Regularly scheduled, also turned into hospital follow up.  See detailed description below.

Wednesday: Physical therapy with Ms. Ashley at 100 Oaks.  I may have said this before, but Ms. Ashley is wonderful, though she is definitely no Ms. Jane, but the facility is a magical playland.  I want to have my birthday party there.  Zip line, foam pit kind of thing, a track around the room for riding toys, a mini basketball court, and fancy stairs with - how to explain this? - colored water in the walking surface that moves around when you step (make any sense?).  Becca had a hard time focusing on the task at hand (whatever the task was at the moment), but, frankly, so did I.  So fun.  Now that Itty is walking, we are working on stooping to pick up a toy and learning to use our feet (to kick, etc.).  It involves putting stickers on the tops of her shoes and kicking beach balls.  PT is fun.  (And this makes me feel better about spending Becca's gymnastics money on repairing the leaking water main.  Homeownership is not fun these days.)

[Just for the record, I am ignoring my daughter, who is standing at the back door (I am on the deck) screaming, "Mama! Mama!  Mama!  Mama!"  I wonder how long it will take until it bothers John, and he rescues her.  (He is "primary parenting" right now, as I like to call it.  Thank God for Fridays.)]

Thursday:  Occupational therapy evaluation.  Good eval; still looking at weekly therapy whenever a spot opens up.  Fine motor still looks good, but we'll work on sensory issues and some related feeding issues.  (OT is the primary discipline for working with sensory integration, the kind of therapy required for kids with sensory processing disorder, or "SPD.")  I'm still crossing my fingers that Karla will miraculously decide to transfer over to Vandy, but for now, I'm waiting for a call.  For sanity's sake, I might hold out for a slot that piggybacks on PT.  Therapy exhaustion is a very real issue, and not just for the kids.  There's only so much back and forth and home therapy exercises you can do before you all burn-out.  But hopefully that will open up soon.

Friday:  Feeding therapy, first session.  Again, no Ms. Caroline or Ms. Roxi, but I think Melissa will work well with Becca.  She did convince her to lick a piece of peach drenched in syrup, so that was progress.  We'll do 20 sessions once a week, which is down from the 2 per week we were doing, due to availability - as in, we are only able to get into therapy because being inpatient for so long (and having a fabulous inpatient therapist) bumped us up - not even kidding - 40 spots on the waiting list.  Wow.  Again, I say: pediatric feeding therapists, get thee to Nashville!  We need you (and your GI buddies).

Okay, now back to endocrine.  The good news is that we don't have to test her blood sugar anymore, unless we see something suspicious.  But the bulk of the appointment was spent talking about growth (our regularly scheduled programming, right?).  Now that she is two, beginning therapy with growth hormone is an option.  Once we begin therapy, we will continue it until her growth plates close around age 14.  (Yes, that's 12 years.)  After reading Becca's "bone age test," which is just an x-ray of her wrist, looking at whether her growth plates are closing more or less quickly than average (they aren't), Dr. Lomenick's best (highly) educated guess is that her full adult height, without the help of growth hormone therapy, is around 4 feet, 7 inches.  Yikes.  (Note to anyone reading who may be 4'7" or shorter: I am not saying there is anything wrong with being of very small stature.  But I would like to spare Becca some challenges in life, since she's faced more than just about any of the rest of us in her 2+ years.  My guess is that you would agree.  And I'd love to her your input either way.)

To clarify: Becca's body does produce growth hormone effectively, but it likely doesn't use it efficiently, and even if it did, she had such a disadvantage at birth (you know, being 9.5 inches, stretched out head-toe), that she needs extra hormone to help her reach a more manageable adult height (hopefully somewhere around 5' - 5' 2").

John and I have decided that, assuming our insurance will cover it (according to the docs, they have never had a company deny it when it is specifically for kids who were small for gestational age at birth - but I'll believe it when I see it!), we are going to begin therapy right away.  We'll have to give her daily subcutaneous injections.  (Subcutaneous means "under the skin;" they aren't injected directly into a muscle, like many vaccines are).  "SubQ" injections, like the ones I gave myself while I was pregnant, are less painful, though they are still no picnic.

We could have decided to wait a couple of years to begin so that Becca would be better able to understand why we were giving her all of these shots, but there are several reasons we want to go ahead and get the show on the road.  The most important is that the longer you give the shots, they more effect they have.  (Makes sense, right?)  If we're going to do this thing, let's do it.  Kind of how we approach much of life.  This way we'll also see faster results (again, makes sense).  After seeing her at school on Monday, so so so so much smaller than her peers, we agreed that it would be good to at least help her a little before kindergarten.  Dr. Lomenick thinks that if we start now, she might at least be near the bottom of the growth curve by the time she is 5 or 6.  (By the way, she is still hanging out 6 inches below the 3rd percentile.  I'm serious when I say she's not on the charts.)  And finally, if we start now, she'll be used to getting the shots.  She won't like them, I'm sure, but she is a tough kid who gets accustomed to doing difficult things, so I think it's wise to go ahead and use that adaptability to her advantage, rather than waiting until she is a more inflexible 4 or 5 year old (when changes or unpleasant experiences tend to be more difficult to introduce).

As Dr. Lomenick said, though, the question was really about when to begin treatment...because the question of whether or not to treat her, when we have a therapy that is safe and effective, and at least attempting to help her grow taller than 4' 7", is really a "no-brainer."  (Seriously, his words.  Very rarely are doctors so forward in sharing their opinions on such matters.)  And he's right.  I hate the idea of giving her shots, but I know we can do it, and when you start thinking about independent living at 4'7", it gets difficult.  Not impossible, of course, and I have no doubt that Becca could manage just fine, thank you, but that's a lot of adapting.  For example, imagine someone the height of an average 9 1/2-year-old girl (pre-growth spurt) trying to see over the steering wheel when driving.  That's tough.  So we're going for it.  We should hear back from their office with clearance from insurance by next Wednesday.  And we had better have clearance from insurance...because growth hormones are very expensive, especially 12 years' worth.

Next week, miracle of miracles (okay, not really - it was just a lot of rescheduling on my part), we have no appointments, because we will (probably) be going to camp!  John is definitely going to lead a week at Aldersgate Camp (his old church camp and his favorite place in the world), and I'm hoping that Becca and I will get to join him for a few days, God willing and the creek (aka the bog from the leaking water main) don't rise - and the plumbers cooperate.

That's all well and good, but I'm pretty sure 90% of you are here for the pictures.  How about this gem for today, then?

Mommy and Becca, mid-silliness

But on the Other Hand...

...yesterday was one of the best days ever.

Make photo slide shows at www.OneTrueMedia.com

She really walks now - not just a step or two or several more in therapy, but down the hall!  And it's not just to get from me to John or from one toy to another - she's walking because she likes it!  She really likes it!  I really haven't seen her crawl much at all in the past 48 hours.  When she's not walking, she's knee-walking, which is definitely a shift in the right direction.  I am so proud - beyond proud! - and wondering what it means that this huge milestone occurred in the hospital.  My silly old bear needed an audience.  (And yes, she did pause mid-video to wave at the nurses at the desk.  Pageant queen.)

Sumner Station folks, please make Jane watch this one!  Jane, look what a walker we've created!  Thank you!

Hey!

I really am still here. Promise. But I'm buried under boxes and to-do lists and great expectations and itty bitty clothes and big toys and books and books and books.

BUT - Becca has officially taken some first steps. Wohoo!! She's definitely not "walking," per se, but now we know she's got it in her, and it's just a matter of time.

And no, I don't have video of it, silly. I'm too busy begging and pleading and cajoling and encouraging and stretching and clapping and reveling to take pictures. Besides, it hasn't happened very often.

But it's happened! She's going to be a walker! (I was seriously starting to wonder.) Perhaps by her birthday...??

Sensory Issues

I know you've heard me talk about sensory issues quite a bit on here, and you may be wonderingwhat in the world I mean. Well, today at physical therapy Super Jane gave me a really good explanation of where all of these "issues" arise. Let's see if I retained enough to explain it all!

Since Jane is a physical therapist, this explanation is from a gross motor perspective, but the general ideas apply throughout the therapeutic disciplines (for Becca, that's physical, occupational and feeding/speech). (Gross motor, by the way, just means big motor skills - walking, crawling, sitting, running, etc. - as opposed to fine motor skills - writing, picking up Cheerios, buttoning buttons. Generally, physical therapists work with gross motor and occupational therapists work with fine motor (among other things).

When we talk about sensory issues from a gross motor perspective, there are basically 3 systems/aspects to consider:

1. The tactile input you receive when body parts are touching a surface - for example, when Becca is standing holding on to something, she is getting feedback from the ground under her feet and the surface her hands are holding. This information travels through the nerves and to the brain, where it is processed. At the same time, ligaments in each joint are sending messages to the brain as well (I guess also through the nerves...not sure about that). So when you're standing all the joints you are using (like your ankles, hips, etc.) are noting tiny movements and stretching or contracting to make corrections, keeping you balanced.
2. The visual input you are receiving as you look around, helping you orient yourself in your environment. Are you close to the wall? Can you reach out and touch it? What is the ground like? Rocky? This information is taken in through the eyes (duh) and travels via the optic nerve to several different spots in the brain, where it is processed.
3. The vestibular system, which, according to Wikipedia, "contributes to our balance and our sense of spatial orientation, is the sensory system that provides the dominant input about movement and equilibrioception. Together with the cochlea, a part of the auditory system, it constitutes the labyrinth of the inner ear, situated in the vestibulum in the inner ear." Got that? Riiight...and that was the easy part of the article! Basically, the vestibular system is based in your inner ear and orients you in your environment and controls balance. That's why you are dizzy when you have inner ear infections, and vertigo is an inner ear issue. Interestingly, the reason the world seems to spin when you are tipsy is that alcohol messes with your vestibular system. Next time you are tempted to over do, remind yourself to be kind to your vestibular system. :) And, like the others, the vestibular system sends messages to your brain to be processed.

Okay, that's how things are supposed to work. Clear as mud?

Now, here's the deal with preemies. The vestibular system is one of the last systems to develop in a fetus, so preemies are born without a fully developed vestibular system. So that's off to begin with. Then this preemie with an underdeveloped sensory system is traumatically introduced to the outside world instead of spending, say, another 12 weeks tucked away snugly in mom's womb. The preemie's immature brain immediately has to start processing sensory input that neither the sensory system nor the brain are really ready for. Think about it - the lights, the touch, the touch, the smells, the cold air - it's a lot to take in, even for a regular newborn. Ever notice that no baby enters the world smiling? So the immature brain has to process everything, on top of all the work it's doing to, oh, keep the baby alive, regulating the heartbeat, respiration, temperature, etc. But then, to make matters worse, these preemies are subjected to all kinds of additional (and necessary) sensory input - intubation, IV's, central lines, umbilical catheters, heel sticks every couple of hours, injections, etc., along with the stimuli we would consider normal but are very abnormal for a fetus/baby this age - even the lights and sounds of the NICU (both of which are intense - think florescent lighting and rooms full of beeping machines and busy people) must be taken in by the underdeveloped sensory system and processed by the underdeveloped brain. See where I'm going with this? All of this taken together basically messes things up. Their systems form a little bit off, and the brain doesn't learn how to correctly process the messages it receives, and it's hard to undo that damage. It's a necessary evil, of course, and when docs and nurses are in the midst of saving and sustaining a life, it's kind of at the bottom of the list, but it sure can leave an older preemie with what we call...drum roll...sensory issues.

Becca's sensory issues affect her in a few ways. We're picking up weekly physical therapy again since she's having trouble progressing because her vestibular system is out of whack (hard to stand and walk without it!) and the tactile messages that she is receiving likely aren't being processed correctly. Same goes for occupational therapy (though we've been weekly with them for a while now.) Also because those stimuli aren't being processed correctly, Becca (as you know by now) can't tolerate certain textures on her hands or in her mouth (or anywhere else, really, but those are the most problematic areas since they keep her from eating), so in occupational therapy and feeding/speech, we work on desensitization, which ought to help her brain learn how to process things correctly. For example, today in feeding therapy we stripped her down, and she played in chocolate pudding. Many toddlers would dive right in and welcome the opportunity to make a huge mess, but for a kid with sensory issues, it's really a challenge. She did great, though! That is, she did great in a relative sense: she tolerated the pudding on her hands and even some on her face for a few minutes, and she even finger painted with it a little bit. No, she didn't actually eat any (I would be all over licking chocolate pudding off my fingers!), but she did better than she has in the past. It's a really, really slow process, so we celebrate even "little" victories like this one.

And that takes me to some good news: the sensory system (and the nervous system in general) is very "elastic," meaning that it can adapt and form new pathways. I know a couple of kids who are completely missing their cerebellum (the part of the brain that controls movement), and their brains have adapted. Crazy. Seriously, our bodies are amazing, particularly our brains. You might have heard about people who are impaired in one sense making up for it in another, and this is why people who are blind can still learn to walk, for example, because their vestibular system becomes more refined and makes up for the lost visual input that is typically needed for motor development. And that's the point of all of this therapy: to retrain her compromised sensory system.

The other bit of good news is that NICU's have caught on to the sensory problems that preemies experience and many have taken steps to attend to "developmental care;" that is, they try to develop protocols that are more gentle on a preemie's sensory system and brain. For example, in Vandy's NICU, they cluster the babies care so that every three hours they change their diaper, take their temperature, adjust their position, and give them any feeds or meds that are due. Obviously they attend to a baby in between, but they try to do all the routine things together so that they aren't constantly disturbing them. Young preemies have thick blanket-like coverings over their isolettes to keep the lights out. (You may remember them from Becca's NICU pictures.) Nurses try to keep the noise level down by limiting visitors and not talking to each other too loudly. They probably do a lot of other things, too, and even some new ones that they have come up with in the past 2 years, but those are the big ones I remember.

Okay, that's all I got. Please leave any questions you have in the comments, and I'll try to address them in another post. And please leave any corrections or clarifications you have, and I'll try to address them in the same another post. :) And because you deserve a reward for making it to the end of this technical post: a picture! Here's Becca trying to orient herself in the space underneath my parents' coffee table. She likes to crawl into small spaces - and there are a lot she fits into!

p.s. It's not too late to make a donation! Help the March of Dimes find new ways to prevent sensory issues in tiny kids like Becca by donating here: www.marchforbabies.org/BeccaHill. To date, we are $645 from meeting our goal. Thanks!

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.

We Went to the Doctor and...

...he graduated Becca from helmet therapy! No more helmet! I'll post final before and after pics soon. He was really happy with how her sweet little (big) head turned out! Perhaps I should have asked him to sign it...

On a related note, Becca also graduated from physical therapy today! Hooray! (But I really liked Jane. Couldn't we discharge from something else instead?) If Becca's not getting close to walking on her own in a month, we may be back for a few sessions, but Jane expects her to progress normally now (even though she's behind - you still have to have the same amount of time in each stage).

These developments bring our specialist tally down to 5 (plus the regular pediatrician) and our therapy disciplines down to 2 (plus Early Intervention). Fabulous!

Before and after shots:

August 24, 2008

February 4, 2009

Her luscious locks make it hard to see her beautifully round head, but I think you can see that it's much improved!

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!