Becca's Taking Over the Blog!

So, after nine years and MANY noteworthy events, Itty Bitty Hill is back! Narrated by none other than its namesake. Mom (Nancy) will be checking what I post (since I’m fourteen and this is my first adventure into the craziness that is social media). Probably actually posting it, too.

Now. Here’s some ACTUAL updates:

• I am fourteen, a rising eighth grader, and go to middle school in Nashville.
• James is ten in less than a month. Yay, double digits! He is a rising fourth grader (yeet, he’s old), and goes to one of the feeder elementaries for my school.
• Mom and Dad (John- did you ever notice that James and Dad’s initials are both J. H.?) are both forty-two.
• They got divorced. Don’t worry, they share custody equally, are still friends and communicate, love us as much as they ever did (three thousand million thousand six hundred thirty two, at least :)), etc.
• Buster, our very sweet, very odd, Jack Russell-shelter dog died at twelve years old, of cancer. Technically, we put him to sleep. I miss him dearly. :(
• Sasha’s alive and kicking (slowly) though! She's EIGHTEEN. 
• Mom moved to west Nashville—hence the school change.
• Dad moved to Crieve Hall (south Nashville—our parents live thirty minutes apart now… Yay?)
• We got a new dog at Mom’s house: Luna Belle! Named partially after Luna Lovegood, of Harry Potter fame (we’re fans), and after my suggestion, Bella. I’ll add pics, if I can figure out how…
• We got a new dog at Dad’s, Rico. He’s tiny, adorable, and looks like a sausage (that’s what Mom calls him whenever we mention him). It’s SO WEIRD having a dog that can’t get food and isn’t nearly as treat-motivated as Buster, Sasha, and Luna!
• I still ride at Saddle Up. Currently—at least, when school got out—I was riding Oscar, who is a persnickety older horse (22 years old!) who, oddly enough, would totally be a fairy at a Halloween party. *shrug*
• Um… I’m still hard-of-hearing. (Use correct terminology, people! Hard-of-hearing, not deaf or hearing-impaired!)
• I got glasses! I think they make me look like the school-loving, book-worm I am. Huh, I guess that’s a stereotype. Oops.
• I re-discovered a few diagnoses (?) and got a new one. Oh, and we (kind of) started physical therapy.
• That reminds me—I officially started on speech therapy at school. Apparently, I didn't qualify until I was older because I know and understand so many words. Huh.
• I went to my first IEP meeting! It was… sort of exciting, and also a bit boring. I had never been to one (you have be thirteen or fourteen, I can’t remember). In fact, I hadn’t really looked at mine. I knew what was on there—duh, since I USE IT! But there was a lot I didn’t know about. Things getting written down for me (HOH)? A clock and reminders to focus on work (ADHD)? Not really happening/outdated. Well, now I know!
• Uh… that’s about it, I think. I wonder how long this is… long, I bet ;).

Blog Hiatus

Well, since it's happened by default, I might as well make it official and spare myself some guilt over it: I'm putting the blog on hiatus.  Life is too crazy and wonderful for me to find time to blog right now.  When I have time or something big to say, I'll try to pop over here, but I'm not going to stress over not posting - which obviously isn't causing me to actually post, anyway!

Here's a quick update so you can know that all is well in our world:

John and I are still working at Christ UMC and still loving it.  It's a little crazy to work with your spouse and live with your coworker, but we are in a good place with it all.  Not a whole lot else exciting about us.  Oh, we moved.  That's pretty huge.  We live close to work now - it's a SEVEN MINUTE commute.  In rush hour, it can stretch to 15 minutes.  Holy crap.  It's amazing how much stress being close to work has relieved - more family dinners together, more time to get our act together and kids off to school in the morning, 30 minutes more sleep on Sunday morning (that's probably more huge than it sounds to you non-pastor types!), fewer 12 hour workdays because there's now time to come home between meetings - things that were impossible in a dual-career household with 45-60 minute commute times.  We're kind of house poor, but it's totally worth it.

Becca started kindergarten and is doing great.  We could not be happier with our new school system - we moved from Williamson County Schools to a system-within-a-system, Franklin Special School District.  It's amazing.  We pay a bit more in taxes, but it's so worth it.  Williamson County Schools are considered among the best in the state, and FSSD has the same level of academics, but with more personalized attention and more diversity (economic, racial, developmental, etc).  Becca's got 16 kids in her kindergarten class with one teacher (Mrs. Mathias - or "Miss Maffias," as Becca calls her), one paraprofessional (TA - Ms. Misty), PLUS Becca's personal aide (Ms. Janelle), who is with the class half the day.  That's a heckuva adult-child ratio!  There are kids of all colors and accents in her class, and we love having her little world reflect our world a bit more.  We love the IEP team and are especially lucky that they have a hearing specialist who works with Becca once a week to help her learn how to live with her disability - teaching her tricks like turning her good ear towards a speaker when she is having trouble, etc.  There have been a few bumps with the transition here and there, but Becca thrives in a school environment and (gasp!) actually love the rules and routines there.  We have our parent-teacher conference next week, so I'm interested to see what Mrs. Mathias says about her work...her handwriting looks particularly awful to me, and she seems to have trouble processing how to write each letter (not just trouble in actually forming the shapes), but you knew I'd find something to worry about, right?

Baby James is a big boy!  He turned 1 last month, and he is every bit of it.  I know it's probably cliche or whatever, but it is so much fun to have a typically-developing kid!  Not that Becca isn't fun, of course, but it is just pure joy to see a kid just pick up on skills on his own.  When preemie mamas get together, we ask what the other family is "working on" - as in, what skills are you focusing on in therapy?  What special techniques and equipment are you using?  What kind of progress are you making?  With James (as with most kids), we don't "work" on things.  He just learns to do them.  I swear, every time I turn around he's picked up a new skill.  The most recent is his ability to transform into a monkey at any given time. He doesn't play AT his train table anymore - he plays ON it.  Tonight, he used the tub of play food to try to climb up on the top of their play kitchen.  Ridiculous.  He's not walking yet, but he can walk using a push toy or a laundry basket.  Speaking of laundry baskets, his favorite thing to do in all the world is to take a full basket of laundry, empty it by throwing each individual piece behind him, and climb into the empty basket and bounce.  Weirdo.  Man, I love that squishy kid.  He also started daycare, which is going well.  Of course, he's been there three weeks and already brought home 2 virus that have wound their way through the family, but I guess that's to be expected.  Sigh.  And THAT is why Becca couldn't go to daycare until she was two - makes me glad we rearranged our lives to make that possible!

So there you have it.  I say I'm going to quit blogging (or kind of quit blogging), and then I churn out a full post.  Whatev.  At least when I come back, I'll know where I left off.  :)  Until then...love from the Hills!

Hearing Aids!

We've got them!  We picked them up and learned all about them on Thursday.  Becca was super excited about them.  They are pink behind the ear with translucent pink earmolds with sparkles.  Very pretty.  We are getting the hang of getting them in so they will stay.  She's done pretty well adjusting to all the noise in the world.  On our way from the office to the car, she said, "Mommy, why is da elwabator [elevator] making noise?"  Because they always have, baby.  Welcome to the world.

There have been a few times that she has been overwhelmed.  At a birthday party on Saturday, she pulled me out of the den and said, "Mommy, I just want to sit wif you in da different room all by ourselves."  So we did for a few minutes, then went back to the action.  No biggie.  The volume adjustment and on/off switches have been deactivated so that she doesn't play with them.  When she gets older, she will have access to them to adjust as needed.

John and I are thrilled not to have to yell and repeat ourselves allthetime.  So much less stressful.  There's something about an uncooperative 4-year-old being much more bearable when you don't have to start out yelling.  This doesn't mean, of course, that she listens all the time.  Several times we've caught her in the regular, "What did you say?" loop - she asks, we repeat; she asks, we repeat; she asks, we repeat.  Finally I say to her, "Becca, I think you can hear me now.  Are you listening?"  With the obnoxious honesty of a 4-year-old, she'll say, "No, I'm not wistening."  So now we have a new rule: no asking questions unless you are going to listen to the answer.

John filmed her reaction the first time they put the hearing aids on and turned them on.  The audiologist put them both in her ears before turning them on.  Once they are turned on, it takes about a minute for them to be ready to go - they make a little chime sound (the pixie dust sound, I'm told ;) ) and then go live.  I think you'll be able to tell in the video when they start working for her.  We are so lucky to have the technology and access to care to help her hear!  Enjoy the video.  Life is good.

Make a video - it's fun, easy and free!
www.onetruemedia.com

March for Babies 2013 Shirts

The t-shirts are here!  The t-shirts are here!  Well, not really *here* but here as in, at this link: www.teespring.com/ittybittybecca. 

In an effort to simplify my life just a touch, I worked through TeeSpring to design the shirts.  Once 30 shirts have been ordered ("reserved") on the website, they will be produced and mailed directly to you fine folks.  They are $15 each, with all proceeds going to support our March for Babies team.  And, really, you NEED a Super Becca shirt.  I promise.  :) If you are local and want to save on shipping, you can pick them up from the church office once they come in.  If you want a shirt, you must order it through the link above by 8 pm CDT on Thursday.  Because we are ordering through this site, I won't be able to sneak in late orders.  

Have at it!  Support our team, spread the message of the March of Dimes, and be inspired by Super Becca wherever you go!

March for Babies 2013

I'm going to be really honest with you here (and hope my March of Dimes peeps don't hate me).  Up until a few weeks ago, I was pretty close to blowing off this year's March for Babies.  I mean, Becca is nearly 5, we've got a nice big healthy baby now, too, we're busy, I'm exhausted, prematurity is pretty much behind us now, so why don't we move on and let some other folks pick up the slack?  Sure, I'll send a few e-mails out and our families will cough up some change, but maybe we can just leave it at that this year.

Yeah, you caught that, right?  "Prematurity is pretty much behind us?"

If only.

It's very typical for March of Dimes families to move on about 4-5 years after their brush with prematurity.  For a lot of families, prematurity is pretty much behind them by then.  Most preemies have graduated from therapy and are proudly wearing their 4T and 5T clothes, and moms and dads are surprising people by saying, "She was born 8 weeks early!  You'd never know, would you?"  And then there are some of us preemie families who are still receiving diagnoses. Like the large-ish one we were recently dealt.

Honestly (can I write any other way?), we had started to think of Becca as a "normal" child.*  For the past couple of years, we felt like we were on the border of the special needs classification.  Sure, she's got a feeding tube, but that's coming out soon, right?  Sure, she's still in therapy, but it's a lot less frequent.  Sure, she's in the special ed program, but at one point, her teacher suggested that she might even qualify to be in the program as a peer.  Surely we are just a year or so out from leaving those "needs" behind us and just having a "special" child!

When shit first hit the fan in my pregnancy with Becca and in her first weeks and months of life, we knew we were likely staring down the barrel of a lifetime of disabilities.  And we were on board.  Of course we would give her a lifetime of care!  Of course we would do anything she needed!  Of course we would completely rearrange our lives to do right by her!  Never for a moment did we stop pulling for her and her survival. And I don't regret for a second the choices we made to give a chance at life.  Not a second.

But really, now, five years later, I can say that I didn't have a clue what I was talking about then.  I had no idea what it was like to live day in and day out as a family with a child with special needs.  I had no idea how hard even the simplest things would be, not just for my child, but for our entire family.  How things like job opportunities, finances, family gatherings, housing, friendships, and the health of SuperDad and me, not to mention our marriage, would be affected by having a child with special needs.  It's not that I hadn't been around people with special needs before.  I had had many opportunities to glimpse into the life of families of kids with special needs.  It's just that it looks so different from the outside looking in.

I'm not trying to be all whiney and woe-is-me, and I'll spare you all the gloomy details of the day to day struggles of it all.  (Especially because even though we're back in a difficult spot at the moment, there is far more joy than gloom in our day to day.)  I'm just trying to say that unless you have been through a similar experience - and continue to live in it - you don't know what it's like.  And I know a lot of families whose kids are way more complicated than Becca.  And I don't have a clue what it is like for them.  But I guess I'm just asking you to trust me: having a child with special needs sucks. It doesn't suck because my kid sucks - she's friggin' awesome.  It sucks because I watch her have to work so so so so so hard for every bit of progress she makes.  I have to watch her hurt and try and fail and have other kids not understand her and get poked and prodded and told that this part and that part of her are broken. I have to hear her say, "Oh no!  Not my hospital aGAIN!"   I have to watch her live with the legacy of her early birth.  Every day. She can't shake it.  Even though I had convinced myself that she would, any day now.  She can't.  She won't.

With her latest diagnosis, Becca has landed squarely in the "special needs" category for the rest of her life.  She will always be hearing impaired.  That means she will always be "disabled."  Do I think it will hold her back?  Absolutely not.  "Special needs" and "disabled" are simply labels.  But it does mean that everything will, once again, be harder for her.  Forever.

So yeah, a few weeks ago, I thought we might actually slowly graduate from being a March of Dimes family. Not anymore.  While we are still trying to find the cause of Becca's progressive hearing loss, the overwhelming likelihood is that whatever reason we find, it will be traced back to her premature birth.  Whether it's due to structural abnormalities, ototoxic medicines or her underlying syndrome, the cause of those issues, at their root, is most likely that she was malnourished in the womb and then born neurologically immature.  My narrative for her story has gone from, "She had a really rough start, but she's doing amazingly well.  We expect that eventually you'll never know that she was born so early, except she'll probably always be small," to "She had a really rough start, but she's doing amazingly well.  She'll probably eventually catch up developmentally, but she's always going to have some issues, though she's smart as a whip."  (Note that I feel like I have to add the bit about her intelligence - because as soon as you say that someone has special needs, people always make assumptions about what exactly those needs are.)

In the end, that's not a big deal.  Not at all.  We have still been very, very lucky with her.  She is still amazing.  But I'm reminded that we can't leave it all behind.  So when I was thinking about themes for this year's walk, the one that kept rising to the top was, to put it delicately: "We march because...shit keeps happening."  Seriously.  But that's not something I want to put on a t-shirt and remember the year by, so I kept working on it.  And this year, Becca was able to help me with it.  (Smart as a whip, remember?)  She is way into superheroes these days and is always rescuing this or that creature.  And she continues to be the best big sister in the world and so in love with Baby James, not to mention a passionate fan of the March of Dimes (seriously - knows the logo and everything).  So it's only natural (when I put my bitterness aside ;) ) that this year's theme should be:

We march because...every baby needs a SUPERHERO!

And I've got just the superhero for you!

Becca is ready to be a superhero for babies, and she wants YOU to join her!  Click HERE to join our team and/or donate to help Becca save babies by helping them be born healthy.  Being born early and before your body, especially your brain and other organs, are ready, affects every facet of development - so the March of Dimes' research on fetal development affects just about literally every other health and development issue out there.  No kidding.  Every bodily system is touched by prematurity, so every system is touched by their research.  So supporting the March of Dimes really is like being a superhero for kids with all kinds of different issues.  It's the broad swoop of medical research charities.  And since everyone starts out as a baby, everyone can be a March of Dimes family, too.  Together, we can help all our special kids have a chance to dance and sing in their superhero capes - because wouldn't you give anything to make this possible?:

Love that kid.  And I know you do, too.  Please join us.


*Yes, in many ways, Becca is a normal child.  For more on what I mean by this comment, revisit my post On NOT Being Normal.  And when I can find it, I'll link to it.  :)

Half Birthday!

Baby James is a whole half now!  At least, that's what Becca calls it.  Last week (or so - second child and all), he passed the 6-month mark, and he continues to be, well, perfect.  Or practically perfect in every way. Or practically perfect in every way except sleeping, particularly at night.  But good enough.

He's bumped around a little bit percentile-wise, but basically he's still a tad on the small side.  (Note: I said "small side" - not "itty bitty side." You know, around 25th percentile-ish.)  With a big head.  But even that was more normal at his last appointment.  He's still The Happiest Baby in the World, as long as somebody is looking at him and smiling.  (Super Dad and I only sometimes count as somebody.  But if it's someone other than us, he's smiling.  Not that he doesn't smile at us or like us - we just aren't as fascinating to him.)

He's working (HARD!)  on a tooth or two.  He's getting good at sitting up if you sit him up.  He's not showing any interest in crawling, and frankly, that's fine by me.  He's still good at spitting up.  His ears are tricky -- already had 2 infections -- but he hears great.  The ear infections led to antibiotics that have led to a raw little tushie, but he doesn't seem to mind that much, though it looks pretty awful.  His tushie is still covered by cloth diapers, and we continue to love them - and not having to spend a quarter every time he poops.

We're still breastfeeding like champs, even though I have now had mastitis FOUR times.  I've recently started taking lecithin supplements to help get that under control, so maybe we won't hit number 5.  Please God, let's not hit number 5.  He's started solid foods and loves them most of the time.  Since he started delicious things like sweet potatoes and (delicious according to him - EW) peas, he doesn't want to have much to do with his rice cereal.  I think part of it is that he doesn't like cold food, so I'm going to try warming it and see what happens.  But does he really need the cereal if he eats other food?  You tell me.

What I do know is that it is SOMUCHFUN to feed a baby who likes to eat.  I pick up the spoon, put food on it, and he opens his mouth.  Just like that!  Like he WANTS me to put the food in his mouth!  It's amazing - and makes me realize that Becca had feeding issues from the VERY beginning of solid foods.  I wish I had caught that and started feeding therapy earlier.  That might have saved a LOT of stress on our part, a lot of pressure on her part and possibly even the feeding tube.  But kicking ourselves over it does nothing.  But I'm certainly enjoying a kid who enjoys food.

James and Becca continue to be in love with each other.  Becca even tells me that she's going to marry Baby James when she grows up.  Why wouldn't she?  Daddy and I are married to each other - so of course we marry people in our family.  Too funny.  There is nothing that makes me happier than seeing them laughing and smiling at each other.  I pray that it continues when he starts crawling and stealing her Squinkies.  (Which, by the way, she won't take out of her room anymore because she doesn't want him to put them in his mouth and "get dead" from choking on them.  She's a good baby-proofer.)

Hopefully I'll remember to add some pictures to this post before it publishes - but if I don't, feel free to hound me.  Trust me, you want to see this handsome little man.  :)

p.s. I'm getting a LOT of spam comments, so I'm disabling anonymous comments.  Shouldn't be a big deal - just sign in with any Goggle log in to comment.  You don't have to sign up for Blogger specifically or anything.

Audiogram

Here's the graph of her hearing test results yesterday. Anything higher than 20 dB is considered a hearing loss. (These numbers are the quietest sound she can hear at each frequency.)