Humility...

Gavin and I have quite a history together.  

Although I was completely blindsided by his issues following his birth - and felt ill-equipped to handle the unknown ahead of me - the two of us quickly fell into a rhythm and created a very strong bond.  I would have slept in the NICU for those 30 days if they had let me.

Once he came home, it wasn't long before we were back in a hospital.  I was the gatekeeper to Gavin for close to three months as he recovered from RSV and Botulism.  This time I DID sleep there - on a cot next to his crib - only going home once.  I learned all I could learn from the doctors, the nurses, the therapists - and googled all through the night.

When we were finally settled at home and could "begin our lives" - I did everything times a hundred.  He needs patching for a half hour a day to strengthen his weak eye?  That, to me, meant patching for one hour every day without fail - and "made up" vision exercises of flash cards or books or puppet shows...anything to get Gavin to look.  Preferably, at me.  

And when he did look into my eyes, it was my greatest reward.  It still is.

Having the therapists come to the house was awesome.  I never missed a thing.  And I would purposely buy toys - and rotate them often - so he would be getting lots of therapy all day without even knowing it.

Over the years, Gavin continued to make progress.  And, if I'm being 100% honest, with each "gold star" Gavin received...I felt I received one, too.

But the difference was - Gavin's stars represented progress.  My stars represented bits of redemption.  I will probably always feel that I am responsible for Gavin's issues.

Of all the therapy that Gavin has received since he was an infant - physical, occupational, teacher services and hearing services... speech therapy has always been the most difficult.  

Not for Gavin... for me.

I could list an entire page with all of the communication methods we've tried with Gavin.  Devices and switches and systems.  None of them were very successful.  I even attended a two day conference filled with teachers who wondered what I was doing there - and I came home so depressed knowing that communication style would not work for Gavin.  At least not at that time.  I went around the house and took photos of everything - every toy, objects, rooms, family members - and for a long time Gavin did well with that.  We would hold up two cards and he would choose between them.  From what toy do you want to play with...to which one is Daddy's car...to yes and no.

We moved onto the iPad when things stalled a little in the picture department.  Plus, I thought it might be time to use a communication program.  We tried a bunch of different ones - and found success with the easy to use "So Much 2 Say" app.  Gavin continued to make choices on the iPad and it seemed things were moving in the right direction.

When he started school, I knew that I would be losing my "control" of a lot of things.  Soon I would be hearing about his day - and not seeing things first hand.  I knew that they weren't using the iPad that much in school for communication and wondered why.  Then, silently at home, I started to get annoyed that the iPad wasn't being used.  Then I really started to worry when I heard that they had gone back to pictures.  But his speech therapist, Miss Whitney, maybe sensing my tension, called a meeting today.  She assembled Gavin's teacher, his occupational therapist, an assistive technology expert from the school district and herself.  I dreaded this meeting.  If I'm again being 100% honest, I was defensive for two days leading up to it.  I walked in ready to be annoyed and adamant.  I walked in with a "nobody could possibly know Gavin or know what he needs like I do" mentality.

But then something happened.

I sat there and quickly realized...these four women are sitting here with me during their lunch break to discuss my son.  These women have prepared remarks and have watched and studied Gavin enough to come up with suggestions to help him.  As I listened to Whitney explain why she went back to pictures and how it may lead to using the iPad down the road but that it's just not functional right now... a light bulb went off.

I heard my Dad's voice:  "Kate, never think you are so smart that you can't learn from someone else."

In that moment, I realized something.  I was in control for 4 1/2 years.  I knew Gavin's every move... every expression.  I could anticipate every want... every need.  I was in control of his therapy and was able to offer a lot to the sessions.  But now - he's not in my home anymore.  It doesn't matter what worked for him last year.  It doesn't matter what worked for him at home... with me.  What matters is what works for THEM... at SCHOOL.  I needed to back the hell off.

Whew.

When I took a breath, I realized I could then listen instead of simply hear what they had to say.  And when I listened - I was blown away.  "Start small," I heard.  "Put some of Gavin's cause and effect toys in a clear bin and put a picture on top.  It may take a LOT of repetition, but the goal is for him to touch the picture in order to tell you that he wants a toy in that bin."  "Put a picture of his milk on the refrigerator door and have him touch it to tell you he wants a drink."  When I listened, I realized that these women were on top of things.  They had a singular goal - to push Gavin so when he hits Kindergarten, he hits the ground running.  (That may be literal!)

Today I learned some important lessons that I think will serve me well as Gavin continues his education over the years.

One:  Worth repeating.  Never think you are so smart that you can't learn from someone else.

Two:  I'll never lose the 4 1/2 years when I was in control of everything surrounding Gavin.  It's okay to pat myself on the back for how far he came.  

Three:  After I'm done patting myself on the back, thank the women who are standing in my place. Teachers and therapists don't just train to help children...our children become "their children."  At least I have found this to be true for us.  When I picture people taking the time to even give Gavin a second thought after they "clock out" - it brings tears to my eyes.

Four:  The classroom is a different environment than home.  You have to let the professionals tell you what works for Gavin when he is there... regardless of what has worked for you at home.  There are different distractions and pressures... and we all know that kids are totally different at home than they are, well, everywhere else.

And finally:  A dose of humility is good for the soul.  And tonight, I feel humble... and ready to rock this communication plan!!

In other news from our house... Brian was diagnosed last night with an ear infection and Roseola!  I've never experienced Roseola (with my kids) so I learned something new.  It starts with a day or two of high fevers... and then the fevers go away and the kid just feels awful.  Then, days after the last fever, a tell tale "Roseola rash" spreads all over the body.  That's just how it happened with Brian.  Two days of high fevers.  Up every night crying and unable to sleep but wouldn't tell me that anything hurt.  Then yesterday the rash popped up and he started complaining about his ear.  So off to the doctor we went.  He's been home from school all week with Mommy and we've done very little sleeping and a whole lot of snuggling.

Thank you for loving our little family!

ps... don't forget about our new "Chasing Rainbows Facebook Page."  You'll get instant alerts to new blog posts...info about giveaways...pictures and posts...and conversations that start following blog posts!

Fame...

This afternoon, while waiting in my minivan in the preschool pick up line, I read an email that changed my life.  Little ol' me has been nominated by Parents Magazine for their annual "Parents Blog Awards."  I know... I'm just as shocked as all of you.  I have always dreamed of being famous.  Looks like this contest is my golden ticket.

Immediately I picked up the phone to call Ed and tell him the news.

"Looks like I'm headed for fame.  I wanted to let you know I won't be cooking tonight.  We should probably look into getting a chef now.  You know, because I'm famous and all."

"Uh, Kate... you never cook anyway.   By the way - do you want pizza or Chinese tonight?"

Oh.  Right.

I came home and thought I should probably get to work.  I sat down at my computer to wait for what I knew would be an avalanche of congratulatory emails and phone calls from companies looking to have me do commercials or radio spots for them.  Because I'm famous and all now, you know.  Sure enough, I heard a voice...

"Mommy!  Come wipe my bum bum??  I went poopy!"

Oh. Fame is not at all what I thought it would be.

I was hoping to rush through dinner and skip bedtime stories just this one night - because, well, I should probably hire a story reader now that I'm famous and I better get on that.  I told Brian he could choose between a big cookie for dessert or a book at bedtime.  He chose dessert... and then I heard from across the kitchen table...

"Mama, I'm going to tell YOU a story.  Once upon a time there was a little boy who loved cookies and stickers and his Mommy.  The end."

And it all came crashing down.

How could I forget?  I'm already famous!  At least in this house and really, isn't that all that counts?  (yeah, I don't buy that either... but it sounds good.)

But I do feel famous just being the Mom to Gavin and Brian.

And I definitely feel lucky that every day readers from all over the world come to cheer us on.

Just this morning I was able to spend an hour in Gavin's classroom to observe his PT, OT and Speech.  He blew me away using his walker to get out into the hallway and then walk up and down the hall while cute Kindergarten girls waved and smiled at him the whole way.

And then he showed off getting out of a chair and walking over to the classroom sink with Miss Wendy.  If you are new here... this is something many people thought we'd never see.

Then I watched as he was pushed by Miss Whitney, his speech and feeding therapist.  He hates feeding therapy.  It's such hard work.  But he loves her. 

Gavin loves everyone.

Finally, it was his Occupational Therapist, Miss Ericka's turn.  She's pushing him to feed himself.  It's torture for him... but he does it all with a smile.

And when he's through?  He's rewarded with a blanket swing.

This time last year, Brian had, at best, four words.  And now, he's talking all day - every day.  I seriously get out of breath just listening to his stream of consciousness chatter.  I must burn about 1,000 calories a day just trying to keep up and make sure I don't say random "uh huh" or "sure" to the wrong things.  It's exhausting.  But amazing.

Today Brian said goodbye to one of his favorite people at school - his teacher, Miss Morgan.  She took a new job and today was her very last day.  Brian dictated a sweet note to me last night on the card we made for her.  He thought hard about the things he loved the most about Miss Morgan.  "I love when you hold my hand in the hallway at school" was one of my favorites.  I'm grateful for all Morgan did to help Brian learn and develop this year.  

She will definitely be missed!!

The category I'm nominated in is called "The Blog Most Likely To Have You Reaching For The Tissues."  If you're new here - having stopped by to see why I was nominated - I can assure you, it's not because of my writing.  And your tissues won't be needed because of any tragedies we've endured (and believe me, there have been quite a few).  The tissues are needed for the tears of joy.  Joy when my infant son came home after a month in the NICU.  Joy when he was welcomed home again after three months in the hospital as a baby.  Joy when his "permanent hearing loss" was miraculously restored.  Joy when we had an uncomplicated, perfect pregnancy and delivery of his little brother.  Joy when, after many miscarriages, we got pregnant with their sister, Darcy Claire.  Joy that we now have a personal angel in her.  Joy that our little boy who had such low tone he wasn't expected to even sit up... is now walking at five years old.  I really could go on and on.  The journey has been rocky, but the unexpected miracles along the way have made me feel like I've achieved all the fame and fortune I'll ever need.

So, about this contest...

Here's the deal - I am totally the underdog.  I need you, your Mom and Dad, your friends and enemies, your kids and neighbors and their Moms and Dads and... everyone pretty much... to vote for me.  You can vote once a day until February 24th by clicking the Parents button on the right side of this blog.  Or, you can click HERE to get there.  Or click the button below. You may have to "like" their Facebook page which is not a bad thing considering all of us ARE parents or HAVE parents, right? From there you just click on my blog!  I am up against four INCREDIBLE blogs - I am a fan of each of them.  Just being in this lineup is really such an ego boost, I have to say.  If I win, I would be featured in Parents Magazine which is beyond my comprehension.  

Thank you in advance for your votes!!

Where Do I Even START?!?...

So much good news to share tonight - I don't even know where to start!!

How about with Miss Sara.  Today marked one whole year that she's been with our family.  Not to sound corny, but it really feels like she's been a part of our family from the start.  The year - which was FILLED with highs and lows and miracles and milestones - really flew by.  We love Sara, as you must know by now.  And we are so grateful she has been here (and stayed here!!) through the good and the bad!  Gavin and Brian LOVE Miss Sara.  When we talk about our family, Brian adds her like she's an official Leong!  And Gavin - I know for a fact that much of his progress this year is due to her.  She is so good with him - has been from the very first day.  We really won the lottery last year - and we know it.

To celebrate her one year anniversary - I bought her a couple presents and the boys made cards for her.

And then Sara presented US with an totally unexpected, completely outrageous and absolutely unnecessary gift.  "Twelve Months of Dates"

A box filled with gift cards for different restaurants and the movies - and free babysitting for every outing.  Even an overnighter!!

We were completely overwhelmed.

She brought Christmas presents for the boys as well - and even some from her wonderful parents!  Her parents gave the boys the most clever Crayola themed gift!  Four passes to the factory, spending money for the store (seriously - they are overwhelmingly generous), crayons and crayola magnets... it was such a fun gift!  

Granny was here, too, and opened our little presents.  She'll be spending Christmas with my sister and her family so we had her open her gift early.

  The last few days have been filled with all kinds of celebrations.  (Be sure to keep reading for the BIGGEST celebration of all!)

Yesterday, Brian had Pajama day at school.  

He wore his Christmas pj's and really got a kick out of seeing his teacher, Miss Laura, in her robe and slippers!  The whole class watched The Muppet Movie in the school auditorium and Brian said it was so much fun!  He loved giving his teachers and Miss Maggie their Christmas gifts, too.  

On the way out of school, you wouldn't believe who we saw coming in!  SANTA!!!  Brian froze at first - and then walked right up to say hi.  And then he turned around and said "eeeee" for a picture.  He is very well trained.  

Today was Gavin's holiday party and everyone was invited!  Daddy left work to make it... 

Granny came over to go with us... 

and Sara stayed late so she could come along, too!

Brian couldn't wait to play in Gavin's classroom - especially when he heard there would be snacks.  And I could tell that Gavin was SO excited that all of us were there.  He was quite the show off!!  

It was great to see Gavin's therapists and teacher and introduce them to Ed and my Mom.  I really love Gavin's team.  Miss Erika is his Occupational Therapist.  I'm sure you can tell by the photo that they have a mutual affection for each other.

Miss Whitney is his speech therapist!  She has so much energy and I'm so pleased with what she is getting out of Gavin in school!  She has the hard task of working on feeding - the biggest challenge of all.  

Whitney will take over some of Miss Maggie's case load (Maggie is Gavin's old speech therapist and Brian's current speech therapist - follow that?) when she goes on maternity leave.  There is a possibility that Whitney will get Brian for speech!  How cool would that be?

And of course there is Miss Megan - Gavin's wonderful teacher.  She is such a sweet and loving person - it's so obvious that she has found her calling in teaching.  The classroom is such a happy place and Gavin is doing so well.  We really are so grateful to have been assigned to Megan.  Her supervisor happened to pop in today - not knowing that there was a holiday party.  Boy, was I happy to give her an earful about how we felt about Gavin's classroom and his amazing teacher.  

Gavin has Sara as his personal classroom aide, but there are also two other aides in the room - Jen and Tracy.  (Dang it - I should have taken Gavin's picture with them too!)  They are so sweet with all the kids and went out of their way today with Brian, too!  There were play stations set up, including a Gingerbread Man station.  Jen made the Gingerbread Men and helped Brian decorate them with icing and marshmallows and gum drops.  And Tracy played in the pretend snow with Brian for quite some time.  Honestly, I couldn't ask for a nicer classroom for our sweet son.

The only person missing from the party was Miss Wendy, Gavin's physical therapist.  But she is 100% forgiven after I was given the best Christmas present ever this afternoon.  During her session with Gavin, she worked on his walking.  Gavin is obsessed with water - especially the sink in the classroom - so she used that as a motivator.  Sara said that he took a few steps on his own - holding onto nothing or no one - so she ran to get her phone to take a video.  And then...

This happened.

And then it happened over... and over... and over.

Unbelievable, right?

Great news like ALL of the above is usually balanced out with bad news in the Leong house.  It's what keeps us humble.  We ended today with an accident.  We were in the house all of five minutes - unpacking from Gavin's class party - when all of a sudden he was crying and clearly hurt.  I quickly figured out he had hurt his hand - and then figured out that his finger was swollen and floppy and red.  We think he pulled himself up to stand using the back of the kitchen chair which is all spindles.  When he went to get down to crawl away, his finger must have gotten caught in between the spindles and twisted.

So... on her one year anniversary, Sara looked at me and said "I can stay."  I packed Gavin up - left Sara and Brian and Ed, who was going to a work party - and headed to the emergency room.  As you can see, Gavin was no worse for wear...

We were fast tracked in and brought right to X-Ray and were home in time for dinner.  Turns out it's likely just a sprain and it didn't even need to be taped or splinted.  Thank God.  But just to keep me really humble, Brian broke out in a random case of hives at bedtime.

It's never dull around here!  Which is why I'm even MORE grateful (and sometimes surprised!) that Sara has stuck around this long!!

Thank you, as always, for loving our family like you do.  Gavin, especially.  With the amount of positive energy, prayers and encouragement you send his way - you can all take some credit for how well he's doing!

Giving...

If there's one quality I want to foster in Gavin and Brian, it's generosity.  I want them to be generous with their time, their love, their spirit and their good fortune.  Growing up, my parents encouraged giving to those less fortunate than us...and my Dad and I loved to do volunteer projects together.

Since the day Gavin was born, I feel like we've been on a constant receiving end of generosity.  When he was hospitalized, people brought us meals.  When I lost babies, people brought us meals.  (People have brought us a LOT of meals to the point that I started to think of things I could make up JUST to get these amazing meals)  Neighbors and friends have sent us hand me down clothes.  Other friends and neighbors have given us toys.  Blog readers have sent care packages and toys.  One especially generous blog reader, a retired school teacher who we lovingly refer to as Grandma Barb, supplied the boys with what seems like a lifetime worth of books!!  We have been so blessed by so many people.

So, it has felt really great over this past year or so to give and give and give.  But, more importantly, it has felt great to know that two little boys are watching.  Whether it's something small - like handing a dollar to Brian to put in a serviceman's can on Veteran's Day... or handing five bucks out the window to a Penn State student collecting money for their Childhood Cancer campaign - or something big like giving baby gear and clothes and toys to Gavin and Brian's speech therapist or packing up boxes for hurricane victims - they were watching.  And Brian always has tons of questions.  My answers always include a story about Pop who was truly the most generous person I've ever known.  He taught me that it doesn't matter how little you have - you can still manage to give something big and make a difference in someone's life.

Last week, I purchased a castle climber and slide with the intention of giving it to Gavin's classroom.  I bought it from a local Mom - she practically gave it away for $20.00! - and she was so happy to know it was going to help Gavin and his friends.  I thought it would be a great indoor activity and therapy tool during the cold winter months when they can't go outside.

It was at our house all weekend and I cleaned it up well so we could deliver it today.  Brian had a LOT of fun playing on it this weekend so I was a little bit fearful that he would have a tough time letting it go.  Okay, a lot a bit fearful.

But I was wrong.  I loaded it in the back of the van and Brian and I drove to Gavin's school to pick him up.  The whole way there he talked about how happy Gavin and his friends were going to be when they saw it.  I was so proud of him.  We carried it in and he demonstrated how to climb and slide and that was that!!

While we were there, I had a chance to chat with two of Gavin's therapists.  Whitney, on the left, is Gavin's Speech Therapist - and Erika is his Occupational Therapist.  They both are so great with Gavin and you can tell that he really adores them.  

Whitney told me that they were working hard on lip closure today.  Just like Maggie did, she adds crushed crackers or rice krispies on top of his puree and uses a flat spoon to encourage him to close his lips around it.  Generally, he scrapes everything with his teeth.  Lip closure is an important step in speech and language development.  She's been using massage around his mouth and bringing bubbles to his lips as well!

Erika worked with him on feeding as well.  She's trying to encourage him to feed himself.  He was doing well with that for a while...but, in Gavin style, went on strike for a bit.  To get him back in the groove, she used a technique called "chaining" where she'd leave the spoon in his mouth so he'd be forced to pull it out himself with his hand. Tricky, eh?  As a reward after therapy, she bounced him on the big therapy ball which I am SURE my little daredevil just loved.

Tomorrow is a big day!  It's Gavin's first school picture day!  I'm sending Sara to school with props to entertain and make him smile.  Her job is depending on how good these pictures turn out so... good luck with that, Miss Sara!  (don't worry, I'm just kidding.  or am I?)

Big Man on Campus...

I am so proud to tell you that Gavin is doing so well in school.  I am also proud to tell you that I am doing MUCH better with Gavin BEING at school - but who cares about that.  Let's talk about how awesome Gavin is doing.

Miss Megan, Gavin's teacher, takes photos of him occasionally and emails them to me.  I never expected that but, as you can imagine, I feel like I win the lottery every time I get a new one.  It's like a tiny glimpse into his day.  And the images are much better than the ones I get from my perch in the tree across the street.  I really need to ask Santa for a longer zoom lens.

Anywayyyy.....I got permission from Megan to share these photos on my blog!  Woo Hoo!

The first three photos were taken during the first couple weeks.

Gavin has been participating in circle time by pushing a button to say hello when asked...and also making choices to tell everyone what song he'd like to hear!  

They do lots of craft activities which is good for Gavin in so many ways.  It forces him to sit and participate...to use his hands with or without help...and to work with different textures.  So far they've done things like cutting with scissors, working with glue, using dot markers, finger painting and shaving cream play!  Everyone is trying to encourage Gavin to use this left hand, which you can usually find in his mouth.

There's really only been a small amount of times that Sara has told me he resisted doing the craft projects.  Typically when someone has to hold his hands on the dot marker or scissors or whatever to "force" him to do it.  But most of the time she reports that he is doing a great job and letting people help him!  Hooray!!  

As you can see - he seems pretty proud.

I brought in another car load of toys, puzzles, lacing beads, stacking blocks and more today - courtesy of my uber-generous neighbor, Patti.  The teacher and therapists were so grateful - it's always nice to have new things to work with!! 

They are also working hard on self feeding.  Gavin's occupational therapist, Erika, told me they started using the "Easie Eaters Spoon" with him, so I jumped on Amazon and bought it.  It's very cool and makes it much easier for him to get the food into his mouth.  Today they also worked on a craft project- making an apple tree with paint and dot markers.  He wasn't a willing participant, so I was told.  They laid him on his belly and tried to get him to use that left hand again with the dot markers and he fought them through the whole thing.  But there's no denying that the end result is beautiful.  Maybe he'll be a famous moody artist!!

Whitney, his speech therapist, has been working hard on communication.  She's trying to incorporate his iPad into as many classroom routines as possible (ie: circle time, greetings, taking turns, etc.)...encouraging him to communicate in any way when he wants her to continue an activity (ie: bouncing on the ball, singing, etc) by touching her or gazing at an object.  She's also working on lip closure, which is important for eating AND future speech.  Just like Miss Maggie did, she works with bubbles and has Gavin pucker when a bubble comes close to his lips.  And she also puts crushed Ritz crackers on top of his pureed food to encourage him to close his lips.

Megan works with him to match colors, stack, put objects in and out of containers, and so much more. Sara tells me she is a wonderful teacher and a lot like Miss Janna - who, as you know, Gavin just adored.  He really is so happy in her class!!  Today she celebrated his birthday by having everyone sing to him, presenting him with a certificate and taking his photo next to a big light up party hat!  How cool is that!!  Sara said he was all smiles - loved the attention.

Gavin's Physical Therapist, Miss Wendy, works with him in and out of the classroom in his walker.  He uses his open walker in the classroom to transition from one activity to another...and then they cruise up and down the hallways.  He is doing so well navigating himself without help!!!  Then, when they go outside, he uses the KidWalk or Sara holds his hands and has him walk.  Today, when they went out on the playground (which is mostly un-usable for the kids in his class - but more on that in a minute), Miss Megan helped Gavin climb up the ladder so he could go down the slide.  He LOVED going down the slide!  Sara told me that when he got up on his feet again at the bottom, he guided Megan back to the ladder!!  This is so exciting to me.

But the playground.  I have issues with the playground.  It's beautiful, don't get me wrong...but there's not a single swing that Gavin can use.  And all of the equipment is big and perfect for typically developing kids.  Brian would have a ball!  This school was not designed for this "special needs classroom" - Gavin's classroom is brand new and using space in the school.  I have personally called and written to just about every swingset company in our area -  begging them to donate a swing or two.  Or really to donate anything.  But no one seems interested, which is a bummer.  There has to be a way to make this happen for these kids and I'm determined to figure it out.

In other news...this Thursday I'll be keeping Gavin out of school.  He has his very first visit with a Developmental Pediatrician at DuPont.  This appointment was set up many, many, many months ago - it's not easy to get in!  I have no idea what to expect...and, to be honest, I'm nervous for some odd reason.  If you've been to a Developmental Pediatrician, I'd love for you to comment here on the blog with your experience...advice...tips...whatever you got, I'm all ears.  Thanks in advance!