Monday, March 31, 2014

2 Years...

My sweet Jay-Bird,

You are officially two years old. TWO!
Before I get all nostalgic on us and trudge back down memory lane, let me begin by telling you all about YOU! Did you know you are amazing? Like, seriously, AMAZING! You have the greatest personality. You are always so happy and splendid. Really. Nearly every second of every day, you are happy and calm. You are much more like your father than you are like me. You don't like to be the life of the party. You don't talk much, unless you've got something you have to say, you're quiet around strangers, and you're mellow. A mellow-fellow....

Unless your brother makes you mad, then you've been known to chuck a car at his face, or bite, or scream at the top of your lungs, or bang your face on the ground. Literally. But, like your father, this rampage only lasts a few seconds and then you're cool again. You like meeting new people (although you have a tendency to pick your nose if you're feeling shy), smiling at everyone you see (particularly if you're using your walker, which turns you into the king of the world) and going places, which for you usually means to therapy or to the doctor, but you know what, you don't even mind that! Seriously. You are just... easy. This is a much needed change from your infancy because back then... you were not. Easy, that is.
We took you to the doctor last Friday for your 2 year old check up. You weigh 27 pounds, which is a bit small for the average 2 year old, but we expected as much. Your hair grows like crazy, which means more frequent haircuts compared to your brother (who was bald up until about a year ago). You love to take baths and play outside.You love playing with your big brother ~ anything he does, you want to do too ~ monster trucks, dinosaurs, and blocks! You also love playing the I-Pad, but not those fabulous, language enhancing apps I've so diligently researched and downloaded for money. Nope, you prefer Mickey Mouse or Curious George episodes (you call them "icky" and "ooh-ooh-ohh-aahh-aahh-aahh", which you learned from your friend Beckett). We've started to enforce the "First, Then" method with you so that I know "First" Mommy chooses the app/learning game, "Then" you choose. Not so fun, I know, but I'm the Mom.
You love cheese and yogurt and any piece of fruit you can get your hands on! That is it, though. You are a picky eater, I tell ya! Really picky! You also love to have a cup nearby to have a little somethin', somethin' to drink. Your latest obsessions are "oooossss" and "waaaa" (juice and water, which you say with a simultaneous sign). Speaking of sign language, you LOVE it! We don't sign much with you (your therapy is primarily auditory-verbal, which means we want you listening and speaking to communicate), but you love to watch your speech therapist from Birth to Three sign for you. Every week, we learn a few more "functional signs" to add to our ever-growing list. This week you learned "upside-down!" and it's a mighty fun sign. Now your trucks always end up "upside-down!" And that, my friend, is FUNNY! (You think).
You are just the coolest kid. I never have to worry about "will Jayce freak out here?" or "Jayce really needs a nap, we can't do this or that". Nope. Not you. You're just so easy-peasy and go-with-the-flow. I hope you always stay this way.
Nothing really phases you, which is so interesting to me because things are extra hard for you. Very basic things that come easily to other kids like listening or talking or walking (any kind of movement really, even sitting) are very, very challenging for you. Your body doesn't "just do" these things. You have to teach your brain how. You have to concentrate extra hard. You have to see specialists who work your body and your brain to do normal, human functions. It's exhausting to think about and imagine, so it's so surprising to me that you've got such a calm demeanor. Sure, you get frustrated at times, like if your brother's outside, but you can't go because you really shouldn't crawl around in the rain and cold and mud, but you shake it off rather quickly.

You have to endure so much. More than you should. Most toddlers spend time at the library or at the park, but you spend your time at therapy. Twice a week, at least. I didn't really realize how intense this past year was until I started looking at my calendar to see if we could "claim" our mileage from your appointments on our taxes (we can't). You had exactly 117 appointments in 2013. 117... Multiple visits for Physical Therapy, Speech Therapy, Audiology, Urology, ENT, Botox Injections (4 times), Orthotics, Neuro-Suregery, Waisman Center follow-ups with an Occupational Therapist, a Nutritionist, a Social Worker, a Psychologist and a Developmental Pediatrician and of course Birth to Three, who actually comes to our home, thank GOD! And honestly, after all of that, you hardly cried or complained (ok, except for during Botox injections because those flippin' hurt and during PT because Jim makes you walk and that makes you mad).
I realized something else while looking through my calendar that day. I was right there with you. Me. Every single time. You see, it really is me and you against the world. Sure, we have our support, but at the end of the day, it's just you and me. At first, I was resentful of that. As time with you went on, people seemed to go on with their lives (as they should, of course). People didn't check in as much. They didn't ask questions or notice how much progress you were making. I felt so alone. I felt like WE were so alone and I didn't want us to be alone. I just didn't think I was strong enough for us to do this alone. But, I am. We are! And, I'm learning that it's just the way it has to be. I'm sure there are many other Mamas of special needs kids out there who can totally relate. We do all of this because we have to, because it works, because you're worth it, AND because your Daddy is the hardest worker on the planet, which enables us to do it! You never stop fighting, so neither do I. It's the least I can do for you.

This past year has definitely been the busiest one yet, but it has also been the most rewarding. The first year of your life was really a blur. The uncertainty that was your future was completely paralyzing for me. I was so scared, all of the time. It wasn't until your first birthday (the night before your cochlear implant surgery, actually) that I realized that you were mine and that you were going to make it... that we were going to make it.

 And we are.

You are making such huge progress! It's impossible to even put it into words. You have a new Speech Therapist who you've been working with since mid-January. She's totally impressed by you and your progress! It's taken some time for you to warm up and 'perform' for her, but you're doing great now. She also gives us "homework", which is helpful for the teacher in me. It's weird, even after looking at that calendar a few weeks back, there's always this part of me that thinks I should be doing more. More therapy. More work at home. More playdates with peers in a language-rich environment. More! More! More! But, when I feel like I/we should be doing more, I remind myself of how far you've come (and that you're ONLY 2 for crying out loud) and that there just isn't enough time in the day or in our family's schedule for more, and that sometimes, I just need to let you BE. And so I do. And that, little buddy, is so special. These are the moments I cherish for you...
Right now, you have speech 1-2 times per week and I think that's enough, however, I am excited for next fall because we're enrolling you in the UW's Center for Communicative Disorders "Story Hour" program! It's a preschool program for children with language delays that meets two days per week. Each preschooler is paired with a Graduate Student (a speech pathologist, for example) who shadows the child and develops communication goals for him. It'll be a great way for you to begin a preschool program while simultaneously working on intensive speech and language skills. Yeah! Now, let's just cross our fingers that you get in... I've only called the Center four times and sent 3 emails reminding them to pick you! Yes. I am THAT mom. Sorry.

Here you are 7 months after having your ear "turned on". Every 6 months, you meet with your audiologist who checks the programming on your implant and tests your hearing in a sound booth. When you were first tested (without an implant) you responded to nothing, obviously. Booth testing involves your audiologist sitting in front of you (distracting you) while another audiologists checks your hearing of different pitches, tones and frequencies (I think, basically). This was the first booth testing that also involved speech, which you responded to immediately. You'll notice as this video goes on, the sound of the audiologist's voice gets softer and softer. When you hear the sound, you look to it, which is a speaker placed in the corner of the room. If you respond correctly, the speaker lights up! Very cause and effect, conditioned responses. Somewhat Pavlovian in nature, but you love that speaker when it lights up, so apparently that rewarded behavior works just fine for you!
I cannot express to you how amazing your speech progress has been. I stopped counting and writing down your words when you hit 50 a couple of months ago. 50 words! You're combining words and you have intonation when you ramble and you answer your own questions ~ all of this is huge!! Your favorite word is Mom or Mommeeeee, which you say all day long while searching for me. It's like music to my ears! You also love to put your hands by your mouth and yell, "Wuh", which means Wil. You often yell, "Wuh. Stop! No!" at your brother too. It's so annoying to him because he's usually not doing anything wrong, but I secretly LOVE IT!!! Keep up the good work!!!

And your Physical Therapy (our nemeses)... Well, take a look at this, Mister! You took your first steps last Monday, March 17!!

When you were 9 months old, your therapist, Jim, told me that you would walk. I will never forget that day. It was huge because until then, no one was sure. You do have Cerebral Palsy, after all. Not to mention hearing loss, which can have some effect on your balance and coordination. 

Now, hearing those words, "he will walk" was something, but months went on. And then an entire year, and still nothing. You weren't even close. 

And as the time went on, that doubt and fear for the future started to creep back in for me. I knew in the back of my head that being 2 and not being able to walk was huge. Huge, as in NOT GOOD. The old me started to reappear. I became obsessed with figuring out WHY you weren't walking and WHAT we could do about it. But every doctor or therapist we saw kept telling me to give you time and that using a walker for a few years wasn't the worst thing that could happen. 

So, I stepped back. Took some deep breaths and tried to let go. And just as I started to let go, you took your first steps. Jim and I both teared up and I hugged you and praised you up and down. That was two weeks ago. Are you running all over this house? No. Of course not. Will you be in 2 weeks? 2 months? 2 years? I have NO IDEA. But right now, today, I believe that you will... someday. I am so proud of you, Birdie!
Obviously your hearing loss and Cerebral Palsy are the BIG items on our list to focus on, but we've also spent the last few weeks following up with all of your specialists. Apparently you do that every 6 months (or so has been the case for you). 

We met with Dr. Heatley who checked your cochlear implant and ear tubes: looking good!

We met with Dr. Iskandar who looked over your latest CT: No late-onset hydrocephalus, ventricles look good, schedule a follow-up CT and visit around age 3.

We met with Dr. McLeish who relieved some of the spasticity in your legs with Botox injections and recommended Hippotherapy (horseback riding to strengthen your core and improve your balance and coordination ~ we'll see where we can come up with the money for that... you know we WILL:)

We met with good ol' Scott at Middleton Rehab who's making you a new pair of Sure Step foot orthotics.

You were officially evaluated by The Katie Beckett Program to see if our family would qualify for medical assistance for those things not covered by private insurance. We got a big, fat DENIAL letter in the mail, which is GREAT news for you because you're doing so amazingly well, but not so great for your Dad and I when paying for this and that, but we'll make do. PS ~ Did you know there are many, many grants out there for children with special needs?!?! There are! I've started to apply for you! I've got your back, baby!

And last, but surely not least, we'll meet with Wendy, your audiologist, in April, to check the programming on your implant and for more sound booth testing to make sure every things in tip-top shape in the hearing department.

Also, can I just say something? I just wrote all that and it was totally fine. Like, no biggie. Just regular ol' life going on around here. That's weird for me! Are you rubbing off on me a bit? Making me all cool and calm and collected? If so, keep up the good work!
So, that's it. You are 2 and I can't believe it. You are my special, loving, sweet little (mama's) boy who I am so lucky to have. You have my heart and their is nothing in this world I wouldn't do for you. 

Until next time...

Thursday, March 20, 2014


Today you are four. And I am a wreck. I don't know why... I've been dreaming of this day for 4 entire years! I couldn't wait for you to be four ~ it's one of my most favorite ages... and then 5 and then 6 and then 7 and then, well, I'm not so sure after that because it's kind of beyond my education major.

Before I go on, let me reminisce a bit... I know, I know. You didn't enjoy doing this when I woke you up this morning either, but I'm THE MOM!! I need to do this...

Where did the time go?

I can hardly remember this baby.
It makes me so sad...

And you just keep getting older, and older, and older. 
Right before my eyes, but not really. 

You turned 2...

And then, 3... 
You got a motorized vehicle for your birthday for crying out loud!!

And now, you are 4... Officially, at 3:07 this morning.
I left 4 balloons waiting for you when you got up this morning. 
I also got to volunteer in your classroom today at preschool.
Your teachers made you a birthday crown and sung "Happy Birthday" to you!
We're having a little party for you tonight. Just me, you, Daddy and Jayce.
You've requested Pizza Ranch for supper, but not until AFTER you play outside this afternoon. It's the first day of "ping" after all!

So... Back to the beginning...
Four is huge! (I know, not really). But, it's been the hardest age for me yet. Maybe it's because you'll be starting school in the Fall. Like real, public school that we don't have to pay for (sort of). You'll be going Monday-Thursday mornings. You may even ride the bus! We did your 4K screening at the Early Learning Fair a few weeks back and you were amazing! Like, totally cool. Like a real 4 year old, amazing! Like, we may just be past those "threes" that NO ONE prepared me for, until after the fact. Three. Tricky.

You listened really well. You did all of the "screenings" they had prepared for you. 
(Here you are getting your vision tested). 

You met knew friends and hung out with some ol' trusties. 
And you toured your future classroom!
 I actually left there thinking, "Wow! He did so good. He didn't freak out at all." 
And trust me, their were plenty of kiddos who were nervous!
Not you. Nope. You were a big boy!

In other news about you and your fourth year. You still love monster trucks. Anything and everything monster trucks. You went to TWO shows this winter.

You love playing outside (with friends).

You've really been diggin' our new computer. It's amazing how fast you've learned how to navigate your way around PBS Kids and Disney Junior! You've really given up the ol' I-Pad, too. That's really only used to search for Monster Truck races on YouTube. 
You love pancakes and spaghetti and reading books (The Mo Willems Pigeon Books are your current obsession). You love singing (especially songs that Mrs. Klade teaches you). You LOVE, LOVE, LOVE the movie Frozen and would prefer Tinker Bell undies over your boring ol' Toy Story any day... but, Daddy won't let you. You love riding your scooter, taking walks and you've been dying to go "tad-poling" with your best buddy Levi, but we have to wait for summer. You're also silly. Secretly, silly. You've got a great sense of humor and your laugh is so contagious! You're getting taller and skinnier and you think you know everything. You also lie. You make up elaborate stories that I swear you'll take to the grave. Even when YOU know, I know you're lying, you won't give. This is cute... for now.

You also love your brother. Really. Most of the time, really.
I know I've said it before, but in the beginning, I doubted if you and he would have a bond. Would he be the brother you always wanted? The brother you deserved? Would he be able to talk to you and play with you and learn from you? Shortly after he was born, you taught me that none of this really mattered. That you loved him just the way he was. He was your brother. It took me a little longer to see it, but now I do. He absolutely adores you. I tell you everyday. You are his most favorite person, in the whole wide world. And you believe me.
Yesterday, you were getting out of the car to go to school, you scooted over to his carseat, grabbed his face, smooched him hard and said, "be a good boy, Nayce. See you after school. I love you!" He then responded, "buh-bye" with a huge smile and wave. These are the moments that I LIVE for...

You are one amazing kid, Wilbur Anthony Geurts. I am so lucky to be your Mama! I love you!!!!

Thursday, March 6, 2014

Christmas... And Other Winter Happenings!

Christmas... A Few Pictures!

There were presents, of course! 

And cousin love!!

Not to mention... A First Christmas for 2 VERY SPECIAL baby girls!! My babies!!

IN OTHER NEWS... In case you've been living under ground...

This winter has been rough. You see, there's this thing called, "THE POLAR VORTEX" and it has hit us three times since January. Long story short... It's been awful! Generally, our weather pattern since Christmas has been: a good week or so of freezing cold weather, seriously, like 30-50 below zero, followed by warmer temperatures (20 degrees, tops) and snow. Not 20 inches of snow. Nope. Like 2 inches and then 3 days later, another 2 inches and then 3 days later, another 2 inches. Aaaaannnnd, repeat! Freezing cold. Snow. Freezing cold. Snow.

Not good. BAD! It's bad for everyone. But, mostly for Moms who stay at home. Or daycare providers or teachers. Basically for anyone who spends more than 4 hours a day with children. Oh yeah, it's been bad for kids too. My children are crazy! They're so bored and sick of being stuck inside! We've been eating McDonald's at least every other week (just to "play" at the PlayLand), visiting the Mall all the time, and spending loads of money at places like Bouncy Town and MadTown Twisters. 

One other little tidbit about THIS winter I should mention... Did you know that freezing temperatures and insane/abnormal weather can cause gas pipes to leak or burst or something? It's true. Which is also bad. REALLY BAD! Because while my boys and I have been stuck inside banging our faces against furniture (literally if your name is Jayce, but that's a whole other story) the Daddy in this family has been working. Constantly. Like some days for 24 hours straight! Poor guy! 

Needless to say, we're ready for Spring, which is no where in sight. But, I keep reminding myself that (like everything in life) this too shall pass.

So, we've been busy. 

And hanging out with friends (in our pajamas at 10am... why not?!?).

And taking baths... A LOT, because WHAT ELSE DO WE HAVE TO DO FROM 4-7pm???

And playing monster trucks. Bored.

And eating...
And baking...

And playing the I~Pad. Still bored.

And waiting for "PING!!!"

And, when we could, we went outside.
To the Zoo.

Or to 4 Wheeler Ice Races on Lake Wisconsin.

But, it was cold. REALLY COLD!

And that is all.