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...


  1. Stefani! What an amazing Mom you are! I know so many specialist & doctors you mentioned who happened to have seen Morgan as well! It brought back so many memories of Morgans being little & having so many appointments. Your little guy is so wonderful & adorable! God bless you & your beautiful family!! He is so lucky to have a wonderful Mom (& Dad)! ♡Cindy

  2. Happy Birthday to our Little Jayce man!!❤️
    You truly are an amazing little boy. Like your Momma said "Mellow Fellow" that's you. Nothing really gets you to upset other than when your big brother try's to take Your monster trucks from you, but you seem to stand your ground with him. We are so proud of you and all of your accomplishments. Every time we see you, you have made so much more progress. We can't wait till the day you walk, it will be such an exciting day for all!!
    We love you so much!! Gramma and Papa

    Steph and Adam - You do an amazing job with Jayce and we are so proud of you.

  3. He's Walking! I cannot contain my joy. That is just so (insert swear word) wonderful!!!!!! I am overjoyed to the max. YOU GO JAYCE! Love you Stefani - You are my hero. :-)
    ☮ ♥ ♪ Debbie Solidarity Konkol

  4. Oh my little Naycer! How many lives and hearts you have touched! You are our miracle baby. You and your accomplishments are amazing and you and your Mommy have come out on the other side of this scarey road you have traveled. When I hear you say "Mommy" it warms my heart and makes me smile. Your family loves you so much. I laugh when I hear your Daddy say "he's turned in to a little ????" How funny, but welcomed! You love Wil so much and he loves you. You love to smooch each other and wrestle and have monster truck shows. Your mommy wanted you two to just play and support each other as brothers and that you do! Our hope is now that you might be walking good this summer so you can move this friendship outdoors. You just keep on trucking Naycer. You and Mommy and Daddy and Wil. Mommy will keep on working with you and taking you to all the wonderful people who help you reach new goals. Daddy will keep working extra hard and extra long hours to make these goals possible. And Wil will keep treating you like a little brother so you have a normal 2 year old's life. The rest of us who love you will be there to encourage, support, and be your very own cheering section! You are the coolest little guy I know and will forever hold a special place in my heart! Love and great big hugs to the 4 of you! You are all AWESOME.

  5. I wish he was walking, folks... Perhaps that video was a bit misleading. :( He's taken his first steps, which for most kids usually mean he's got it figured out, but not quite for Jayce. He still crawls all over as his main form of transportation. He'll take a few steps from here to there if he's incredibly motivated, but mostly just at Phyiscal Therapy, but ya know what... We'll take it! We know that for Jayce, he usually 'gets there', it just takes him extra long. :) Thanks for all of the well wishes and for sharing in our joy!

  6. Stephanie, I can relate so very much. I am in tears right now as I feel everything that you just said. You are amazing and so is Jayce!! We just found out that our 3 month old also has the same heart condition that Ezra had and so now we not only have a "heart child", we have two. I am a "heart Mom" and so I was meant to be. So unfair all around but we always seem to find joy in our lives. Keep on truckin' girl. Loved reading this. xoxo