You are officially two years old. TWO!
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.
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).
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.
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...
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!
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...
