Thursday, January 24, 2013

We Quit.

Do you ever have days like that? I do. A lot. Days when I just want to pack everything up and move my kids to some secret land far, far away and just live. No appointments. No uncertainties. No worries. No comparing. No fear that you're doing everything you could possibly do wrong. No interactions with anyone who won't just let us be.

Ok. Let me start over. Let me preface this by explaining... You see, I have this neighbor. This person in my life who I can call anytime and say, "I quit!" A neighbor who will never ask why or encourage me to look at the "brighter" side or tell me to buck up. A neighbor who very simply says, "I flippin' hear ya". She says this to me because she's living my life. She gets it. She's got a husband and a 3 year old and a baby who was born the day after Jayce. A baby who was born different than she had planned. A perfectly gorgeous baby girl who, like Jayce, fights everyday to learn and grow and develop because, like Jayce, it just doesn't come naturally for her. So, when I call her to say, "I quit" she knows what I'm talking about. I'm sure you have someone in your life who gets it. Who it seems has the same life as you. Someone who experiences the same joys and heartaches as you at exactly the same time.

I will admit that I feel guilty to say those words out loud, so I rarely do (except to my neighbor) but sometimes I feel it. I feel it when we're sitting in a waiting room and then suddenly it hits me, "my baby is waiting to see the neurosurgeon... What?!?" It hits me while I watch my baby struggle during physical therapy because he doesn't want to shift his weight and rotate his hips to reach that toy he just wants someone to give it to him dammit. So he whines at me and reaches for me, but I can't scoop him up and run him on out of there because I know these stretches are important for him. It hits me as I'm rushing from speech therapy to pick up Wil from school on time while simultaneously thinking, "this isn't what I had planned when I was pregnant with Jayce. No. I thought he and I would enjoy story time at the library on Tuesdays and Thursdays while Wil was in school and long visits to Target and walks and playtime and secret, snuggle sessions with my little one while my big boy was away". I should also mention that while I'm thinking all of that I'm shaming myself for not working on speech patterns enough with Jayce like I should have since our last therapy session. I'm failing, but how do these people expect me to work on ALL of this stuff... Thank GOD I don't have a job!!! (Although sometimes I think it may do me some good.)

So, sometimes we quit. Ok, maybe it's more ME. Maybe I quit. Maybe all of this catches up with me from time to time and I need to take a moment to say, "wait a minute... this sucks!" Yes. I know it could be so much worse. And yes. Jayce doesn't know any different. But, still. It sucks.

I've said it before, it's not so much the news we hear about Jayce: the hearing loss, the inevitable CP diagnosis, the therapies, the "he may nevers" and the "it may be difficults" and the "we just don't knows". It's the fact that this is it. That this is our life. His life. Forever. I will not lie. I still go to EVERY appointment and therapy session thinking this just might be the day when someone says, "you know what, my golly, he's just perfect and regular and you people never have to come back here again. Ever." And then I leave every single appointment and therapy session reminded that this is our life. Forever. And that no one will ever say those words to us. To him. There will always be appointments and follow-ups and therapies and the possibility of something "more.." looming around every corner.

So. Today I quit, which usually involves a nap with my 3 year old, but not before some venting on this here little blog of mine. Tomorrow is a new day and I'm sure with it will come the inevitable thoughts:  "We can do this... we ARE doing this" (right, Anne?!?:) and "My kid's gonna change the world one Ankle-Foot Orthotic at a time" and "My Wil's gonna be the best, most caring, accepting big-brother-advocate for kids that are 'different' this world has ever seen!" Aaaah, yes. Tomorrow.

Until then... Brother "love" overload!!!
Horrible posers!
Why can't they both just look at the camera and hold still?!?
HaHaHaHa!

Note to self: In the future... I vow to make this blog more optimistic. I promise to post splendidly boring information about my family's normal life. Posts about potty training and a baby who is obsessed with buttons on our TV and DVD player. Posts about fighting brothers and temper tantrums and day trips to the zoo and the funny things my toddler says. Yes. Fun things. Normal things.

Here's something... Today Wil fell on one of his trucks. I saw the entire thing go down, but tried not to react so as not to encourage the whole crying, wanting Mommy thing. You know.

Scene:
Wil falls on big, yellow truck.
Wil: "Owwwwwwww, dammit"
Wil... to Me: "Momma, me durt my balls. Daddy gonna feek out!"

Aaah. The joys! We're still working on swearing. I die.

Monday, January 7, 2013

All Things Jayce

I guess it's time for another update, although I had to remind myself where I left off because it's been so long since I've written anything. Nearly three months ago, I told you about our visit to the Waisman Center along with the therapies Jayce is involved in...

Well, a lot has been going on since then (imagine that). Jayce has been visiting with his speech therapist twice a month. We've been working on lots of new things - but our main focus has been keeping his hearing aids on! Jayce has also been exploring new sounds through play. He enjoys banging on a drum (or anything, really) and it's been exciting to watch him actually take an interest to sound. Everywhere we go, I try to point out a new sound. If he's sitting in his high chair and his brother lets out a loud squeal, I look at Jayce with my finger to my ear and say, "Did you hear that?" and then I ask Wil to do it again and again so we can point it out to Jayce some more! It's loud around here! Even while reading books!
We've also been trying to encourage Jayce to make sounds such as "mmmm" and "buh", which is typical for his age. He's able to produce vowel sounds, but he still isn't making any consonant sounds or typical speech patterns like MaMa or BaBa or DaDa yet. He mostly just yells or screams or whines to get our attention. He is responding to his name rather consistently when aided. This is great... even if he is only hearing the first letter of his name (I'm sorry I put a high frequency letter in your name little buddy ~ you can't hear it ~ I should have named you Bob:).

The best part about speech therapy are the games! I really wondered what "speech" would look like for a baby, but it's amazing! Jayce's favorite game involves two puppets ~ a cow and a chicken (this reminds me of my friend Sondra, but that's a whole other story).  She holds the puppets in front of Jayce and makes a distinct sound for each animal (a MOOO and a BUCK! BUCK!). She moves their mouths as she makes the sound so that he associates the sound to the moving puppet. Then, she tries to trick him into looking at the correct animal after a sound is made without any puppet movement. He has to learn to listen for the sound RATHER than look for the visual cue. Tricky, tricky! Especially for Jayce, my little visual learner.

Jayce has also been working hard during Physical Therapy. We started at the Middleton Rehab Center on Tuesday, November 6th. We met with a great pediatric physical therapist named Jim who decided after a brief evaluation that Jayce would benefit from weekly, intensive PT for three full months. Now this posed a bit of a problem because our insurance company only approved six sessions (yes, 6... I hate them ~ more on that later), but when someone tells you your child "needs" something, you go with it. So Jayce got to work...

Jayce has hypertonia (increased muscle tone) in his hips and legs. This basically means that these areas are very tight; his muscles are quite stiff. So, some very basic things (although I'm learning that nothing the body does is at all basic) like sitting or changing positions is difficult for Jayce. Imagine sitting up while your legs are bent at the knees. Now I'm not talking sitting "criss-cross applesauce". I'm talking knees up and legs stiff. It's hard and wobbly! Changing positions is hard for Jayce too. His muscles seem to get stiffer while in one position, so moving into another is tricky. So therapy for Jayce requires him to move! For the first 30 or so minutes of the session, he's all smiles, but after that.... look out! The thing about Jim is that he doesn't give Jayce ANY help. If he wants a toy that's on top of a table, he has to figure out how to get up there. Here is what PT looks like for Jayce:
 
Stretching!
Jayce's quadriceps and hamstrings are super tight, so we've got some specific stretches we do multiple times a day to loosen him up. The thing with hypertonia is that it's neurological, so he'll probably always be this way. The therapy is a way to teach him how to function as "normally" as possible with this condition. He's also working on touching his toes. I painted his toenails purple to encourage this as well. Jim thought this was funny. I was serious! I never knew that some kids couldn't touch their toes and that this was a problem... Better yet, I guess I never knew it mattered enough to pay attention! I'm assuming Wil touched his toes, but you know what ~ I never cared enough to notice. Funny how things change... Jayce WILL touch his toes.
 
Sitting on top of a bench will increase his core strength (belly muscles) so that he doesn't topple over while sitting. Reaching out for things in front of him is also a good way to strengthen his muscles and improve his overall balance and coordination.

Here, Jayce is on his knees. His therapist is working on changing positions~ kneeling to standing. Jayce's body just doesn't seem to do these things naturally. While he's on his knees, he doesn't automatically lift a foot to stand up. He's too tight. In fact, if you were to try to do it for him, it's nearly impossible, he's that stiff!

 So, the therapists are really working on teaching and then encouraging Jayce to shift his weight, then lift his foot, put it under him and push! It's so interesting. He's kneeling there and you can tell he's thinking, "I want that light-up wand, but HOW?" He works so hard and with Jim (and Janelle's) help, he got there!

Here the therapists are working on changing positions from sitting to crawling and then back to sitting. At this point he was almost 9 months old and I was getting worried about the whole crawling thing. He wasn't crawling. At all. I kept reminding myself that some babies don't crawl, but I wanted it so bad for Jayce.
 
You see, the thing about Jayce is he WANTS to do these things. For months, he's been rolling from one place to another just trying to figure out how to go FORWARD, but he just can't. He can barely get into the crawling position, let alone "SHIFT" his weight and pick up his legs.. one and then the other. Given all that we knew about Jayce, I wondered if he'd ever crawl or especially walk. It just seemed so hard for him... so unnatural.
 
After about 4 weeks of therapy with Jim, we learned a few things. He explained that hypertonia and Cerebral Palsy are closely linked, but that if he gets a CP diagnosis, it really won't change Jayce's "plan". Now, that's all he's said about that because he's obviously in no position to diagnose, but based on our conversations, I'm coming to terms that it's inevitable. I guess we'll see in April when we visit our developmental pediatrician. She's the one who would give him the diagnosis anyways.
 
We also learned something rather spectacular. Jim told me that he would be "surprised if Jayce doesn't walk". Now that just made my day, my year! Until that day, no one had ever given me any inkling that he'd be able to walk. In fact, people basically scared the you-know-what out of me every time they said those 4 dreaded words, "we just don't know" which always, ALWAYS felt like, "we actually do know... it's going to be the worst possible scenario you could ever imagine, but we're never going to tell you how bad it's going to be because we just don't want to ruin your day and we love a conspiracy around here". That's what "we just don't know" feels like to a Mommy who's terrified all day, every day. Of everything. Jim says he should be able to walk, we just don't really know what the "quality" of his walk will look like. Now, this scares me a bit, but we've also learned something else about Jayce during these last few weeks of "intensive, weekly therapy"...
 
Never. Ever. Ever say, "Jayce might not be able to..." or "it may be very difficult for Jayce to..."
 
Because Jayce might just tell you to "Suck It!"
 
The proof is in the pudding...
 
"Touch my toes, easy!"
 
"Sit up tall, not a problem!"
 
"Crawl. Who said, 'never'?"
video
This video was taken on December 8 when Jayce first started crawling. He was 9 1/2 months old (only two weeks behind Wil). He's amazing now! He crawls all over the house!!
 
 
"Pull myself up? Shift my weight and bring my legs in?"
"Done."

"And done!"
(Pardon the crooked butt shot. Men. No butts!)
 
I know he'll be pulling himself up to standing in no time. I just know it!
 
So, that's our Jayce. This little man just never ceases to amaze us. All of us. These last few months have brought so many appointments and so much more to think about because we're actually getting to know Jayce. We're beginning to see his future. And you know what, it's not as scary as I imagined. It's actually looking pretty regular or at least regular-enough compared to where we started.
 
Keep on, keepin' on my little fighter boy!

Thursday, January 3, 2013

Time.

It seems to have passed me by. Does that ever happen to you? I use to measure "time's passing" through my students. My first class right out of college was a group of 2 years old back in 2005 (I think) and now I barely recognize them in pictures. I try so hard to find that little face in their braces and long hair and cool clothes and they're just gone. Gone. How sad is that?!? I've become close friends with so many of their parents along the way and just cannot believe what a difference a year makes... let alone 10!

So... here I am. A mom, too. The funny thing is, I haven't really felt like time is flying by (it's been a rough year). Until I look at my two boys.
 
How did this happen? In less than one year? Notice the date...
 This next picture was taken exactly one year later...
 
And this?!? Come on, give me a break!
10 months, people. 10 months!

I think I've noticed it more with Wil because almost 3 seems like he may as well be off to college next week. I was looking back at photos and videos that I took shortly before Jayce was born and I just cannot believe how different he is. First of all, he talks (finally). He talks all day long. He sings and fights with me and uses swear words in context, like if he happens to fall down, "Oh man, I just fell on my ass" comes out as clear as day (we're working on that whole swearing thing ~ I die from shock and them from laughter and then from guilt:).

Wil is so much fun! He loves going to school ~ he talks about Peter and Ethan and Charlie and Victor the most. He loves his teachers and is excited to go every day! He's learning to count and sing his ABC's and draw lines and circles and most importantly ~ PLAY with friends! He's obsessed with trucks and racetracks and his father. Anything Adam does, Wil MUST do too. He loves playing outside and wrestling and watching "hootball" (football) and breaking things like huge block towers we so carefully build together. And he likes farting. He is SUCH a boy. Here are some of my favorite pictures of Wil from the past few months:

 Messy is fun!

He's my little fish. He LOVES the water!
 
Working on "gentle".
 
 One of his favorite things to do at Grandma and Grandpas...
 Ride the "trator" or "door weeder" (four wheeler).
 
 My techy (like Uncle Nino and Bumpa).
 
 Fall fun. He thought this was funny and called it the cow's butt. City kid.
 
His school's Holiday Program (singing Jingle Bells).
 
 Sorry if the following is offensive, but I said these were just some of my favorites and this is near the top of the list because it perfectly depicts my son's personality... we've been working on potty-training for what seems like an entire year. I did encourage peeing on a tree at one point. Whatever works, right. (It didn't).
 
 
 
And then there's my little peanut butter, Jayce. He too is changing so much! When I look back at pictures from "the beginning", I cannot even believe it is him. He was so fragile and small. So helpless... Now he's like this completely different person! He is so happy! He screeches and howls all day long, mostly when he wants to get your attention. He loves to eat and play with his toys along with a misplaced remote control or cellphone or dirty sock or diaper or Kleenex box or whatever else he can get his hands on. He is the most attentive baby I've ever witnessed. Always watching. Always thinking. And my most favorite thing about Jayce is his smile. It's automatic! He just needs to see your face and it's on! This has always intrigued me because he can't hear. He has no auditory stimulation at all, but he doesn't need it. He doesn't need to hear a silly, baby voice or a song or laughter. He just needs to see your face. It's pretty amazing.
 
Here is Jayce!
 





 
Ok. So I've been away from my blogging world for some time now and obviously needed some time to swoon over my own children. But, I just need one more minute because my most favorite thing about my boys is there love for each other. 10 months ago I wasn't sure what their relationship would be like. I didn't know if Jayce would be the brother that Wil had imagined, or the brother I hoped he'd have. It took only a few days for them to form a bond and they truly are best friends. Wil talks to Jayce all day long and usually ends each sentence with, "ya hear me Nayce?!?!" to which Jayce responds with an enormous grin (good enough for Wil). They fight like crazy too. Wil rolls Jayce from place to place and pushes him out of his way constantly. Jayce is starting to retaliate though.... let the biting begin!
 
I came across this video just today and had to share it. I somehow managed to capture this priceless scene in "the beginning" and now looking back, I realize that after everything we've been through. This is it. THIS is what matters.
video
 
Here's to a NEW Year! Happy 2013