Monday, August 19, 2013

Don't Blink - Part 1

There are far too many updates to write a separate blog post for each.  By the time I got even half of them written, we'd be just as far behind yet again.  So instead, I've been compiling a list of all of the blog worthy updates that I want to capture in writing and I'll list them over a few posts...trying desperately not to blink in fear of missing yet another amazing thing my children are growing through.

1. A miraculous gift - I'd been debating for weeks about whether to consider a walker for Caleb.  He lacks balance and leverages furniture not just for stability, but to lean on and to prop him up.  Our therapists have been pushing us to get things like buckets and chairs for him to push around with our supervision, so my mind started going to an actual walker as a tool for him.  He tends to lean forward onto everything, so a posterior walker would be something that he wouldn't have that luxury with, something to force him into a little more understanding of his center of gravity.  When I brought it up to our PT, she said that he is too unstable to use one now and as soon as he becomes stable, he won't need one- he should walk on his own.  But I couldn't get it out of my mind.  I saw it as a tool to practice on, and to build motivation so he can feel maybe just a little "upright" freedom sometime soon.  I decided to go around our Early Intervention program and reach out to our long term care coverage to see what we could get.  Walkers are expensive, so buying one out of pocket would be tough.  They had us come into the Rehabilitation Clinic and did an eval with their PTs.  The PT at first mentioned that he would probably need a front walker, that he wouldn't be able to cognitively grasp the idea of pulling a walker behind him while stabilizing himself. I asked if we could just try one to see how it fit and how much work we would need to get there, so she brought in one of their practice walkers.  It wasn't three seconds after setting the walker down behind Caleb that he had already grabbed onto the handles and started taking steps forward, pulling it along behind him!!! I actually had my eyes on Grace as she was pulling all of the bean bags out of one of their bins when the PT said "You're gonna want to look at this". I turned around and was completely stunned. We all were! We spent the next 20 minutes trying out different motivation tactics to keep Caleb walking. He wasn't sturdy by any means, he couldn't walk independently- he needed someone to stand right with him and help him if his feet got tangled or if he leaned forward too far, but he ended up walking the entire length of the rehab center, up and down a long hall way, stopping from time to time to grab some of the paper stars hanging from the walls.  It was like a dream.  I never could have imagined- watching my son get his first taste of freedom.  Maybe just an appetizer, but it was glorious! 

The PT noted that because he isn't independent on the walker, they couldn't make one for him.  She looked me in the eye and said that she could tell that our little man needed a walker, and she knew everything happened for a reason.  She left the room and came back in with a shiny green walker adorning two cartoon stickers and a tag labeled "Donated to CRS".  They had just received the walker from as an anonymous donation for a child who needed it but couldn't have one made.  It was surreal.  She asked me to promise that we'd bring it back to donate to the next little one who needed it as soon as Caleb was walking.  I cried, thanked her profusely, and left that clinic with more hope than I'd had in months.  It was an unbelievable morning.

Caleb walks with it every other day or so, up and back our kitchen or down the hall upstairs.  Our PT still doesn't like him using it too often, she's afraid it will be dangerous or eventually become a crutch.  I just see it as the next step, a little green teaser of Caleb's potential.

2. Bubbles - I want to make sure I document the first time Miss Gracie really loved the pool.  I have a bit of a soft spot for swimming and I want nothing more than for my littles to love the water and be able to swim happily and safely.  I've been working with both of them, with a lot of help from my Mom, on trying to blow bubbles.  We recently just took the plunge and dunked them both under the water.  Caleb didn't love it, and likely inhaled a bunch of water with out coughing it up :/ but Gracie seemed to latch onto it a bit better.  Sure, she coughed and choked a few times, but recently, she's really taken to putting her face under water and glowing at the reaction she gets from a very happy Mama!

A couple of weeks ago, my family came over for a pool day and Grace decided she wanted to ham it up in the water.  She was blowing bubbles all over the place, practicing kicking, crawling around the edge of the pool hanging onto the side, and asking over and over to be thrown in the air! My favorite was how excited she'd get when I put her on my back to actually swim around.  She loved that, as well  as being lifted all the way out of the water by her legs and reaching way up in the sky! This little one loves taking risks; I see some gymnastics in our future.  (I think the swimming will last a bit longer, this little girl is likely going to be 6' tall!) So now she's caught the water bug and every time we're in the bath tub she's trying to swim around, blowing bubbles and kicking her feet.  It's pretty much awesome (and very, very wet).

3. Progress - Caleb just started ABA therapy with an AMAZING therapist, Katie, who is BCBA certified and incredible with him.  She's so gentle and patient with him, but she does a wonderful job of engaging him and enforcing what needs to be worked on.  He just stares at her sometimes, like he's just as amazed as I am.  :)  We met with the Developmental Psychologist a couple of months ago and he introduced ABA to us.  We had been doing many of the high level philosophies already, but had been completely inconsistent and steered away from it in situations where it could have been critical.  We started discussing communication most and when we met with the doctor again, he gave us a few tools to start using.  Almost immediately, we saw a change in Caleb.  His capacity to learn was so much higher than what I thought it was and he was picking up the things we enforced, consistently, really well.  That consistency part is the tough thing, however.  We decided we wanted to continue working  with this doctor and we hired on one of his therapists to do Caleb's ABA, and to do it consistently.  She started coming last week and we plan to have her come every morning if possible.  In just the three days that she's worked with Caleb, I've been blown away by the progress he's made.  He now says "Bah" for binky and "Dah" for duck!!! He makes a sound for things that he wants instead of just signing "eat" all of the time.  He makes choices for different types of food that he wants by reaching (usually for K.ix, he always wants Ki.x) and he proactively requests food (with his sound and sign) rather than just us prompting him!  He also learned how to stick out his tongue on command and he is now mimicking us when we do it, something he had never done before! He also learned how to "cover his eyes" with his hands when I ask him, and he plays peek-a-book like that now! I don't think I could use enough exclamation points to express this.  It's astonishing what we take for granted, myself included, with our kids.  When Grace began mimicking my actions, like clapping or sticking out her tongue, I moved right on to the next "milestone" she was supposed to reach.  If there is any silver lining in this, it's the true understanding of how amazing life really is- the capacity that each of us has, the abilities.  Comprehension, just mere comprehension, is a true gift.  I've been able to see these gifts in a whole new light because of my little man. I celebrate his accomplishments, his victories, with such fierce admiration and gratitude; it's an emotion I never would have known without him.  He's truly inspiring.

The last three months - a quick glimpse.  Remember, don't blink!

Mother's Day brunch out on the town

Such a happy, happy dude!

Little princess

New water table - Mommy's Mother's Day gift! :)

With his best friend- the Big Bear

Silly man

Gracie helping with his hat

Afternoon tea with Nana and Mama

Baseball game!

We bought a castle and slide to put in our loft- the nanny puts blankets over the top to make a cool fort and they bring glow toys in to play!

Typical scene- Gracie dancing around and Caleb on a mission :)

"Watch Caleb, just throw your leg up here and start to pull yourself up onto the back of the couch and you get to hear Mommy yelp in fear!"

One of my favorite tools- Caleb's honey bear cup.  It comes with a soft straw and an adapter top to help teach him not to chew on the straw. He loved this thing and it was the reason he learned to use a straw so well!

And it motivated him to pull up onto the kitchen counter- pretty impressive little man!

summer baby

scary baby! ;)

The nanny brings her dog to work sometimes and the kids LOVE it!

And they love each other (mostly)... ;)

Feeding Caleb (likely an old cheeri.o off of the floor...)

Grace is definitely turning into a toddler- she's got the attitude and everything

They rock it

Have your people call my people...

We'll do lunch

Their favorite spot :)


Gracie is doing awesome with the spoon and only gets about half of the bowl of yogurt on her face now!

How old are you? ...Not for long!
This happens. Often.

As does this

Doesn't he look like a little surfer dude?

Look at that pose for the camera! NICE!

Caleb's new walker in the background

Couldn't resist

Taking their nanny puppy for a walk/ride


Obsessed with that baby doll.  It has to sit at the table with us and eat dinner...

I know, I'm surprised I allow such shenanigans as well, buddy.

Walking along the railing!

She's getting pretty good at making circles :)

Caleb's first time actually coloring and not just eating the crayon (he did a little of that, too) with his new therapist!

Tuesday, July 23, 2013

Finding Our Footing **Updated**

I had a whole post written out, way too long.  I added 48 pictures even (catching you all up from my iPhone upload that finally occurred after way too many months).  And then I hit publish and only half of it saved, without me realizing.  HALF! The entire bottom half about how I'm starting individual counseling in addition to our couples counseling (read on), it's gone.  My entire resolution about how it feels so necessary that I blog to document the details (for doctors, for family, for myself, for my kids), but also so that I can capture the reality of this, to maybe help someone else. I've searched all over for stories like ours, and it gives me such relief to find someone who's been in a similar boat, who's travelled this road before.  I am inspired, and I think our story can inspire day.

In any case- it's gone now, the entire bottom half.  So if this seems incomplete, it's because I hate blogger and it lost my deepest emotions somewhere into the interwebs, never to be found again. Ok, overly dramatic. But still, I'm livid.  And now, the half-post:

I'm feeling less like attempting any sort of poetic description of where I am, where we are as a family right now.  I'm feeling a lot more like I just need to document these days.  One day I'll look back and be glad to have all of the information that I housed here and in our family blog.  One day I'll be disappointed that I didn't really capture the last several months- months full of so many twists and so little predictability. I really should have been jotting down a thing or two.

What I do have is a notebook filled with the scribblings of our amazing nanny- every diaper, every meal, every nap, every fever. Thank goodness for that! I also have sheets of "therapy logs"- the cutest pieces of paper that my amazing husband designed, complete with a picture of Caleb on the top surrounded by clip art of workout equipment. Our therapists jot down important notes on these, as do the nanny and our respite provider. 

It takes some serious organization, all of this. I believe most of you know my serious inadequacy in the organization realm. I so wish I could be one of those women with the meticulously thought out family calendar, the weekly meal plan jotted down by Sunday afternoon, the kid's outfits planned and placed before the very last minute frenzy of missing shoes or forgotten sippy cups holds us back from making it to the doctor's appointment in time, requiring a reschedule or an entire afternoon of sitting in a waiting room while the doctor has to "fit us in". I so wish I was a bit different in this arena.

Instead, I'm barely getting by with last minute texts to the therapists to let them know that Caleb has an appointment that morning so PT will have to be rescheduled.  It also takes a whole hell of a lot of teamwork, not just between the therapists, myself, our doctors, all of our caregivers, including my family, our nanny, our respite provider, and our friends.  It also requires incredible teamwork between my husband and I.  Keeping our lives organized is a multi-person job.  Keeping our lives happy, now that seriously takes effort.  We could get so lost in the confusion, the questions, the doubt, the denial, the monotony, the struggles, and the schedules that we completely forget to remember the life that resides in all of that. 

And this is why B and I have begun marriage counseling.  This, and the incessant reminders that parents of children with Autism have about an 85% divorce rate, according to some.  Oh, and parents of kids with special needs have about an 80% divorce rate according to some.  And parents of multiples also have an increased divorce rate too, according to some. 

According to us, it all takes work. A whole lot of work.  B and I grieve very differently.  I need to express it, I need to talk about it. I absolutely need to look at the worst case scenario, plan for it, expect it, absorb it, marinate in it, and then hope to God that it doesn't happen.  B, well, B needs to take his mind off of it. He needs to see hope in every scenario. He needs to live in this moment.  We both need to talk about it, but in very different ways.  So having our needs met by each other in that facet can be challenging.  We also have to remember who we are, who we were before the words Cerebral Palsy came into our lives. Before the formal diagnosis of Autism spun us around.  Before kids in general turned us into new people, incredibly new people.

**Thank you Stacie and Meim for your comments before I realized that half of my post was missing- You two are such amazing women, I can't even begin to share how important your support has been for me.  I wish you could see the last half...and those pictures. Ok here- I can at least make up for the lost pictures! Boo on Blogger!!!***

Playroom of our old house...aww!

She loved sitting in that box!

Heading to Nana and Papa's for Christmas dinner party (the kids are actually still rear facing, we had to put him forward facing for a bit because of some issues with our seat...but I'm getting close to pulling the plug on the rear facing, we'll see)

Dozer Doggy!

Last days in the old playroom

Mommy and Daddy went to Vegas for a weekend away! Thanks Nana and Papa!

Drunk in Vegas with the kids back home? How about some chicken noodle soup and deviled eggs at 1am...sounds about right.

The view from our Vegas bathtub! :)

Our temporary house while we searched for a new home

He loved the big window to the outside!

Caleb being tackled by the big bear in the background cracks me up...

Experimenting with new hair styles for the boo bear. She rips all of the hair ties out anyway, I don't know why I bother.

pink cow?

Love this! This has been my background on my phone for months!

Pillow party! Best friend had a yard sale and was selling a bunch of her was the BEST!

First hair cut!!!

What are you doing back there??

Looking on with fear. We are growing her hair out, hot mess of bangs and all.

Mommy turned 30 and needed some wine (April 2013)

Mother's Day- Grace and I took Nana to Afternoon Tea at a nice resort in town. It was so cute! Three generations of ladies :)

Sick little dude :(

Gotta love those one-on-one shopping trips from time to time

Baby pool by the big pool in our new yard!

The only picture I got on our recent staycation...Sesame Street was an attempt to get little lady to cuddle and let me stay in bed.  Failed.