See Christian and Lola's ISR video!

Sunday, May 29, 2011

It's His Song.


Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise

Black bird singing in the dead of night
Take these sunken eyes and learn to see
All your life
you were only waiting for this moment to be free
Blackbird fly, Blackbird fly
Into the light of the dark black night.

Blackbird fly, Blackbird fly
Into the light of the dark black night.

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise,
You were only waiting for this moment to arise,
You were only waiting for this moment to arise

Blackbird
-The Beatles

And in case you were wondering...



...that's why I did it.
(It's his song.)
Thursday, May 26, 2011

Go! Go! Gadget!

If you know us, you know we're always experimenting with gadgets when it comes to Christian. So back at the end of last year when we consulted with our orthotics doctor about new braces, he mentioned trial studies he was running on a new gadget for kids like Christian. It's called the Prizm Sock and it's been used on stroke patients to treat pain and tone issues without medication for a while. He thought it might be useful on little ones with tone issues.

He had me at without medication.

So he finally got a sample for Christian. It's a sock that is connected to two "buttons" that output electrical stimulation to the muscles. We apply special lotion as a conductor of the electricity and then we put the sock on, alternating legs every day. Then he gets the stimulation for eight straight hours.

After a few days I was wondering what exactly Christian was feeling. So I tried it myself over my hand and arm. I didn't feel anything so I thought maybe it wasn't working. Then the next day I tried it again with more of the special lotion and it felt like snakes were running through my arm. It definitely does something!

This is what it looks like:

After a week I can definitely tell that it has helped some with his tone. He definitely has more relaxed legs and we can bend them a lot easier. His PT said his spine is a lot more relaxed, as well. One of the benefits is that with a release of tension in one area of the body, other areas can thrive. It also improves general circulation in the legs, which is so important for kids like Christian that don't move their legs a whole lot.

Another gadget that just came today is from our awesome vision therapist. She always brings the BEST toys.

Take a look a what it does...

video

And it tilts! This is so essential for Christian. You can have the best toy in the world but if it lays flat, it's not gonna work for Mr. Christian. It's also super sensitive. The slightest touch gets a response from the toy.


Just because my daughter is so stinkin' cute, I had to share what happens when Lola gets a hold of her own gadget (Mommy's i touch). She just started doing this chanting but then gets distracted by the gadget.


video

I think she has our family's war cry down: "GO! GO! GO! GO!"
Monday, May 23, 2011

VNS Update

Last Wednesday, we met with a doctor who knows a lot about VNS implants. Probably more than anyone in our whole state. I like him because he walks around with a button pinned to his lab coat that looks like this:

View Image

We found out that getting a VNS implant is actually an outpatient procedure and that is really good news. The only real side effect is risk of infection with it being a surgical procedure. There has been some concern from Christian's local neurologist about him being so young. But the VNS doctor assured me the procedure has been done many times in small children, even in children as young as six months old.

I asked him how we get the ball rolling, he told me I had to say I want to do it. So I said I want to do it. And that was that. They had to check on insurance stuff and which surgeon was covered and which hospital we would go to for the procedure. I thought for sure it would take a week, maybe even two. But, guess what...I got a call the next day with an appointment for a surgical consult. Efficiency is great thing.

Next up...surgical consult in June.
Thursday, May 19, 2011

Where He Belongs

I am suffering from a little information overload right now. It plays over and over in my head so much so that I feel like I've told everyone about the recent goings on until someone asks, "So how did that appointment go?" And then I think - I have to talk about it again? I feel like I've been talking about it all day! When the reality is that it's just on repeat mode over and over in my brain.

So I'm going to talk about it again. (kind of).

We went preschool shopping again yesterday. This was the second of two special needs classrooms we were to tour.

Preschool Option 1:

We walked to school. It's a block away. It's also the school Gabe went to. It was cool that morning and Christian was coming off of a rough night. So Christian definitely wasn't in the mood for preschool shopping.

We were guided into what was the definition of a preschool classroom. It was bright and noisy, there were small tables which held centers of arts and crafts, finger painting, preschool activities. And there were a lot of kids running around, being noisy preschoolers. The classroom is integrated with normal children and special needs children, however, I didn't see many kids with special needs. And if they were there, they were underlying because, with the exception of one child, all of the kids were ambulatory.

I met some of the teachers and helpers and saw some of the activities they were doing. I met the physical therapist and asked questions, but I left feeling like it might not be right for Christian right now. I get the whole argument that integrating the kids allows for more influence on each other and the benefits that come from that but I just don't think that's where Christian at this stage. I mean to benefit from social interaction with a bunch of other kids his age. Honestly, I don't think he cares much for noisy children right now. Maybe someday, but not today. Besides, he has one and her name is Lola and that's about all he can handle.

That being said, I was trying to keep an open mind. I really didn't have anything to compare it to anyway. I mean except for my fantasy special needs school, which is basically a cross between the NAPA center and a preschool, which may be why, I thought, I might have some unreasonable expectations.

Preschool Option 2:

This school is a little further away and the classroom I observed isn't actually a preschool classroom. It's  really a classroom for special needs children of all ages who have severe impairments.

All of the kids are different ages and none of them are young like Christian. When I observed the classroom they were all outside. There were children with helmets on (usually for either cranial abnormalities or for kids who have drop seizures), there were kids with various disabilities, and I have to admit...I was scared. I'm not even going to apologize for being scared. The realization that this is where your kid belongs is scary.

The classroom wasn't loud, it was quiet. The main teacher came right over and engaged us immediately. She ran back and forth around the room trying to find a toy Christian might like. I was a little quick to judge her at first with her nose ring and heavy east coast accent. And nothing against either, it's just not what you typically see when you think of a teacher in southern Arizona. I soon learned she was the director of The Blake Foundation in Rhode Island for three years and worked for the Arizona School for the Deaf and Blind for years.

She explained that sometimes some of the students have a hard time sleeping (um, Christian!) and so they have areas where the kids can sleep if they need to. There were therapy balls and standers and wheelchairs all parked nice and neat like a little wheelchair parking lot. She told me about touch screen computers they use with the kids to get them engaged and learning. There were light boxes and beads (um, Christian again!) and a special needs adapted tricycle like the one we used at Euro-Peds.

We still haven't made the final decision but I'm pretty sure Preschool Option #2 has what Christian needs at this moment. And if we feel like he's ready for the other integrated preschool class next year, we can move to that one. But I'm not going to force the situation just to make myself feel good. It's about where Christian belongs and what is going to be the very best for him and where he is right now.

Finding out where we belong - where Christian belongs - is a lot like this whole journey. Where did he belong? I know I didn't feel like he belonged in the first classroom. And when I got to the second classroom I was scared that he did belong there. But, as I said, there was a realization that he did, in deed, belong there. You learn, you accept, and then the choice is pretty clear.

The second classroom is Christian's world. And it's our not-so-new world. It's where he belongs. And I'm not scared anymore.

There was another important appointment regarding the VNS implant and I'll share about that next time.

But I ain't skeerd of that either.
Tuesday, May 17, 2011

Kindness Counts: Spreading the Message




This week's post in the Kindness Counts series comes from Jenny, Cici's Mom!

It is so beautiful, so moving, and sums up exactly why I love Ben's Bells so much! It brings people together, spreading kindness and beauty. Speaking of beauty...check out the beautiful pictures of the Ben's Bells distribution in Denver last weekend!



Monday, May 16, 2011

Holding Christian

Christian is a snuggle baby. He's a big snuggler. Just call him Mr. Snuggleman.

He likes to be held. It's the cure to about 95% of whatever might be ailing him.

Sore tummy? Hold me!

Tired of PT? Hold me!

Don't want to go to bed? Hold me!

Uncomfortable? Hungry? Tired? In pain? Hold me! Hold me! Hold me!

At times it has come to the point where Christian has become inconsolable - crying, whining, and carrying on - all day unless he is in someone's arms. This can be a little troublesome when you have a 16 month old swinging from the rafters and climbing everything in sight and, oh, not to mention, other things to get done during the day.

But the other day, I flipped the switch on my thinking and gained a new perspective. We don't receive hugs and kisses from Christian (willingly) like we would a normal toddler. He doesn't cling to our leg or wrap his arms around our necks and tell us he loves us. And in all truth this is an extremely difficult part of this journey.

However, something happens to Christian when he is held in just the right way and anyone who's held him in just the right way knows it. His being held is how he loves us. And if it's in just the right way he gets really quiet and breaths very deeply, sometimes even taking a big, deep, cleansing exhale. He releases all tension and sinks into your body. His arms get loose, his back gets loose, and he drapes himself over you. Sometimes, if he is feeling up to it, he'll find your arm with his hand. This means you have been successful. This means he loves you.

And, believe me, he knows, I know, and you will know when you're NOT successful.

Christian knows how to do what he knows how to do. A lot of children like Christian may not be able to relax into being held or may not want to be held or even touched. So what a privilege and blessing it is that being held just happens to be Christian's favorite thing! And if this is how he can show he loves us, or even just likes us a little, then I'll take it.

Ever since my switch was flipped, I've been excited to hold him. I've been excited to do his version of clinging to my leg and throwing his arms around my neck. It's how he loves us.
Friday, May 13, 2011

Be Joyful Always

I was reading another blog the other day and it said that there was joy in every place. You just have to look and you'll find it.

I was surprised by reading that and was, again, surprised by my own surprise. I'm all about finding joy! Well, I was, until I got too busy to look for it in the last few months. That coupled with an underlying frustration and sadness over Christian's constant discontent and puzzle of symptoms left this Momma a little joy-less. There were plenty of joyful moments and I was there for every one of them, I just didn't stop to see it. Hence, my surprise at hearing you could find it everywhere.

So I gave myself a project the other day. I was going to find it. And by "it" I mean joy.

I didn't have to look very far...


And, why, yes, that is my daughter standing in her high chair with wild abandon. Nobody got hurt. But she wanted to make sure Christian was okay. [Joy]


Christian hadn't been in his stander for a while because he just wouldn't tolerate anything but laying on his tummy. But his PT came over and adjusted it by 2 inches! He's such a tall kid! And the messy house, not so joyful. The kids that make the mess - joyful. [Joy]


Lola got a hold of the wipies and decided to pull half the stack out one by one. When she was caught, she grabbed her pile and ran like a mad woman. She then preceded to hoard them in her princess castle. [Joy]


But she's just too cute to find anything but joy here. If you look behind her next to Piglet, you'll see a pile of fresh wipies. [Joy]


And my big kid, Gabe, just joined Devil Pups and had his first day on Saturday. He did great! I love seeing him gain self confidence the right way - by accomplishing, making goals, and exceeding them. It's a different kind of self confidence that I like seeing on my son's face. [Joy]

So really it's about being in the moment. Being present. I found the infamous joy and it wasn't all that hard to scope out. It was in the stander, it was in the princess castle, and it was all over my son's face.

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18
Monday, May 9, 2011

Kindness Counts: Those who have been there


This week's Kindness Counts post comes from Aviana's mom, Jen.

After struggling with infertility, Jen and her husband chose international adoption as a way to complete their family. Beautiful Aviana then suffered a severe brain injury after being his by a car. As a diligent and tireless Mommy, Jen chronicles life with Aviana (and Rainey!) at The Long and Winding Road.

Last week's post can be found at Our Life...As Is.

Ashley, who lost her baby boy to SIDS opens up about the Kindness of a Stranger.

Happy Mother's Day!

I have wanted to be a mother for as far back as I can remember. When I was little I would correct my playmates' form in how they were holding their baby dolls. Two characteristics sprouting at an early age - the need to be right, and the need to mother.

I would write down the names of each and every child I had - first and middle names for all - all six of them but who's counting?

After "growing up" and considering the cost of having such a large family (and when I reference cost, I not only mean monetary cost, but the cost of sanity, as well), I was blessed enough to have half of what I had originally intended.

Yes, I have three very good reasons to celebrate Mother's Day today. Sometimes it feels like six. But I'm pleased that there is noise and chaos in the house. And doubly pleased when the clouds part and the heavens shine down and...gasp!...both of the babies are asleep at the same time!

This is the second Mother's Day in a row where I've had this nagging feeling of sadness and empathy for others on this day. It's a really tough day for a lot of people.

I think about the women who long to be mothers, who wish they could fully celebrate this day with their own children. I think about the pain they feel.

I also think about the moms struggling with making things work for their children who live in a world that doesn't work for them. I think about the mom standing close to her baby's bedside hoping for a discharge.

I think about women who have lost their children. Mothers who have lost their sons in war overseas. Mothers who have lost their babies to a different kind of battle. All soldiers, none the less.

And then I am incredibly grateful and terribly humbled by the amount of love and noise and chaos there is around every corner in this here house of ours. I am humbled by the opportunity to be responsible for the life of these little ones I call mine.

Happy Mother's Day.
Friday, May 6, 2011

Quality of Life

Quality of life.

Ew. I used to hate that phrase. It still doesn't sit right with me and when it comes out of my mouth, I'm uncomfortable with it. Like it's not my son I'm talking about.

I have such a problem with it because I feel like it's something you say about someone when they're dying. I don't know where I got that from but that's how I feel when I say it. Like as in, "We're keeping her comfortable until she passes."

But I have to get comfortable with that phrase because Christian's life centers so much around the concept of how we make his life the best it can be. In other words...his quality of life.

We are at a turning point, folks. We're considering whether the Keto diet is helping or hurting or doing nothing. But the fact is Christian is not a happy guy these days and hasn't been for a few months now. It's not a pain issue because I know his pain cry. It's a constant state of discontent.

Of course - you all know me - I've got irons in the fire, things on the back burner, plan B's, and plan C's.

One of my "irons in the fire" is the VNS. We had the opportunity to meet Mason and his mommy, Sarah at the park. Mason is a beautiful little boy who has lissencephaly, which, among other things, causes seizures. Mason received a VNS implant last year and has done really well with it. He is older than Christian, but still considered young for a VNS implant so I wanted to talk to a real live mommy who knows the deal. And the bonus was that we got to meet long eye lashed Mr. Mason!

Now, I know we've been here before...Something new! Something new! But if we've learned anything, we've learned that a miracle drug/therapy/massage/diet for one may not be the miracle for Christian. My intention in meeting Sarah and Mason was, one - because I love meeting other local moms with special kiddos, and two - because I was wondering about the technical details. What's the procedure like? How long is recovery? Were there any complications?

I'm sure there are those out there wondering if we are jumping the gun on this. They will wonder why we keep going, why we keep experimenting. Answers don't come easy when it comes to Christian. But one easy answer, without a doubt, is that we will do anything at this point to give him a good life...a good quality of life.

No, I'm not in denial. And a very wise special needs mommy once said - I'm not looking to make my child normal. I'm looking to make my child the best brain injured child possible!  I'm not sure that's verbatim but I agree with every word of it. (And that special momma knows who she is.)  ;-)

So what do you do to ensure the best quality of life, to ensure the best brain injured child possible?
Ahhh, that answer is an easy one...everthing.

And when do you stop?

Another easy one...never.
Sunday, May 1, 2011

Easter Is Today, Okay?

Guess what last week was...Easter! And guess who's a week late posting about our Easter Sunday...THIS GIRL! So let's all pretend it's Easter Sunday just for a second.

Growing up, Easter was always a fun day for my sister and I. We would wake up in the morning to see what the Easter bunny left us. The "Easter Bunny" was always particularly creative with our baskets, which were never really baskets at all. One year we found our plastic green grass and chocolate eggs inside of Easter purses. One year we found our goodies in new upside down umbrellas, opened on the floor, cradling chocolates and more plastic grass. One year it was a wicker Easter laundry basket that housed our chocolates. And all of those really innovative ideas from the "Easter Bunny" carried over and I have adopted it as a favorite things type of event for my family. Even Daddy gets an Easter basket.

So looking back on last year's Easter, I strove to be creative in my delivery in my job as Easter Bunny. But I have to admit there was a sadness as I wandered through Target to find something for Christian. It was his first Easter after the accident and I was standing in the infant isle thinking...another sensory toy for Christian? Isn't there anything else? And I was kind of sad about it.

But this year, I went from What do I do? to Let's do this! The ideas came flooding and this Mama did the Easter Bunny quite proud, if I do say so myself.

So this is Christian's basket. And while I wasn't innovative enough to find an great alternative to a basket, I settled for a bucket and found some really useful things to put inside.


Christian enjoyed his new Easter bunny and alligator. And both of these, might I add, are sensory toys, too. Christian really likes soft, plush things like the bunny and the alligator is rubbery and filled with a sand like substance he can squeeze.


This is what was in his Easter bucket (ignore the wrinkly bed sheet):
- a blue bunny
- an Elmo dish for food for tasting
- a flashlight bubble maker
 - an electric Thomas the Tank Engine toothbrush
 - the aforementioned sandy alligator
 - a bright red Elmo storybook
 - Sour Warhead Sour Spray for waking up those taste buds.


And, p.s., WHY DIDN'T I THINK ABOUT AN ELECTRIC TOOTHBRUSH SOONER???!!!
All this time I've been brushing his teeth and then using a vibrating toy to stimulate his mouth muscles. Ummm, two birds + one stone = AN ELECTRIC TOOTHBRUSH!

These are all little things that I...em, er....the Easter Bunny left in Christian's Easter bucket. They're little things that double as big things when it comes to Christian.

Did I mention that we died Easter eggs?

Lola took the whole event very seriously.


Christian's hand shot open when it hit the die.


And he made a yellow egg.


Easter fun was had by all.


Good job, Easter Bunny.

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