Christian's Journey

Cinnamon Bread

noreply@blogger.com (ShaunaQ) — Thu, 09 Feb 2012 06:47:00 +0000

We live in our own little world of normal. We have a routine, Christian has therapists that come to the home and upon the foundation that is our home and between the parameters of our day to day, we've created a nest. This nest is safe and our version of normal.

It's not until we leave the nest that we are abruptly notified that we live an entirely different normal than everyone else. People stare, which doesn't bother me because they're just curious. It just reminds me that it isn't a "normal" site to see a three year old (who looks like he's five) in a wheelchair.

What? Your three year old doesn't ride around in a wheelchair?! Walking is for the birds!

Not serious. But that's kind of what it feels like when we leave the nest.

One time we were at a birthday party at a pizza place and I was holding Christian on my lap. An entire family - Dad, Mom, like five kids, maybe a grandfather - stared over at Christian while eating their pizza in slow motion. I wasn't exactly offended by it. I'm not offended or bothered by staring. Because it isn't often that someone is staring in disgust. They're staring out of a lack of understanding. And they want to understand what they're seeing. So they take it in, piece by piece, wondering if he's okay, if we're okay.

I don't take offense to this. I really don't. A part of me feels sorry for them and I want to help them understand. I don't want them to feel bad or sad or confused. I want them to know that he's okay. We're okay.

The family at the pizza place eating pizza in slow motion while staring at Christian? After a few minutes of taking Christian in, the man who I assume was the dad looked at me with urgency and said, "Does he want any cinnamon bread? He can have some! We have plenty! Does he want something to eat? He can have some of ours. Really. He can have some. We have plenty! Take some!"

He practically insisted we take his cinnamon bread. We didn't. I assured him that Christian was okay but I was half afraid he'd bring it over and try to feed it to him! It just goes to show you, they just wanted to understand. And they couldn't. So the only thing they could do to make sense of it all is offer cinnamon bread.

Christian has also made a little nest of his own at school. I cannot explain how pleased I am with his experience in his new classroom. Every morning, it seems everyone is happy to see him. He has a little friend who always greets him right away. His friend saw me walking in to get him and pointed to me. He yelled, "Christian!" as he pointed. I said, "Yes! I'm Christian's mom!"

The fifth graders also spend time in the preschool class and apparently a little girl has taken a liking to spending time with Christian. I don't blame her. I mean how could you not love him. I'm not biased at all.

We are leaving at the same time the fifth graders are taking their lunch. As we're leaving, the fifth grade teacher and his whole class says hi and goodbye. I feel like he belongs. I feel like he's welcome and he has a place. It's part of his nest.

The best part about all of this is that, although we're comfortable where we've built our little nests - at home or at school - it's when we're faced with not so comfortable situations that we have the opportunity to teach. My hope is that Christian inspires understanding and teaches tolerance for those unlike ourselves. Maybe he'll inspire a questioning of what makes us uncomfortable. And instead of responding with negativity, maybe Christian will teach to respond with love, a hi and goodbye.

Or maybe some cinnamon bread.

The Tribe: A Mini Reunion

noreply@blogger.com (ShaunaQ) — Fri, 03 Feb 2012 07:03:00 +0000

Mini Tribe Reunion!

And by "tribe" I mean the Near Drown Tribe. That's what we call ourselves. We have shirts and everything.

These are our babies. Although they don't look very much like babies. They are, in fact, giant babies.

Our boys.

(l-r: Christian, Seth, Santana, Joey)

A few of the tribe members were in Phoenix for therapy and one actually lives there. I live about an hour and half away so we all decided to meet and have a mini-reunion at Rainforest Cafe!

And we were rolling pretty deep with our crew. And I mean that in the most literal sense.

We also made our kids try on hats. Because, rumor has it that's what the crazy tribe members do.

Santana

Joey

They are so over this.

"No, really, Mom. I'm over this."

It was so...rejuvenating. Not rejuvenating like a facial or a massage. It was rejuvenating being surrounded by everyone and their kids. We rolled right on into that restaurant and felt like regular moms with regular kids. We were just moms with our boys. It's what normal feels like.

We also talked about how we missed our absent tribe members and can't wait to see them again soon.

This tribe of women is amazing and they are such a gift to me and they don't even know it.

Getting Messy

noreply@blogger.com (ShaunaQ) — Mon, 30 Jan 2012 06:51:00 +0000

Things got a little messy around here this week. Christian's new PT had a new idea to facilitate pre-rolling...finger painting!

So we tried it on the left side...

...and, of course, little sister had to try it, too...

...and we tried it on the right...

...and, honestly, he wasn't too psyched about the whole side lying thing.

So we tried it sitting up.

And I think Christian was a little more interested in painting his masterpiece in this position.

And Lola? Well...

...this is about the point I told her not to eat the paint for the seventh time.

She was covered! And needed a bath immediately following the completion of her masterpieces.

The Masterpieces:

I love them all! They are definitely promised a spot on the "art wall" I started when Christian started school.

I got a little messy, too...

I found a really simple recipe for Sugar Donut Muffins. The actual muffin came out a little bland so what's a Momma to do? Got a syringe laying around? I know I have a few.

Another good use for a syringe?

Um...maybe fill it with some Nutella. Just sayin'. Or strawberry jelly. Whatever. And, well, you can see how the rest of the story went.

Insanity.

I made them Saturday and they were so good I was forced to make them again tonight.

And this stinker got a hair cut today. But after an hour of crying and whining tonight, he finally fell asleep. So, shhhhhh...we won't wake him.

Wearing Yellow

noreply@blogger.com (ShaunaQ) — Thu, 26 Jan 2012 07:13:00 +0000

The theme of the week is construction.

Which reminds me...I have to find a yellow shirt for Christian because tomorrow is "wear yellow" day at preschool.

I seriously just got up to go look for one before I forget and remember tomorrow during the morning rush five minutes before we have to be at school.

I found one. It's a Spongebob muscle tee. Arizona is warm but not muscle tee warm right now so we'll put a long sleeve shirt underneath to rock that muscle tee out tomorrow.

These are the kinds of decisions I'm making for Christian this week. We're not talking about hips, surgeries, sicknesses, or medications. We're talking about construction week and sporting yellow.

It feels pretty damn good, ladies and gentlemen.

It was Christian's first day of real preschool. But didn't he already start school? -you ask. Yes. There are two different classrooms and I wrote about the differences here.

We walked through the door of Christian's new classroom and his teacher was really excited for him. She greeted him right away. Another little boy came up to Christian, came close to his face and told him his name, then ran away to play. It was time for library and everyone lined up. Christian included.

He got to ride a tractor with his teacher with it being construction week and all. And he made it through the day, happily.

He likes school. Scratch that. He loves school.

How can I tell? His OT at school just told me the first time she ever heard him cry was yesterday when she accidentally tripped over his foot and scared him.

He cries and whines all the time at home. And it was the first time she had ever heard him cry. Yeah, pretty sure he loves school.

There was a time where what I wanted was for Christian to come back to me. And while wishing and praying for that boy to surface, I found another little boy along the way. I wrote about my two sons here.

While I still identify with those feeling and I still relate with those who've lost children, I am enjoying, celebrating, and embracing my on.

This one boy that I've found is quite the little man. He holds mysteries and he always keeps us wondering how to get to them. He knows his Momma. He knows his home. He knows what he likes and he is very adamant about what he doesn't like.

Sometimes I feel guilty for underestimating him. I guess underestimating isn't the right word. More like not taking into consideration that Christian might want to be around other three year olds. What if he doesn't mind not being able to run with them. Maybe he's just happy watching them and listening to them, absorbing the crazy energy and chaos that is being three.

Maybe he has things to say. How could I have not considered that? I just assumed he didn't understand. Maybe he understands everything, he just has a hard time communicating it.

He is full of mysteries yet to be discovered but I've found him, my boy. He was there all along. And as time goes by, more and more is uncovered and he's emerging as the little boy that God needs him to be.

We found him. And he's wearing yellow tomorrow.

Last Day

noreply@blogger.com (ShaunaQ) — Fri, 20 Jan 2012 07:36:00 +0000

Judging by two posts ago (Walking Wounded), one might think we're in a slump or a downswing. Not so at all. We're actually doing great!

And, Christian? Well, he's a rockstar, ya know.

In fact, we had another IEP meeting, which is actually just an addendum to the IEP, not creating an entirely new IEP, and by the way, this is our third one this year. So if you're a parent that has to deal with IEP's, don't ever feel like you're signing away everything until the next year or like you can never, ever change it. Because you can.

During the meeting we met with Christian's teachers and therapists and it was the consensus that Christian is ready to move to the regular special needs preschool class full time. He started the year in the CITE program, which is for children with more needs. It's a quieter (sometimes) environment with less children and more aides. So we thought he would do better starting out in that classroom.

In our last addendum meeting we decided it was time for Christian to start spending some time amongst his peers in the regular special need classroom about half hour a day. He would participate in circle time, music, and library. He has adjusted so well to this transition that the team has recommended (and I concur) that Christian is ready to attend the regular preschool program full time.

Furthermore, Christian has met and exceeded some of his goals so they had to be rewritten. Goals for Christian include holding his head up by himself for a certain amount of time, tracking from left to right, looking toward sounds, making and sustaining eye contact, and prone positioning and the amount of time he'll tolerate it. These are just some examples of Christian's goals.

Aside from that, Christian is just really aware of little ones around him. He doesn't retreat or scare when the kids are being noisy or yelling. He is ready. And the preschool class just got a second teacher so it basically got cut in half. Bonus! One point one of the teachers made is that we should take advantage of the time he has to be surrounded by other kids his age. When he starts regular school, we don't know what class he'll be in. So now that we have the opportunity to allow him to be immersed in all that little kid chatter, noise, and laughter, we should take it!

So today was his last day in his other classroom. I'm grateful for this class because it was a great transition for Christian to get used to attending school, being around other kids, making art projects, and being without his Momma.

He was very well cared for and loved by his previous classroom aids and teachers. Especially Miss Tammy! I overheard her teaching a new aid about Christian and she carefully explained how to hold him, what he liked, what he didn't liked. She was talking about him like I would talk about him. That is the reason I never gave it a second thought leaving Christian at school.

Christian's teacher emailed me this picture. I guess there was something he wanted to look at so he leaned forward on his own. This is kind of new.

Know what else is new? Happy sounds. I thought I might have possibly heard a happy sound the other day. I didn't give it another thought until his teacher and therapists at school said he made a few happy sounds. This makes me want to make happy sounds.

And more new stuff...we have a new physical therapist that started with us a few weeks ago and she is awesome! She is full of ideas and really enthusiastic about working with Christian. We're focusing a lot more on massage and I've seen a huge difference in Christian's level of comfort, especially in the evenings, which is a hard time of day for him. He has, however, become spoiled with all the massaging and holding and pretty much insists on being held all evening or he'll whine and cry until someone picks him up. Time to illicit some new snugglers!

Enter Big Bro.

Be still my heart.

And did I mention Christian is doing great? He has never been more alert, he's grabbing and reaching while sitting when there are toys on his tray, he started activating a talker, and there has been no illness or throwing up in weeks! On top of that, he's on 100% blends and doing awesome!

I couldn't be happier right now.

Talking Footprints

noreply@blogger.com (ShaunaQ) — Tue, 17 Jan 2012 08:31:00 +0000

Some may think Christian can't communicate or that he communicates very little. Actually, Christian is very good at communicating when he's mad, upset, pissed, hurt, aggrivated, content, comfortable, uncomfortable, and happy as far as Christian shows happiness. He has different cries and sounds that have different degrees of irritability. Make no mistake, if he's mad, you'll know about it.

We have taken the next step and decided to experiment with talkers. A talker is a device that we can program that "talks" for the child.

When considering a talker, I had doubts. Like, would he respond? What if he didn't respond? Does that mean he has nothing to say? What if he has a lot to say but his body won't allow him to communicate?

So I went into this talker business just to try it out and give him the opportunity. I didn't even know where to start. Our OT brought us a few switch activated toys and a talker with two buttons and placeholders for pictures on those buttons so we could help him see each button and make choices between the two buttons.

I didn't put much weight into all of it, after all, we were just trying things out. I didn't stand by watching his every move. I really didn't even know what to do with it and didn't mess with it for the first two weeks we had it. This may not seem very optimistic but you learn to be gaurded when dealing with these kinds of devices. I've learned over and over that what may work for one kid, might not be for Christian. And that's okay. So we were just playing around with the idea of a talker.

Little did I know, Christian would catch on quickly and show us that maybe he does have something to say.

I won't go into the switch activated toys quite yet. I'm saving that for another post. I decided to try out the talker. The talker has two big square buttons, one on the left and one on the right. Each button is voice recordable. At first I recorded the right side with the Happy Birthday song because Christian seems to really like that song. On the left side I recorded, "No, Lola!"

Christian seemed to catch on, whether by accident or on purpose, and kept hitting the Happy Birthday song. So I took his lead and forged on to the next step. I recorded "Ma-ma" on the right button and taped a picture of me and on the left button I recorded, "Dad-dy," and taped a picture of Manny. Then, hand over hand, I helped Christian push each button over and over on each side so he could see what each button did. My goal was to leave little footprints on his brain that would lead to cause and effect and him learning to use the talker to communicate. But only if he was up for it.

We played around with this option and then I kind of walked away for something and heard it.

"Ma-ma."

He did it on his own. Whether by accident or on purpose...he did it. Footprints.

Then he did it for his OT. He hit the Ma-ma button on the right when I walked away to do laundrey.

So what's a Mama to do?! Well, every time he hits the Ma-ma button, I run back to him so he sees that when he hits that button, Mama comes runnin'.

Now, I have a ton of annoying video I want to share. I'm very proud of these videos. But I should let you know that it is all very subtle. Some of his movement might even look accidental. You have to listen very carefully (not to me, I'm loud and annoying), you have to watch very carefully (sorry, it's dark in my house), and you have to ignore the mess that is my house. Mmmkay?

Let's begin.

This video is when Christian kept hitting the Daddy button. It's an example of how we are trying to teach him what each button does.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Here is more video teaching him what the buttons do. In each video watch him use his right and his left crossing over to each button, not just hitting the closest button to each corresponding hand.

Make a video - it's fun, easy and free!
www.onetruemedia.com

These videos are longer. Hang in there. These are the videos I've caught where when I leave, he seeks out the Mama button.

Make a video - it's fun, easy and free!
www.onetruemedia.com

After a while I thought it might be a little mean to leave the Daddy button active if Daddy was at work and couldn't come to him if he called. So I changed it to "Toys." Then I put some toys on his tray. This ended up being my favorite reaction and video.

Make a video - it's fun, easy and free!
www.onetruemedia.com

This one happened almost instantaneously. I showed him what the button did. I showed him his toys. I put them down in front of him. And by the time I could pick up the camera, he had already knocked over his toys once and hit the toys button.

So there you have it. It's a start. I have to say that once I saw Christian purposely using the buttons, I felt bad taking them away from him like it was taking away his voice or something.

Even if every single move was an accident (although, knowing Christian, I believe most of that was intentional), the talker is a very good tool to teach cause and effect. And it seems to motivate Christian to reach and move his arms, which has been a challenge in the seated position in the past. The alternative would be that he just sits there and does nothing, which he has also done in the past. But not with the talker. So we'll see where this goes.

We're leaving footprints, baby.

The walking wounded.

noreply@blogger.com (ShaunaQ) — Thu, 12 Jan 2012 07:26:00 +0000

In first aid and triage, the walking wounded are injured persons who are of a relatively low priority. These patients are conscious and breathing and usually have only relatively minor injuries; thus they are capable of walking. Depending on the resources available, and the abilities of the injured persons, these people may sometimes be used to assist treatment of more seriously injured patients, or assist with other tasks. - Wikipedia

I was reading a review about a new movie coming out about a family grieving over loosing their husband and father to 9/11. The review referred to the boy in the story as the Walking Wounded.

Walking wounded.

Such a perfectly simple description of those who have endured loss, pain, and grief.

So I googled it.

...conscious and breathing...capable of walking...

I write a lot about intentionally seeking out joy and happiness and it really being a choice in life. In our lives we've made a conscious effort to do this for our sanity and the happiness and survival of our family.

When the accident first happened with Christian, I mistakenly thought things would gradually just get better and better. I had sad days, but I was certain that eventually they'd go away.

I'd have rough days, very emotional weeks, and then I'd be over it. Happy again. Rough days were behind me and I was forward, full steam ahead.

Then out of nowhere, I was sad again. It would be set off by a picture I had never seen of Christian as a baby, happy and wide eyed. It could be for no reason at all and I was right back where I was in the beginning - broken hearted and just...well, broken.

It's called grief. And if I take myself and my emotions out of the equation, it is quite fascinating how this little bastard works.

It weaves itself in and out of our lives, piercing everything it touches. It makes us feel awful, it makes us feel validated, it makes us feel cleansed. It wraps itself around our old family photos, and sits heavy on our hearts when it is quiet and we're alone.

This kind of grieving - the grieving of a special needs parent - it comes in what I can only describe as levels.

When we left the hospital, as I said, I thought things would just continue to improve and improve and improve. Maybe Christian would be slightly delayed. But he'd catch up, right?

Levels.

I've learned from other parents. I've seen their grief. And it, too, is in levels. Half way between life and death.

...He's not smiling...She doesn't even move...He has a trache...He has pneumonia and he's in the hospital again...surgery? again?...He won't stop crying...She won't sleep...She throws fits...He has neurostorms...She has seizures...medications aren't working...We have to meet with the palliative care team...we have to keep him comfortable until the end...He doesn't like to be touched...He can't see...She doesn't talk, just screams...Does he even know who I am?...God, just let him make it through the night...Why are other children doing better than my child?...We need miracles...

Levels of grief.

Level 1 - We think there may be seizures. Level 2 - Medications aren't working. Level 3 - Seizures are intractable.

Level 1 - He probably won't walk. Level 2 - Not enough weight baring. Level 3 - Bone quality is deteriorating. Level 4 - Hairline fractures. Level 5 - Dislocated hips. Level 6 - Painful surgery.

Each level is a new found pile of grief to step in.

And they come in little droplets or they come in waves. Grief hides in things like cartoon characters you're child should be obsessed with. It's waiting in thoughts of grandchildren that will never be. It's all over your spouse's face when he talks about playing catch someday with his son, or his dreams of it, anyway. It's there. And really never, ever goes away.

When I hear the stories of mothers and fathers of children who've passed, I feel their grief. It goes beyond the polite, "I can't even imagine..." Because I can, and I do, and I can feel it. It's a heightened perception of pain that I now possess and part of me is thankful for that. The other part of me wants to give it back.

Luckily, grief doesn't stick around for too long these days. But all too often I meet or hear about families who are just at Level 1. And I'm sad for them and their long journey ahead.

The movie review called the little boy the Walking Wounded. But the most important part was when he said, "...But he is still walking."

We're still walking.

My KIND of day!

noreply@blogger.com (ShaunaQ) — Mon, 09 Jan 2012 07:40:00 +0000

I set my alarm.

We were up well before the sun came up.

Two days ago I found out Ben's Bells was holding a special distribution of bells around town to commemorate the anniversary of the January 8th shooting in Tucson.

I was in.

I've painted them, I've talked about them, I've blogged about them, I've found one and taken it home, but I've never distributed them...until today.

We left the little ones with Daddy and the oldest and I headed out.

So I was saying we woke up before the sun came up.

See? So dark! And cold!

When we arrived, there were tables with maps of Tucson. We chose the Northwest 'cuz that's our hood.

Jeannette Mare is Ben's mom. And she is the reason for all this awesomeness.

We received our two bags of bells and we were ready to go.

But we had to stop for donuts a block away. I mean we just had to. You know, for the little ones and Daddy at home. And we saw this mural to inspire our "belling."

We chose our places pretty strategically. We chose parks that we loved.

We chose landmarks with significance.

Gabe chose this tree. He said it was his favorite tree and he used to climb often.

So he climbed it with the bell carefully tucked in his sweater.

And very carefully, he tied it on his favorite tree.

We were done!

While hanging our last bell, a car drove by. The grown man driving rolled down his window and yelled, "Wooooooh! Ben's Bells!!!" And then he kept on driving.

It felt sneaky but in a good way. I just kept thinking about each bell and who would find it. I thought about how much it might mean to someone like mine means to me. And I was honored to pass it on.

Kindness is a wonderful thing.

P.S. I got a question about the cookies I mentioned two posts ago. Yes, I did make the cookies and they were awesome. I think they'll become my new recipe. You can find the recipe here. They're made with less sugar and less butter so they're healthy, right? They better be, because we devoured the entire batch within twenty-four hours. Yeah, I'm pretty sure they're healthy.

The Verdict: Spine and Hips and Curls

noreply@blogger.com (ShaunaQ) — Thu, 05 Jan 2012 07:42:00 +0000

We visited Christian's orthopedist. It was as expected. Not great. But not the end of the world.

The verdict:

HIPS:

About a year and a half ago, x-rays showed about a 30% slippage on both sides. Now, the doctor estimates his left hip is about 90% out of socket and the right one is about 15%. It makes sense because Christian's left side is his tighter side. Christian was also tighter than usual today and so I think the numbers might be off a little with the left hip maybe being around 80% (maybe not) and the right being more than 15%. The estimates were also done by two different doctors at two different hospitals in two different states so there is that.

SPINE:

If you look in the upper right hand corner by his neck you can see his VNS. Look below that and you can see part of the device where the screen cuts off. Cool!

Christian has about a 45 degree curve to the right. It's at the bottom of his spine so it doesn't threaten any major organs at this point. We're working on stretching that right side out at the hip.

First, I have to say we are blessed with an excellent ortho doctor. He is kind, knowledgeable, and conservative with his recommendations. Having a doctor like him makes it easier to handle news like this and make a plan.

He said regarding Christian's hips, we can let the left hip go ahead and fall out of socket or we can operate and put the hip back in the socket. He said he has had patients do both and has had an equal amount of success and failure with both options. We are going to take another look in three months. If there will be any surgery, it will be on summer break.

As for the spine, at this point the doctor wasn't too concerned about it. If it gets any worse we might have to consider spine straightening surgery, but we're now on alert that we really have to be diligent in stretching and straightening that spine as much as possible. He didn't suggest a brace and actually discouraged its use, but I'm not sold on that. I'm still going to research the option.

We both agree that at this point, unless something is causing pain, we are hesitant to plan any surgeries. We'll reconvene in three months and come up with a better game plan.

And my feelings on the subject...I was fine all day, really. I hyped myself up for an appointment with horrendous results. I don't know what "horrendous results" would be - an arm where a leg should be? I just psyched myself out. The appointment wasn't horrible and the results were nothing I couldn't see on my own or anything I didn't already know.

I still need to process this. I know as my medical mind is put to bed, the mommy mind and heart emerges. Then it's different. Then it stings.

But it's still the same old Christian. It doesn't change who he is right now, but I firmly believe that knowledge is power and knowing is freeing. We now know what we're dealing with and we can move forward.

We'll have some big decisions to make in the future, I'm sure. This is part of Christian's life.

But tonight we decided to focus on the beautiful head of curls he's growing.

This is after bath time. And clearly, before bed time.

He is a precious, angelic, broken little soul.

And we deeply love him so.

Ortho appointment tomorrow...blah.

noreply@blogger.com (ShaunaQ) — Wed, 04 Jan 2012 06:24:00 +0000

I've taken to baking lately. I've always liked to bake because I have a ravenous sweet tooth, but I've started to appreciate the process. There is something cathartic about beating the crap out of cookie dough with a spoon and then ending up with something beautiful and tasty in the end. It's fulfilling.

I got a new recipe for chocolate chip cookies that I was excited to try. But I thought I'd wait until tomorrow. Tomorrow I'll need it. I'll need the measuring, the beating, the tasting. And I'll definitely need the eating.

Tomorrow Christian has his annual orthopedics check up. Blah.

I've avoided this very appointment for as long as possible. Christian's new PT asked for an updated ortho x-ray report and I thought maybe it was time to be responsible and get it done.

Ortho appointments are pretty much the most stressful and potentially upsetting doctor visits of the year. It's not like neurology, which leaves some room for analysis and ambiguity. Neurology boils down to half a guessing game. A likely crap shoot they throw medications at hoping for a winner. Interpretation can range from bleak to hopeful, depending on the neurologist and whether he or she is glass half full.

Ortho is different. It's as black and white as the x-rays hanging from that depressing light box. Yes, we've had a successful appointment in the past, but it wasn't without a little gasping for breath.

This time I predict it will be different. As in the not so good different. The brain does horrible things to the body when it doesn't work properly. There's twisting and turning. It's all eventually very painful and it becomes a race to figure out how to stop the brain's malfunctioning from hurting the delicate little bodies of brain injured little ones.

I've watched Christian have alternating tone. There are weeks when he is relaxed and easy to manipulate. Then there are weeks he is arched up, tight, and hyperextended. So, yes, Christian twists, turns, arches, rotates, and hyperextends. It's how his brain tells his body to move and if it doesn't get better it will hurt him.

What I'm most concerned about are the spine and his mean case of external rotation. This means his legs extend and turn out as he points his toes and it's causing a problem.

The good news is that I'm prepared. I'm not expecting the doctor to tell me there is nothing to worry about. If he tells me that I might be tempted to get a second opinion. I'd bet money that the "S" word will be suggested...Surgery.

So I'm asking for thoughts and prayers of strength for us.

And if you don't hear from me tomorrow after the appointment, I'll probably be baking.

2011 in Review.

noreply@blogger.com (ShaunaQ) — Tue, 03 Jan 2012 07:42:00 +0000

What happened in 2011?

Well, let me tell you...

Wait...what did happen in 2011???

I wanted to play that blog game where I recap every month with the first sentence from every first blog of each month of 2011.

Then I thought - Well, there really isn't that much to report. Maybe I'll just recap in a general summary.

And by 'general summary' I really mean long winded and wordy paragraphs.

Just for kicks I started looking back and, Yowza! A lot happened, to say the least. A lot of good. A lot of triumphs. A lot of happy moments. It was all a blur for a second but I really do want to play the blog game and recap just to show you all how far we've come. (Like I really have to remind you! Okay, maybe I need to remind myself.)

So let's play...

January: The first day of 2011 was like a "non-day."
Thinking back, the first day of 2011 was the perfect preview to the rest of the year. Plans?! Out the window. 2011 definitely taught us about acceptance and going with the flow.

February: Too much too soon?

Right around the beginning of the year we were trying to figure out the ketogenic diet and weaning of medication all at the same time. Sabril was our last medication and Christian weaned off of it beautifully until we hit the last 2mL's. It took forever to wean him off and since then we've decided not to medicate for seizures. For now.

March: I should never have talked crap about that damn cold and flu monster because he beat down our door with furry ready to take us all!
Christian was hit by a really serious respiratory virus. It was actually the most serious illness he has come down with. Luckily, we haven't seen the likes of anything like that since. Thank God.

April: Coming off of a blog about kindness, this blog may not seem very kind.
Trouble with feeding pumps. I'm happy to say we don't use one anymore unless it's for hydration with Pedialite. Now we use syringes. Syringes aren't all together innocent in their trouble making but at least there is no beep...beep...beeping!

May: Guess what last week was...Easter!
I posted late about Easter. But what I was mostly proud of was that finding Easter basket goodies for Christian came so easily. Enter electric Sponge Bob toothbrush!

June: We had preschool meetings #2 and #3 this week.

We toured special needs programs that would be great for Christian to start school in the fall!

July: dum spiro spero

While I breath, I hope. Christian finally smiled. Best. Gift. Ever.

August: Today is Christian's birthday!
And we got to spend it in Mexico! And, more importantly, on the beach!

September: I noticed lately that Christian has an easier time moving if his upper body is inclined a little.
Christian started moving more and reaching for things more consistently.

October: We visited the GI doctor the other day.
And we all know how that went. We started Christian on the blended diet in 2011 and our (former) GI doctor was not very approving.

November: I was all set to tell everyone about Christian's new chair and how perfect it is for him.
Christian got a new wheelchair this year! He also got a new Special Tomato Chair for home, a swing set for outside, and a new car seat. His new wheel chair is so perfect, we went for our first grocery shopping trip together!

December: Armsy (adj.): The act of moving arms a lot.
Christian has been moving his arms a lot!

Other highlights not captured by the first sentence of the first blog of each months include:

We went blended full time!

A VNS surgery and implant.

We ran our first 5K marathon with MyTeam Triumph!

I was able to attend the most amazing retreat with fellow near drown mommies in Seattle.

Christian started pre-school and we've gained more of Christian back in 2011 then we've had since 2009.

Oh yeah, and did I mention Christian smiled???

And what's to come in the new year?

We have a new Physical Therapist who will be working with Christian at home in addition to the therapies he gets at school. Super Excited about her!

And we've just started working with a new neurologist. There might be some new changes in February.

And that's it.

Seriously. It's both a feeling of uneasiness and excitement not having anything planned. I know there will be more trips to the ocean. More trips to Mexico. More time with friends. More 5K's, hopefully.

It's a whole wide open year for us full of possibility. It's a blank canvas and we're ready to start painting!

2nd Annual Gift Wrap Up

noreply@blogger.com (ShaunaQ) — Fri, 30 Dec 2011 07:40:00 +0000

Christmas is finally over. Actually, we still have our tree and lights up, so it still looks like Christmas is here. As for the gift giving and receiving...that is finally done. At least the material gifts are.

So, I decided that, just like I posted last year in this post here, I'm going to recap what Christian got for Christmas and what makes for great gifts for children with special needs.

It's the SECOND ANNUAL WHAT DID CHRISTIAN GET FOR CHRISTMAS AND WHY IT MAKES AN AWESOME GIFT FOR OTHER KIDS WITH SPECIAL NEEDS POST!!!

Long title? You all already knew I was long winded, right?

This year it was time to get Christian a new weighted blanket. We were given an awesome weighted blanket with Spongebob's face all over it from our friends Jenny and Cici while we were in the hospital. That blanket is still treasured, but Christian has grown and the little blanket only covers him from shoulder to knee.

What is a weighted blanket? It's a blanket that feels almost like a bean bag in blanket form. It's weight can range but the weight offers a calming affect on children with any kind of sensory or movement disorder. We also use ours for positioning and to combat tone.

We chose to purchase ours from SensaCalm. You can choose patterns and characters and different sizes. I chose a space theme because the colors against the black backdrop are ideal, visually speaking. And I have a thing about space and Christian and reaching for the stars and the whole, wide universe and all that stuff.

The blanket is sewn sort of like a quilt. Inside the quilt are little beads like a bean bag. These blankets also have cotton inside of the quilt pockets, which makes the blanket puffier and more like a comforter.

Below is a visual of how each pocket looks and how thick the blanket is.

In our house it has become a tradition for Santa to bring the kids:

1) Something they want.

2) Something they need.

3) Something to wear.

4. Something to read.

Plus stocking stuffers.

Christian's something to read was a Thomas the Tank Engine book. He likes to flip pages when we read books (seriously, he reaches his finger out when I help put his hand up to the page) and it's easiest when they're board books. This particular book is not only a board book, but it also has musical buttons and we can sing along with each button after turning the page.

As I mentioned in the last post, he also got a Thomas flash light. When the handle is squeezed, Thomas talks and his face lights up. Christian seems to really like this toy and he tracks it all the way from right to left consistently. (Ahem, that means he likes it.)

Mr. School Bus and Mr. Ambulance served as stocking stuffers this year. They are big and chunky and perfect for Christian to hold on to. He seems partial to the school bus. They were only a few dollars each at Walmart.

And just as a side note, I believe boys should have trucks and cars. Girls can have them, too, but we're talking about Christian and he's a three year old boy. Sometimes I underestimate his interests thinking that because his movement is infantile, he must like toys for infants and babies. Not true! I can honestly say he's bored with a lot of his baby toys and he responds right away when introduced to a more age appropriate toy. So don't ever be afraid to go age appropriate with toys. Just because his movements aren't developmentally age appropriate doesn't necessarily mean his interests aren't, as well.

This toy below I actually found after Christmas. It was in the Dollar Spot at Target. Perfect toy for special needs!

1. It's shiny and metallic. (visual)

2. It's a tambourine! So it's musical. (auditory)

3. It's easy to hold and grasp. (tactile)

4. It was $1. (Mama likes a good deal.)

Old Navy had these musical shirts for sale this year. They come with a guitar or a drum with a little speaker. Everytime the shirt is touched, it actually "plays" the instrument through the speaker. Well, I got to thinking...this is perfect for kids with special needs! Especially Christian, who moves his arms often, but keeps them close to his body. He likes to fiddle with his seat belt and g-tube and he often gets annoyed if his tray is in the way of him feeling his shirt or whatever else is going on with his shirt or stomach. Enter Electronic Drum Kit Shirt!

Size 6? And Christian is a 3T? Absolutely. Christian is cool enough to wear big kids' shirts! We chose a drum set and the shirt is scarily just his size. You can see the little speaker in the corner.

Christian also got a big koosh-like soccer ball but it's extra large so there is no way he can't hit it.

We also got a bigger musical keyboard for Christian. The only piano-like toys we had were baby toys. And they're small. So it was important Christian have a bigger keyboard with more room to play and more keys to potentially hit.

Another winner I never, ever thought of...we're taking it way back, here...a lava lamp! This came courtesy of Aunt Wendy, Uncle Alex, and Cousin Alexia. Talk about visually stimulating!

Well, not this picture. Apparently, it takes a few hours to heat up.

So in a few hours, it will be groovy, baby. Like a year round Christmas tree.

Oh, and before I go...did I mention...

...Christian and I got the mother of all gifts this year...

...it was so needed...

...and so appreciated...

...and I was so surprised...

...I think I may have danced a little jig...

...I might have done the Running Man, it's all a blur...

...WE GOT A VITAMIX!!!

Blending just got a whole lot easier around these parts.

I'm thinking this will probably be the last time I post until next year so I'll wish everyone a happy and safe New Year full of awesomeness.

Santa came to town!

noreply@blogger.com (ShaunaQ) — Mon, 26 Dec 2011 05:43:00 +0000

Merry Christmas to all...

Santa came to visit!

Lola's sees what Santa left for the first time. No matter. She's got her Starbucks cake pop she got from her stocking and her "Nup" (pacifier) in her hand. Nothing can stop her now.

FYI: Lola named her own pacifier. She just started calling it a "Nup" one day and it stuck.

Time for Christian to see the presents, too!

A big, orange soccer ball!

Lola made sure to swipe every present Christian received.

Swiper, Swiper, No Swiping!

Christian reaching for his new school bus his way.

"I'm so cute."

New talking Thomas the Tank Engine with a flash light face! This was one of Christian's favorites. He liked the light up face and every time you grab the handle, Thomas talks. Every boy should have a train, I think.

Lola got dressed up in her dress from Nana Magdalena...and her nup...and her nose probably should have been wiped. But she still looked so pretty.

Christian reaching for his new big boy piano.

...And to all a good night!

Merry Christmas Pictures!

noreply@blogger.com (ShaunaQ) — Fri, 23 Dec 2011 08:28:00 +0000

It's almost Christmas!

I've been stressed about the whole day, I will admit. I left all of the shopping until the last minute and my sanity paid dearly. But I'm finally done and ready to bake and wrap until Santa makes his arrival.

Last week, however, we made some time with help from our friend, Michelle, to see Santa again. I'm really striving to make this a tradition. Last year was more convincing as we ended up with a really good picture of two of my cooperative critters.

Santa and Mrs. Claus 2010

I loved last year's picture so much. Just look at it! Mrs. Claus holding Lola. No crying. It was wonderful.

Now this year's picture...

Skinny, grumpy Santa, Mommy is in the picture because Lola was about to throw the mother of all tantrums if I left her there, and Christian...oh, Christian. There was no Mrs. Clause to help Santa hold the kids. As soon as Lola was placed on Santa's lap, the look on her face told me immediately THIS. IS. NOT. GOING. TO. HAPPEN. So I'm in the picture and at least Lola looks cute! Christian, you look cute, too! It's not your fault you got a skinny Santa who doesn't have the strength to hold you. Bah!

The picture still makes me laugh, though. I'll probably still try and do a Santa picture next year. I just may not be as enthusiastic about it. Isn't it pretty much the law that all parents must have a chaotic/bad/disastrous/fit throwing/terrified child Santa picture? I'm in the club.

And I look at it this way: I'd much rather be struggling with my kids to take a Santa picture with a crappy Santa in a mall than in a hospital with a child who is too sick to be home. I'll take crappy Santa any day of the week. My heart really goes out to those families stuck in the hospital over the holiday season.

Crappy Santa picture aside, I am very proud of this year's Christmas card. I actually love it because it highlights a very proud moment for us as a family.

Family Moments Holiday

Create your holiday cards online at Shutterfly.com.

View the entire collection of cards.

It captures us crossing the finish line as part of MyTeam Triumph in our first 5K race, Christian's first day of school, Lola with her crooked "cheeese" smile, and Gabe is actually smiling.

Beautiful.

Whether you have good Santa pictures or bad Santa pictures of no Santa pictures, have a very Merry Christmas!

Love,

Christian and his family.

New Neuro.

noreply@blogger.com (ShaunaQ) — Wed, 21 Dec 2011 08:01:00 +0000

We have a new neurologist!

There was no official "Will you be our neurologist?" proposal. This particular doctor has seen Christian in the past and remembered him and we've been seeing his colleague, another epileptologist who has been awesome, since Christian's VNS placement for increases. So we weren't exactly new to him.

It went something like this:

Dr. L.: "We can run into some trouble when there are too many neurologists involved..." (Looking through his file)

Me: (Interrupting) "That's why I'd like you to oversee Christian from now on."

Dr. L.: "Okay. Yeah, that's fine."

Me: "Okay."

And the deal was done. All of Christian's records are already in a central system so there are no problems there. The new doctor has access to all of it.

I told him about my philosophy with medication and how I'm not opposed to it, it's just that nothing has worked. He understood and we discussed some future possibilities early next year that we might try. But more to come when the time is right. I need to do some research first.

Dr. L. also increased Christian's VNS strength slightly, scheduled an appointment for February, and commented about Christian's super cool One Fish, Two Fish, Red Fish, Blue Fish Dr. Seuss shirt. He was so excited about the shirt that he stopped everything to show the intern. Oh, and he also taught us both about a reflex in little ones and older people. When you tickle his palm, his chin quivers. No, I didn't know that! Neat!

I was thinking about what my big problem was with the last doctor and what I can do differently in the future after the appointment. Part of me wants my opinion respected and I want to be the final word and have all control over my son. But the other part of me wants the doctor to take some ownership and lead us with suggestions and new ideas. It's been really hard for me to let go and allow that to happen with neurologists. And really, it's a trust issue. I just didn't trust the former neurologist with decisions regarding my son. So I could never really let go a little. Furthermore, I never felt fully trusted by him. I don't think he ever trusted that I would follow his directives. And maybe I wouldn't. No trust. In contrast, I fully trust our pediatrician, and I feel fully trusted by him. I know he respects me as a parent and he's not afraid to offer suggestions, whether I take them or not.

So one of my New Year's resolutions is to work on trusting this doctor and seeing where that takes us.

Doctor Shopping

noreply@blogger.com (ShaunaQ) — Tue, 20 Dec 2011 07:55:00 +0000

Since we're in the mood for updates....

We have an important appointment tomorrow afternoon. We've waited three months and tomorrow is finally the day.

We are in the market for a new neurologist. We've had the same one, pretty much, for the last two years. But it's time to move on.

Why are we moving on? Well, anyone who knows this particular neurologist often has something to say about his bedside manner, his lack of personality, as well as mentioning all of his other unsavory attributes. Let's just say he rubs a lot of people the wrong way. That was evident upon our first meeting when he told us in so many words we should more or less consider pulling the plug on Christian if things should go down hill. Consider us rubbed wrong.

Since that blessed day, I've learned a lot. I've learned to respect him in a funny way. He's very smart. And he's definitely an acquired taste. It's either his patients love him or hate him. More often then not, it's the latter.

I don't fault him for his bedside manner. I don't need coddling anymore. I've dealt with enough doctors and specialists to know it's their jobs to state the facts for our own good. Period. I can't get hung up on whether someone is nice to me or not while doing it.

The reason we've decided that it's time for a change in neurologists is because Christian's current neurologist has had to refer us to other neurologists twice. Once, when I inquired about the keto diet. He admitted he didn't have experience with it so he referred us to a neuro in Phoenix. The second time I inquired about the VNS. Again, he had limited experience and would have to refer me elsewhere. I've asked him about experimental drugs and he has limited knowledge. Our relationship with this neurologist has turned into an ends to a mean. He prescribes medicine and administers botox. End of story.

The point is when it comes to the treatment of kids like Christian, he practices medicine in a box. Christian is outside of that box. And he needs outside of the box thinking. This doctor's main focus is to maintain Christian. I need a neurologist who seeks to progress Christian. I didn't know there was a different until I met the neurologist in Phoenix who oversaw the keto diet. She was assertive in that we couldn't just accept the current circumstances, we had to seek out other options for the best Christian we could get. (Light bulb!)

Other reasons we're choosing to make the move involve this doctor just not expecting anything from Christian. He hardly knows him and he's been his neurologist for over two years. And he has never, ever said anything remotely positive about Christian. No "He looks good!" No "He's doing well." Maybe that's not his job. Maybe that's coddling. But people who truly know Christian know that he is doing so much better and don't hesitate to say it. Note to neurologists: Parents are looking for your acceptance and validation of any progresses, no matter how minute, whether we want to admit it or not.

So we have an appointment with the neurologist who wears the big NO SEIZURES pin on his lab coat. He's the doctor who initially evaluated Christian for the VNS. He's an adult neurologist who sees some children and his team of epileptologists has been amazing.

If for some reason this doctor tomorrow can't take Christian on as a patient, we'll go with plan B - the awesome neurologist in Phoenix who introduced me to the idea of progress in the first place.

I'm praying we'll find a good fit and that tomorrow's appointment will be productive in our search for a new neurologist.

Stay tuned!

Updates on Blendy-Blends

noreply@blogger.com (ShaunaQ) — Mon, 19 Dec 2011 07:48:00 +0000

Blending has become a way of life in our household and I'm happy to say we are at 100% blends for Christian. That means he gets whole foods, blended and pushed through his tube all day, every day.

This calls for an update on our blendy-blends. That's what I call them - Blendy-blends.

What?! It's cute!

The last update I gave on blends was that Christian was at about 80% blends. Meaning he was eating a full blended diet during the day and then about 200 calories of a slow, continuous feed of formula over night. Well, Christian finally put on a few pounds, to where I was comfortable taking his over night feed away. I kept this overnight feed for the calories and I wouldn't hesitate to add it again if I needed more calories in his diet again and he wasn't tolerating enough during the day. But his body does need to rest at some point. Now that the overnight feeds have been discontinued, Christian's body confirmed that it, in deed, appreciates the rest, because now he's sleeping so much better! And for more solid blocks of time over night. I didn't even give him melatonin last night!

More discoveries about blendy-blends:

Pumpkin has been life changing as far as regularity goes, if you know what I mean. I add anywhere from a 1/2 cup to a full cup of canned pumpkin (Libby's or store brand, but 100% pumpkin). It's about 80 calories a cup and it has helped Christian's digestion like nothing I've ever seen, other than starting the blended diet in the first place. No more blow outs, Miralax! We don't need ya!

We tried coconut milk in the box from the health food section of the store. It was suggested by another smart, blending, Mommy friend of mine to try the coconut milk in the can from the Asian food section. It had almost triple the calorie count for about 1/3 the volume. That's like calorie gold. It also has a high iron count. Well, that would seem to be great, right? Apparently, the iron was a little too high for Christian and it constipated him! Coconut milk is supposed to do the opposite! Google it. I swear, it will say people use coconut milk to fight constipation. Not for Christian. It caused it. So we've moved away from the coconut milk, unfortunately.

As far a dairy goes, we don't use a lot of it, but we dabble. Christian will get two scrambled eggs once a week or so. He also gets that yummy Dannon Greek yogurt that I want to steal every time I smell it. I will also mix a little milk with Christian's oatmeal, instead of water just because that's what I do when I eat oatmeal and it tastes better, so I'm doing the same for Christian. I'm just trained that way.

Oh yeah, forgot to mention, my son is turning into a little vegetarian (the kind that eats eggs, see above). It seems that Christian has a hard time with meats I call heavy, like pork chops and beef. He does a lot better with the already blended version found in baby food. So that's what I'm sticking with. He seems to get a lot more digestion stress, upset tummy, and acid reflux when he has heavy meats and starchy food like stuffing or potatoes. He can pretty much handle all fruits I've given him - oranges, apples, bananas, strawberries, tomatoes, and blueberries. No problem.

Fatteners I use to increase calories content are honey for the fruit blends and olive oil for the veggie mixes. It's an easy 100-200 calorie increase. Peanut butter is a great calorie hike, but we tried it early on and it was a little too heavy and rich for Christian and I distinctly remember what peanut butter smells like coming back up. Good times.

I think everyone has a "safe" or "go to" blend. Or what they would call a base blend. Ours is banana, avocado, and apple juice. We can add fruit, grain, or yogurt mixture to it and Christian can pretty much tolerate it.

We use baby food. Why not? It's already blended and has the calorie count right there. Easy! The best baby food mix in I've found is from Beech Nut. They have super high calorie counts on their fruit mixtures. And they're all natural, no added sugar.

By the way, the worrying and fretting I did about Christian's vomiting was short lived. He tends to cycle into vomiting when he's sick, and getting better can take longer for Christian. For me, it still feels like a failure every time he vomits because he sometimes just does it out of the blue and I feel like I can't figure it out. That being said, he's not vomiting right now, and one of the best things about the blended diet is that if all of the sudden Christian is vomiting, we can eliminate a food, we can play around with blends, add and subtract ingredients, until it works. It's amazing.

Overall, the decision to make the transition to the blended diet has been one of the best decisions for Christian we've made. He looks better, he's more alert, his digestion is better, his hair and nails grow like weeds, his skin looks better, he has less gas, and, overall, less reflux.

When we started, I wasn't sure it would work for us so I just bought a Ninja blender on sale with the thought that if we stuck with the blending, I'd head up to the big leagues and purchase the mother of all blenders...a Vitamix. The time has come. So in a few months, after the Christmas crazies and saving a little, we'll take the plunge and buy one of those suckers. The Ninja has done us well. It's karate chopped its way through most of what we have fed it. But it's time to graduate.

Blendy-blends are here to stay. Blendy-blends...write that down. Say it. It's fun!

(Reposting on the Cooking for Christian page you can find on the right sidebar with sample recipes!)

Minty lips, Santa visits, and a Birthday Girl

noreply@blogger.com (ShaunaQ) — Thu, 15 Dec 2011 07:19:00 +0000

I put lip gloss on my son. So what?

It's called Tennessee by E.L.F. I bought it for myself because it was a nice, nude gloss and it costs all of $3 at Target. It also said it was a "Minty Lip Gloss" on the side of the tube. Fun.

Well, I used it and realized it made my lips all tingly and funny feeling. They felt all minty and cool and then later left a sweet taste. As soon as this happened, I decided Christian needed to benefit from all of this fun and minty-ness. On it went!

"Seriously, Mom?"

Not only is the gloss great for moisturizing Christian's beautiful, fluffy lips (they are always dry!), but it leaves a sensation over his lips that makes him aware that he even has lips on his face. And it leaves a sweet taste over his lips so he gets that benefit, too. When I put it on him, he moves his lips around a little. If you look closely at the picture above, you can see that his mouth is slightly closed, rather than gaping open, which is usually the norm. We like this, Christian. We want more of this, Christian. Take note.

Tennessee looks good on you, Christian.

Santa Clause ~~is coming~~ came to town!

Today was Christian's last day of the school year before winter break. So today he got to meet Santa! I didn't realize Santa would be coming, otherwise I would have brought some type of camera, but as soon as I found out Santa was coming to visit, I didn't want to deprive Lola of her share of Santa induced intrigue-terror so we stayed.

I'm glad we stayed. Christian opened his hand to feel Santa's furry cuffs on his coat. Lola would not move from my lap, though. She was content in admiring Santa from across the circle and permanently affixed to me.

It was really neat to see another little girl in the class brighten up when Santa came. I think she may be autistic and I've often seen her off on her own, alone. When Santa came, she smiled, looked up at him, and opened Santa's hand to give him a ring of bells. It was so cool to watch that connection happen for her with just a visit from Santa Claus. 'Tis the magic of the season, right?

We were sad we won't see Christian's crew at school but we'll be back in January ready to learn! Recently, I've been reading about big things happening for Christian's friends attending school and I have to mention that school is like a therapy all of its own. It brings out another side of these kids that otherwise might have remained dormant. I completely underestimated the value of peers and social interaction with Christian. I'm so grateful Christian gets a chance at this and I've already witnessed the blossoming that has occurred in just these first few months just from going to school.

A little about Lola:

It was little sister's second birthday today. The last two years have gone by so fast and she's becoming this little sassy, stubborn, loving, girly person. She has opinions and words. She loves and screams and dances to everything. All of these things, typical of any two year old, are things I hold extremely dear. After having a non-verbal child who is unable to express himself to the fullest extent, having a child who is doing these things on an hourly basis becomes borderline genius.

Besides abilities, watching Lola interact with Christian is genius. She has no pretenses or expectations. She just does what she knows and all she knows is how Christian is right here and right now and that's her brother. But she's gentle with him. I mean, of course, there are times when she pokes him in the eye or tries to feed him lotion or a drink of water. But she rubs his head and climbs all over his chair. She picks up his hands and helps him play. She asks where he is when he's at school. This is what she knows and it humbles and astounds me that I get the privilege of raising this little human that will go out into the world with more compassion and understanding because that is what she knows.

She was a birthday girl today.

And I have to accept she's becoming a little girl, further and further away from babyhood.

I also have to accept that in any picture taken of Lola, there will always be blurriness. It's just the law.

Happy Birthday, Baby Princess Girl!

Christmas Lights

noreply@blogger.com (ShaunaQ) — Mon, 12 Dec 2011 07:27:00 +0000

I am absolutely fascinated by the amount of work and preparation it takes to leave this house with children in tow. That's why I think I make such a big deal when we actually make it to events and outings that we've actually chosen to embark upon.

This evening MyTeam Triumph was participating in another 5K fun run through Winterhaven. Winterhaven is a huge neighborhood (I'll call it a "village" because that sounds more festive). It's a huge village that puts on a showing of Christmas lights every year and it's been happening for years now. I don't know how long but ever since my one year as a Brownie. So that will tell you it's been at least twenty-five years. :-). *I later googled Winterhaven and discovered it was their 62nd year doing the Christmas lights festival. So I was off a tad.

Now remember that whole "if there is a race, we're going to run it" battle cry I made in the last post. Well when I said run, I meant walk. At least in this instance. We all got sick. And I mean big time sick. Like the Great Sickness of 2011 - sick. I'm probably exaggerating, slightly, but we're still trying to shake it off - all of us. Oh, except for Gabe. Who might have been the last to catch The Great Sickness. So he opted out of our Winterhaven excursion.

Speaking of opting out, because of our being sick, we opted out of the race, but instead, decided to go cheer on some of the MyTeam Triumph crew.

Go Sarah! Go Mason! - I was actually screaming this.

Going back to my fascination with going places, I'm always so fascinated that we actually get out of the house. It's so easy to choose not to go when faced with the whole getting ready of it all. But once we get passed that, out the door, and take off down the road, I'm giddy. I'm actually thinking - I can't believe we're doing this! We're actually going to Winterhaven! I'm so excited! As if we're taking a trip to the moon.

Anyway, we made it. We cheered. But then got lost on the way to the finish line, so we couldn't see the line crossing, but we took some pretty pictures of light displays on our walk through the village.

Yes, I'm going to share pictures of lights. Which are far more exciting in person, any day of the week. So even though we took over 100 pictures tonight, I'm sharing just a few of my faves.

Christian taking a gander at all the lights. Why, yes, that is a Hanukkah bear holding a dreidel in the background. The village welcomes everybody.

Mazeltoff.

There were beautiful big Christmas light displays...

...and amazingly simple displays.

"Dream Big."

And for me, Charlie Brown is pretty much synonymous with Christmas.

P.S. Christian has always reminded us of Charlie Brown.

See?

Look, it's Lola and Christian!

Ooohhh, Ahhhh!

Before we left, we stopped at The Wishing Tree.

What's a Wishing Tree, you ask? Well, anyone can write a wish down on a "link" of paper and attach it to other papers chains full of wishes.

So, of course, I did!

I made two wishes, but I'm not going to tell you what they are!

Look at all those wishes! By the end of the Christmas season, that tree will be overflowing.

It was a great evening and I was grateful we made it out. Not only have we endured The Great Sickness, but Christian has also been having a rough time in the evening. We weren't sure we'd even be able to leave the house at that time of day. We braved it anyway and he did great! He really likes moving. If we stopped to gaze or take pictures for too long he gave us a little grunt that we'd better get it together and move along. Of course, Christmas lights on a dark night are a wonderful sensory exercise. Always looking for therapeutic value in everything!

Seriously, though, it was a good night and the kids enjoyed themselves. It was the kind of night we think to ourselves - Why don't we do this more often? We got out of the house. We took off down the street. We gazed at the lights and then watched our kids gaze at the lights. It was fascinating.

Christmas Spirit

noreply@blogger.com (ShaunaQ) — Thu, 08 Dec 2011 07:55:00 +0000

Last weekend I really wanted to find some Christmas spirit. I looked long and hard. We (and when I say "we" I mean Manny) pulled out boxes. I stared at what was inside of them. Nope. It wasn't there.

And I know spirit isn't about things, it's about a message. It's about the birth of Jesus Christ. It's about family and loved ones. I know all this. But having some twinkly lights up and a Christmas tree strewn with decorations sure does help build that spirit. Alas, it all felt very overwhelming.

Not realizing a pretty fierce cough and cold were brewing, I chalked it up to me just being a Grinch. Then I was mad at myself for not providing my kids with happy - twinkling lights - cookies baking - Christmas memories. Not only was I having a hard time feeling Christmas spirity, but I was also mad at myself for it. Double downer.

Then it finally hit me. Sunday night, around 8:30PM. I took full advantage and hung up lights, pulled out decorations, and started proving to myself that I, in deed, had some spirit. When it hits you, you can't let that stuff go. Hello, one o'clock in the morning.

Over the past few days, through coughing and sneezing and sniffling, I've found the Christmas spirit. And I have a living room full of lights to prove it.

At this point I like to play the This Time Last Year game. This Time Last Year we were embarking on the Ketogenic Diet. I have to say that it was probably one of the hardest times of our journey, thus far. Not only did it not take flight as we'd hoped and prayed, but Christian did not respond well, physically, and he was pretty miserable for a good part of it. We were pretty much home bound. We couldn't go many places as a family, he wasn't up for it. And even if I didn't express it at the time, it was a dark time for me.

I couldn't understand why, after we had tried everything in our power, weren't we getting the answers and results we wanted. I couldn't understand why we were taking these paths that seemed so perfect it was if God had created those paths just for Christian. Maybe He did. But they seemed like dead ends.

I still don't know what purpose those paths served but I learned a lot from those paths. I learned a lot about what is in our power to do for him. I learned that, dammit, he is just bound and determined to create his own path. He is not going to be like any other child. Sounds simple enough, but we wanted him to be like other children, the success stories, the kids who's seizures were stopped completely due to the keto diet.

That dark time, This Time Last Year, was really necessary looking back. Because it brought me to a path of acceptance. Of course, we want Christian to improve and learn, but most of all we want him to be happy. That is most of all. We accept him. It's taken some time to get here, but we accept the boy God is giving us every day and we accept our life. We embrace it.

Acceptance has given us a sense of freedom. It's given us freedom to move forward as we are right here and right now. In comparison with last year, this is the greatest Christmas gift. It's the source of our Christmas spirit.

Acceptance also comes with a realization that every day is a gift. And every good day, where Christian is up for an adventure? Well, that's cause for celebration. So, if there is a parade, we're going. If there is a race, we're running. If there is a neatly wrapped gift, hand over hand, Christian and I will rip it open with reckless abandon. There is man made snow in the mall courtyard this weekend, it's time to get cold! (But only for a little bit, because we're babies like that.)

My point is that acceptance has allowed us to see each day as a greater gift than the previous. It has allowed us to recognize and appreciate any opportunity for joy because one day, it's inevitable, those opportunities will run out.

Christmas spirit is coming easier and easier. And it's all the more when Lola looks at those lights I hung from the ceiling and says, "Piiity, Mama!" (That's Lola language for "pretty"). And Christian can stare up at the ceiling, too, when he's on his back. Gabe's contribution? He was nice enough to sit and watch Elf with his ol' Mom for a little bit. But only for a little bit. And don't tell his friends.

During the Christmas spirit frenzy (also referred to as decorating), I learned we didn't have a tree topper. I searched far and wide (Walmart and Target) and didn't find one good enough that I actually wanted to spend money on.

We were already displaying this as part of our Christmas decorations and Manny suggested we put on top of our tree.

They say words have power...

I think it's appropriate.

Armsy

noreply@blogger.com (ShaunaQ) — Fri, 02 Dec 2011 07:59:00 +0000

Armsy (adj.): The act of moving arms a lot. This may included, but is not limited to flailing, flapping, and reaching. And yes, I made this word up.

Christian has always been able to move his arms since even being in the PICU. Of course, early on it was reflexive or lacking any purpose, but eventually, he put two and two together and started exhibiting some purposeful reaching.

It took some time, though. And the purposeful stuff was never consistent. Especially if he was going through something - a cold, crappy medication, diet changes - he would just cease all movement.

I'm pretty stoked to report that he's been rather handsy lately. And armsy. He's not that excited about reaching while sitting and he keeps his hand movements pretty small and close to his body. He fiddles with his g-tube, he's even disconnected it a few times and he likes to toy with the buckles on his safety belt.

That's why his IPad works so well for him. It can sit right up underneath him and it doesn't take much action to make it work. The picture shown above is a xylophone app. But he seems to prefer the piano app. I think because it's a softer, more melodic sound. I know he likes the piano app better because he'll play with it for longer and vocalize. But when he plays with the xylophone app, the sounds are louder and heavier. He vocalizes his contempt in about fifteen minutes.

Back to the subject of armsyness, Christian is reaching for toys while laying on the floor on his back. And he's doing it pretty consistently. Of course, he has his preferences as to what he'd like to reach for. So if you test him, make sure it's interesting or he'll stick his nose up at you and walk away. Or the Christian equivalent - he'll do nothing.

But here, he was doing something.

"I'm gonna get that ball."

"Watch me go!"

"Are you watchin', Mom?"

"I'm too fast for the camera!"

Let's try it from another angle.

"I know it's there!"

"Maybe if I flap my arms like a bird, I'll get it!"

"Let me try again."

"Great! Now I've knocked it out of reach!"

He is our baby Blackbird, you know.

You'll notice he's not really using his vision much while reaching for the ball. That's because it's a hard skill to master while trying to reach at the same time. He knows the ball is there. He wants it. But he also knows that if he flaps his arms, he'll eventually hit it. So, he technically doesn't need to use his vision. And he won't if he doesn't have to.

Take 2:

"Mom! My hand is stuck!"

These subtitles aren't far from the truth at all. I put this toy down next to him, walked away, and then I heard him yell.

I came back to find his hand stuck inside the winding wire. But it made me laugh because it happened over and over again after each time I set his hand free.

"Maybe this time I'll get those beads."

"Mom! Stuck again!"

And then he hooks his fingers around the wires and gets really stuck. I like this toy, though, because he always responds to it.

So I've made armsy the word of the week.

Something else I'm trying to get on film...

Christian rolling from tummy all the way over to his back in one movement. It has happened, alright. He just won't do it if there is a camera in the vicinity.

I'll get it, Christian! Just you wait!

The Secret

noreply@blogger.com (ShaunaQ) — Tue, 29 Nov 2011 07:26:00 +0000

Sometimes I feel like I'm on a hunt for some sort of secret. Like I know an answer exists to help Christian's tone. I know an answer exists to stop his seizures. I know an answer exists to help him laugh and express himself. I feel like an answer exists, I'm just not privy to it. So I have to hunt and calculate and eliminate and guess and still...I feel like there is a secret being kept from me and sometimes I have no idea how to figure it out.

Christian vomiting is no exception. It's perhaps one of the biggest secrets that I often feel so close to unlocking.

His vomiting comes in cycles. He'll do amazingly well for months. And then out of no where, throwing up is back. Usually, it's brought on by some kind of unsettling in his system. That's pretty obvious, but it usually coincides with illness, colds, teething - again, another secret.

The blended diet has been awesome for Christian, but when Christian got a cold a few weeks ago, he was what I like to call "juicy." He had a lot of mucous in his throat and nose. I've mentioned before that the doctors initially said he had no existing gag or cough reflex, hence the trache placement after his accident. The irony of the situation is that now Christian has a hypersensitive gag! This means that more mucous in the throat leads to gagging. Cut to Christian throwing up his dinner.

I could be having the best day of my life. If he throws up, my day is crap. It flips upside down in a minute. Know why? Because I take it personally. I feel like I'm personally responsible for not figuring out why it's happening. And if I know why it's happening, I'm personally responsible for not figuring out how to make it stop happening. It's all a secret.

Christian has been vomiting again due to some leftover juiciness from the sickies he had a few weeks ago. See I know why, I just don't know the secret to making it go away short of waiting it out. Which, by the way, after all the wracking my brain to find a solution, is what will be the secret. Waiting.

It still doesn't make it fun. Last night he threw up. He had a tough time in the evening holding his food down. Day finished. I finally started venting to my husband. This is how it went...

I feel like it's a big secret!

And I don't know the answer!

I try everything and it still comes back!

What iiiiis it?! Just somebody tell me so I can do it!

Yeah, that was me. And I believe I've vented the same questions for seizures, the keto diet, fill in the blank.

He had very simple words: Maybe we aren't meant to figure it out. Brain injury has a lot of mysteries. Maybe we're not meant to figure out those mysteries yet. Christian is doing well, otherwise. We're doing the best we know how. Well, at least you are. I just watch.

Isn't he a funny one?

Is that the secret? Not trying to figure it out? Some parents decide never to question the doctors or specialists. They just follow the direction on the prescription bottle. Are they on to something? Are they the ones who have it right?

I don't know. Every family does what is best for them. But I'm a big believer that when we know better, we do better. I have this incessant need to understand. Because then I can move forward with a plan. But if I don't understand I can't move forward. And, believe me, I've tried my hardest to follow the whole lean not on my own understanding thing. But for a girl who has a need to understand things, I'm not really great at following the aforementioned instructions. And there are only so many times I can repeat that line about understand before it becomes white noise.

Maybe it is as simple as remembering I'm doing the best I know how.

The good news is that even though Christian had a cold and even though he's been throwing up a little bit, he has gained a whole pound and a half. He's finally at the weight I'm comfortable with - a tall 31.5 pounds. Speaking of secrets, I finally found the secret to getting Christian to gain weight. (I added in extra feeds by making sure Christian eats more frequently during the day, just in case you were wondering.)

This is a good secret to have uncovered because being that Christian is on the blended diet, I am directly responsible for all of his nutrient and calorie intake. So, of course, if my child isn't gaining weight I feel responsible. Just like any other parent would for their child, whether they were eating by mouth or through a tube. Gaining 1.5 pounds is parental success for me.

Despite this recent frustration, I know it will pass soon enough. And looking back to this time last year, Christian is doing so much better now than he was then, which is a testament to how much we have gone through, changed, tweeked, and altered to get him to where he is now.

We've done and are still trying to do the best we can. Simple. No unlocking of secrets required.

Thankful for the new normal.

noreply@blogger.com (ShaunaQ) — Thu, 24 Nov 2011 07:25:00 +0000

I'm thankful for a lot of things and I think I make that pretty evident here.

I decided to go back and read last year's Thanksgiving post just for kicks and I started to think about this last year and what I am most thankful for.

I think most of all I am thankful that we have settled into our new normal. By now that seems almost cliche to say something like that in our world because I feel like we hear it and say it all the time. In our community, and when I say "our community" I mean pretty much any family who has a member who has special needs through birth or after birth, it seems that everyone is on the great search for the "new normal."

When am I going to feel like I can laugh again?

When will I be carefree?

When will I be comfortable with all this?

When will we accept all this? Can we even accept all this life will bring us?

When will we arrive? Can we go back? When will it be okay again? When will I feel happy again? When will I stop crying?

I feel like I'm falling. When will we learn how to fly?

The first year after Christian's accident, I didn't even have time to really process any of this. We just kept going, going, going and it really distracted us from any kind of grief that was lurking in the shadows.

It wasn't until our second year hit and we slowed everything down, concentrating on only a few things at a time. That's when the rain came. It poured. And it was gut wrenching.

Lately I've been thinking about that first and second year and how different they both were. And I think about right here and right now and I have to say how damn thankful I am that we've found our new normal. Not only have we found our new normal, we've carved out a space, burrowed out a warm place, covered it with fuzzy blankets, and we now reside here in our new normal, safe and sound.

This new normal is our safe place. Often we venture out and forget that our normal looks different. And we see the grief on the faces of others wondering what and why and how this could happen to such a cherub of a boy. Those faces hit us in the heart, but they don't stay there for long. We know we have a safe place...covered with fuzzy blankets. It's the new normal and it's all the rage. It's all ours.

And we do laugh, we don't cry nearly as much, we are happy, and it's finally okay.

Yes, it comes with a little acceptance, and, in a way, there is a sadness that comes with acceptance. But there is also a great release and forthcoming freedom to move on and find that spot called normal.

Some people can't accept what has been dealt. But I urge them to. There is happiness and there is light beyond the darkness. The misconception is that acceptance is giving up. It's really not. Acceptance is moving forward and learning how to fly.

So I am ever so thankful that we've found that cozy place that is our normal. I'm thankful we've found our groove. I'm thankful that not only have we found happiness and laughter, but we seek it out and claim it as ours with a healthy vengeance.

Just a few other things I'm thankful for...

The Blended Diet: It makes me feel more like I'm his mom again. And I'm thankful he has gained a whole pound, thank you very much.

**************

This relationship.

**************

Christian's new wheelchair. It gives him legs. And he's super comfy. I can tell.

**************

All of my mommy friends online and in person.

You give me strength when I need it most. And you allow me to give it back.

**************

Christian's art projects he brings home from school. I love each and every one of them simply because he touched them. It's a little bit of an obsession. It went from this...

2 projects

...to this...

How many projects?

...and I'm adding more. It's a wall in our house that is screaming to be made into a collage of Christian's artwork. I'm not sure Manny hears that scream, but I certainly do. So to be continued...

**************

Oh, and you know I'm grateful for my kids' smiles because I know what it feels like not to have one. Christian still gives me his little smirks and as far as I'm concerned it's a start.

***************

To all - have a wonderful turkey day. Enjoy your cozy normal. Happy flying!

Push me again!

noreply@blogger.com (ShaunaQ) — Fri, 18 Nov 2011 05:35:00 +0000

If you think Christmas came early in the stores this year, Christmas came really early for Christian. Think October.

I mentioned a few weeks back that new equipment was in for Christian. Well, we were surprised with Christian's new wheels, his new seating system for the house, his car seat, and his swing set all in the same week! Merry Christmas! That's all you're getting, Christian. Just kidding.

This is Christian's new Special Tomato Seating System.

Read about the story of the Special Tomato Seat here.

I thought it was pretty "special."

Christian trying out his new chair and tray with his OT.

It's also approved to use as a car seat. Cool, right?

Enjoying his blueberry breakfast smoothie.

The set up.

We also got a pretty heavy duty swing set. This swing is called a Jennswing and made especially for children with special needs. Swinging and swaying can be very calming to the brain injured child. So we were so excited when we found out it was approved. Daddy set it up on our patio under the shade so Christian could enjoy it more often.

We're still working out positioning.

And we were thrilled to find out it came with another swing for little sister!

She's pretty happy about it, too.

Technically it came with a big kid swing so we're saving that until she's older. We replaced the swing with one more her size from another set we have so she can swing right next to brother.

Again...pretty happy about that.

We also got a car seat but I'm not crazy about it so I'm not sure we'll keep it.

Overall, though, I'm so grateful all this stuff was approved for Christian. The state of Arizona has been kind to us so far, as it was the state who ended up authorizing everything 100%, no matter what our primary insurance kicked in. To be fair, we hadn't ordered anything in over a year so I'd say he was due some new equipment. But I'm still grateful that with budget cuts, insurance and health care debates, and our system in constant change, Christian was still able to get what he needed to make his life just a little more comfortable.

And what does Christian think of the swing? Well, he wasn't exactly digging it at first. But the day these pictures were taken (yesterday) he changed his tune. In fact, every time the swing stopped, he vocalized and got a little whiny. Then I'd push him again and he'd get quiet. I would get distracted chasing Lola around the yard, his swing would stop, and he'd start whining again. I'd push him and he was quiet. Push, swing, stop, whine, repeat. Quite the little three year old I've got - "Push me again! Push me again!" Only in Christian's language.

I'm gonna go out on a limb and say he likes it.

Lessons in Perspective

noreply@blogger.com (ShaunaQ) — Mon, 14 Nov 2011 06:52:00 +0000

Perspective.

I have a friend who is taking a course in photography and her latest assignment was to shoot from the perspective of something or someone else. So she chose Christian, and kind of by default, me. She took the picture of Christian's little, blond head and his perspective on the playground. I really just love this picture for all kinds of reasons.

Perspective was the reoccurring theme this weekend. It's an abstract idea, really, because perspective is a different experience for everyone. And that's selling the idea short. So often we loose perspective and we forget what's really important in life. Tragic events, in the meanest way, return perspective back to us. And then our perspective changes, temporarily, long term, both. And the perspective of others changes. It's ever transforming, ever evolving.

I was cleaning out my files, something I rarely do. I went through every single one. I read everything in each file and came out of it with a garbage bag and a half of trash and three quarters of a day gone. Oh, procrastination! Why do you make me pay!

Of course, I came across the PICU discharge report. Of course. I mean what else would you come across when you're going through your own files and you're all alone and Itunes just hit some song from Adele on your playlist? Of course you find it.

I was actually interested to read through it. I opened it and started to read with a matter-of-fact-ness. Especially now knowing and understanding a lot of the terminology. I started to read almost as an outsider, like a nurse reading discharge papers but with a small voice in my head reminding me to tread lightly.

"...He did not regain consciousness, nor have any spontaneous breathing prior to intubation by paramedics...he received epinephrine 0.1 mg x8doses at 1:10,000 concentration, atropine 0.2 mg x3 doses, and bicarbonate 10 mEq x3doses...and CPR was conducted. The patient had ROSC at 1810 hours. Initial rhythm was PEA."

Wait. What was that? What's ROSC? And what's PEA? Hello, google.

According to our friends at Wikipedia:

Return of spontaneous circulation (ROSC) is resumption of sustained perfusing cardiac activity associated with significant respiratory effort after cardiac arrest.^[1] Signs of ROSC include breathing, coughing, or movement and a palpable pulse or a measurable blood pressure.

That did me in. I wasn't treading lightly anymore. This was very, very heavy. And out of nowhere came tears and...perspective. He was hiding, that perspective, just waiting to pounce.

I think what got me was the word spontaneous. Now I'm sure there's a real nurse out there ready to tell me I'm probably reading too much into this but, to me, as I understand it, the medical staff worked on him with all their skill and might with basically no change. He was clinically dead. They almost called it. Until we came in. And you know the story.

No matter how forsaken I feel sometimes, no matter how jaded or weary I get, I feel deep down in my soul that's when God took over. They might call it spontaneous. I call it a profound Divine intervention.

The report goes on to note initial rhythm was PEA and according to Medscape Resource PEA is Pulseless Electrical Activity. The website also says the overall mortality rate is high in patients in whom PEA is the initial rhythm during cardiac arrest.

By all of the accounts above, Christian shouldn't have made it. He wasn't going to, except for that on his way to heaven he heard me calling and made a u-turn. Call it medical science, call it spontaneous, I call it God - that boy has business here on earth and there is a reason he made it. There is a reason for him. He may not walk, he may not talk, but he has a purpose here. I believe it.

And what's more, every single minute past the point of his life is a gift. As another special needs parent said, it's borrowed time. And I'm grateful for all of it.

Those tears that hit me weren't sad tears. They were tears of profound gratitude. They were tears of not so much disbelief, but simply awe at how amazing his survival is.

Perspective.

P.S. Christian was sick all last week with cold and fever junk. The cough they said he'd never have is strong and forceful and kept everything out of his lungs. And it's not spontaneous. It's purposeful. I'm happy to report he's feeling better, by the way.