Getting Messy

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

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

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

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

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.

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!

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

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.

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.

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!