Restless

Trust in the LORD with all your heart and lean not on your own understanding. Proverbs 3:5
Not an easy task sometimes.

Last week wasn't a fun week for Christian. It was crappy. There...I said it. And I would have used an expletive had it been a few hours ago.

He was doing so well about two weeks ago. Hardly tensing up, no arching, sitting upright without throwing his head back, alert, just doing overall really well.

Then, all of the sudden, he was restless, it seemed. I thought, at first, it was teething. He was drooling a lot and he had three or four teeth just pushing through those little gums. So, of course, Christian would be cranky, right?

But then he was cranky the next day and the next and the next. Cranky when I moved him, cranky during stretching, cranky when eating, and the worst was in the evening when he would just lie down, visibly uncomfortable, stiff and flexed, arching and...crying.

This is how it used to be a while ago. But that had slowly gone away. This is why I think something has to be going on.

The crying. What I longed for and prayed for came to fruition and was music to my ears. It still is at times because it's the only way Christian knows how to communicate. But right now it seems like he is uncomfortable or in pain. I'm so used to going for a pacifier to calm Lola that sometimes when Christian is crying I will think - I need to get a pacif-...wrong kid. And then I get a little bit sad because I don't know what to get him that will make him feel better because I don't know where it hurts.

Needless to say, I am emotionally exhausted. All week I've been racking my brain trying to figure out what is going on. Is it his stomach? Should I call the GI doctor? Is it his muscles? Maybe he needs to be stretched out again. Is he having seizures I don't recognize? He does seem lethargic and sleepier then I would think a child his age should be, even a child in a similar situation as Christian. But do all children with brain injuries sleep a lot? Should I bring it up at the pediatrician's office? No. He's just going to send me to a specialist and I can only handle so many specialists! I will bring it up to the pediatrician but where will that get me? Should I request another EEG with the neuro? Should we do a 24 hour EEG this time? Damn, that will be complicated with the other kids, not to mention a 24 hour stay in a hospital, exposing Christian to all sorts of germs that could lead to more problems...

Can you see why I'm emotionally exhausted?

Trying to figure out how to make things better for him. Trying to figure out how to make Christian's environment and what goes into his body more optimal for him. This is what I think about all day, every day. This is what I pray about at night. And the crying...oh, the crying.

The crying, something I once prayed for, is now a reminder that my son may be in pain. It's a constant reminder to me that I have no idea why he's crying. Now that's not entirely true. I can usually pinpoint why he's upset, but sometimes I can't. I don't know why and I don't know how to make him feel better. It's also a reminder that something could be wrong and this safe little bubble we've been floating in, with it's thin exterior, may easily pop and we're back in the hospital or Christian's getting poked and prodded to figure out what's going on. Can't he just get a good night's sleep and wake up to a new day? That's what I've been hoping for a couple of days now.

Emotionally exhausted. I went to church today and the pastor spoke about leaving your burdens to God and then LEAVING them. We have a tendency to pretend to leave them, but then never let go. I guess right now I'm having a hard time figuring out where the fine line is. Does that mean not to push so much in getting answers to these medical mysteries in my son's brain? But without an answer how do we make things better? Does this mean to keep pushing but to keep open eyes and open ears so I'm open to the answers? I don't know and for today I'm tired of thinking. I'm just...exhausted. And I'm sure Christian is, too.

I'm praying for a better week this week and hopefully some answers. I'm praying that Christian will feel better and happier. And, as always, I'm praying for smiles.

Poison

Botulinum Toxin.

Such a foreboding two words, really. Translation...botox.

And we're considering it for Christian. Oh, we're more than considering it. As soon as insurance gives the go ahead, Christian will receive two shots, one in each adductor, of botox. It's not just for crow's feet and laugh lines anymore, ladies and gentlemen.

Botox is now used in small doses based on weight for individuals with spasticity. This is what Christian has and what I'm talking about when I refer to his tone/tonal patterns. Christian has a form of what is called hypertonia or a stiffening or tightening of the muscles in his legs. He still has full range of motion and can be stretched out and we want things to continue that way. That's why we're doing Botox.

What Botox injections will do is temporarily paralyze the muscles that are so stiff or spastic. This will allow us to work other muscles groups around these paralyzed muscles so that those muscle groups can strengthen and, hopefully, reduce and/or eliminate Christian's spasticity.

Why is this important? Well...remember my post of about Christian's orthopedic surgeon? He seems to think it is of dire importance that we cut my son open to release his adductors immediately. When adductors are tight, this can pull the hips out of socket, causing multiple, serious problems. In no way do I believe Christian needs this surgery. Instead, I'd like to consider alternatives. That's why we're considering Botox injections.

So this is why we went to see the neurologist today. This isn't Dr. Hendricks, Christian's regular neuro at the HBOT center. This is...who I've referred to in the past as...Dr. Death. I know, that's probably not fair of me to call him anymore, but he's now a character in this blog and that's how people know him so who am I to change things? Long story short, this was the first neuro that saw Christian on the night of his accident. He has zero bed side manner and he was also the neuro who had no time to look at or explain Christian's EEG findings to me.

But we had to go to him because, apparently, he's the only person in southern Arizona who can do pediatric Botox injections. Go frickin' figure.

The great thing was Christian's PT came with me! Awesome because she's a professional and not some crazy mom trying to tell him what to do. And she also knows Dr. Death both personally and professionally. Go frickin' figure again!

She was a great intermediary. Little Lola came along, as well, and did her job of just being cute, thus softening up Mr. Crabby Patty. (He just keeps earning nickname after nickname! Any Spongebob followers out there?)

I explained to him why we were there since he hadn't seen Christian since September. I also explained I'd been seeing another neurologist. I got the feeling he was a little butt hurt that I had cheated on him with another nuero. He said, "I'm going to defer all of your questions back to Dr. Hendricks so what do you need me for?" Yeah, he said it just like that.

So I said, "We need Botox and I hear you're the man to do it."

He consulted with the PT and they discussed different areas where Christian might benefit from it's use. The PT suggested Christian's lower back to ease extension, but that didn't sit well with me because our goal right now is to strengthen his lower back and I didn't want to loose any ground. So I suggested that by loosening the adductors, perhaps that would loosen the back (which could happen because it's the spasticity in the legs that pulls on the back and spine). So I said that maybe we should just do the adductors for now and if in six months we haven't gained any ground with the back, we can then do the back. The PT and neuro surprisingly agreed.

The meeting was pretty painless, but I had to break the news to the HBOT center that I saw my ex (gasp!). When I brought up Botox before, they were leery of it and suggested I wait for more HBOT treatments. But if, in deed, Christian's hips are really at that much risk in such a short amount of time (which we'll know when we get our second opinion), it is my job as Christian's mom to do whatever it takes to make sure his body is okay. Whatever is in my power I'll do. If it means injecting poison into my son, as some people will see it, so be it. I know that sounds morbid and not that wonderful, but it could be wonderful for Christian. We have to do what we have to do and time doesn't seem to be on our side for this one.

And to tell you the truth, if someone said that a vial of poison would help my son and improve his quality of life, sign us up for the vial. Is that too honest? It's because I'd do anything to help my son and that is the honest truth.

Speaking of Crabby Patties, Christian has been one all week. I was thinking it was teething because he was getting so many teeth at once. And it takes longer for Christian's teeth to break through because he isn't gnawing on anything to help those gums. Other than the teething, I don't know what's bothering him. That's one of the hardest things, figuring out what's going on and fixing it.

Everyone please pray that my little Crabby Patty will feel better soon! And also please pray that the Botox will be beneficial to Christian.

Durable Medical Equipment Land

Next stop on our journey...Durable Medical Equipment Land! Ever been there? Great! Neither have we.

Let's start with the chair. This isn't just a chair, like the ones that hang around your dining room table. It's a different kind of chair. For babies and younger kids like Christian, these aren't really wheel chairs. A traditional wheel chair is...I don't know...a chair you wheel around, like the old school ones. At least that's what I consider a wheel chair. Oh, no. It's a whole new world out there.

The chair Christian will get is kind of like a stroller that will meet his needs. This is prettying up the word wheel chair, really. This chair will give Christian the support he needs and I'm really excited about it. This wasn't always the case.

In the beginning when people talk about getting a "chair," I'm sure every special needs parent thinks, "That's nice. But my child will be walking soon, we won't even need to go there." Then the weeks pass and the months pass and you realize...my child really needs this. We've been getting away with a jogging stroller, but seriously, this is not comfortable for Christian, nor is it functional in promoting better posture or alignment of his body.  And that's when you come to terms with this part of the journey.

It also helps me come to terms with this need for a chair if I can pick out the pattern of this particular chair. At least it's fun...green and brown with puppies all over it. You have to make the best out of it, ya know?

Now, I'm excited for the chair to arrive. Really excited. Christian really needs this to be comfortable. And with good positioning, he's less irritable and his body can relax.

Now also in Durable Medical Equipment Land you'll find what is called a stander. This is a device that pretty much looks like a medieval torture device. The fact is that Christian needs more weight bearing and this will help with that. Also, I've just started putting Christian in a standing position while I'm working with him and something different happens to him. His legs soften, he sinks into the position, and relaxes. He likes it! And all of the inputs he's getting into his joints from standing and bearing weight have caused him to start moving his legs and feet.

Which leads me to think...why haven't any of the therapists wanted to do this sooner? I mean I've heard various therapists talk about getting him in a stander for six months now. But no one has actually done it yet. And now that I'm working with Christian multiple times a day and really getting to know his body language, I wonder why we wasted all that time driving to outpatient therapy to do the same damn thing over and over again in PT - stretching his legs, massaging his legs, stretching his legs, pushing this toy, looking at that toy and repeat. Now that I look back, there were hardly any results!!! And any gains Christian got from PT were erased in the hot car ride back home. Ugh! I could go on.

But weight bearing...ah, weight bearing. That along with some other therapy exercises (which I will go into at a later date) I picked up online have made my son melt. Melting is good! And all this in just about three weeks of weight bearing/standing exercises. Must get a stander! That's the next step in Durable Medical Equipment Land.

There's so much in Durable Medical Equipment Land and we've only just begun. It's not a place I had wanted to be, but here we are.

My husband wonders where we'll put it all - they are usually quite large and we don't have a lot of room. I told him I didn't care if we put it on the roof for storage, if Christian needs it we're getting it.

Christian's PT brought us catalogs chock full of Durable Medical Equipment Land landmarks to visit. It's really a kin to shopping. It's a new kind of shopping. Shopping for equipment that might make your child feel better, look better, function better, socialize, exercise, become part of the family again. I'm up for that kind of shopping any day.

The chair was shipped on the 13th so who knows where it is now. The good news is it's en route. I will be sure to post pictures as soon as we get it, brown and green puppies and all.

The Present

"When the heart weeps for what is lost, the spirit laughs for what it has found."
- Sufi Aphorism


I was reading another blog called My Charming Kids. There was a particular blog post I was reading a little absentmindedly while other things danced around in the back of my brain. The blog post was about a little boy wanting his mommy to sing him a song over and over again in the midst of bath time. There are two other kids needing attention, mommy already sang the song twice, and she just didn't feel like it again. She then explained how it hit her at that moment that she might just miss this chaos. She might miss singing the same song over and over again when her kids are off and out of the house someday.


This is a pretty common thing - people telling young families tired from lack of sleep and deaf from screaming kids that "you'll miss this." A phrase unlikely appreciated except for in retrospect.


After reading the post my first instinct was to relate it to before Christian's accident. I thought that's where my brain was supposed to go. But instead I thought of my time with Christian now and that I might actually miss this time.


The thing is my head is always in the future. What will the future bring for Christian? Where will he be in six months? A year? What therapies will we do this year? How will we raise money for therapies? This is all future thinking.


But so much can happen in an instant, as we've been taught. Christian is doing well and making progress and we've been lucky enough to avoid any major sicknesses since we came home. But in an instant things can change. I'm not naive. In an instant it can be not so good anymore. Or Christian could develop other issues in the future that could mean a whole range of things for him. That's not really a positive way to think but, oddly, it's a positive spin on the present.


The present means I get to hold him and stare into his eyes. The present means I get to watch his body change and come back to life. The present means I get to witness the power of God bring movement and peace back to a body that had nothing but stress and trauma. I get to see him see and hear the world around him a little more each day. 


In deed, our lives are difficult in comparison to other "normal" families. But, honestly, our lives could be a whole lot more difficult in an instant. And it may just happen that I look back thinking - I miss that.


Or Christian could become very mobile, moving around, getting into things, demanding his favorite juice, fighting with his sister. This could be our future reality, too. With God all things are possible. And maybe for a second, relishing in God's possibilities, listening to God's little miracles fight and bicker, I may also miss these days just a little.


The present days signify the miracles already given to us. Although these present days are full of ups and downs, progresses and setbacks, some days heartwrenching, some days full of rejoicing, in an instant we could be in a situation where we would give anything to have these days back.


All of that being said, I was holding Christian in my arms and lately I've noticed how big he's getting. As he's staring into my eyes, intentionally, rather than staring through me like maybe 4 months ago, I watch Christian move and reach with his hands in slow motion. I watch him do things for the first time. Without processing or analyzing, the first thought that came to my head was - I'm gonna miss this.

Seeing Clearly

We met with the vision specialist from ASDB who came to assess Christian for the first time. Christian received a vision assessment from an eye doctor back in September where we got his CVI diagnosis. Well the assessment was great! The specialist was really optimistic and said by what she observed, Christian is seeing more than he lets us know. He's very aware of his surroundings and his auditory abilities are really good. He even got distracted by us talking when the specialist was trying to work with him. She said he was more interested in us. She said he has vision, it's just slow and he seems to be stronger out of his left eye/side. It took some time, but eventually Christian was able to look at some of the toys the specialist brought. The good thing about CVI is that vision only improves so the specialist would like to assess him again in six months.

There was also a soft doll wearing black, white, and red that Christian really liked and consistently stared at so the specialist is sending the doll by mail along with some baby sunglasses (Christian really hates when the sun is in his eyes). So Christian gets a mail order girlfriend soon and cool new shades! I'll post pictures when they arrive.

Something is changing in Christian.

I looked at him today while in the HBOT chamber. He was all sprawled out over my lap and sleeping. Somewhere, sometime, somehow in the last few weeks my baby turned into a toddler. He's so big and little boy looking. And the reason he's looking so long is that he's not all tightened up. It's like his body, with it's loosening and unwinding, has grown into a toddler and now we see it.

His body is laying differently, almost normally. I can't put my finger on what exactly is causing this change. In the last two weeks he started HBOT, I've been concentrating on more lower back stretching, and practicing more weight bearing exercises with him. We also did cranial sacral in the last few weeks. Herein lies the mystery - what's working? Is it one single thing? A combination of everything? Does it really matter? Something is working and that's what matters. Overall, one thing I can be sure of is that God is working. Whether God's working through others or just going solo, it's all good.

So what are these changes? He's holding his head more midline rather than arching or over extending to the right. In fact, not only is he holding his head midline, he's moving his head back and forth to look at things...intentionally. And it kind of seems to have happened all of the sudden so I'm holding my breath to see what the next day brings. It really can change from day to day.

Christian's also moving more. He's moving his arms and hands to grab at things - especially humans. That sounds funny but if someone is close to him, he will search for them with his hand so he can feel them.

Christian's tone has improved so much that when the PT came to visit today, I decided not to say anything to see if she'd notice. I waited about 5-10 minutes into the session and she started to talk about how relaxed Christian was and how much his tone had improved. Ahhh, validation.

It's times like these I can see Christian coming back to life. He works so hard, harder than anyone I know.

Lemonade.

I like lemonade. But only the good kind. Homemade. Or at least some kind of lemony concoction with lemon juice and sugar. Just not lemonade from a powder, a fountain soda machine, or a can. Otherwise, it's one of my favorite refreshments.

How picky I am about lemonade should preface my explanation of the Lemonade Award I received from Cici's mom, Jenny and Makenzie's mom, Pam.

The Lemonade Award is presumably for someone who takes life's lemons and makes lemonade. I am honored by the nomination for this award. I'm a huge fan of lemonade so it's a good thing. It's pretty telling that I'd be so picky about how my lemonade turns out though. Can't hide the control freak in me.

This is the idea...

*Put the Lemonade logo on your blog or within your post.
*Nominate at least 10 blogs with great attitude or gratitude.
*Link the nominees within your post.
*Let the nominees know they have received this award by commenting on their blog.
*Share the love and link to the person from whom you received this award.

The only thing is (and I was reluctant to post because of this)...I don't follow ten blogs yet! I'm a blogger novice, a baby blog, a blog freshman if you will. I'll get there eventually but for now, I'm honoring all the blogger friends I do have, even though there aren't 10 of them yet. I'll be a varsity blogger someday!

Here goes...

The Fisch Tank - One of my nominators! I've mentioned Jenny, Cici's mom, before. She's helped me so much in navigating this new normal our family has now. Her daughter was also 11 months at the time of her accident, so I feel like there's already a roadmap given to me by Jenny. She has given me invaluable advice and direction from almost day one of this journey. She's not only shared her knowledge of services and fundraising, she's also shared her own fundraising ideas, sent us awesome therapy tools and Christian's favorite weighted blanket, and thought about each member of my family during the whole process. She's super supportive and crazy helpful! She also puts together really amazing and creative lunches for her other two children that are right out of a magazine. Come on!!

Makenzie's Miracle - Another nominator! Pam has fought so hard for her daughter's recovery and she doesn't take crap from anyone! She has the best advice and will light a fire under your ass if you need it. I have a slogan when I'm at a crossroads and I don't quite know what to do...WWPD - What Would Pam Do? She is feisty and a woman of great faith. She's always there, from conversations for hours in the middle of the night to checking in after a crappy doctor's appointment for some support and encouragement. She's ALWAYS there as a friend, an advocate, and an educator. She's a renegade, what else can I say?

Pray for Santana - This blog follows a little boy who also nearly drowned. His mom Lindsey has really had her share of lemons recently, but still has faith in her son, Santana. She keeps keepin' on through the good and the bad, all the while trying to take care of the rest of her family. And she's an Arizona girl like me!

Samuel's Miracle - Samuel is a beautiful little boy who had the same type of accident Christian did. His mom and I share some similarities in having a baby right after the accident. She once wrote in one of her blogs about how having a new baby was so healing, but at the same time, so bittersweet. I get it.
 
Rissa Roo and Her Family Too - Love this blog! It's about little Marissa and it's written by Marissa's mom, Alicia. She's another trach Mama like me! Marissa is so cute and so charming and I always love reading about her. Not to mention, it's funny! Whether it's the writing from Marissa's mom or just video of Marissa doing silly things, I'm almost always laughing at the end. A sense of humor is the perfect recipe for lemonade!
 
Brody Johnson - Brody is a little boy who suffered a near drown accident in September of 2009. I follow this blog every day and pray for Brody and his healing and recovery. He's a little blondie, kind of like Christian and he's still getting his beauty rest, recovering and healing from his accident. His parents are anxiously waiting for Brody to wake up so every day I think about him and say a little prayer for his family.
 
So I can't exactly recommend 10 people for the lemonade award simply because I don't follow 10 blogs...yet. However, the above mentioned blogs are part of my life now so I had to give shout outs. Yes, I said shout outs.
 
As for Christian, he's doing pretty well. Tomorrow the lady from the Arizona School for the Deaf and Blind (ASDB) will come out and evaluate Christian. If you can't remember, I mentioned he's got Cortical Visual Impairment (CVI). This means his eyes are fine, it's his brain that has trouble processing what he sees and making sense. So there are exercises she will show us that will help strengthen his brain and it's relationship with his vision. I'm looking forward to this visit.
 
Christian's been very loose today, actually, for a few days now. I'm not sure what exactly it is but we've been concentrating on stretching his lower back more and some weight bearing, which seems to have made a difference. I don't know how to explain the changes and won't know the cause of the changes until I'm able to look back in retrospect. I'll keep you posted.
 
For now I'm enjoying being able to sit with my baby boy totally relaxed against my chest. It's worth the entire day. It's so...lemonade.

Relaxing in new jammies after a bath. Ahhh, no arching! Time for bed!

A New Look

Christian's Journey gets a makeover!
Why did I decide to undertake the task of spiffing up the website? I asked myself that about five times tonight while trying to juggle codes and widgets and gadgets and HTML. It's another language. Honestly, I like doing creative things so I had fun doing it rather than outsourcing the job (thank you to everyone who offered!).
And I'm finally done! Kind of. I'm still going to add a few things. Oh yeah, why did I decide to give Christian's Journey a makeover? I've been thinking about it for a few weeks and I've finally got the time (late, late, late at night) to fool around with website stuff, other than just blogging. Also, I've also made the time to start exploring the blogs of others and, man, am I impressed! I felt so inadequate with our little baby blog. So I'm hoping the makeover will launch us into blog toddlerhood.

I chose the new blog's "look" because of a few things. First of all, to me, it signifies a journey. Past the mountains you can see light beaming ahead. It reminded me of the light at the end of the tunnel...just over those mountains. I also liked how it seemed to be set around dusk. In the beginning, right after the accident, I felt like we were in the dark. It was just...dark. And I felt Christian was stuck in the dark trying to find that light again. Although Christian has a long way to go, I think he's coming out of that darkness and there's light now, not only in his eyes, but also for his future.

And the birds. If you've been reading for a while, you know the song Blackbird, by The Beatle,s is what I pegged for Christian and I blogged about it (Blackbird) to explain why. If you look closely next to the title, you'll see a few blackbirds flying toward the light.
Yeah, I read too much into a blog template. Yeah, I'm way over the top analytical. Yeah, I should probably not stay up so late messing around with the computer. But it's perfect for now and I just wanted to share why.

As for the little man that inspires this makeover, he's doing well! We're learning every day. We, as in Christian and his family. Right now I'm just trying to figure out what position is best for him. He's laying down most of the time on his back or side because this is how he gets the most movement. He swings his arms everywhere and feels his toys and blankie. He also tolerates his feeds better like this. But his tone (stiffness in his legs) is awful in this position. It's worst out of all positions.
But when he's sitting up in proper alignment, he looks awesome. He makes eye contact, he's involved, he looks around, and he has less tone. His body is so much looser. But, he can't seem to move around as much as he'd like. We've also started weight bearing in a standing position and added more weight bearing on his knees with the peanut ball. He seems to come alive when doing these positions. His look is different and he's less likely to get into tonal patterns like he does when on his back. It's a different Christian. So it's a balancing act, really.
I've said it before but I've been reminded again, you don't realize the benefits of HBOT until you take a break and then start again. THAT'S when you see the difference. He's more relaxed in his back, there is less arching in his upper back, more focus, and more movement in his mouth and tongue, not to mention more head control in a more upright position. And I've been going into the chamber with him for the first time! I actually enjoy this because I lay him down, I stretch him out, read books, bring toys to play with, he's so much happier! I wasn't able to go into the chamber before because I was pregnant so I had to sit outside and watch the video monitor. It was hard because sometimes he would cry and get really upset. Now that I'm with him, I can make sure he's okay and we can have special mommy and Christian time.
So enjoy the new website and thank you for reading this story as it is still being written.

Peanut Ball

Christian had a really good day yesterday and today! This is nice because he seemed irritable all week. Probably because last week was our first week back to craziness - appointments, therapies, specialists - after about 3 weeks of rest and relaxation...and no appointments! We pushed it a little too much last week, admittedly. So much so that I ended up getting sick, which is no good for anyone.

We're back to a new week and a little more organized. I've been focusing on making a point to stretch Christian's lower back really well. This has helped to loosen his legs and the rest of his body follows. We've also been bouncing on the stability (yoga) ball and our new peanut ball. Bouncing is really good for Christian and he likes it.

We've also started weight baring in a standing position and he tolerates that surprisingly well. He kind of just relaxes into it and looks around without moving into tonal patterns and getting stiff and arched. After we do the standing position, we take a break. During these breaks, Christian has started independently moving each foot and kicking from his knee. It reminds me of little flippers kicking while swimming. We do this in front of a mirror and he looks at his feet while doing it! This is so neat because you can literally see the connection between the input into his feet while standing, moving his feet, and him watching his feet in the mirror as they move. You can see the brain connection happening! It's amazing! I will get a video of this as soon as I grow a third arm.

Another new thing is that Christian is getting breast milk again! I've got extra so I want to do it for him. If I could have continued six months ago I would have, but I couldn't produce enough. So now he'll get at least one feeding a day of breast milk through g-tube. I feel like it's that much more I can give to him.

So here's a short video of Christian today crying his way through physical therapy. Don't worry! He's not crying out of pain. It's more of a whine out of stubbornness. But he is using his new peanut ball for tummy time. Notice his head control! It's getting better and better!

Photo Sharing - Video Sharing - Photo Printing

Miracle of the Day

Miracles.

I have never seen a miracle so vividly until July 8, 2009. It basically slapped me across the face. And since then I've seen so many. It's opened my eyes to this beautiful life and the miracle it really is to live and function every single day.

So I saw a family friend yesterday. He's the father of one of our friends and he introduced us to the world of cranial sacral therapy. He came in late one night while Christian was in the PICU and found his way through all the tubes and beeps and buzzers to lay his hands on Christian's struggling little body and tried to do his best to offer healing.

He is a neat guy. He's one of those who when you talk to him, you feel like you've learned something or gained some insight into the world that wasn't there before.

Last night we went to our friend's house for dinner and her father in law was there. He came over to see Christian and said, "He spends a lot of time floating. He floats between different realms. And he's able to see angels."

The statement was so simple, complex, adolescent, and beyond my years at the same time. But it gave me a sense of calm and peacefulness to envision it.

Then we had a conversation and he said he was having a hard time with balance and feeling overwhelmed and had to remind himself to find the miracle of each day. He was having a hard time finding the miracle of yesterday, but then he walked into our friend's house and there we were. Our family. We were a bunch of walking miracles.

How beautiful was that? Not that it was our family that was the subject of his miracle finding, but that he searches for the miracle in each day. So I thought...I wanna do that!

Yes, I've seen many big miracles and many small miracles along this journey, but sometimes I need to stop and remember that each day is a miracle for everyone in our family. Some days aren't easy and it's a miracle to get through them. Some days are full of rejoicing over something new Christian's done, Gabe's Silver Honor Roll (Yay, Gabe!), or that Manny and I are going out to dinner ALONE tonight for the first time in months (this is actually happening).

It's more than seeking out that silver lining. It's more than just being glass half full. It's taking into account that at least one thing out of each day came together to push us through to the next.

So yesterday's miracle is that I gained insight from a family friend.

Today's miracle? That's yet to be discovered when I get to the end of today.

Miracles I predict for the immediate future. (Can you really predict miracles or is this bad luck? Hope Not.)

-Getting out of bed before 8AM.
-More organization.
-A smiling, laughing Christian.

I will gladly receive these miracles. And not necessarily in that order.

Yes.

It was Christmas again today!

Well...it was Christmas for Christian today. This is really born from the generosity of my wonderfully amazing, out of this world August Moms and my procrastination.

See, the August Moms generously gave Christian a gift certificate to a great website for special needs, therapy, and sensory toys called Beyond Play.

Add to that - I barely got around to using this gift until right around Christmas! To my defense, I wanted the OT to go through the catalog and let me know what the best toys would be for Christian. So I waited for her to get back to me. But that was only two weeks. The rest of the procrastination is all me.

The toys have arrived!!!

This includes a Koosh Ball, Sensory Balls, toys that light up, vibrate, sing songs, toys for grabbing, and best of all...a peanut ball! You can see a sliver of it on the right. We have to inflate it with air and then Christian can use it. I will post a picture later of Christian using the peanut to get the best idea of what exactly they're for. But they're great!

Speaking of therapy toys, I finally got around to watching the last episode of Desperate Housewives. Man, did that hit home for me. It was the story of Lynette when she fell into the "what if" her baby was born with special needs. What special need was unspecified, but I was so familiar with almost every word that was spoken in that scene. Lynette was afraid and didn't think she could "do this." "This" meaning this life with a special needs child. There was an in home therapist stretching out the crying baby and Lynette says she doesn't know if she can do this with the therapy, and the equipment... I understood every word. My position was more of the character of her husband, Tom, who says something like, "Will this work? Maybe not. But it's what we're doing right now." The writers must have consulted a parent of a special needs child for that line. I couldn't have thought it or wrote it better myself.

So Lynette goes on to dream about this potential child. She dreams about this child in adolescents and then graduating college. Lynette wakes up inspired and proud of her potential child she saw in the dream. However, she wakes up to find out that, sadly, the baby didn't make it. And she's devastated.

This scene made me think about when I was pregnant with Christian. This isn't meant to be controversial and I'm not trying to make any kind of statement but I refused additional testing and screening during my pregnancy for things like Downs Syndrome and Trisomies, other than routine, because I knew in my heart that I was willing to accept whatever God would give me. I'm not against that testing. In fact, I think I got some of the testing with Lola anyway, just to be prepared.

That being said, I asked myself the hard question: If I had known Christian would be born with a brain injury or something similar, would I feel the same way?

Yes.

I answered it so quickly in my head without hesitation. This might be because I already know and love him and so I couldn't say anything otherwise. And this is very bias because I wasn't in that situation so I can only speculate. But, honestly, 100 times over...yes. This is what God has given us and I accept it. I accept him. And I would be devastated if I were to wake up, like Lynette's character, and it was all over.

2009: A Look Back

I guess it's a blogger thing.

I've seen it done a few different ways, but the idea is to summarize the last year using blog entries as inspiration. That's loosely putting it. Some bloggers use the first sentence of the first entry of the first month, some bloggers summarize, in general, some bloggers even include pictures! But I digress.

I sat down to participate in my blogger duty to recap last year. I thought this would be fun. I only started the blog in July to chronicle Christian's journey after his accident. So I was all set to briefly recap every month of last year starting in January. That is part of Christian's life, after all.

As I was going through pictures (because I wanted to include his cutey, smiling, face) I wanted to pick out pictures from St. Paddy's Day and his first Easter. I couldn't do it. It was way too emotional for me and still is as I sit here typing. I still miss my baby every single day with all of my heart and soul. So a recap of the entire year with pictures of Christian from before the accident is not the kind of blog I'm ready to write just yet. This kind of thing just sneaks up me sometimes and there's no telling when and where it will happen. I can tell you that we took some amazing trips to Michigan, Disneyland, and Key West.

That's not to say that I didn't enjoy going back through the last six months or so to recap Christian's progress thus far.

So here goes...

July: We have a long way to go. But I believe in my heart that Christian will come back to me. With God all things are possible. (These are actually the last sentences of the first blog I wrote about Christian's accident. I believed it with all my heart then and I believe it with all my heart now.)

August: This week will be the end of our hospitalization journey. I'm so proud that we are going home. (This week was significant because it was the last week of August and we were about to leave Hacienda, the step down facility, where we had been for a whole month away from family and friends.)

September: CHRISTIAN CRIED TODAY!!! (This was so significant. I prayed and prayed to hear Christian cry. He hadn't made a sound for 6 weeks! He started out with a whimper, which soon turned into a few more whimpers, and now we have a boy who will let you know when he doesn't like something every time by crying. I wasn't the only one who prayed, everyone did. One time in church, Christian was whining and crying and Manny wanted to take his valve off. I said, "Don't take that off! Many people prayed for every one of those cries. We're leaving it on!")

October: We have a tradition. (This is our yearly tradition of going to Willcox for apple and pumpkin picking. It was the first "normal" activity we took Christian to do.)

November: I could write a book about why I'm thankful on this day and for what. (This sentence was referring to Thanksgiving. It was the most thankful Thanksgiving I had ever celebrated. Christian also had such a good day that day. Those ALWAYS stand out.)

December: Christian has officially joined his big brother, Gabe, as a member of the Big Brother Club! (Obviously this was a significant part of December for our household when Lola was born. It was the first time I was away from Christian and left him in the hands of trusted family members. He did great and everyone took such great care of him.)

Those entries, in retrospect, don't even seem to remotely recap the last six months. And July, August, hospitals, and Hacienda seem so far away - like years away.

I scanned over some of the other blogs - first day of HBOT, getting our own HBOT chamber at home with the help of wonderful friends, Christian gaining head and neck control, holding his head up in therapy, grabbing for toys, moving his arms, getting his feeding button, laying down foundation for this new way of life, paving this new road for our family. It's all so much in such a short period of time that feels like years have gone by.

Which reminds me of the movie, "Up." I just saw it and was taken by how much I related to the message. Or really how much I needed to be reminded that it is the journey that makes us who we are and not exactly getting to that final destination. Usually, that would be so cliche. But at this present time it reminds me to open my eyes and enjoy and appreciate this wonderful, frustrating, joyful, painful...beautiful journey. I am so honored to be Christian's mother. He is the bravest, strongest little boy I know and I am inspired by how hard he works every day.

So plans for 2010...we have so much in store for just the first six months! I couldn't wait for today because offices are open again and I can start making appointments! Just throwing a few things out there, of which I will elaborate on a later date- More HBOT, Napa Center, Botox/Phenol injections, and trache decannulation! Probably not in that order.

Forgive me because I so did NOT follow any kind of blogger format for recapping last year. But this way was more fitting.