NAPA Time

We just completed two days at NAPA and Christian is beat!

I can't even imagine what the three week program will be like.

DAY 1:

This therapy helps with strengthening Christian's midsection so he can work on head control.

"Not sure about this, but I'll hold my head up a little."

Standing Exercises: This helps bare weight on Christian's joints. Weight baring is so good for his body. It helps keep his bones strong, and the standing position aids in digestion. Christian really likes being in this position.

Daddy helping the PT get Christian into a standing position.

"All this work is tiring me out!"

*yawn*

DAY 2

Because Christian's arms are weak and cannot bare too much weight on their own, immobilizers are placed around his arms in order to get better weight baring in his shoulders and wrists without his arms collapsing. And it really helps with head and neck strength!

Just to let you know, in this picture Christian is really mad. I'm talking crying, tears, snot, the works. That was definitely a first. But I know he wasn't in pain. He was just being challenged, which is exactly what he needs.

This is a therapy that uses weights and a pulley system for children to essentially "weight lift."

"Day 2...I'm getting the hang of this!"

"Look Mom, I'm a big boy!"

"All that work...I'm so tired....let me tell you about my day, Daddy."

So far it's been a good visit. This is the view from where we're staying. A friend of the family is allowing us to stay here while we get Christian his therapy. We are so blessed to have people in our life that make this journey just a little easier.

If it's nice tomorrow, we'll probably take the kiddos out to the beach. We haven't yet because Christian is so worn out at the end of his therapy. It's supposed to rain tomorrow, but maybe Sunday before we leave we'll have some beach time. I want to put Christian's feet in the sand.

It's been a nice, short trip, our first since Christian's accident. I was nervous about the trip here, but aside from some horror-movie-like fog, we made it here safe and sound and without too much protesting from Christian. As a family, we've always loved to travel and obviously we've been pretty home bound...until now! Just another step in our journey...just another first of many.

Hopefully, we can return for the full three week program soon. I think it will really help Christian to be pushed and challenged. He seems to really respond to this type of therapy. For now, though, he is resting, probably sore from activating all those muscles he hasn't used in months.

He made it through yet another challenging couple of days.

I'm so proud of my little guy.

A New Chair and Other Comfy Things

Today was like Christmas!

Christian FINALLY got his chair. It's really more like a special needs stroller with bells and whistles.

Yup, it's blurry (stupid camera phone). But this picture was taken at the final adjustment fitting. Christian was really irritable today (not sure why, but I'm pretty sure it's a toss up between teething and tummy trouble). He was even a bit irritated when I put him in the chair for the first time. But then he settled right into like it was a recliner. I felt like it was Christmas. Admittedly, I was probably a bit over caffeinated today, but still. These are the kinds of things that seriously make my day. And look at that huge tray he has! Now all of his toys are easily within reach without being rigged.

That ever flattering, overly bright fluorescent lighting in the room was quickly avoided by the canopy. Loved that! And Christian is sensitive to bright light so a good canopy is serious business. But there he is above, no arching, no extending, no protesting.

Here are some pictures of it without Christian.

Why is this so important? Because this means freedom for us - both of us.

Let me explain.

Christian doesn't have core strength, meaning he doesn't have strength in his back or stomach muscles to keep his back held up and straight. It's very difficult to get him in a comfortable upright position because of this and that is why these seating systems are so important for him. Good positioning changes everything! It changes his mood, his responsiveness, his eye contact - all very important things. Not to mention it keeps Christian in good alignment, which will avoid serious problems later.

So what does that have to do with freedom? Well, prior to today we used a jogging stroller. It was fine but Christian wasn't terribly comfortable. I propped him and positioned him, but he would only tolerate it for about 30 minutes at a time. So everywhere I plan to go I have to ask...is it worth it? Should I carry him in and out because he'll be happier sitting on my lap? If I put him in the stroller, how long do we need to be there before he starts getting uncomfortable?

Now, we get to go. We get to go places. I like to take my kids places, whether it's to Target (Mommy's fave) or the park. From the minute I put Christian in that chair, I knew he was comfortable. Now we can go places...even to the park...and I know he's comfortable and can enjoy himself. We can do so much more! So this chair is...freeing. If that makes any sense.

Something else that makes Christian comfortable...

Again, Christian is sensitive to bright light. And we are in abundance of that in Arizona. So the vision therapist sent us some strap on shades. Christian used to cry on the way home from picking up his big brother because the late afternoon sun is always on his side and always in his face. He would cry the whole way home. Not anymore! The sunglasses seriously make a difference. Let's call them magic sunglasses!

And speaking of comfy, I've been wanting to post a picture of where Christian sleeps forever, just in case anyone was wondering. And when I walked into the room today, it was overcast outside which made the room darker and made his lights stand out even more. It looked pretty cool so I thought I'd share his digs.

He still sleeps in the crib he slept in when he was 3 months old. It's raised all the way to the top so it's easier to reach him. And, of course, the side railing is always up when he's there. I purchased some LED Christmas lights on clearance after the season was over and he loves them. He stares at them and reaches for them every once in a while. You'll notice he's got a ton of visual stimulation everywhere.

So today was like Christmas! Only the waiting for Santa to come on this Christmas Eve lasted 8 months! But we're so happy to have his new stroller. Now we can go places! Starbucks better have Mommy's Iced Latte ready because we have a new stroller and we're on our way!

Candles for Christian

"Light up the darkness." - Bob Marley

We're beginning a new fundraiser!

Candles for Christian

Christian has made so much improvement and thanks to many of you, we've been able to get Christian nontraditional therapies like HBOT and Cranial Sacral Therapy that continue to help Christian in so many ways. We're looking to continue the healing by trying some additional therapy programs. These therapy programs range from an intensive therapy program in California to Anat Baniel Therapy in Colorado.

In fact, next week we're leaving to visit southern California. We had already planned for a small trip at the end of February and I thought since we'd be there anyway, why not check out Napa Center? So they were nice enough to arrange two days of therapy so Christian could try the different therapies they have to offer. Kind of like a preview for the bigger program. We're so excited.

Of course, all of this costs money. I've always said since the beginning of this journey that we would get what Christian needs, no matter what. So we're raising money to get Christian therapies that may otherwise be out of reach.

You can find the online store in the side bar to the right. The pictures in the online store are not that clear so I posted another picture in the sidebar of what the candles look like close up. The candles are from the Love That Smell Candle Company and they burn for 50-70 hours with wicks that are lead free. They come in 8 oz. jars and they are $8 each with free shipping. There are several different scents and on each candle there is a picture of Christian and a quote:

"Light up the darkness." - Bob Marley

To me, this quote really encompasses Christian's journey of finding his way out of the darkness. It's actually the journey of our whole family. The grief and sadness can be very dark, the journey is finding our way to the light. And despite that darkness that surrounded us last summer, we have found light again in healing and in the love and support of others. It is our hope that these candles can be a reminder to everyone that even in the darkness, there is light.

Thank you for your unwavering support!

Four Walls

I'm pretty competitive in nature.

But I was never a competitive baby mom. Meaning, when my kids were (and are) babies, I was never concerned with whether my kids were walking first, crawling first, cutting teeth early, first words, etc. This came from my first born, Gabe. Through labor, the doctors tried to rush him. But in the end, he came on his own time and when he was ready, he was ready. That became the pattern for Gabe through his younger years. He would be slightly behind until the very last minute and then he'd catch right up just in time.

Thus, my parenting motto when it came to milestones was that they will come in their own time. Very...flowery.

Then things changed. Now that Christian's milestones have all together been thrown out the window, the definition of everything has transformed. Actually, there is no definition. It's - it will happen when happens if it happens. The only thing close to a definition of what to expect with milestones (if you can call it that) is comparison with other children with the same issues. That's it! There's no other protocol.

See, this is unfair because no single brain injury is the same. Not a single one that I've found! Some children walk but don't talk. Some talk but don't eat. Some eat but don't walk. And on and on. So how can we, as special needs moms compare our children?

We can't. But we do. It's makes me crazy, but I do it. I admit it. It's so unrealistic. Sometimes comparing is great because you can gage what to expect with your child for which there are no parenting books written. But even that is silly because another child's path is guaranteed not to be yours in this world. It could be similar, but nothing to place bets on.

But we still do it, don't we? Why isn't my child doing that yet? Ugh. It makes me crazy, especially because just recently another family's blog came across my life-desk and knocked me for a loop. Well this family had their happy ending and their child is doing just fine. Why couldn't that be our story?

So I sulked. And I wondered why not my baby? And every time I hooked Christian up for a feeding and plugged in his tube, I thought to myself, "They don't ever have to do this...They won't ever know this."

I had a little pity party. But then something hit me. I have occasionally wanted what others have had in life. Yes, me. I have occasionally coveted the blessings of others in my past life maybe a time or two. Don't make a big deal of it.

But, I can say with 100% certainty that looking back, those blessings I saw others receiving that I so wanted for my own life, they came later and in different forms and, most importantly, AT THE RIGHT TIME. It has always happened this way and I can only recognize that in retrospect.

As soon as I "remembered" this tid bit of information from past experience, I accepted that these are our four walls. I mean I've accepted that this is what our life is now, but it's easy to loose focus. Especially, when you see another child getting everything you want for your child. But these are our four walls.

What do I mean by four walls?

Well, for the past few days, while attending my pity party all by myself, I kept hearing a voice saying four walls behind every thought I was having. I know in church, the pastor has said that God talks to you all the time. You just have to listen.

Four walls.

We have a new foundation. The concrete has been poured and settled and now it's time to solidify the four walls that are to keep us in from the rain. And these are the four walls we've been given. We can choose to build this house with doubt and fear or we can decide to strengthen these four walls so they can shelter us from the storm.

What does that have to do with comparisons? These four walls are our four walls. This house is our house and this journey is our journey. We don't want to live in somebody else's house. And even if we did get to live there, it would never truly be ours.

So I'm thankful for these four walls. They're different. Different than anyone else's. There are no comparisons here. Brick by brick these four walls will be built up high and strong. And just like these walls, bit by bit Christian is being built up to be strong again.

Life lesson learned (or re-learned) this week:

The blessings and healing will come on their own time. Just like Gabe did. In the mean time, we have a house to build with walls to strengthen so we're good and ready to receive those blessings. And everyday is a blessing here.

Feel the Love

!!!Happy Valentines Day!!!

I'm not a die hard romantic or anything, but it's fun to celebrate LOVE!

And I'm sure my kids loved it when I propped them up, outfitted in Valentine's Day attire for pictures. It's their favorite thing, as you can see.

"Oh no, not this girl again."

"Hey Lola, how about we be quiet for the picture, k?"

We were also able to FINALLY get the delivery of Christian's tumble form chair and bath chair that we ordered back in September when we left Hacienda. But Hacienda botched the order (surprise!) and, long story short, we got it Friday. The stroller is still en route, whatever that means. It's ordered, approved by insurance, just waiting for it to actually get here. Grrr.

But here's a picture of Christian in his new red tumble form seat playing with his silver pom pom.

And...hmmm hmmm...notice anything different?

I have to say I am so grateful to get that shower chair. I wish I'd taken a picture so I could show it to you, but it's kind of like this one. It's the same idea, but the one we have takes up less space and is less bulky looking. Anyway, when you have a special needs child, or any child for that matter, things need to become more efficient, like, yesterday.

I've been giving Christian baths by sitting him up in his baby bathtub. It works well enough but the hoisting him in and out of it was hard and stressful for him. He hated it. Using the shower chair was a different story all together. He wasn't stressed, it was easy, oh, how I love easy things! I have such an appreciation for things that make my life easier.

Another observation I made during the shower chair experience was that Christian has really been moving. Sometimes it's hard to see, especially when he's on his back. But he was sitting at an incline in his shower chair rolling his head back and forth, I actually had to keep an eye on the child. He used to just lie still with his head cocked to the right. But now he's turning into a little wiggle worm. I mean, by no means is he rolling off the chair, but he's moving enough so that I have to keep one hand on him at all times.

And just because it's so cute...

Feel the love!

Second Opinions

THANK GOD FOR SECOND OPINIONS!!!

Let me back up...

In December we visited an orthopedic surgeon about different pops I heard in Christian's legs. I thought it was his knees, PT thought maybe it was his hips, so we x-rayed.

When we x-rayed, we went to a third party x-ray office. They determined that the x-rays showed "possible hip dislocation but x-rays were inconclusive." At the time I thought, "Okay, just pop those hips back in."

Hips are not like other joints you can "just pop back in." It's a serious and painful surgery. It's a huge deal. So the orthopedic surgeon, we'll call him Dr. H, suggested we cut his adductors immediately which would land him in a lower body cast for six weeks.

Mama Bear was not entertaining that idea. So we looked into Botox in the adductors, I discussed other procedures with another mom, but I kept wondering about it. Dr. H said Christian's hips were already 50% or more uncovered, or out of the socket. Dr. H. said he didn't think Botox or physical therapy would be able to make any difference. Surgery was really the best option for Christian at this point and we should do it yesterday.

50% or more? And in six months? It just didn't make sense in such a short period of time. And Dr. H never ordered a second set of x-rays. He made the determination for surgery off the "inconclusive" x-rays.

So I asked Christian's PT, OT, and EI lady and they gave me suggestions. I wasn't going to give it another thought but curiosity got the best of me and I called and made an appointment. I could get Christian in within a week. And, besides, I wanted to make sure we were putting the Botox in the most needed areas of his body. We didn't make it to the first appointment last Tuesday because I was sick and they were able to reschedule right away for today. All signs pointed to go.

The new orthopedic surgeon, we'll call him Dr. N, walked in. He was really nice and laid back and had an intern with him. He asked about Christian's history and I started to tell him, "Christian nearly drowned in July of last year..."

He said, "I'm sorry."

It came out of nowhere, but I felt a knot in my throat and I had to overt my eyes away from him. In moments like this I find that if I just keep talking the knot will go away.

He examined Christian and remarked that he was actually impressed with his tone and range of motion. Just by the examination and how wide he could get Christian's legs spread, he determined, "Adductors do not need to be cut at this time."

Then it was time for x-rays.

We were led back to the examination room after x-rays and waited for the results. I said a prayer out loud. I prayed that God would let us win this battle today. We don't get to win all of them every day, but this one...please?

Dr. N walked in with the intern and said, "I'm glad you came today."

Uh, oh.

He then proceeded to tell me that Christian's hips were 100% normal for his age. They are 0% uncovered. No dislocation.

CHRISTIAN'S HIPS ARE 100% NORMAL FOR HIS AGE!!!

I said, "Oh, thank God!" out loud. Twice.

Dr. N. went on to explain what this means to the intern and they did measurements on the x-ray and talked about what is within normal range for an 18 month old. I asked about his professional opinion about Botox and where it should go and he said, "I'm not even sure he needs Botox as long as you keep stretching him." He prescribed a special pillow for Christian to sleep with and asked to see him back in six months.

Christian's hips are normal right now. It might not be that way in six months or a year (although I have full belief they will be fine). But today...

...today this battle was won.

Brother and Sisterly Love

These moments are hard to capture because I'm just really bad at capturing them. There's no other excuse. I'm usually in awe of my kids or new things they're doing so I just sit and stare until a little voice inside me says, "GRAB THE CAMERA, DUMMY!" And by then, the kids are over it.

But I was able to capture some brother and sisterly love between the babies.

Christian and Lola

Holding hands the way Christian knows how.

...And Lola goes for an uppercut to the throat!

(Seriously, we have to be careful because Christian has had his fingers sucked on by getting his hand caught in Lola's mouth and he has poked her in the eye a few times.)

I know this seems like more of the same, except from a different angle. Kind of. But what I'm really trying to capture is that Christian "feels" for his sister. It's the neatest thing to watch and someday I'm going to get a good video of it. And post it, too.

So, here, Christian is "feeling" for Lola the way he knows how to do it.

And here's Christian in his swing. He thought he'd just go ahead and fall asleep there.

P.S. He's huge.

It's blurry but I caught a big, happy Lola smile!

So there you have it...I'm a proud Mama.

Appointments

Thank God Christian has had a better week. He's back to normal, not irritable, waving his arms around, nice and loose. It's such a relief, a deep breath. He's also been moving his head back and forth more, rather than keeping it in one position. And thank God again! We're finally making headway with his tone in his lower half. Finally we have some relaxing in his legs and I'm happy to report it's been consistent, not just a day here and a day there. After five months of no changes in his legs, we have change. Just another lesson in patience and putting the pieces of this puzzle together.

Christian also visited his pediatrician for the first time since September. I was a little worried because when we went to the Botox consult at the neurology center a few days ago they weighed him and they said he weighed in at 24 pounds. That didn't make sense to me. And we always have to weigh him the nontraditional way - me picking him up and getting on the scale and then just me on the scale equals Christian's weight. There's all kinds of room for error here because you have to rely on the math skills of the nurse. Not that nurses can't add and subtract, but when we're trying to do a bunch of things at once, subtraction all of the sudden turns into calculus and it's like...uh, what, how do you subtract again? I'm speaking for myself so I can only imagine what it's like for a nurse. Point being that I was thinking 24 pounds didn't seem right.

That's because it wasn't. Today he weighed in at 27 pounds and his length is 33.5 inches. He's a big boy! And I'm so happy he's putting weight on! The pediatrician seemed happy with his numbers. It's one of the things that is so hard to pin down because, yes, he's still throwing up, but no where near as much as before. And sometimes not at all. I've increased his calories just a tad to where they're actually supposed to be. This is so important because Christian needs calories so his brain will get better and so he'll continue to thrive. So my boy is solid, we knew that just by looking at him but it helps to have the numbers back it up.

We also had the IFSP (Individualized Family Service Plan) meeting. This is a review of Christian's progress and medical necessity. It's basically a meeting to track Christian's medical need in order to justify his services to the state. It's a meeting from the Early Interventionists and the vision specialist joined in, as well. Christian has a really great team and they're all super helpful. The vision specialist will be coming every few weeks to help with exercises to improve Christian's vision. Another visitor, but a very welcomed one. Speaking of vision, we've been using the baby shades in the car. When we pick up Gabe from school in the afternoon, the sun is always on Christian's side and in his face on the way home. He would cry all the way home. Now he has his baby shades - they're sunglasses with a strap that goes all the way around his head - and now he's quite content. I love when stuff works!

Another appointment...yes, another appointment. We saw Dr. Peters for Cranial Sacral therapy and while Dr. Peters was working on Christian's pelvis Christian lifted his leg all the way up and knocked Dr. Peters' glasses off his face! I asked him, "Are you doing that?"

He said, "No, that's him...I should have removed the glasses before I started."

Next week we'll be getting a second opinion on Christian's hips from another orthopedic surgeon and we're still waiting for authorization for the Botox injections. I want a second opinion, not because I doubt the doctor's opinion or credentials. It just bothers me that there wasn't a second set of x-rays taken to make sure everything was accurate.

And we're getting a stander! Yipee! I can't wait because just by the standing exercises we do here at home, I've seen a difference with him. It's like he felt his legs for the first time. This is when I started to see his tone change and I also started to see real movement in his feet and legs. So I'm excited to see him in his stander and I'm excited to see how he'll react.

It's been a crazy week of appointments and phone calls. But it doesn't matter. As long as Christian is comfortable and happy, bring on the craziness!

The Power of Kindness

Thank you everyone who left comments on the blog and facebook wishing us a good week after I unloaded all my angst and frustration on to last night's entry. It really does mean a lot to know there are so many people in our corner, wishing us the best and praying for healing. Kind words can go a long way.
That brings me to an organization that I absolutely love. It's called The Ben's Bells Project. It's an organization named after a little boy named Ben who passed away in his mother's arms. She was so grief stricken and was in so much pain that the kindest gestures were so big to her. And nobody even knew how much it meant to her to hear kind words at that time. So to pass that along, and to help ease her grief, she started making bells. These bells were made up of ordinary clay pieces painted with ordinary paints, but put together, they became extraordinary.
People would get together to paint these bells and then they were distributed around our town, but never sold. The idea was that when a person finds a bell, maybe hanging from a tree in a park or at a bus stop, they are aloud to keep the bell forever. The message on the bell reads:

You have found a Ben's Bell. Take it home, hang it in your yard, and remember to spread kindness throughout our world.


"Remember there's no such thing as a small act of kindness. Every act creates a ripple with no logical end." - Scott Adams

This is the letter I wrote to Ben's Bells recently...

Hello!
I was introduced to Ben's Bells when I was attending the University of Arizona. I was part of a group that organized a Ben's Bells night and you came to our building and we painted pieces of clay that would soon become bells. The story of little Ben stuck with me as I have a son, too. The experience I had that night also stuck with me. It was calming and cathartic and something so positive, it made an impact on me and I never forgot it. I mostly remember the story behind Ben's Bells and how you told about how overcome with grief you were after loosing Ben and nobody knew it. That's why little acts of kindness were so important to you at the time. I would soon fully understand what this meant.
About four years later, after the birth of my second son, Christian, I accompanied my husband to the park so he could play basketball. I didn't want to go because it was an early Saturday morning but he convinced me to go. We walked to the El Rio basketball court. As I walked with him, I glanced to my left and what did I see? A Ben's Bell!!! I was so excited! I ran over to it, but for a second I felt bad for taking it and thought maybe I should leave it for someone else. My husband laughed and told me to take it because I FOUND it and that was the point. So I reluctantly took it and hung it in my living room.
In July of 2009 my second son Christian crawled out the doggy door and nearly drowned in our back yard pool. He didn't respond to my attempts at CPR but was finally brought back to life on the last attempt in the emergency room. That first week in the PICU, I truly experienced what you explained when you lost Ben. I was so overcome by grief and sadness. I would go to the store and think - nobody knows how sad I am right now. Nobody knew the pain I was feeling. And anytime someone would display the smallest act of kindness like opening a door or smiling at me, it meant so much more than they ever knew.
Christian is doing well now. He has an anoxic brain injury due to the lack of oxygen to his brain. He has to relearn everything and he has a long journey ahead of him. We have so much faith and spreading kindness means so much more to us than before. The Ben's Bell I have is now a prized possession and reminds me everyday about that first week after the tragedy and how far we've come from that time. It also reminds me that you never know the personal story, pain, or tragedy someone else is carrying and how much a simple act of kindness might mean to them.
Thank you and God bless.

I am always so touched by the kind words that people leave as comments on this blog, facebook messages, phone calls, and emails. It means more than you'll know and you'll never truly understand just how much it means until you're on the other side of tragedy. I hope you'll never know that side.

In church on Sunday the pastor spoke about being kind. You don't know the personal struggles of the person sitting next to you and you may just have a chance to make a profound difference in their life at that moment if you are simply nice to someone. It could just be a simple "Hello," to you, but it could be the world to someone else.

It was to me.

You all have been part of Christian's healing and part of our healing as a family. So I thank all of you for your kindness and understanding.

Pass it on.