New Tools

I would love to take credit for every neat idea and learning tool I put in front of my kids' faces.

But the truth is that other parents before me have paved the way.

I'm a stealer. I mean I happily steal the awesome ideas these parents have passed along . I hope they don't mind because I've come across some really cool things lately.

So I saw this idea on our friend, Suzy's, blog. It's a way of seating Christian that's different from our usual positioning.

This was our version of a seated position in a corner with one leg bent in. It wasn't the best rendition, I'm sure, but we tried. Before Botox, Christian's poor little chicken legs wouldn't have stayed bent like this. They would have straightened right out. The original idea is to have one leg bent in but I thought I'd take advantage of Christian not straightening out his leg, so I bent the other one up so we could get a good heal stretch on his right leg. I think he did pretty well. He didn't tip over and he tolerated the position for some time.

For Christian's birthday, we got him a little red bench. At Napa in California, they did a lot of bench work with him. We've been working on him bearing weight in his elbows so he can prop himself up. This is the closest we've ever gotten to sitting unsupported (meaning not supported by me). He actually really dislikes this position, by the way. So to get him to stay in it for long enough for me to snap a picture is a real accomplishment.

"No, Christian, you do it like this!"

Another really great tool I picked up from Suzy's mom is this website, SENSwitcher. It is a website with applications that strengthen visual acuity and performance for special needs children. It is the neatest tool! Christian has Cortical Visual Impairment (CVI), and although his vision has improved and continues to do so, it is important to keep up his vision exercises so we see even more progress. Greater visual abilities can also lead to greater head control, more awareness, more communication, and more cognition. Here he is doing the exercises:

It's the coolest program. You can change to single shapes, lines, movement, and you can even adjust the background and foreground colors. Contrasting colors are really effective with getting Christian's attention. As you can see here, we chose yellow background and black foreground. You can adjust the time of the animation and there are different levels, too.

This is how we positioned Christian at the computer...

We put him in his stander and just wheeled him right up to the desk, to which he was a perfect fit. By the way, the visual on the computer is the program using white background, black foreground and objects (like the arrow shown) moving around slowly from side to side.

And for the rest of the day he seemed more visually stimulated and responsive. This is saying a lot because we've have a few tough days with him.

So thank you to those who let me "steal" their ideas. Feel free to steal from me anytime!

As parents, and not just special needs parents, we are our best resource.

Europeds Blogction!

The Europeds Fall Blogction is coming soon!

The Europeds Blogction will be held Tuesday, September 14th through Friday, September 17th, ending at 8PM, Arizona time.

We are now accepting donations for the blogction. If you are crafty, make things, personalize things, have an etsy store, like to bake, or have a service you'd like to donate, please contact me. We're accepting donations for jewelry, chocolate and sweets, gifts/giftcards, baby/kids stuff, and services.

My email is gabriels_mama@yahoo.com.

This blogction will directly benefit Christian. We have an upcoming intensive therapy trip at Europeds in Pontiac, Michigan. We've saved enough for the overall cost of the trip along with the physical therapy program, however, there is a small portion that is out of pocket and not covered by insurance that includes physical therapy with Suit Therapy. This is what we're fundraising for!

**Click here for an example of our last blogction.**

Europeds!

Okay, so I know I said we were taking a break from appointments a couple of posts ago.

Let me explain what that means - we are taking a break from all the extras like HBOT and cranial sacral therapy. We still have our routine appointment every now and then, but they are far from every week.

But I guess that all changed when I actually typed it out on the blog. After putting it out there, the appointment fairies all of the sudden started fluttering their wings. As such, we have our regular pediatrician this week to go along with our orthopedic doctor visit.

There's a reason we're seeing these guys this week - multiple reasons.

We've made the decision to go to Europeds...in four weeks!

Europeds is very similar to Napa in California. It's pretty much the same type of therapy. I had heard about Europeds, I don't remember where exactly, but I started researching while researching for therapy programs.

I do want to say that I still love Napa! I really do. But at this point, Europeds is attainable for us. Napa would have to wait until next year and the logistics of Europeds just fits for our family right now.

Europeds was the first of its kind to bring the intensive model therapy to the United States from Europe. It's affiliated with a doctors' hospital and is a nonprofit. I was really impressed with their customized programs. Christian will be attending a two week program. At the end of the program, there is a customized plan of therapy with pictures and instruction on how to continue the therapy at home.

One thing we do know is that with only just one week of intensive therapy, Christian gained greater head control and is able to hold is head up midline for a longer period of time. He started this after Napa and still has it and his PT has commented about it, too. We saw good, solid changes in Christian so this is the type of therapy we're going to pursue.

This is why we're visiting the pediatrician and orthopedic doctor this week. We need recent hip x-rays to determine the course of therapy for Christian. I'm praying there has been no change and that Christian's hips are still okay but I'm prepared for news that says otherwise. It's just how it is with these kids. We also need to get fitted for new splints for Christian because he is a giant and his splints have worn out their welcome, so to speak.

Wow, maybe it does sound like we have a lot going on, but to us it's just normal, I guess. Some parents travel for their kids' soccer or cheerleading tournaments, we travel for therapy. Same story, different plot. We're all just parents trying to make our kids happy.

The countdown begins! Europeds, here we come!

This and That

I have a little of this and a little of that to talk about tonight. I'm not sure any of it will stream together to make sense, but here goes.

Last week we met with Early Intervention for our IFSP meeting. This is very common for special needs families of all types. It's a written out plan setting goals for Christian to achieve. I already don't like that. I threw goals out the window a long time ago. Honestly, IFSP's are documents that justify to the state why Christian needs the services he needs. So we dedicated about three hours to the whole thing. It was a long three hours.

We also had our pulminology appointment last week. "Pulminology?" You ask. Yes, this pulminology appointment is about six months in the making. Why? Because initially Christian had the appointment back in April to talk about decannulation (taking his trache tube out). Well, we all know what happened - he successfully decannulated himself! And I'm happy and proud to say we haven't looked back. But, I still felt we should do a "case closed" type of appointment so his pulminology doctor could see him, say okay, and we'd be on our way.

Well the initial appointment was rescheduled. The problem is that there is a two month wait to see this doctor. At the time I was like whatever. It isn't absolutely necessary anyway. Well over the last six months the appointment has been changed, missed (by yours truly), rescheduled, and so on and so on. I finally just asked if I could have another doctor just so he could see Christian and we could essentially "close the case."

I was late to the appointment. I was getting so good at being on time, too. I was so late, they asked me to reschedule. I asked if I could just get a nurse to come out and see that he was doing fine and did I really have to come back? Really?

The nurse came out, saw the famous self-decannulating Christian, and determined he was just fine. She said to call if there were any problems.

I know that little story was terribly interesting and you all were on the edge of your seats, but the bottom line is that as far as pulmonology goes...CASE CLOSED!!!!!

Last week we also attended an event at a new store in town called Nurturing Nature. The event was featuring Ben's Bells ornaments and I love, love, love this organization and I blogged about it here. I was so happy to have met the founder of Ben's Bells, Ben's mom, Jeanette, for the second time. The message behind Ben's Bells is to spread kindness because you never know what someone else is going through. As much as I may curse the accident, I am ever so grateful for the gift of clarity. It's a gift because I see things in such a different light.

As for Christian...his legs have responded really, really well to the Botox and I'm so glad we made the decision to do it. We can now bend his legs at the knee with very little effort. And they even stay that way! He doesn't necessarily need to straighten them back out.

We still have no throw ups! Yay! This is like a major deal in this house hold because him throwing up was a major part of our life.

Christian has been irritable and not himself lately but we're going through medication adjustments and changes and when that happens, we can't do anything really. We've been through medication adjustments enough to know the drill. And because adjusting medications is not an overnight process, we're in for a few weeks of...meh. More on that at another time.

We also have a few other things we're working on, one of which might include a trip to an intensive therapy program. More on that at another time, too.

Even though we're still battling seizure crap and medication troubleshooting, at least we've crossed off trache tube, throwing up, we've had ZERO hospitalizations and barely a cold, and we've conquered high tone in his legs for the time being.

Seizures, you're next!!!

A Step Toward Something Bigger

So in my last post I was talking about Something Bigger.

Well, I finally made the decision to take a small step toward that something bigger.

When Christian's accident happened, our local media really left a bad taste in our mouths. We weren't interested in talking to anyone and allowed the PR person for the fire department to do all our talking. But there was some misinformation out there about Christian being found at the bottom of the pool, which wasn't true, and a few other things that really aren't that important to the average reader but it's our story so it's important to us.

When Christian was transferred from Northwest Hospital to University there was a news crew that filmed the EMT's taking Christian out of the ambulance on a stretcher and rushing him into the hospital. They also got footage of me going in after him. It all felt kind of slimy and invasive that they'd be waiting there for us almost ambulance chasing.

We were asked to give our story several times and we turned it down just because of our not so positive experience. And things were emotionally very raw for us, so who wants to give an interview in that kind of state? So we declined.

Until recently.

As I've posted, Lola was enrolled in ISR swim instruction. Our awesome instructor also teaches the children of a local anchor. Our instructor shared our story with the anchor, the anchor read this blog, and wanted to do a story. She emailed me about possibly doing the story. I thought - Is this our something bigger?

I was nervous. Really nervous about it. In fact, I had to think about it. AND this was right smack dab in the middle of the Anonymous Poster stuff.

So I thought, Can we really handle this? Why open our lives up to this? We don't need this.

I asked God what to do. And then I got an email from a friend who follows Christian's Journey. It explained how much Christian's story had inspired her and helped her through her own journey with her son. I read the comments, I got facebook messages, about how much of an inspiration Christian's story has been to so many people.

Talk about something bigger.

I really believe in listening and listening very carefully when God starts talking, if you haven't already noticed.

I thought maybe this can make a difference. Maybe Christian's story is bigger than our little family. Maybe it's meant to help others. And we want to help others, we wanted to pay it forward. We got help, we are still getting help. Why not give it back?

So I decided to say yes.

A lot of people were worried for us. I think behind their worried looks they were wondering if I was crazy. They were worried we'd open our families up to...well, you know. I was worried, too. But then I thought about it and our family is tough. Our family has gone through hell. We can handle this if it means we might touch others or inspire others or alert others.

Over the last three weeks Kimberly Romo, the morning anchor at KGUN in Tucson has been working on our story. She did such a great job and really made sure I was okay with everything.

I didn't tell anyone when it would air. I casually mentioned that it might be happening at some point but I didn't tell anyone to set their DVR's. Mostly because I wanted to see it first. Silly, I know. But I certainly didn't want to publicize something I wasn't proud of or couldn't stand behind. I can stand behind this.

So here's a little step in our something bigger...



A few things...

The eating footage isn't the greatest because Christian was about to nap. In fact, he did nap right after everyone left.

At the end of the footage, Kimberly Romo mentions how I am inspired by others who've found joy after tragedy. This is really for all of you special needs mommies who have been my example. You've shown me how to find the rainbow after the rain. Especially, Heather, if you're reading, you and Sam were in my thoughts when I said it.

I was asked if I wanted to start a support group. I said yes, but not just for near drown children. I'd like to start one for brain injured and special needs children in our local area. Just to clarify.

Something Bigger

Focus is an easy thing to loose.

I'll admit I've lost my focus a time or two...or ten.

There have been times when I've been so focused on the next best treatment, new therapy, or latest medical procedure or prescription that we'll adopt into our ever changing journey.

But lately...lately I've gained some peace. Dare I say it?

Peace is also an easy thing to loose. But I have it right now so I'm enjoying it and finding contentment in it for the duration of it's stay.

See, I'm beginning to discover that maybe this journey - Christian's accident, his recovery, and his future - is not about what he regains. There's something bigger, I think. There's something bigger going on here. Christian has a journey - maybe we can even call it a mission - and I'm going to put it out there that I'm not quite sure what it is yet. But, man, it's gonna be big. I can just feel it.

Maybe it's not about what he can and can't do. Maybe it's not even about us.

We went to church today...as a family...which is no small feat. And our EEG tech was there.

This is the EEG tech that read Christian's EEG on the night he was brought in. It was the night of the accident. My husband caught his attention because it was my husband who discovered he went to the same church and recognized him from the hospital.

The EEG tech told us about that night. He said after he performed Christian's EEG, he went home and cried. He said he prayed for Christian because he honestly didn't think he would make it. The lines on the EEG were flat. That means complete brain death. He explained how he went home that night shaken.

After the encounter with my husband at church a few days later and after learning that Christian had not only made it but was improving he vowed that he would be stronger in his faith and make it a point to go to church every Sunday with his family.

Today we saw Mr. EEG Tech and he came over to say hello to Christian. He told the story again and reiterated how sad he was that night. He said Christian is a true miracle.

I agree.

The whole thing really gave me goosebumps.

It is something bigger. You just wait.

Speaking of bigger...

We're 3 pounds up since no more vomit! I think it looks like it, but that's just me.

No tone in the hamstrings...No problem there!

"Okay, stop with the pictures already."

And what's he so focused on? That would be Baby Einstein. It's serious business.

Just Being

It's been slow around our house lately.

On purpose.

We're on an HBOT break and I've been making it a point to keep our appointments to a minimum.

This gives us back some normal. It gives us back some breathing time. It's good for the kids and it's good for me because it really allows me to be the stay at home mom I want to be.

An appointment isn't just an appointment. It's an hour of preparation, getting everyone out of the house, maybe finding a sitter, a 20-30 minute drive there and then again back home. It's unloading the car and loading it back up again.

All this in 100 degree weather makes for very red cheeks for Christian and an even more exhausted Mama.

So I put a stop to it.

There was a time when Christian had multiple appointments every single day of the week. I cannot say that Christian was any "better" because of that. In fact, I can say with some certainty that he's a lot better hanging at home. He gets his hour in his stander, he flails his arms while on his back, he practices eating with his little sister, sometimes he watches cartoons and sometimes I roll him back and forth across the carpeted floor. All of this is done uninterrupted and in no hurry because we don't have anywhere to be.

Of course, we have the regular PT and OT and they come to our house. And anything necessary like orthopedic and pediatric appointments are scheduled regularly. But we aren't adding anything right now. We're just...being.

Oh, as we are being, we also got a minivan. With a lot of help from those around us, we were finally ready to make the dive. I finally conceded when I realized that Christian just didn't have enough leg room in our truck and getting that beast of a stroller out of the back of a truck was years of chiropractic visits in the making.

We have a new member of the family - it's a 2004 Dodge Grand Caravan. Welcome to the family.

I make fun of it because I feel solidly like a suburbanite, mom of three, who's soon to turn 30...and now I drive a minivan...I feel like I'm straight out of a first edition Cliche for Dummies.

But there's something deeper. It's also another underlying milestone in the our special needs world. It's the purchase you make for "convenience" but really it's a necessity and will become even more so as time goes on. Minivans, even conversion vans, are part of our life and may be for a very long time.

"We need it for more room." - We say.

Really, we need it for Christian's stroller, and maybe someday we might need it for his wheelchair. Or maybe not. Who knows?

Anyway, the new family member is here to stay. I love it. Really, I do. Anything that makes life a little easier is something to make a big deal about. And this new family member is making life really sweet right now.

So, Yay for the minivan! Yay for less appointments! And, Yay for just being.