Bracelet/Keychain Store

Hello! This is Jenny, Cici's mom, and Shauna so graciously let me try to get the storefront up and running here as well. I have no clue what is preventing the sidebar from working, but until we get it sorted out, here it is! You can order from here, or my blog, or even get the code from the line that says "help sell this product" and put it on your own blog. It will all forward to the same place. Enjoy! And thank you!

Love - Hope - Believe - Dream

I am so excited about this fundraiser! A friend of mine, who I met after Christian's accident, came up with this great idea and I'm so excited to share it with you guys!

Let me back up a little. My friend Jenny has a daughter, Cici, who suffered a choking accident at 11 months old in October of 2008 that left her with a similar brain injury that Christian received. Our paths to recovery will be similar and I look at her experiences as somewhat of a preview of what's to come for us. We have a lot in common, unfortunately, because we are going through the same experiences in recovery for our children. But, fortunately, we have each other to lean on. Although, I've been doing most of the leaning since I met her!

Anyway, she came up with the best idea that will help both our kiddos! You can purchase a silicone bracelet in red, pink, or blue in support of Christian and Cici! We're splitting the profits and it's only $5 with free shipping! If you're not a bracelet type of person, there are keychains to show your support, as well. So something for everyone!

I can't wait to get one myself because every time I look at it I'll be reminded of our journey as parents, the infinite LOVE we have for our children, the HOPE for recovery, the BELIEF that the next day will bring new promise, and the DREAM that one day our babies will walk, talk, sing, dance, and jump into our arms again!

I've posted a link to the online store in my sidebar. Again, all proceeds will be split, so not only will you be helping Christian with medical expenses, but you'll also be helping Cici, too! If the link doesn't work, please visit Cici's page. It all goes to the same place.

Thank you for your support!

Whimpers and Ramblings

Whimpers.

I heard some whimpers. Were they on purpose or was air just escaping across the vocal cords? Who cares?! They happened. A couple of times. I seriously almost cried my eyes out. So whoever out there prayed for Christian's cry to come back, me thinks its on its way.

I held Christian for a while today. He seemed a little more...there. This is the feeling I had yesterday, too. He's been seeming more present. Sometimes I'm surprised by this because day in and day out I'm always looking for improvements - anything - and my patience, or lack there of, gets the best of me. I have to keep reminding myself to give it all to God. You know, people say that and sometimes it sounds easier than it is. To some it may sound preachy. But there is a beauty and a peace in giving your burdens over to God. You can only really control your own actions and choices and everything outside of that is not under our control. I believe God is still working. He's no where near done yet.

People often ask me if I've seen improvements yet. Of course I've seen improvements, but I'm not sure they're the improvements others are expecting - like maybe he'll just sit up, jump down off the bed, and yell for some juicey. Christian's improvements are as small as maybe, possibly, holding the weight of his head for just 3 seconds (which he did tonight). His accomplishments are focusing and making eye contact. His accomplishments are in slow motion. But they are so huge to me. I know it doesn't seem like it's a big deal. And I'm not only talking to "others" but also, in part, to myself. In the grand scheme of things, every little movement counts. They're building blocks creating a foundation for him to grow. This is going to take time. How much time? Who knows. But we owe it to him to be there every second of the way. And we owe it to him to believe he will continue to improve.


Belief is a funny thing. I think you either have it or you don't. In tragedy, those who thought they only believed in God, but not this, or not that, or some round about version of belief find that they are reaching down in the depths of their soul for any faith they have because there are times when faith is ALL you have to get you through. This is a weak explanation of what I've been through and what I'm still going through. But I see God's face when I see my son. I see His work. I see His beauty when I look at Christian. And for those who don't have faith, I feel sad because what do you lean on?

Okay, enough of my ramblings.

I am isolated. I can't get wifi in our room, otherwise I'd be online a lot more. I have to steal an hour or two during the day while Christian is sleeping or wait until almost midnight like right now. I can't wait to get back home. Didn't I say enough of my ramblings?

On to more important things...Christian is going to get fitted for elbow braces tomorrow. This will help keep his arm straight. Although, his arms are pretty loose. I'm hoping to talk to the ortho doctor about foot braces. And there have been a lot of people concerned about Christian's hands. I, too, was a bit concerned. The PT's haven't been all that proactive about his hands because you can get them open pretty easily. I made little dumbbells but I take them out when he takes a bath or goes swimming. He has wrist braces but he gets his little fingers out of them within 10 minutes. So I'm working with rolled up washcloths, makeshift dumbbells, and lots of massage and joint compression. The joint compression works so well! He loves it.

I also get to take Christian all by myself to hyperbarics tomorrow. I had to get a special order from the doctor to break out of prison for a day trip without supervision. Normally, they require transport with a driver and an RT. But tomorrow we're going at it alone. Am I nervous? Not at all. It feels more independent for us, which is what we're trying to get to.

Manny and Gabe are coming tomorrow to stay for the whole weekend! I know it won't be too much fun for Gabe but I'm excited to see him! Our life has changed so much and really won't ever be the same as it was. He's really been a little trooper and rolled with the punches without so much as a temper tantrum. That's not like Gabe, though. He's really accepting of most situations and adapts easily so he's focused on trying to get used to 6th grade. He seriously told me that he just needs to get elementary school over with so he can get on with his life. That was verbatim. He's kind of stoked because they have a class pet - a rabbit named Dusty. And nothing spells cool like animals in the classroom, hopping around during discussions of social studies and geometry.

I had an OB appointment today and Lola looks beautiful. I got another ultrasound picture and we got a really good shot of her big head and profile. Look like another big headed Shauna baby. And still a little sister for my boys.

I love my kiddos!

Superman

Christian hanging out in the pool.

Swim Time! Christian was so cute in his little swim shorts and t-shirt. The PT also put some sunglasses on him, which really weren't necessary because it was cloudy outside. I wasn't a fan of the sunglasses because you couldn't see his eyes and that's where you get most of his reaction. He smelled like sunscreen and chlorine...just like before. I love when little kids smell like sunscreen and chlorine. It reminds me of summer. Like I need to be reminded when it's 108 degrees outside.

Anyway, I didn't really know what to expect in the pool. That's probably why I made the mistake of wearing my valour lounge pants. It was hot to say the least but bearable. I got Christian ready, carried him down to the pool with camera in tow. When I got to the pool, I got my camera out, ready to take a zillion pictures and I FORGOT THE MEMORY CARD IN THE LAPTOP! UGH! Bad mommy moment. So all I have are these lousy quality pictures from my phone. Next time, I'll be more prepared.

Christian standing with support.

Like I mentioned, I couldn't really tell what was going on with Christian because I couldn't see his eyes but the PT was able to get him standing in the water, with support of course. And when they finally gave up on the sunglasses, you could see that Christian was so relaxed. He loosened up in the pool and just floated. We're going to keep at this, maybe even a few times a week, if I can get it for him. He really seemed to be enjoying it and was so worn out that he fell right to sleep when we got back to the room. I just let him sleep naked in his diaper...just like before.

Sleepy Baby

Christian also did really well in HBOT today. When he came out he was so loose but so alert and looking around. Today he lifted his legs! This is exciting because it's new. He didn't lift them in the way he does when he tightens them, that's different. He lifted his leg from the joint in a way he'd never done...almost on purpose.

I've also found a new position that he seems to love. He relaxes right into it.

No arching!

And someone sent Christian some SUPER cute pajamas. I don't know who it was because the sender was a website. But whoever it was thank you so much! They are so appropriate for my little Superman!

"Me in my Superman pajamas!"

"Off to the rescue!"
(Tummy time stretch)

I love my little Superman!

Best Sound Ever.

Where did this day go? All of the sudden we are ready to go to bed. Well, Christian is already in bed. Figures...the little boy had a restless night last night. And when Christian's not happy...ain't nobody happy. He woke up in the middle of the night and threw up and then had a higher than normal heart rate. I think his tummy just hurt because he calmed down with a dose of Tylenol. But I hardly got any sleep and he hardly got any sleep so today, we were both zombies.


Christian had over an hour straight of physical therapy. He was so relaxed. They had him laying on his tummy with his arms stretched over his head. And tomorrow....the day has come! Christian is going swimming!!! I will be attending this event with my camera in tow. I hope it awakens some of those little senses. We'll see how it goes.


Christian also had his PMV on for 8 hours today. He did really well with it except that he threw up while doing hyperbarics. Two weeks ago I would have freaked out about this but now it's a daily routine occurrence. And the people at HBOT were pretty cool about it, too. The whole throw up incidence was unrelated to his PMV, though. After he got out of the chamber, he was all alert and looking around. And I heard it...his voice! Not a squeal, his voice. It was a low sigh but it was his voice and it was the best sound ever.


He is resting from the PMV right now. It's hard work for him! But the RT's say he's doing great with it! And they were even surprised he went 8 hours with it on only his 2nd day because some babies can't even tolerate it for 2 minutes. Well, I had to explain that Christian is just an overachiever and they better get used to it because he's a superstar. No, I didn't say that, but I often feel like saying it.

I do have to say that taking Christian to HBOT is starting to feel like taking Christian to family. The manager is...intense, but she knows her stuff. Listening to her talk about hyperbarics, her charity, and other public functions she's been apart of is fascinating.

I also keep getting questions about Christian's brain and whether we've received an MRI. We did while we were in the PICU and it showed global damage, grey matter and the like. But his EEG showed close to brain death the night he was brought into the PICU and 12 hours later he had activity. Things change. But I'm not really interested in what an MRI has to say. It will say one of three things...1) Brain has improved. 2) Brain is still damaged. 3) Somewhere in between choices 1 and 2, mostly likely still closer to choice 2.

It's weird but I'd rather not know. I can see what Christian is doing, and what he's capable of with my own eyes. We don't need another MRI to tell us his brain is injured. We know this. And I'd rather see what Christian is capable of rather than try to guess at what the future holds from an MRI.

Another specialist will be visiting Christian soon and that will be someone to test his vision. I believe Christian can see and can focus but his little brain is trying to make sense out of what he sees. So I think he has the ability to see but has trouble making sense out of what he's seeing, which may cause his vision to be impaired for a while. It's just a guess so we'll see if I'm right.

And the feeding issue...don't even get me started.

So everyone remember to kiss your babies tonight. If they wake up in the middle of the night crying out for you, please say a prayer thanking God for their little cry, and another prayer for Christian, too.

The PMV Stays!

Christian tried the PMV and he did great! I believed he'd do just fine, but I said a little prayer after they popped that thing on and he took it away! The RT was so excited because he said this was his favorite part of the job. He also said they had ordered some PMV's for 4 other patients and Christian's the first one to tolerate it. He went for 5 minutes...then 10 minutes...then 15...and did so well we left it on him for the rest of the night. I'm giving him a break, though, while he sleeps so he can rest. It is obviously hard work just by looking at him. It allows air in but not out, so he's constantly wanting to push. But I've heard some good strong coughs!

Another thing I heard was a light squeal. This is so exciting to me even if it's not technically hearing his "voice," it's the closest thing to it that I've heard for a month. And this is my latest struggle - responsiveness. It's difficult. That's what all the professionals want to know - does he respond? I don't know. I feel he responds when I'm talking to him but he doesn't turn his head toward me when I talk to him on his left side (he favors his right side and will turn to the right all the time). If other people are holding him and he hears me he seems like he responds. But I don't know if this is all in my head and I want to BELIEVE that or if he is actually doing it. That's as close as I get to responsiveness right now. I mean I look for responsiveness when I change his positions. I know how he's comfortable and he responds accordingly. He responds to my calming him. And I know how to make him happy.

He squealed. Do you know what that was like for me? I think I almost cried. I miss his voice. I miss him yelling and babbling and crying. The closest I get to his voice are long sighs and that squeal. And right now I'll take it because otherwise it's just silence. I'm really praying that one day, and one day soon, I'm going to hear that loud, boisterous voice again. I'd settle for a soft, little whisper at this point.

All of this longing for responsiveness has overshadowed how exciting the PMV trial was. It really is a big deal. The RT said it's a step toward having the trach removed and that if the doctors see this, they'll look toward removing the trach. This is all wonderful news. And I know that Christian's body is just learning how to work with his brain again. For example, as you've all seen and heard about, he's always trying to get his fist in his mouth. Well, he brings his fist to his mouth and makes sucking motions, but he doesn't know quite how to open his mouth wide enough to get his fist in. He's still trying to connect those dots. I suppose all this connecting takes so much effort, the emotionally responsive part of his brain isn't ready to emerge yet.

I know someday his brain will be ready. I still miss him, nonetheless. Everything in due time. Breathing and moving first, smiles, laughter, and crying will follow. All in God's time.

Praying for patience tonight.

Go Time!

OMG! It's gone from a relatively slow day to a big day. A huge deal! I spoke with Christian's "doctor" on Friday about getting him a Passey Muir Valve (PMV). This will allow him to vocalize if he chooses. It will also help him strengthen his cough and it's a step to removing the trach (hopefully, one day when he's ready).

Well, the doctor said he would discuss it with the speech therapist so the speech therapist visited today. She was different from the one I'd met before so I thought she was an aid. I had left Christian asleep and I am so so SO adamant about not waking him if he is sleeping because rest is conducive to brain injury recovery. And I'm especially ticked when they wake him for something like changing his diaper or taking vitals. All things that can wait until he wakes up! So I'm constantly running the aids out of the room and I thought she was one so I came up behind her and asked, "Did you wake him up?" in my most impatient way (I mean seriously, they just don't get it. I hung a sign by his bed and everything!). She looked totally blind sided. I felt really bad when she introduced herself as the speech therapist. I was embarrassed, but enough already with the determination to wake my kid up!

Anyway, on to the more important information...she said we'd try the PMV and she'd put in an order for it because he seems like a good candidate! Great! I thought that would take a few days since they have nothing here, ever, it seems. NOPE! He gets it today and as soon as he wakes up we're going to test it out! I'm so excited and so nervous. The PMV allows air in the trach but not out so it forces air up through to his mouth and nose. The speech therapist said he may not tolerate it and that's okay on his first try. If he doesn't quite vibe with it the first time we'll just keep trying. The respiratory therapist was a total advocate for PMV's and was so hyper and excited when he delivered it to the room and he said he really hopes it's on his shift!

So wish us luck and say a little prayer for Christian. As soon as he wakes up...it's go time!