Kindness Counts: Giraffe

Today is the second in our Kindness Counts series and guess who's turn it is...

It's my turn!

And our goal in this series is to spread how acts of kindness can effect you, your neighbor, or even a stranger. Kindness is contagious and we were so inspired by Ben's Bells and their message, we wanted to pass it along!

And it started with a giraffe...

The morning after Christian's accident I remember standing in the lobby of the hospital in the elevator bay. I don't know how I got there, but I think we were headed toward the cafeteria, and I'm even sure about that.

I remember seeing a delivery guy in that elevator bay. I don't remember his face, but I remember him being the only person in this busy area holding a stuffed giraffe and bouquet of floating Mylar balloons. And I remember thinking - Awww, how sweet it is to send that to somebody. Whoever that's going to is a lucky kid.

The next memory I have is walking into Christian's PICU room not fifteen minutes later. He was in bad shape, but he made it through the night, my little soldier. On his bed sat a stuffed giraffe with a bouquet of balloons. And I thought - He IS the luckiest little boy...

I didn't realize there were people in this world that acted on kindness and empathy alone. I mean I had heard of it, but never really experienced the magnitude of it until we faced life and death. I'm not going to begin to pick apart the meaning of kindness and what it can do because I simply don't have words that are powerful enough to explain the phenomenon of kindness.

But, that's the thing about kindness...it's about actions, not words.

I've mentioned the first trip to my beloved Target after the accident and while Christian was in the PICU a time or two. This was the Target I would usually take my bouncing boy to browse the Dollar Spot on a lazy weekday. But I was walking through those doors without him to buy socks to ward off the freezing cold nighttime chill of the hospital. I wondered if people could see the pain on my face. I wondered if people could understand how much pain I was in because it felt that bad. So bad it seeped out of the pours of my skin and the dark circles under my eyes.

I don't think they saw it. And that's the point, nobody knows how much pain the next person is in. We go on about our day, unaware, that the person taking a little extra time at the cash register might have a personal battle they're attending to. That lady who didn't make her left turn quickly enough might have a child in the PICU.

Be aware. Be nice. Smile. It meant the world to me then. And I know it will mean the world to someone if you pass it along.

That stuffed giraffe and bouquet of Mylar balloons were from my August Moms. Through these moms and their power of kindness, others were moved to act and the entire experience has proved to me that a bunch of moms can truly move mountains. Those August Moms are the epitome of what I'm referring to in trying to explain the phenomenon of kindness. There were countless ways in which they showed their love and care for us, even with simple emails and cards, that will remain with me as inspiration to be a better person to this day. And it all started with a giraffe.

Which, of course, is way more than a giraffe.

The infamous giraffe still sits and watches over my little boy. And my little boy is still lucky. Giraffe still has the small card addressed to Christian Quintero, UMC ICU around his neck. I won't remove the card, not yet. It's a reminder of what kindness and selflessness really mean. It's about the actions behind the words printed on the envelope.

Kindness.

Spread it.

http://bekindcolorado.blogspot.com/

http://www.bensbells.com/

Lucky

I'm a little late in claiming my Irish luck, but that doesn't mean there wasn't luck to be found.



"No pictures after nap time!"

 

                                         

                                                "Absolutely not, Mom!"



Look over here, Christian!



Smile, Lola!



I'll take it.



So maybe we weren't so lucky in getting smiling, sitting still children in their St. Paddy's Day garb right after nap time.

 

Christian sits in front of the back sliding door every day so he can look at the light contrast with the vertical blinds. We were lucky enough to get this picture, which I love, because he looks surrounded in light.



We found some more luck when we found the coolest St. Paddy's Day shirt to date.

Lola was lucky enough to find her own personal hiding space...right in the undercarriage of big brother's chair.

 

And Christian is finding some luck in learning how to close that mouth of his!

We are a lucky bunch.

Kindness Counts Series

I am so excited to tell everyone about this new series on kindness that we're doing every Monday for the next few weeks.

But I know I'm long winded so I'll try to get to the point, I promise.

We're featuring guest posters every Monday who will write about how kindness impacts lives. Why are we doing this? Because spreading kindness can change lives. It has most definitely changed ours.

And you all know how I feel about Ben's Bells and their message of spreading kindness!

So without further adieu, you can find our guest blogger HERE!

Also, don't forget, but our guest blogger, Cici's Mom, is holding an auction for little Cici and a portion of the proceeds are going toward the Ben's Bells distribution in Denver this coming May. Visit Be Kind Colorado for more details!

You can find Cici's auction at http://www.bidsforcici.org/. They have awesome stuff!






On the Seizure Front

Wanna know something strange about Keto kids when they get sick? (And possibly all kids with epilepsy.)

They either have increased seizure activity or they have decreased seizure activity. Sometimes no seizure activity at all.

Wanna know something else that's strange about Keto kids when they're on antibiotics?

Again, they either have increased seizure activity or decreased seizure activity. And, again, sometimes no seizure activity at all.

Christian happens to be a Keto kid who's seizure activity has reduced dramatically while he was sick and still while on antibiotics.

I've been warned that the seizures do come back, but Christian is three days off the antibiotics, no longer sick and I'm enjoying hardly any seizure activity for the time being.

We also had our first keto experience. See, this diet is so precise that even a mis-measurement of a single gram can set something off. Until now, Christian hasn't been seizure free enough to make any comparisons. But the other day, he was irritable and I thought maybe he was in pain so I gave him a half tab of extra strength Tylenol (which I have to use because he can't have sweetened children's Tylenol syrup and the regular tab strength doesn't work). Extra strength Tylenol has a higher carb content. He had clusters within the hour. Then he was fine the rest of the day and we haven't seen anything since. Just a simple thing like that can effect the diet. And it tells me the diet is working.

With this nice break comes more awareness. And I'm beginning to think that with more awareness comes more frustration on Christian's part.

I've contemplated what exactly "waking up" means. I've just started thinking this through so I don't have a long winded post to delve into quite yet (but it's coming). However, when Christian is going through his irritable periods of whining and crying, seemingly for no particular reason, and is only comforted by being held, I tend to think this may be part of his "waking up."

This leads me to the question - What if when he wakes up, he's pissed?

And these questions - What if all this "waking up" pisses him off even more because his brain and his body are in constant disagreement? And what if this royally pisses him off?

The way I see it now, and, again, I haven't really thought this through, but if you woke up and you weren't moving the way you'd like to and your brain wasn't communicating with your body, wouldn't you be irritable?

This probably all sounds very redundant and obvious but we all have these visions of Christian waking up to be a happy little boy. But with more alertness, what if he is alerted to the fact that he can't move the way he wants to? And it makes him mad the more alert he becomes? What then?

Anyone have an answer?

Hoping my aggravated little boy learns to move the way he wants to so he doesn't get so mad as he wakes up.

I suppose I can consider this our version of the terrible twos. But, instead, I'm renaming them the Totally Pissed Off Until My Mommy and Daddy Hold Me Two's.

Award!

I wear sweats or yoga pants most every day. And if there were a 12 step program for flip flop wearing, I'd be enrolled. So imagine my surprise when I read Avianna's Mom's blog and saw our little blog listed among the recipients of the Stylish Blogger Award. Stylish? Me? (No, not you! The blog!) Oh, yeah, makes more sense now.

So big hugs and THANK YOU to Jen from The Long and Winding Road! I am such a fan of your blog...and of Avianna...and of you....and of Rainey.

I happily accept the opportunity to have a little fun with a blog post. Sometimes I can be long winded (gasp!) and emotional and it's okay to be fun, too. Really, it is. And I did feel a little strange sharing seven things about myself when I'm not sure people come to the blog to find out about me. But there is a me that is separate from Christian and it's okay to share that sometimes.

So here's the deal...

The rules of the Stylish Blogger Award are:

Thank the person who gave you the award and link back to them in your post.

Share seven things about yourself.

Award seven recently discovered new blogs.

Contact these bloggers and let them know they've received the award.

 

7 Things About Me:

 

1. I'm a TV junky. I have serious favorites that are DVR'd on two separate DVR's in my house - living room and bedroom.

 

2. I don't trust people who don't like avocados. Really, who doesn't like an avocado? And if you don't like avocados and you're offended, it's okay. I don't care for olives or mushrooms so you don't have to trust me either.

 

3. See above - I don't like olives and mushrooms.

 

4. I love watching movies during the day because I feel like I'm somehow getting away with something.

 

5. Even though I graduated from a university and got a four year degree, ready to take on the world, my biggest, most important dream has always been to be a mother and wife.

 

6. I'm a night owl. And if I have something to occupy me, I'll stay up until morning.

 

7. One day I want to visit the Christ the Redeemer statue in Rio De Janeiro, Brazil. Looking at pictures of it even makes me feel like I'm on the verge of tears because it's just that magnificent.

 

 

 

Now the rules are that the blogs have to be newly discovered. However, I also included blogs I've followed but I either haven't mentioned them much or they just happen to be in the middle of some awesomeness that I want to share!

 

The Seven Are... 

 

The Long and Winding Road

(You are my most "newly discovered" and one of my internet soul mates, I'm not stalking, I swear.)

 

Suzy Beth Booze

(I've stolen from this blog and I'm not ashamed to say it. Whitney, I wish we lived close, too! We would be great friends!)

 

Sweet Baby Owen

(You guys are doing an awesome job finding your way! Owen is a lucky boy!)

 

Mr. Brock Cherek

(I feel like Brock is Christian's twin. They seem so alike in so many ways and, Lisa, you have such a good sense of humor. My kind of chick.)

 

Push for Emerson

(Emerson is just starting her journey, too, but she's already doing great!)

 

The Owens Family

(You guys are doing AMAZING things. And I want everyone to know there are people like you in this world.)

 

Fighting Joey

(Talk about stylish! Joey's new blog design is A.W.E.S.O.M.E. Just like Joey himself.)

 

And I can't forget to show some love for...

 

Ben's Bells - Tucson

Ben's Bells - Denver

 

Miracles for Mito

 

Congratulations!

 

Have fun!

 

 

 

 

 

 

 

 

 

Struggle

Life has meaning only in the struggle

Triumph or defeat is in the hands of the Gods

So let us celebrate the struggle

-Swahili Warrior song shown in the first scene of Lorenzo's Oil

When we were waiting (and waiting) in the ER last Tuesday I had a chance to get really scared. I had a chance to revisit how demise could be right around the corner for Christian. I mean for any one of us, really. But for Christian, a flu gone really bad, a nasty pneumonia, just complications from a bug...that's all it takes.

So I rocked him in my arms and prayed really hard that we'd be able to go home soon. His breathing was fast and a little labored and he was so miserable, falling in and out of sleep. Maybe it was dramatic of me but I prayed please, don't let it be now. Please. I don't care if he never progresses another inch, I just love him and I want him here with us and healthy.

One of the interns, the eager one, called him complicated. It always takes me by surprise when some one calls him complicated or fragile because, to me, he's just Christian. In fact, isn't he less complicated than a flailing, screaming, neuro typical 2 1/2 year old? He'll lay very still for you, intern, and all you have to do is take his blood and urine, run some tests, look at his chest x-ray, and then you'll know what's wrong. Does that sound complicated?

I guess it is for people who don't live with a child with special needs. Brain injury is complicated. But it's become our lives, and gladly, we accept the challenge if it means we have Christian right here with us.

When I meet new people who don't know our story and it comes time to tell them about Christian, I don't waste any time. I tell them our story right away in order to ward off questions about whether the two little ones fight or get along. It's like a challenge. For a split second I think - Are you ready for this? Can you handle what I'm about to tell you? Will you look at me with great sadness or do you have an aunt or cousin or, maybe even a child of your own, who shares the same condition so instead of sadness you'll give me a look of understanding and shared grief?

Yes, all that goes through my head in a split second. Not complicated at all.

Anyway, I'm proud of my little warrior. He's a fighter, he is. And would you believe the boy in this video was in the ER last week?

Maybe it is complicated. Maybe it is a struggle.

But it's a struggle worth celebrating.

Save Us, Mary Poppins!

You know that cold and flu monster I keep going on about? Well, I finally kicked him out and I'm hoping we've seen the last of him. He didn't leave without a fight and ended up shoving me around a little before he left.

I've finally caught the sickies and right this moment I'm hoping Lola will go down for an early nap so I can rest. Or maybe Mary Poppins will float down into my living room and take care of everything with her spoonful of sugar. Whatever comes first.

And the kids?

Lola is feeling better. A 6AM wake up time tells me so. (Seriously, Lola? It's still dark outside!)

I'm pleased to say Christian is doing a lot better. Last I wrote, we made a trip to the ER with not much but an explanation of what he didn't have. Don't get me wrong. I'm thankful for what he didn't have.

We visited his regular pediatrician the next day and, in retrospect, if we had visited him in the very first place, we could have skipped the ER trip all together.

Christian was having a hard time keeping those oxygen levels up and was hovering around 85-91. Normal range is 90-100. He didn't sound like he had fluid in his chest, but there was a wheeze and he was pushing hard on the exhale. It also turned out that on top of everything he developed a double ear infection.

So the pediatrician prescribed Christian an antibiotic for the ears and his very first nebulizer treatment. That helped open up his airways and stabilized his oxygen levels.

Within a few days he was alert again, no longer lethargic and in and out of sleep. Christian is still on continuous feeds, but over the next day or two, I'm hoping to work him back to our normal feeding schedule.

Both kids are still occasionally coughing and sputtering, but they're doing much better and for that I am exhaling a great, big sigh of relief.

Wait...I think I hear ol' Mary on the roof.

Nope, just the wind. Darn.

The Perfect Storm

I should never have talked crap about that damn cold and flu monster because he beat down our door with furry ready to take us all!

We spent nine (yes, nine) hours in the emergency room yesterday. And all of my patience for waiting has been maxed out so, please, nobody ask me to wait for anything this week, 'kay, thanks.

Christian has been hit with what seems to be the equivalent of the perfect storm. I last reported that he had a fever and cough. I committed the cardinal sin...saying things were looking up. Never, ever announce it prematurely, I tell myself, because that monster will come and prove you wrong every time!

Christian continued to get fevers that were coming and going. His cough progressed to a hard and painful sounding cough. He also started throwing up everything, including water. So I decided it was time to take him to the pediatrician.

Our regular doctor wasn't in so we met a fill in that talked way too much about where he came from, which is why he was running almost an hour late (and you cancel our appointments if we're more than 15 minutes late, medical community???) He was nice enough, checked Christian over and said he looked great under the circumstances. Ears, nose, and throat were clear, breaths sounded fine. But he did mention he was concerned about the P word. Pneumonia.

Pneumonia was sitting in the back of my thoughts, too. It can take down kids like Christian with a quickness. And when I say take them down, I mean it can take them out. Kids with neurological impairments or weak structure have a hard time clearing their lungs so crap gets stuck down in there and develops into a beast of a sickness called Pneumonia.

Long story short, the substitute doctor got on me about my choice not to give the kids flu vaccines followed by a discussion about possibly taking Christian to get admitted for rehydration.

First of all, I don't get flu vaccines for the kids because they are home with me all day. Second, I don't like introducing unnecessary ingredients into my childrens' systems, especially Christian, when there is already so much going on with him. Third, my reasoning didn't hold much water with two little ones currently suffering from the flu, despite my best efforts to keep them germ free.

Then I got to thinking about deaths from the flu last year, H1N1, and the highest risk group is...Christian. I got scared. Not only could he be compromised because of possible pneumonia, but also from the flu???

So off to the ER we went. We got a room quickly but that was the only thing that was quick that day. He got chest x-rays and blood tests and the intern suggested maybe a CT scan. A CT scan? My, aren't we an ambitious and experimental little doctor in training. I literally laughed a little bit. I think she thought she'd get to order a scan because he had a brain injury. But last I checked CT scans weren't used to diagnose cold and flu symptoms, but I may be going out on a limb here.

Needless to say, the main doctor nixed the CT scan idea. Maybe next time, intern.

Chest x-rays were clear, blood tests showed no elevated white blood cell count which would indicate signs of infection. The third test, however, showed something called gap acidosis. Keto acidosis is a very real risk to this diet, and the doctors knew extremely little about the diet. They considered it a culprit for a split second but, more so considered dehydration due to Christian's vomiting and diarrhea. They gave him an IV drip of saline and repeated the tests, which came back normal after the rehydration.

The verdict according to the doctor - it's a bronchial irritation, upper respiratory illness that's viral in nature probably mixed with the flu. Oookay, can we get any more noncommittal on the diagnosis, doc? Oh yeah, p.s., because it's viral, there's nothing he can take for it. More good news... since he's more than three days from his initial flu symptoms, there is nothing to give him for that either. Super.

I don't much trust the doctor after he tried to tell me he looked at Christian's previous chest x-rays, of which there were none in existence because the doctor explained he got Christian mixed up with another patient. He then made sure to mention Christian "was like his fourteenth patient," as he shook his head in fatigue. I felt totally safe after that.

So tomorrow, Christian is going for a follow up with his real pediatrician. He was a lot more alert today, and his coughs are getting a little looser sounding. He hardly threw up and he's holding down continuous feeds, which is when we feed him all day at a slow rate. He does still have some diarrhea and his breathing is still a little too fast for my comfort levels. His oxygen levels are also on the low side. He slept better last night, though, and unlike yesterday, his eyes are no longer blood shot.

I'm hoping we're on the up and up but I'm not going to say it because that flu monster is sitting in my living room just waiting for me to slip up.

Please say a prayer for Christian and that he can kick this sickness and we can kick that flu monster to the curb for good!