Down with the Sickness

Everyday I check my facebook page and scan over the postings. I am always taken a back by the number of parents who have sick children. "Sucks for them!" I thought, all the while a little nervous that the big green cold and flu monster might come a knockin'. My nervousness was subsiding ever so slightly as I thought we might just make it out of cold and flu season unscathed. That stupid monster had other plans.

We hid from that monster. When he knocked we closed the blinds, tried not to make a peep and yelled, "NO ONE IS HOME! GO AWAY!"

But he knew we were here because he could hear us laughing and carrying on as if we had nothing to worry about. He burst through the door and got my two youngest kidlets.

(That bastard.)

And now they are down with the sickness.

And this ain't just any sickness. It's vomit and fevers and other unmentionable things I dare not speak about. Just know that it's bad.

I noticed last week Christian wasn't quite himself. Then the other night he woke up crying. It was the sickie cry and he was really warm so I brought him into bed with us. That was two nights ago and he's had a fever off and on ever since.

Last night was a little more concerning because Christian's fever would not come down. It was hovering at about 102 degrees and he developed a nice and juicy cough.

Coughs make me nervous. In fact, Christian hasn't had a cough yet - and I mean in his entire life. I was dreading this day because, although I knew he could cough and had a strong cough, I didn't know how he would fare when faced with a living and breathing flu monster type cough.

Turns out, he's got a pretty good cough so far and he's holding his own. He's coughing good and strong enough to clear his airway, which isn't really blocked, just juicy sounding. (Remember when they said he absolutely needed a trache because he had no cough and gag and might never have one???)

Back to last night...Christian was burning up. His breathing was quick, which is common for Christian when he gets fevers. His heart, though, felt like it was beating so fast it would burst. So I dusted off the old pulse ox that sits quietly in the closet, just to ease my mommy mind. It seems Christian's heart rate wasn't as fast as I thought and his oxygen levels were just fine. He ended up in bed with Daddy.

Not with Mommy, too? Oh, no. That didn't happen because I was on the couch all night with a sick Lola. She got what seems to be a 36 hour stomach bug that didn't allow her to eat anything without it ending up on the floor in liquid form. It was not pretty. And she was up every hour last night with stomach cramps, poor baby.

Good news today! Lola stopped throwing up and started eating and Christian's fever finally broke. We're not out of the woods yet, but things are look better and there might be a little more sleep in my future.

I hate sickness. And if you see that cold and flu monster tell him I hate him, too.

Fresh Air

You know that feeling you get when there is change in the air? It's a feeling like you're standing in the middle of an intersection and you can venture down any of the four roads or you can just stand still and wait for cars to come and make that decision for you. There is so much possibility, yet so little predictability and it's scary and exciting and overwhelming all at the same time.

That's where I am. I feel like Tom Hanks at the end of Cast Away.

As if being a full time stay at home mom, caregiver, fundraiser, wannabe super wife, mother, friend, daughter, tax payer, independent voter, (you get the picture) wasn't enough, I've gone back to the world of paychecks and W-4's. Yes, that's right, folks, I've gone back to work.

And that loosely intertwines within my crossroads-Cast Away reference.

I've returned to the company I started working for right after Christian was born. It was ideal, at the time, because it afforded me the opportunity to work from home. When Christian's accident happened, after realizing the extent of care Christian would need, I resigned. Now a little over a year and a half later I had the opportunity to go back and still work from home. With this undertaking there is also more opportunity for therapies and travel to other states for treatments we might consider.

Needless to say, there's been a little adjustment to get used to. It's been hectic to say the least.

Despite the chaotic schedules, we decided to get out of the house today and attend a long awaited playdate with our red-headed triplet buddies and that was so needed! Just getting out of the house is always a good thing. And I love when my kids' hair smells like outside - fresh air, mixed with a little heat, with a hint of old graham cracker. It should be bottled, I tell ya, because every time I take a sniff of Lola's hair after she's been outside I instinctively close my eyes and feel love and calm and all good things.

During our play date we had some home spun OT. There were some bucket seats at the park and I put Lola and Christian back to back in them. I should have taken a picture of this as it's probably hard to visualize. But bucket seated swings have four holes in the bottom. Each kid has two legs, they were back to back - can you see it?

Well, Lola didn't mind at all because she usually isn't fond of the big kid swings. Frankly, they scare her. So she was content having the security of big brother while watching her buddies swing. Christian was a little miffed at first, but as soon as he was in, it wasn't half bad. The only thing was that he's so tall, his giraffe legs reached the sandy ground beneath the swing so it was a little hard to actually swing. But, more homespun OT directs us to remove socks and let toesies feel the sand while swinging. Sensory all over the place. Christian was chill about the whole idea. Settled right into it, in fact.

It's amazing what a little fresh air and time outside can do for kids. Lola was beat and Christian was pretty relaxed, too. And things were so calm when we got home I didn't even turn on the TV for fear that I would ruin the zen of post playground-tuckered out kidlet bliss.

And at the aforementioned park, I was delighted to see a slew of Ben's Bells "Be Kind" stickers on a handful of random cars. It made me feel like part of a club. Every time I see one on a car, I think "they're part of the Ben's Bells club."

This is what they look like. Only the original ones say "Be Kind." This design is revamped due to the tragedy that happened in January.

So it is with great pride that I direct you to Jenny's page! She's holding a fundraiser for her daughter, Christian's friend, Cici and half the proceeds will go toward starting a Denver chapter of Ben's Bells. To say that I'm excited would be an understatement. If you can donate an item for bidding, please donate! If you want to bid on really cool stuff and help not only little Cici but also the Denver chapter of Ben's Bells, please bid!

And if you can get outside, do it! Do it now! There is this new perfume out there that smells like sun, fresh air, kid sweat, and a little bit of old graham cracker that's all the rage.

Reading Train

After a puzzle of a month, the calm that has settled back into Christian is like a collective exhale in this house. Calm never felt so nice.

Wanna see a two year old who looks like a five year old??? Refer below...

But, that there is a closing mouth...with bubbles.

We like story time. I love when these little activities happen unplanned (hence, the pajamas and the make-up-less-ness). Lola loves books and Christian seems to pay a little extra attention to a good story book, so we made a little reading train where everyone could participate.

And now that there's calm, there is music.

A while back I purchased some CD's with classical music arrangements meant to stimulate the right and left hemispheres of the brain. They're called Metamusic by Hemi-Sync. There have been recent studies about the music's positive effect on the brain and Christian seems to like it. He brought his own hands mid line to play with his tangle toy while listening. Don't know if it's related but it makes him happy and that's good. 

And for good measure, we also got surf sounds for extra relaxation. We like to fantasize we're back at the beach in Mexico....collective sigh....ahhhhhh.

Finally Calm

Ch-ch-ch-changes!

Story of our lives over here. But they've been all nice...good...calming changes.

This is what the last four weeks have been like:

crying-whining-drooling-moaning-monster molar-eruption blister-crying-sleep out the window-ear infection-amoxicillan-still crying-med free-not med free-still up at night, what's sleep again?-rash and hives probably from amoxicillan-goose egg on forehead-is there really any more???

And I'm happy to report, I think we're finally getting off this roller coaster of health mishaps. We're getting sleep back again! Yes, I said it! There is sleep again in this house, hand to God! Melatonin has really helped deepen Christian's sleep so he has a more sound sleep. And guess what...the kid likes to sleep on his belly now. All of the sudden. I don't know where that came from but he actually prefers it. In fact, he'll get downright pissy if we don't put him on his belly and pat his back to go to bed. Whatever works, right?

Yes, he had a rash. A few days after he finished his antibiotic, he started getting what I call "speckly." Christian usually has very sensitive skin and anything makes it red or imprinted. But this was different. I brought him in bed with me one morning to snuggle and when I lifted the covers he was covered in raised welts. Ahhhh! That's what I said! But as soon as his skin cooled, they went away. Confusing much? I'm about 90% sure it was a reaction to the Amoxicillan and he's allergic. The same thing happened to Gabe when he was little. Anyway, no rash anymore and that's a good thing.

Christian was also fitted for new boots! Yes, we just got some a few months ago but they just weren't supporting him enough and giving him the stretch he needs. So we had to chuck the old ones and get fitted for some new ones with the help of Miss Barb, his PT. He was so mad, I think he tried to smack her and she can attest to that. I've never seen him so incensed! He turned toward her and started waving his right arm and reaching as if to bat at her. Gabe even agreed he had never seen Christian so upset. But we got what we needed and we'll have new boots soon.

We're also working on some funny stuff in OT.

If you look closely, you'll see kenesio tape around Christian's mouth. It helps him understand he has a mouth and he can use it. Because Christian doesn't have a lot of tone in his mouth area, his mouth hangs open. So we started taping around his mouth with special tape that gives him input. This works with feeding by mouth. We're able to give him a syringe with water and he can feel the syring with both lips so that hopefully, he will learn to suck using those mouth muscles. I think he looks like a duck.

I don't know if you can see a difference but recently Christian has gained a little more tone in his mouth and now holds his jaw a little more closed so it's not just hanging anymore. The taping helps with this.

Kissy lips!

Things are finally calm. I know. Don't say it. That's when it goes haywire. But I'm enjoying the calm. I was enjoying the sleep until Lola decided her new wake up time is before the sun comes up. Nice.

Cheers to calm, even if it only lasts for a little bit.

My Two Sons

I have two sons.

Yes, I have Gabe and Christian. But that's not exactly what I'm talking about.

I have two sons named Christian. Pre-accident Christian and post-accident Christian.

I gave birth to both boys. They look the same, have the same blond hair, fair skin, and big, round eyes. But they are two very different boys.

After reading a blog post by Aviana's mom, which explained this phenomenon, I buried it for a little bit until I saw a picture of Christian last night. BAM! That phenomenon hit me right in between the eyes.

That's when it happens. I mean I can look back at every single picture I have of Christian since the day he was born and each and every one of them is memorized.

It's when I see pictures of him I've never seen before, usually those pictures that other people have taken. I'm drawn to it, searching it, trying to draw in every detail I remember from that day and when that picture was taken...trying to remember him.

It's a very hard thing to understand and explain the feeling of grief over loosing a child who is laying right next to you. I don't talk about it because, a) I don't like drumming up these type of deep, gut wrenching feeling in front of people for fear that I just might combust, and, b) I don't want to offend those who have had a child pass away. I feel like those parents might get angry for me even comparing my situation to theirs, because my son is right here with me.

But the son sitting next to me is only the same son in genetic makeup alone. I grieve that little baby that died that day and I've tried to stuff that grief way deep down where nobody can see it, including myself. See, I love the son I have now so much so that if love could "fix" him, he would have long been "cured" ten times over. And up until recently, I've felt that grieving the old Christian would be counterproductive and almost disrespectful to the new Christian.

I try not to think about that little boy. I don't put up too many pictures of him because I'm afraid I'm not fully accepting this Christian by doing so. And I also feel like I'm looking at a little boy in those pictures who has passed away.

It's a deep, breathless, heart bursting, paralyzing grief.

After seeing that picture, I let a little of that grief in. I'm not sure I can articulate it well, but that grief was so heavy I could hear my heart beat in my ears and I thought it just might beat out of my chest. It left me breathless and gasping and with the realization that I have not mourned that son properly. I have not mourned all of the things he could have and should have been. And I think it's a disservice to myself.

I didn't want to say it but I miss him. I can only admit that after reflecting on the fact that I've tried my hardest not to miss him. I've tried with all my might to emotionally check out whenever someone else mentions the old Christian. I nod and smile and listen, but only halfway. I've told myself move forward, this is Christian, focus on him, focus on Lola, focus on now.

But all alone, when nobody was looking, it finally happened...I missed him. I mourned him. And it was painful and for a second I thought I just might die. But it was good and it was freeing. Acknowledging the old Christian, my son who died that day, allowed for more truthful and whole acceptance. Not just the kind of acceptance I repeat over and over until I believe it.

Now, this Christian laying right here next to me, I love him deeply and if he learns comprehension of anything else in his life, it's that we love him because we tell him so about a hundred times a day. He has changed many lives, including mine and I'm grateful for every blessed day I'm given with him. But it's okay to miss him.

2mL's

Too much too soon?

"Never!" I'd normally shout.

But, really, I think Christian suffered a little too-much-too-soon-itis. It's a medical term, I'm sure.

As we were weaning his seizure medication, Sabril, which he'd been on since last spring, we would decrease by 2mLs a week. Things were going great! We saw more and more clarity. He wasn't pulled so tightly to the left with his eyes and head, he was having less seizure activity, more consistent head control, it was going swimmingly!

Then, two weeks ago, we hit his last 2mLs. No big deal, right? He hadn't suffered any withdrawl symptoms yet, and we started at 20mLs.

It was when we took away the last 2mLs that Christian began to get really tight in his tone. He was crying through the night, his sleep was all messed up, he even progressed to crying during the day nonstop. So at that point I decided to give it back.

Well, if you remember, we found the culprit - the monster molar! And an ear infection! We got a prescription for an antibiotic and started a tiny dose of Melatonin and we were on our way! After I figured out the molar/ear ache debacle I took away the Sabril again, because, surely, it wasn't that causing all this discomfort.

But, alas, after a few days of the antibiotic, multiple doses of Tylenol, and Melatonin that kinda-sorta helped, there was still something off. He was still becomming inconsolable at night. He was still having crying fits, mostly at night, but beginning to bleed into the day. Nights began to blur together with days as I wrote in his journal, "Another sleepless night."

So two days ago, I decided to try and give him back those 2 pesky mL's. And you know what...he started sleeping again. We both did.

When trying to figure out what was working I had to pinpoint when he was at his best and when  it started to go south?

Well for Christian it was at 2mLs. Every week, as we reduced he was giving us more and more, getting better and better, more focused, even trying tripod sitting which we'd never been successful at. After we took away those 2mLs it was like too much too soon. He was extremely sensitive to most stimuli. He would have an exaggerated startle at the slightest new sound, it didn't even have to be a loud sound. Just a new sound or feeling and he was startled. (There is a fine line between seizures and startles but I know my son and when it is a seizure you can see it in his eyes. The exaggerated startle is not uncommon for those who have brain injury. It looks like a newborn when they startle - both arms fly out to the sides in response to sudden stimuli and it's actually called a startle reflex.)

My Mama Bear gut feeling about it is that being off all medication was just too much for him, too soon. It was like he was bombarded with information and sensory input that was numb for almost a year. It's like all those neurons were exposed to information all at the same time and didn't know what to do. And, boy, did Christian ever let me know. It was painful for the both of us.

So I gave it back. Like a Mama giving a baby back his pacifier. I gave in. And it worked. He is just calm enough to rest but still vocal enough to tell me when he's bored or wants attention or to be held. I will keep him at the last 2mL's until I'm comfortable he can handle a decrease again and then I'll wean those last 2mL's slower than just going cold turkey.

We'll figure this out, I know we will, but in the mean time we've got sleep to catch up on.

We are trying something new, though. It's called Amantadine and we started a trial yesterday. But I've taken up your time with a little too much medical jargon for one night so stay tuned!

There's always more to come!