June 26, 2014

Joseph's Condition ~ Choreoathetosis

Choreoathetosis is the occurrence of involuntary movements in a combination of chorea (irregular migrating contractions) and athetosis (twisting and writhing). ~Wikipedia

Ever since school finished up for the year, I noticed a change in Joseph that slowly, but surely was growing progressively worse.

At first I thought he had simply developed several new ticks, which kids often do at his age. Or perhaps it was due to the change in daily routine. He struggles with change.

He's always been a bit antsy and fidgety, but I started noticing that the fidgeting was getting worse and he was constantly twitching and jerking. This soon became most noticeable in his face and mouth. Recently it started affecting his speech, which was becoming slurred and hard to understand. Over the last few days he hasn't talked much at all.

Running, bike riding, and even walking seemed to be more challenging for him and soon I found that he spent much of the day simply laying on the floor.

Monday afternoon, I called my pediatrician's office to set up an appointment for Joseph. I was worried at how long it would take to get an appointment, but they told me my doctor had just had a cancellation for the next day.

Tuesday we had Jackson's appointments in Salt Lake and we took Joseph with us. It worked out that as soon as we got back into town, we drove straight over to his appointment, barely making it on time.

After that visit, our pediatrician guessed at what it was (and he was correct), but wanted to defer to the pediatric neurologist.

My pediatrician called right away and talked to the neurologist. He said that after a referral is made, it takes 4-6 weeks to get an appointment, but the neurologist would stay late on Friday to see Joseph.

I called the office to confirm the appointment and was told that they could actually get Joseph in the next day, on Wednesday.

Wednesday afternoon we arrived for our appointment. An hour later we met with the neurologist. After many questions and a thorough exam, he told us that Joseph has Choreoathetosis.

He doctor didn't seem overly concerned and I was just happy that it didn't appear to be a brain tumor or something.

I tend to think worst case scenario.

So now we know what it is, but we still don't know for sure what is causing it.

The doctor asked if Joseph had had strep recently. I told him no. In fact, the only time Joseph has been sick the whole winter was a few months ago when he caught a minor cold/cough.

He said that based on Joseph's symptoms, or lack thereof, he's feels almost sure that Joseph probably had step, but didn't exhibit any strep symptoms (apparently strep can be naughty like that) and sometimes when strep goes untreated with antibiotics, the antibodies the body creates to fight the strep will also continue on to attack other parts of the body, such as liver, kidneys, etc.

In Joseph's case, they are attacking his entire nervous system.

Symptoms for this take a couple months to start showing, so I suppose it seems the most likely scenario.

We won't know for sure until all of Joseph's blood work comes back, which takes about a week, but they think that's what it is.

If it's not then they will do more blood tests in search of another cause, such as a thyroid problem, and only if all of that comes back negative would they do an MRI.

But he's pretty sure it's Sydenham's Chorea (strep based).

One big concern if it is the strep, that untreated it can cause arrhythmic fever and attack his heart valves. So if the blood work does come back positive, then we will need to do a echocardiogram to make sure his heart is okay.

As of right now, they started him on anti-seizure medication that will help control the twitching and writhing. He'll be on that for three to six months.

Poor kid, I can't imagine how frustrating that must be to have a hard time doing something as simple as talking. But he has been amazing through it all, he really has.

No complaining or whining, he didn't flinch when they drew his blood this morning. He even did pretty well at his baseball game last night, even though you could tell he was struggling a bit.

So I guess right now we just have to wait for the blood results then move forward from there.

We had to take a video of him doing certain things so in a month we can see how he is improving.

He can't hold out his arms and hands without his fingers reflexively curling as though he were playing a piano, he can't even hold out his tongue without it involuntarily pulling in and out.

Still, I am relieved that we know what it is and can at least start treating it.

Thank you yet again for those of you who prayed for us.

The way everything worked out so quickly and all the appointments lined up so amazingly, I know the Lord was looking out for Joseph.

June 25, 2014

Jackson's Helmet Graduation

3... 2... 1... WE'RE HELMET FREEEEEEE!  (for all you Dave Ramsey fans)

Wahoo! Yesterday was the big day. Can you believe it!

We drove down to the orthotics office and got some scans done of Jackson's head. Everything looked awesome!

Seriously, I am amazed when I look at Jackson's before and after images.

Red line is before surgery, Blue is now.

BEFORE                                                                       AFTER

BEFORE                                                                       AFTER

I feel an overwhelming sense of gratitude when I look at these images. It's amazing, isn't it?

After that we drove to Primary Childrens and met up with Dr. Siddiqi. He gave Jackson a good look-over and officially gave us the go-ahead to be finished with the helmet!

Well, for four weeks anyway.

Then we go back down for a few more scans and as long as everything still looks good, we are done permanently!

I feel confident that all will be well though. Hubby asked Dr. Siddiqi if he had ever had to put a child back into the helmet, and he said no. But until he gets a hundred kids to do the same surgery/helmet routine without needing to come back to the four-week follow-up, they'll keep doing the check-ups.

Better safe then sorry.

But everything looks so good with Jackson I actually don't feel worried at all.

Jackson always did get a bit wild during helmet break hour.

And yesterday when we took the helmet off was no exception. He was crazy wild and hyper! After it been off for hours, he about started crawling. Seriously! It is as though he simply can't wait to take off!

I am just so happy to be done before the blistering heat of the summer months. Because that big ole' plastic helmet could sure make him sweat and we don't have air conditioning.


So other than Jackson's follow-up in four weeks, we are good to go!

Happy Graduation Jack-Jack!

Now, if only I knew whether the reason you refused to sleep last night and kept me up at all kinds of atrocious hours was because you missed your helmet, or because you are teething so bad.

Either way, between you getting up and Claira walking in at 3:00am demanding a bedtime story, Hubby and I look like zombies today.

But don't worry, the zombie look is very flattering on us... really! *insert eye roll that took too much effort and caused a ginormous yawn*

And now to tackle our next challenge.

We are taking our 8-year old Joseph to see a pediatric neurologist this afternoon because of some serious changes we've seen take place in him over the couple few weeks. (slurred speech, loss of reflex control, etc.)

The change is definitely noticeable to others as well.

Our pediatrician checked him out as soon as we got back from Salt Lake and turned right around and set up the appointment with the neurologist.

*sigh* Faith and not fear, right?

I've got this.

Oh, and our dishwasher decided last night that it was through working for us.

I'm not sure if it was the hours or the difficulty of the job, but it didn't even bother to turn in its two week notice. Just up and quit on us.


Time to teach the kids how to wash dishes by hand.

Bring it on.

June 23, 2014

I'm Aliiiiiiiiiiive!

Hello? Is anyone there?


Ugh, cyber moth balls and code dust. Bleh.

Looks like this place hasn't been touched in a while.

Oh wait, I remember this! This is my blog. Indeed, it is starting to come back to me. Once upon a time I spent much of my week recording all the day-to-day antics of my wild and motley bunch.

Ah, those were the days.

People use to read this, (still not sure why) and even comment. *gasp*

Yes, I have been blogging long enough that I remember when people use to leave comments.

Consider me ancient.

Still, I am so far behind I'm not even sure where to start! Especially when there are so many current happenings I really should keep up on as well.

If I actually get around to blogging this week, you may get some serious time whip-lash as I jump between current and past happenings.

Ooh ooh ooh! *complete change in story line* But good news! We FINALLY finished the two bedrooms in the basement!

*insert awkward happy chicken dance*

The eight of us will finally be able to spread out to five bedrooms instead of squeezed into three.

So basically I will be re-doing my entire house.

I am terrified at what I will find under all the furniture and in the dark corners of the closets.

I may not come out of this the same.

For the next couple weeks my home will be in a constant state of epic disaster awesomeness.

I need to make a sign to hang on my front door. "Visitors beware! House under complete renovation. Please leave chocolate and run!"

I only looking out for their welfare.

The only down side is that I need to go through each child's clothing stash, figure out what doesn't fit anymore and trade out sizes.

I have been avoiding this day for far too long.

But I suppose it's not fair for my children to have to endure high-water pants and wedgies forever.

And so, I am off to tackle the day.

Who knows? I may even be productive enough to finish another post for tomorrow.

Because I believe in miracles.

Speaking of miracles, if you still visit this almost deserted corner of the blogosphere, you deserve a concentrated dose of adorable cuteness to brighten your day.

You're welcome.

June 8, 2014

Dear Hubby - 2

Oh Hubby *throwing self on couch, dramatically flinging arm over face* what a week!

I've decided you can't travel anymore. I never make it to bed at a decent hour when you're gone.

Just the other night I stayed up until 2am watching cheesy Christmas movies.

For no good reason!

*hauling self off couch to pull chocolate chips out of the pantry*

There are so many of the little day to day things I wanted to tell you about, but when my dad ended up in the hospital with a very serious case of acute pneumonia, I got distracted with all the things involved in that situation.

(I'll write more about that later.)

For this letter, I wanted to fill you in on a few things about the kids from this week.

*pouring a third of the bag into a bowl, then flopping like a fish rather ungracefully back onto the couch* 

For starters, school is over!

No more school lunches! Wahoooooooooooo!

*doing a happy dance that only involves arms so as not to upset the bowl of chocolate chips on my lap*

I despise making school lunches.

I have no logical explanation. I just do.

Thursday was the last day. I practically had to drag the boys from their beds like sacks of potatoes the last two days of school because they were so tired they didn't want to get up.

Then Friday and Saturday, they were up at an atrociously early hour begging to play on the kindle or to watch a movie.

The universe hates me.

I've decided that I'm going to set up some summer rules such as: no TV before 1:00pm, and have a small set of daily chores for them to complete.

I don't have any ulterior motive for doing this outside of hoping it will dissuade them from waking up before 6:30am.

On rare occasions such as this, my true genius shines forth.

But as you know, the boys received "perfect attendance metals" on the last day of school. So they were pretty excited about that.

Honestly though, I should have gotten the medal.

I mean come one now, let's give credit where credit is due! Am I right, or am I right?

Ah well, I shall reward myself with another chocolate chip.... or twelve.

Oh, on a different note, I wish you could have been here the other night, when the kids found an old stack of "Highlights" magazines.

Apparently there is a riddle section in each one because they were all reading each other jokes.

It was hysterical. One would read a riddle, the others would try to answer, then the answer would be given and they would all bust out laughing.

In that order.

Riddle, answer, hysterical laughter.

Riddle, answer, hysterical laughter.

Riddle, answer, hysterical laughter.

This went on for a while until this joke was read.

Q: Who un-invented airplanes? 

A: The wrong brothers.

*confused silence, blank stares, crickets chirping*

Savannah finally solemnly stated, "I don't get it."

It was my turn to laugh hysterically.

Same with the this one:

Q. Why do cowboys die with their boots on?

A: So they can kick the bucket.

A long confused silence followed that one.

Haha, it was great.

In my defense, Claira asked me to take her picture so she could see how dirty she was.

Oh, here's something else you'll get a kick out of.

Friday night it was Claira's turn to pray. I just want you to know, it was the longest prayer given by a three year old in history.

You have no idea how much I am not exaggerating.

You know how she still talks. When she has something long to say or is unsure how to say it sll, she goes, "ehhhehhhehhhehehhh" before ending with two to three words.

Now imagine for a moment, a twenty minute prayer going on like that.

"Ehhhehhhehhhehehhh wuv each uder"

"Ehhhehhhehhhehehhh baby Jackson head"

"Ehhhehhhehhhehehhh ganny eh papa in hospital"

But then it started getting... interesting.

"Ehhhehhhehhhehehhh eat burday cake"

"Ehhhehhhehhhehehhh go to the pawrk"

I opened my eyes to see if she was goofing off. But her eyes were closed, her head was bowed, and she was being perfectly serious.

I tried to help her end the prayer a few times, but she would only whisper, "No mommy! Not yet!" and just keep on going.

But it all went down hill after this one.

"Ehhhehhhehhhehehhh poop in da toilet"

I admit it, I'm the guilty one who started laughing first. I know I shouldn't have, but I couldn't help it. She was being to serious!

That's when she opened her eyes, glared at me, clenched her teeth and harshly whispered, "Don't waff mommy!"

I'm a little ashamed to admit that that only made it worse.

The entire family was just in tears from all the laughing.

Ah well, at least that night ended with everyone in good moods.

You'll be happy to know that I finally mowed down the jungle we call a lawn. Our house seemed to be the only one whose grass was almost tall enough to make a maze with . So Saturday night I did the whole front first in case I ran out of time and couldn't finish the back.

But I did. At 9:30pm... in the dark.

I was waiting for an angry neighbor to start throwing rocks at me or something. It took a little longer there at the end because I had to run in and out of the house to help with the kid's baths and showers.

Muti-tasking at it's finest.

You're welcome.

We even survived church fairly well. It went far better than I imagined it might.

That calls for another bowl of chocolate chips!

Well, I better get to bed before midnight tonight so I can get up and remember to take Alayna to her first t-ball game in the morning.

I wouldn't want to forget it the way I did her last practice.

Epic fail.

Dang. I don't deserve another bowl of chocolate chips after all.

Well, take care and hopefully we get another chance to chat soon.


June 4, 2014

Dear Hubby - 1

Hey Hon,

Glad to hear that your flight went relatively well and there was only one delay. I know sometimes it can be a chain reaction and you end up missing connecting flights so I'm glad that wasn't the case this time.

Sorry about your luggage though, hopefully it came in this morning.

You're going to have to start a flight log and record all the times your flight is delayed or luggage gets lost, left behind, or sent somewhere else.

You'd have quite a book.

Well, we did okay here yesterday.

I tried to think of something cute to describe how the kids were, such as: they all had bees in their bonnets. But in all reality, a better description would be along the line of: a horde of cats with rabies.

I'm not entirely sure what happened, it may have been all the sugar from the night before, or the fact that they went to bed late. Probably a combination of the two, but my main role for sure ended up being that of a referee.

If you can referee rabid cat fights that is.

I also wasn't joking when you read my text that said, "Be glad you can't see the house right now, you'd probably faint."

Callie can testify to the truth of that statement because she stopped by and I can only hope we'll still be friends after seeing my house in such a state.

The truest statement ever made is that people never come over when it's actually clean.

Or maybe.... *epiphany* that statement was written by someone who never cleans their house, just so people think it's clean once in a while.


That's brilliant actually.

But don't worry. After a modge podge dinner of this and that, we cleaned up the living room and the bedrooms.

Which somehow managed to triple the laundry pile.

The kitchen needs serious intervention, but I did manage to do a load of dishes.

So don't worry, your rabid kittens had a nice, clean place to sleep last night.

In other news, Alayna managed to drop Jackson flat on his face, which he didn't exactly appreciate, and Jackson later puked on Savannah, which she didn't exactly appreciate. So she set Jackson down who then promptly pulled Alayna's hair.

Must one of those "circle of life" things.

But the girls did spend a couple hour playing outside with the water hose.

Between yesterday and the Saturday car wash/puddle making contest that went on while you were at work, our water bill will likely have doubled this month.

Just giving you a heads up.

Here's something to make you smile though.

Since this is the boys last week of school, they are coming home with piles of paper, projects, and left over school supplies.

While going through a pile of stuff Joseph brought home, I found this.


I know, pretty cool right.

Then, directly under it, I found this one.

I really did laugh out loud. Love that kid.

Bedtime was okay. A few tears over the bathroom as usual. You know, kids fighting over space, toothpaste, etc.

Claira came out of bed only 832,746,329,873 times instead of 832,746,329,874 times.

So we're improving there.

Well, Jackson is demanding some attention so I better get going.

He says hi by the way.

Gotta love helmet break hour!

Thankfully everyone is in much better moods this morning so all is well.

Take care. We all miss you and hope you have a good trip!

Thanks for all you do for our family. I appreciate you and all your hard work.

Love you,

June 2, 2014

Jacob and the Dragon Cake

I should have seen it coming.

After all, Jacob had been been bringing home giant dragon books from school to read.

They're close to 600 pages each.

He's in 1st grade.

Sure he may not have finished them, but I couldn't help but be impressed that he wasn't intimated by them either.

So when I asked what kind of cake he wanted for his seventh birthday, (which was way back at the beginning of May) he didn't even pause to think about it.

"A blue dragon cake!"

Seriously? *nervous laughter* Heh, okay then. How in the world was I going to pull that off?

So I turned to the only internet source of crafty knowledge greater than google.

Do my everlasting relief, I wasn't disappointed. 

And despite all the amazing cakes that I would never in a million years be able to to come to accomplishing, I was relieved to find a dragon cake tutorial a simpleton such a me, myself, and I could follow. Tutorial found HERE.

Ta da......

Jacob was wildly enthusiastic about it.

Oh ya. Coolest mom of the day award goes to me! Booyah! Right here baby!

My only goof-up was, since I never buy fruit roll ups, I just grabbed a box thinking they were pretty much all the same.

My bad.

Turns out I grabbed a box that had cartoon faces on the roll-ups.

Jacob actually thought the faces on the wings were super cool, but felt as though something was missing.

So he added his own touch.

Then, taking out some leftover easter candy, went on to tell the story of how the lego man tried to steal the dragon's eggs, so the dragon had to... well, you can see how it ends for lego man.

Poor fellow.

He should have known better.

In the craze of getting everything ready, I didn't quite get a chance to finish decorating the table.

So, I improvised.

There's my collage art degree shining forth right there people. LOL!

Candles are lit!

Mission Blue Dragon cake: Accomplished.

A couple days later, we took Jacob out on his mommy/daddy birthday date.

As usual, we asked where he would like to go.

Since he loved going to Burger King so much for his birthday last year, he wanted to go again this year.

Then changed his mind to Orange Leaf.

Nope, then changed his mind again... to Arctic Circle.

*lifting eyebrow in unimpressed fashion* 


Of all the places he could go, he chooses Arctic Circle.

Clearly my children have simple tastes.

We tried to dissuade him, convince him to go somewhere else, anywhere else that had a playground, better food, toys, anything!

But his mind was made up.

Arctic Circle it was. *shudder*

Jackson didn't think it was too bad.

And really, it turned out great. Jacob has a blast and for some reason thought the little green alien that came in his kid's meal was the coolest thing on the face of the planet.

No pun intended.

Happy birthday to my life of the party, crazy clown of a kid!

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