September 11, 2014

Giddy-Up Cowboy!


They say hind-sight can be a terrible thing.

But I can honestly say, sometimes it's an amazing thing.


It was at my cousin's surprise birthday party a few months ago where it first came up.

Horseback riding lessons.

One of my cousin's friends was talking about this wonderful lady they knew who gives lessons from her home. They raved about how great she was, how amazing she is with the kids, and how low her prices were. She gives lessons simply because she enjoys it so much.

Well sure lessons would be fun, sure the kids would love it. But you know, it's not something I ever really thought about so, cool info but meh, whatever.

But the more we dealt with Joseph's chorea, which made for one wickedly hard summer especially for him, the more I kept thinking about it.

Horeseback riding.

It just kept coming back to my mind! I kept thinking about how therapeutic it could be for Joseph. He doesn't always enjoying being around people, I think he gets embarrassed too easily.

I didn't know if he would like it or not, but it was worth a shot! 

Hubby wasn't exactly keen on the idea, but I just couldn't shake it, especially when we decided to homeschool.

So I finally got her info and made a phone call. 

We went out for an initial visit and all the kids just had a blast meeting and feeding all the horses. 

But it was Joseph who I watched carefully.

His eyes lit up and a giant smile debuted on his little face. He couldn't get enough of the animals! Yet he seemed calm and content.

After so many tantrums, so many tears, it was like seeing a whole different kid.

I made up my mind then and there.

So the first week of school also brought with it Savannah and Joseph's first riding lesson.

So out we went. I couldn't wait to get some pictures!

Then my camera card was full.

Then the camera battery died.

Story of my life people.

So this week I made sure to go fully empty, charged, and prepared.

And... it was freezing cold and very windy.

But that didn't matter to Savannah and Joseph! No siree-bob. It's one of the only times I can think of that they didn't wimp out of something just because they were cold.

We found some cowboy boots earlier this week and I can say without the tinyist bit of exaggeration that those two literally wore them from the moment they woke up until the time they went to bed for three days straight. 

Joseph looked awesome in his bright blue shorts, bright red shirt, and cowboy boots that first day.

Oh ya.

He even walked around saying "howdy partnah", while Savannah insisted on wearing plaid.

Hope the cowboys don't mind the stereotyping.  Haha!


So here we are in the freezing wind. Joseph leading out "his" pony: Little Red. 


And up we go!

Working on balance.


Loving every second of it.

Seriously, I haven't seen this kid smile this much in a long, long time. He L.O.V.E.S. it.


Brushing Little Red down after a nice ride.


While Joseph rides, Savannah impatiently waits for her turn on "her" horse: Gayla.


She was pretty concerned the first time about how she was going to be able to get up on the "giant horse"

Good thing stairs were invented.

Up she goes!

Also working on balance exercises.

She too loves every minute of it.


I love that both Savannah and Joseph are doing it. They talk about the horses with each other all week long.





Since we go in the middle of the day, Alayna is home from half-day kindergarten so all the kids get to come expect Jacob, who is still in school.

So while the oldest kids ride, the younger ones get to enjoys the other animals.




Jackson was mad every time I set him in the back of the car to get out of the wind.


He preferred hanging out with his pal Bess.


It's the only time he will actually stay put! He'll happily play in one spot as long as Bess is with him. Otherwise I have to carry him or his exploring leads him to taste test everything.

And since rocks and horse poop all looks the same to him right now... needless to say he doesn't get the freedom he wants.


Sometimes it's easier to see the Lord's hand in your life when you look back at how things worked out, especially when you can finally see how all the pieces fit together.

I'm so grateful that Joseph has been watched over and cared for, even when things were at their worst.

Hind-sight.

It can be a wonderful thing.

September 3, 2014

First Day of School 2014 and Other Random Things


Rabid kittens.

If I could (lovingly) describe how my children have behaved the last couple weeks, it would have to be rabid kittens.

Why? Who knows. 

I could put together a list of all the possible reasons why, but in the end it would still only result in rabid kittens.

So it was good that school started this week because it forced me to put myself back track.

Take command.

Set a routine.

Get rabies shots.

No wait....

Anyhow, yesterday was the first day of school for us.

Savannah (5th grade) and Joseph (3rd grade) are my two homeschoolers this year.


Oh, and Claira, who thinks she wants to do all the same math problems that Savannah and Joseph are doing.

I didn't know she understood Greek.


Joseph was exceptionally excited about the idea, until I came into his room at 6:30am that morning and woke him up along with everyone else.

He was under the very false impression that he would get to sleep in because he was being homeschooled.

MWAH HA HA HA! (laughed lovingly of course)




It will take us a bit to work out the bugs and figured out a good pace and schedule, but I think it will all work out.

After watching Joseph in action for just the first day, I have no doubt whatsoever that homeschooling was the right choice.



As for Jacob (2nd grade) and Alayna (Kindergarten), they were excited to head out the door!


Alayna is beyond thrilled that she "finally" gets to go to school.

In case you couldn't tell.


What is that big scab-looking thing on her face you ask? Funny you should notice such a gigantuous looking mark.


Here's what happened.

The kids were outside playing when Alayna starts screaming at the top of her lungs.

All my children have been, er... blessed *eh hem* with extremely robust local cords and strong lungs to pair them with.

With hand over cheek Alayna manages to scream out to me that she was stung by a wasp in her eye!

Obviously it wasn't in her eye, but close.

Dare I mention that I had crouched down in front of her and turned her head so I could see better? And that said screaming was done directly into my ear?

So don't think I am ignoring you. It's just that I can't hear anymore.

We immediately put on a insect bite/sting pain reliever pad from the first aid kit and I busted out my handy-dandy Melaleuca oil that I always put on the kids stings.

Yes she has been stung before and no, she is not allergic to anything mentioned above.

Yet this was the result.


Weird right? Upon closer inspection it almost looked like she had been stung twice, but I can't be sure.

The oddest thing is now that's it's been a few days, the discolored skin started to peel off, like a burn does!

In fact, by this morning she had about picked away all the discolored skin.

Strangest thing.

So now that we have veered far off the "first day of school" course, I might as well throw in a few adorable pictures of this trouble maker.


He's a crawling machine!


He tries to put everything into his mouth, including ants. (don't worry, no ants have been harmed... yet)


He's realized that standing up on his own is soooooo cool and has been trying to figure out how to move his feet after achieving that stance.

I made the mistake of mentioning to Savannah that Joseph was walking at nine months. Since Jackson is nine and a half months old she thinks he is lagging behind.

I have assured her that is not the case and he still has plenty of time.

Also, if she keeps up with her goal to make him walk before he's ten months, I will lock her away in the tallest tower and chain a dragon in front so that she will never escape!


She didn't seem too concerned.

August 20, 2014

Update on Joseph - Just When I Thought We Had It Figured Out


I apologize for leaving everyone hanging with Joseph's situation. But I appreciate the comments from you asking for an update. It's nice to know that people are thinking about him.

Well let's see, there is much to tell so where to start... I guess from where we left off on his last update.


When Joseph was first diagnosed we were given a prescription for an anti-seizure medication called "Gabapentin" to help control the chorea. Unfortunately, after several weeks of slowly working our way up to the highest dose, it was clear that the medication wasn't working... at all.

Well, other than the side effect of fatigue that is. That seemed to be working just fine.

About three and a half weeks ago, we switched him over to a new medication called, "Depakote". We were told it would take 2-4 weeks before we started seeing any results from it.

The side effects for this would also be fatigue, but include increased appetite (which for Joseph is good), lose of vitamins and minerals in his system, and a possibility for complications with his kidneys... or liver... or both.

I can't remember now. But blood work will need to be done every month to make sure those organs aren't being effected.

As we weened him off one medication and started him on the other, Joseph was exceptionally moody and high strung. It wasn't until someone mentioned that perhaps it was the switching of the meds that was throwing him off that I even considered that could be what it was.

I haven't had enough experience with meds to have even had that thought cross my mind. But I really think that was the case. Now that we have adjusted, his mood has improved significantly.

But it was a really difficult couple of weeks, lots of tantrums and melt-downs, and Hubby was traveling for work.

Sometimes I felt so far out of my parenting league it seemed I didn't know which way was up and which was down.


About the time we switched his medication, we were also to start him on the never-ending round of antibiotics. We had decided to go with the shot every four weeks instead of taking daily doses of liquid.

I had the appointment all set up for his first shot when I was informed that the shot is quite painful. Not at all a quick or easy experience. The liquid is thick and goes in very slowly, also his arm would be very sore for a couple days afterwards.

Well, I for one was getting nervous about it. Joseph was really struggling, we had just found out he had lost five pounds which on him was not good since he is so skinny anyway, and I really was concerned that this would all just be too much for him.

That's when someone blessedly told me the penicillin comes in a pill form! When we talked to Joseph about the two options, he immediately jumped on the pill idea. He doesn't have a problem at all with needles and no matter how many times his blood gets drawn, he doesn't even flinch. But the idea of a painful shot was too much. Since he has to swallow his other medication, it has been no problem throwing in an extra pill.

I'm sure at some point in the future we will re-visit the shot. But for now, this is his daily regiment.


  • Anti-seizure meds
  • Antibiotic
  • Probiotic
  • Multivitamin

It is a lot. But he does remarkably well with it and takes them all like a champ.



About a week and a half ago I thought I started seeing a bit of improvement. But I almost didn't trust myself. I was nervous that perhaps I was just seeing what I wanted to see.

But then others started commenting on how much better he was looking, that he wasn't quite so floppy and twitchy. Even his speech was starting to improve! Yay!


Up till now we had only seen our regular pediatrician and the pediatric neurologist. Yesterday we finally met with a pediatric cardiologist to learn more about his heart.

*sigh*

I should just know by now that every specialist will have new and/or different information than what we were told before.

I was under the impression that we were trying to avoid rheumatic fever so that more damage wouldn't be caused to his heart. But according to the cardiologist, Joseph already had rheumatic fever and that is what caused the chorea and the leaking in his heart valves.

I'm not sure if it's the other doctors that got that wrong or if I just wasn't understanding it right.

But whatever result you got from having strep is what you'll get again if you catch strep again. If he does get it again, his heart valve would probably receive enough damage to need a valve transplant!

So we were then informed that Joseph would need to be on penicillin until he TURNS FORTY YEARS OLD OR UNTIL HE ISN'T AROUND CHILDREN ANYMORE, which will probably be never. So basically he will be on antibiotics FOR THE REST OF HIS LIFE!

If I had a hard time swallowing the "until 21" bit, the whole "for the rest of his life" thing is rather mind-whirling for me.

*double deep sigh*

We are suppose to meet with someone from "Infectious Diseases" at some point so we'll be asking them about this.

Other than that his heart looks and sounds really good. But if he ever gets sick, especially with a sore throat, or if any of us get a sore throat, or if he is around anyone with a sore throat we will need to take him in to see the doctor and get a quick strep test.

Every. Single. Time.

The cardiologist also told us that there has been an epidemic in the mid-west since the 1980's that about ten percent of people who have strep don't even know they have it because there are no strep symptoms! This often leads to other very serious health issues.

She said that millions of dollars have been dumped into research to find out what is causing this but they still have no idea why this is the case.

Interesting.

But if for some reason Joseph does catch strep again and shows no signs, we would eventually know because his chorea would come back.


As of now we are still dealing with his chorea, it is still noticeable, but has indeed improved.

It gets bad when he is tired, stressed, or upset.

However the cardiologist said that besides the anti-seizure medication, steroids are usually used to help bring the inflammation down quickly, thus getting rid of the chorea faster.

Well, this is the first time I've heard this! So she is going to look into that for us.


On that note, we had been debating whether or not to send him to school this year or if I should homeschool him.

I had been waiting to see how much his chorea would improve before we decided. I had almost reached the decision that I would send him when we met with the cardiologist.

She encouraged the idea of homeschooling because, despite the improvement, it will still be hard for him to hold still at all, let alone for long periods of time. Same goes for writing and holding a pencil.

Plus will all the stress that would come with school, it would only make the chorea act up and as we all know, kids can be mean. I'm afraid he would get teased and picked on.

Not to mention all those lovely colds and illnesses that he we would constantly be around.

So, I guess I am homeschooling my oldest two this year. I think it will be easier to do the two instead of just Joseph. This way they have a "work" partner. Someone else who is doing school work and they can work together.

Believe it or not, I don't mind the thought of homeschooling, though I do feel rather unprepared for it all.

But I am thankful for the kindness of our Heavenly Father and others who have reached out and helped us through everything. And I know He will continue to help and be with us.

It's all good. It is!

*sigh*

I can do this... right?

July 30, 2014

Jackson's Tackling the World - An Update.


I know I haven't been writing much, but the truth is whenever I find myself with a spare moment I have spent those moments selfishly in the company of a good book.

Because reading is simple.

I like simple right now.

And air conditioning.

But I can't do anything about not having air conditioning so I'll just keep to the reading thing.


Jackson had his one-month helmet free check-up yesterday.

The three-hour drive wasn't tolerated quite as well by Jackson as it use to be.

You see, when he was wearing the helmet 23 hours a day he was a really calm, easy going fella. Then during his hour of freedom from it Jackson would turn into a bit of a wild child! Kickin' and wigglin', laughin' and playin' as though he had just received a chocolate bar!

Oh wait, that's just my reaction to chocolate bars. Eh hem...


Anyhow, when we got the go-ahead to leave him out of the helmet, it wasn't but a couple days after that Jackson decided such freedom from restraint deserved celebration by crawling.

Yes, this little man has been mobile for at least three weeks now.

I took this video after he had been crawling for a little over a week.



Less than a week after discovering how much he enjoyed crawling, he tackled the art of pulling himself up into standing position with the aid of anything within his reach.

He learned quickly that blankets hanging off the side of the couch didn't quite cut it.

He is part-monkey.

Gets it from his dad's side I'm sure. ;)


Just a couple days ago he about gave me a heart attack when, after leaving him downstairs to go up and answer the door, a few minutes into talking with a friend I look over my shoulder to see him nonchalantly standing at the top of the staircase.

Monkey indeed.

About a week after he started pulling himself up, he wanted to show us all what a big boy he was and let a couple teeth through.

My shoulder has the marks to prove it.

Someone please tell him to stop growing up so fast. I can't handle it!



Anyhow, his appointments went great. His scans showed good overall head growth, although the front and back had grown a tad more than the sides, but the surgeon didn't seemed concerned.

The blue line is the new scan.



When Dr. Siddiqi picked him up, Jackson seemed to automatically settle into posing mode as though he and the doctor were getting ready to grace the cover a magazine.



Thanks Dr. Siddiqi! We appreciate you SO much!

We have to go back and repeat the process when Jackson turns one, head scans and all. But so far everything looks great!

*big sigh of relief*

Now, what book should I read next....

July 14, 2014

Results of Joseph's Echocardiogram


Remember in my last post when I had said that I finally saw a tiny bit of improvement in Joseph?

I take it back.

The next day everything was right back to the way it was and has not improved.

But nor has it gotten worse.

So I count that as a blessing.

Joseph is dealing with it okay. We have good days and bad days. Occasionally, we have a really, really bad day. There are times his frustration is almost palpable.

One day I found him laying in the hallway whimpering. When I asked him what was wrong, he struggled to get up but had such a hard time, slumped back down. Crouching down I asked him again what was wrong. He tried to say something but again was frustrated that it was hard to talk.

I asked him if he hurt anywhere, he shook his head no. I asked if he was just frustrated because of how his body is behaving, he nodded.

He doesn't talk much anymore and when he does I often have to guess at what he said or ask him to repeat himself.

Yesterday morning when we got dressed for church, I noticed his pants were looser than before. He must be losing some weight because it is so difficult to eat. While he eats the meals I set out, he doesn't snack much so I do my best to supplement his meals with health shakes, green smoothies, etc.

I suspect he may be losing a bit of muscle mass as well because it's too hard to be active. I need to take the kids to the swimming pool more often, that seems the easiest way for him to be active, in the water.

UPDATE: Just got back from the doctor's office and the good news is Joseph has not lost weight! So it might just be some muscle mass from not being as active. But his weight is fine. Small blessings.



Anyway, now for the news on his echocardiogram.

We went over to the hospital for the ultrasound on Wednesday. While we waited Joseph tried to get comfortable.


Tennis shoes are frustrating for him to put on so he prefers flip fliops, but they are very difficult for him to walk in right now, so he generally kicks them off as soon as he sits down anywhere.

We were finally moved into a room and got all set up. Joseph preferred silliness to smiles.


I'm not gonna lie. Watching the ultrasound of his heart was fascinating. Our human bodies really are quite remarkable.

The ultrasound tech kept teasing him on how "ansty" he was and repeatably but kindly asked him to hold still. I had to explain everything to him so he understood why Joseph was having such a hard time holding still.



I asked the tech if he noticed anything off the cuff to give him cause for concern. He replied that he wasn't the expert, but nothing looked worrisome. Joseph did have what looked like some leaking in a couple of his valves, but nothing serious.

I wasn't entirely sure what that would mean, but grateful the tech didn't feel the need to call anyone in for something serious.

When he was done and Joseph sat up, the tech remarked on a large bruise that had formed on Joseph's back. I said that with his current condition, Joseph has been falling a lot.

Sure enough as soon as we left the room, Joseph tripped over his feet, slammed into the wall and fell to the floor. He didn't say anything, just looked up at me while I helped him to his feet.

*sigh* I wish I new what he was thinking when those things happen.



 Friday I received the call with the results.

The pediatric cardiologist who spoke to my pediatrician said that overall, Joseph's heart looked good.

However, there is some "regurgitation" in his micro-valves. In other words, the blood that is being pumped back into the hearts from the body that gets pushed onto the lungs, those valves aren't closing all the way creating some "regurgitation" back into the body.

In any normal, healthy body, this would not be a cause for concern at all and would not be odd if the condition were to stay and never cause any trouble

However, is can also be a sign of early rheumatic fever.

So in Joseph's case with the strep and choreathetosis, he will need to be watched and seen by a pediatric cardiologist, possibly for the next few years to make sure it doesn't progress and get worse. We'll see how it goes at our first appointment.

So there you have it.

The last bit of news I received about Joseph's future (although I had found out before the echo was done) through me for a loop.

I did not see this coming.

When the neurologist first told me that after the initial ten days of antibiotics was finished we would do another round as a preventative measure, I figured that was that.

Apparently that's not the whole of it.

According to my doctor who spoke with specialists, Joseph will be on antibiotics for the next 10 - 13 YEARS.

Yup, you read that correctly. YEARS.

I distinctly remember sitting up from where I was laying on Claira's bed in the girls room, hiding from the noise of the kids while I talked on the phone, and with a lot of hand chopping movements for emphasis that no one could see (because apparently my hands get all expressive when I talk) told my doctor to, "Wait wait wait wait, back up a minute. You started speaking to me Chinese just then. What did you just say? I'm pretty sure it used the words "antibiotics" and "years" mixed together in the same sentence."

Sure enough, Joseph can either drink the pink amoxcicillon twice a day for the next 10 to 13 years of his life, or he can get an injection once a month until he grows out of adolescence.

Like I said.

Did not see that one coming.

Because the risk to his heart is too great now, we just need to eliminate the possibility that Joseph could catch strep again, especially if he doesn't exhibit normal signs of having it. And I guess strep doesn't usually build a resistance to antibiotics, so this is the route we have to take.

It took a while for that to sink in and tell myself it's all okay. Besides, I know enough people, even a couple kids with conditions that require them to get shots almost daily.

So really, once a month isn't so bad.

I really feel humbled at the help people have offered, especially with Hubby away.

For starters, people have actually said yes to watching my crazy brood when I've needed to take Joseph to doctor's appointments. Someone brought me dinner out of the blue, and my neighbor mowed my lawn for me.

I've always had a hard time accepting help from others, in truth I feel foolish having to ask or be the one who needs help.

So when I say I feel humbled, I mean it.

And I deeply appreciate it.

I really, really do.

July 7, 2014

Update on Joseph


I have lots of fun stories and pictures to share from this past week, but I thought I had better give an update on Joseph first since I have had several people ask.

Sorry but, I'm pretty long-winded in this post.



It's funny, despite everything that has been going on with us lately, between Jackson and now Joseph, I had been feeling a great deal of calm. I didn't feel overwhelmed or frustrated. Even when Hubby was put in the bishopric in our ward two Sundays ago everything felt, well... fine.

You know what I mean?

I should have known it was the calm before the storm, so to speak.

That same Sunday I just referred to, Joseph had his first really bad day since all this craziness with him started. He was grouchy and upset, he wouldn't listen and kept having mini meltdowns.

Monday was worse.

Much worse.

By Tuesday he seemed to have worked out his angry frustration and was more settled.

That same Tuesday afternoon, I drove Hubby to the airport for a sixteen-day business trip.

I took a deep breath... and drove home.

When I got there it was as though Hubby had flown off with all that peace I had been feeling. The afternoon was a bit rocky with grouchy kids, and at bedtime I had to make a very conscious effort to keep my cool, to tell myself it's all okay, to relax and not get upset, to simply take care of the kids one at a time.

With lots of mental pleading for strength and patience, we ended the day on a good note as I read to the kids, tucked them all in and kissed them goodnight.

But I felt emotionally exhausted. I was worried about Joseph. The medication wasn't making any difference other than to make him even more tired, and I still didn't know for sure what was going on.

Wednesday we had Alayna's last t-ball game and a wonderful neighbor invited my kids to spend the afternoon playing in the big pool in their back yard.

For the whole afternoon I watched Joseph play in the pool for a few minutes, then climb out and lay down for a while. Then he would play in the sand box for a few minutes, then lie down on the ground for a while.

Back and forth, back and forth.

His speech was horrible, I could barely understand what he was saying and watching him you would have honestly thought he was a special needs child when just a matter of weeks ago he had been your typical healthy, awkward eight year old boy.

By the time we got home the kids were starving and I desperately needed to go grocery shopping but didn't dare attempt it with six kids in tow, so food options were extremely limited.

Pulling out their heaven sent (in my opinion) "kids eat free coupons" to an all you can eat pizza buffet, we loaded up and drove over.

I watched Joseph put two pieces of pizza on his plate then turn to go, but because of how jerky and crazy his movements were, they promptly slide off his plate onto the floor.

He immediately slumped to the ground and hung his head in utter defeat when I told him not to pick them up.

There was a long line of people behind us so I quickly helped him up and told him I would carry his plate since those sneaky things were just so dang slippery! He smiled and as I balanced four of the kids plates in my hands, we managed to make it back to our seats without further incident.

I could see people watching him. I could see some of their assumptions about him, and there was nothing I could do about it.

The kids did decent enough but as their bellies became full, their craziness level also kicked up so I knew I needed to get out of there, fast!

As we walked out of our end booth past several others, I heard a voice say, "You're a good mom." 

I glanced up to see a lady looking right at me.

I quickly looked around and over my shoulder to see who she was talking to. It honestly took me a second to realize she was talking to me because she went on to say how impressed she was at how good my children behaved and how polite and quiet we all were.

As tempting as it was to let her know she was talking about the wrong family, I was also deeply touched and grateful for her kind words.

Always, always say kind things. Always.

At the car Joseph tried to climb in. And try as he might he could not get a good grip or foothold because of his spasms and kept slipping out.

Finally he stepped back, folded his arms around his slim body with his head down and made a small whimper.

It broke my heart. He seemed to be getting worse, not better.

We got home and I put everyone to bed. As soon as I had said my last "goodnight, I love you" I practically ran outside and promptly started sobbing.


Heavy.


I can't think of any other way to describe it.

Everything just felt so very... heavy.

I couldn't fix anything. I couldn't change what was happening to Joseph and my other half was out of the country.

All I could do was pray.

I ended up having a long conversation with Hubby through our tablets that night and by the time we were done he had managed to make me feel better.



The next morning, right at 8:00am I called the pediatric neurologist about four times in a row with no answer so I finally just left a message.

I then called my pediatrician but he was out of the office for the holiday weekend, so was the other pediatrician I asked for.

Being the sophisticated and well put together lady that I am, I started crying again and found myself hanging up on the receptionist as she kept asking me if I wanted to schedule an appointment because I couldn't say anything without hyperventilating.

Collecting myself, I called the lab where Joseph's blood work was done to see if it was finished.

I was told that all the results were back expect for two panels that they send out to California because they are so extensive.

Thinking that this meant I wouldn't know anything until after the holiday weekend, I very gracefully *eye roll* fell apart on the phone and started crying... again.

The sweet lady said she would call to see what was going on with those labs and get back to me.

The manager called me back about an hour later to say that the panels are on time and they take two weeks to get results.

Now I just felt sucker punched because I was told we'd get results back in a week.

Realizing there was nothing I could do, I packed all our stuff and drove up to my parents house half an hour away to spend a couple days for the holiday.

Now, I don't know if it was because I was a crazy-lady basket case on the phone so they sent over the results they did have to the neurologist, or if he called over to get the results because he's done this before and knew the info he needed would be ready, but maybe... twenty minutes after I arrived I got a phone call from the neurologist.

He had the results from the blood work.

Joseph's anti-bodies were very high and he did indeed test positive for strep and that is for sure what's causing the choreoathetosis. So he apparently had caught it several months ago but since he hadn't exhibited any signs, no one knew.

Guess how I handled the news?

I started crying.

Because apparently that's how I deal with everything these days.

There are many different types and strands of strep, some are just evil and don't show themselves.

The doctor said he would call in the antibiotics that Joseph would need. After ten days on that, we will do another round as a preventative measure.

According to the doctor, sometimes by the end of the first round of antibiotics, many of the symptoms will go away. We also upped the dose of the anti-seizure medication Joseph is taking since the lowest dose wasn't doing anything.

Joseph will also be getting an echo cardiogram of his heart to make sure the strep hasn't attacked his valves. If everything looks good, everything should return to normal within six months. Hopefully shorter but sometimes it takes that long.

If there is damage, the Joseph could potentially be on medication for months to years depending on how things looks.

Right now we are just praying for no damage.



After the fourth of July insanity, Sunday morning dawned with Joseph in a really bad mood.

Getting to church was brutal and sitting through the first meeting was even worse. As I struggled with Joseph many wonderful members jumped in to lend a hand with the other kids.

Not knowing what to do with him I was pleading for inspiration on what I could do to calm him down.

The thought came into my mind to massage his hands.

Okay then.

At first he was so mad he didn't want me to touch him, but eventually when he realized what I was doing and that he liked it, he calmed right now and snuggled up to me for the rest of the meeting as I just massaged his hands, arms, and back.

As soon as the meeting was over, our wonderful Bishop came right off the stand and told me to come to his office. He wanted to give Joseph and I blessings.

They were amazing.

I know Joseph will be okay. I do, I KNOW it.

But I also know that the next several weeks won't be easy.

The hardest part has been to see the judgement in people's faces as they watch him. Because the medication causes so much fatigue, he is constantly slumping to the floor. I had to keep reminding him that he couldn't just flop down and lay in the middle of the hallway. At least sit up against the wall!

The thing is, Joseph has a track record of being difficult, of throwing big tantrums and not listening. So sometimes it is hard to know how much is just him and how much is his situation.

But seeing people's assumptions about him during this rough time has been hard because they have no clue what's going on.

I now have a real sense of empathy for parents with kids who look perfectly normal on the outside, but have special needs on the inside.

Never again will I jump to conclusions.



*sigh* Our family is single-handedly making the doctors around here experts on all things "extremely rare".



Today was the first day I have seen any improvement in Joseph.

His speech was just a smidge clearer, his movements just a bit less jerky.

So hopefully with both medications we will see some improvements soon.

In the meantime I am doing what a can to help him and his little body by doing a major overhaul in our family diet lifestyle. Let's just say no more mac n' cheese. We are heading for the all natural road.

Heaven help me, especially since I don't love cooking.



Thank you to everyone who has reached out to us.

As long as the house doesn't burn down and no one breaks a bone, we should be good.


Well, assuming the fever Claira had this afternoon goes away tomorrow....

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 started noticing a change in Joseph that slowly but surely was getting progressively worse.

At first I thought he had just developed several new ticks, which kids often do at his age, or perhaps it was due to the change in daily routine. He's always struggled a bit 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 which 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 a bit 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 because 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, out 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, that 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.

Whew!

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.

Rude.

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

Bring it on.
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