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) 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 I seemed I didn't even 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.

*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.

June 23, 2014

I'm Aliiiiiiiiiiive!


Hello? Is anyone there?

Helloooooooooo?

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.

Love,

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.

Huh.

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.


Ahhhh!

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.

Pinterest.
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* 

Seriously.

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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