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 he simply 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.

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) threw 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.


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....
Related Posts Plugin for WordPress, Blogger...