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....

11 super cool people speak:

Kelly said...

This post brought me to tears. I've followed your blog for a while. I think you only had 3 kids when I started reading! ;) (And I had 1... and now I have three!) ... Anyway, my husband was put in the bishopric in February and I felt so much strength and confidence and gratitude for the lessening of our burdens. And things haven't been perfect but blessings come! Reading about the various areas of support you have received - from the little comment at the restaurant to the Bishop's kindness - really reminds me of how much the Lord loves all of us. I'm glad for you all that Joseph is starting to improve. I HATE strep, as I missed it once and got Scarlett Fever and then because of that mono - NOTHING like what he is going through, but this makes me hate it more! I hope you continue to find little pockets of hidden strength and support. :)

Heidi D said...

I will continue to keep your family in my prayers. Hopefully the combined medications will have things settling down very soon.

Tristan said...

I'm glad you updated and are so honest about the hard parts! Our family is praying for your Joseph (we have a Joseph too). Medical things stink! My 7th, Mason, has been our major intro to the medical needs world. It's hard! And the looks that come with being different (wheelchair) on top of the doctor's appointments and surgeries (#13 is next month and he's 2) is discouraging. Add in the sometimes hurtful comments (because how dare we have a disabled child and continue having children?!) and some days my soul is crushed beneath the load. I'm so grateful for priesthood blessings, prayer, and the knowledge that we're not alone.
Hang in there Momma!

Jocelyn Christensen said...

Oh and I just love you and I Love people who say nice things to mamas at the store/restaurants. Love them. Sending you some mommy power vibes from PA. Special Mother that you are...I love that the spirit told you to massage his hands. Good job! Hugs!

Jocelyn Christensen said...

Oh and I just love you and I Love people who say nice things to mamas at the store/restaurants. Love them. Sending you some mommy power vibes from PA. Special Mother that you are...I love that the spirit told you to massage his hands. Good job! Hugs!

Susan Anderson said...

I'm so sorry both of you are having to go through this, my friend. Reading your post was a bit heartbreaking, and I'm all weepy about the whole thing.

Having said that, I always trust what the Spirit whispers to me after a blessing, so I have to believe all will be well. And boy, are you going to appreciate it when that happens!

In the meantime, know that I am praying for your boy...and for you, too.

Hugs.
=)

Emily said...

I can't even express what an example you are to me. I wish I could be more like you!! although -- if I'm being completely honest, I cry over everything, too, so we DO have that in common ;) You are strong, patient, loving, faithful -- everything a mother should be. I will be thinking of and praying for that sweet boy of yours. My oldest just turned 8, and I can't imagine watching him go through what Joseph is going through. Thank you for sharing your experiences, however hard they may be. You continually touch me and inspire me to be/do better. Hang in there!!

Heather said...

Thinking about you and sending prayers for continued improvement for Joseph. Hang in there and keep doing what you are--you are a great mom! Thanks for the update.

Heather S said...

Oh sweet mama! Keeping you and your family in my thot's and prayers!

Renee said...

Even though AJ and I do not have kids I feel your pain. Whenever we take the kids some place and out of the 4 nieces and nephews, 3 are autistic. They look perfectly healthy and normal from the outside, but when they have one of their melt downs or their quirky habits (I love all of their habits) people tend to stare. All three kids are different too. One will scream like he is being kidnapped, the other one will throw herself on the ground and do self harm, as well as screaming like a banshee and the third does a combination of self harm and throwing whatever is in his way. You just have to take everyday as one day and cross each bridge as it comes. Some of those bridges will be pretty and easy to cross, others will be covered in high flowing water. LOL
You are a wonderful Mom and you are strong in your faith and love for your children. You are stronger than you think, to do this alone is a testament to that. :) We love you and pray that everything goes quick in healing.

Stacie said...

Serene, Reading this made me tear up. I love to read your blog, and I always feel inspired by you and the things you do. I'm so sorry that Joseph is going through this hard thing right now. How blessed he is to have such an amazing mom, and how blessed you are to have him for your son. I know that you don't know me, but you are in my thoughts and prayers along with your family. Thank you for your example of faith and hope in our Savior Jesus Christ. Hang in there.

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