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.
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.
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.
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....