"People Coming!"

Josiah is pumped about seeing friends and family over this long weekend. Every couple of hours he asks, "Mama, the people coming? They coming now?!" He is such a social butterfly :).

We're hopefully just going to St Jude for rehab this Wednesday. Josiah has had some symptoms here and there over the past week, but since it hasn't been consistent we're just watching him. Pray that the symptoms either go away or clearly point out what the trouble is.

If you were planning on running for team GoJGo in December you can still do that. The half marathon is full, but there's always the full marathon or the 5k. We will be having a garage sale June 9 at 7:00 to help raise money for our team. We'll also be selling the last of the GoJGo shirts. Come and get 'em!

Happy Memorializing.

GoJGo!

Runners and Walkers:

The half marathon is already 85% full! Go ahead and register here.

Josiah's team is GoJGo. While you're registering just mark that you want to be a "St Jude Hero." There's no minimum amount of money you have to raise to participate on a team. It's just a way to be a little more involved, and get some cool St Jude promo stuff when you raise money.

Josiah's doing great. We had a relaxing weekend. Thanks for your many well-wishes on Mother's Day. I will never forget that first one celebrated at LeBonheur-- one of my dried flowers still sets in the kitchen. I am glad, though, that those sobering memories can't steal my joy today.

It Not Be Owie?

Josiah's doing great. I was prepared to pump him full of painkillers but haven't even given him Tyelenol! Once sedation wore off he was fine. We aren't sure he really understands that his port isn't there anymore. A bandage is still covering the site so he hasn't actually seen or felt the difference. We talked about it on the way home yesterday and he was pretty deep in denial. But then, contrariness seems to be an after-effect of sedation for Josiah.

Today we were at St Jude for a neurology check-up and another eye clinic check-up. To check on how his body metabolizes the Keppra they did a blood draw. I think I probably turned white. I knew that having no port meant getting stuck in the arm, but I didn't expect it to be the day after the removal. Josiah was amazing! He whimpered when they had to 'search' for the vein after it rolled away, but didn't even have time to shed a tear. I am so proud. Godwilling, his next 'owie'/ poke won't be until late September for his next MRI.

Eye clinic confirmed that his left eye is a little weaker than originally thought. We're up to two hours a day with the pirate patch. The first patch he had was adhesive and his skin broke out, which is why we have the old school pirate one now. He must be scarred by the first patch, because every time I put the pirate one on he asks, "It not be owie?" We'll get checked next month to see if it's improved at all.

Praise God for 'stable' scans!!!!!!
...that SJ is a research hospital: This week a new protocol became available for a sweet friend who had no other treatment options available.
... for awesome fun pre-scans with our guests.

Pray for health in our house!
- Stephen has a compressed nerve that will soon be addressed.
- Stephen and I got the fever virus turned sinusy a day apart and are still recovering.
-Josiah has 1/2 a voice from either this virus or being intubated twice this week.

Latest MRI Results

Josiah's MRI on Monday shows that his tumor continues to be stable! This is great news, and it means that he will be getting his port out tomorrow! Please pray that this surgery goes well and that he wouldn't be too uncomfortable afterwards.

Peace Out(side)

It's sun
It's chirping birds
It's clean laundry billowing in the wind
It's that I don't know where that wind came from
It's my kids running and smiling-- both alive

This is hands down my favorite video of J and A. I will watch it over and over in years to come.

Chicken Little Theology

"Allison has the fever now. It's still very sad, but at least we don't have to go the hospital because of it (knock on wood).

We've had a nice week. Josiah did well with rehab this week! He had an endocrine check-up Tuesday. Since he's growing and we never heard anything about his bloodwork I'm assuming it was all okay.

Scans are next Monday. If the report is stable he will have his port removed next Wednesday. That means he will only get blood drawn when he has scans! We feel like we're at the point where the cons outweigh the pros of having it. 

This week we get the lovely, lovely distraction of having two friends come to visit. Josiah is thrilled about meeting Myke and Sami. Our conversations about their visit mainly consist of my asking, 

"Do you remember where Myke and Sami live?

"Uhhhhh, yeah! Where?!"

"The UK"

"Ok.?"

"No, the UK."

"Ok."

"Nevermind."

Whenever he sees an airplane in the sky he assumes his friend BelleBelle is on it since I told her that's how she comes to St Jude from her house. Between those conversations and talk of picking up the Brits from the airport he is really wanting to ride in an airplane right about now.

I probably say this a lot, but Josiah is really growing up. I think I'm noticing it more now that his language skills are picking up. He is obsessed with Chicken Little right now. When he's not watching the movie, he acts it out by exclaiming, "I I I I ruuuuun like Chicken Little!!!!!"

If you've seen the movie you know Chicken Little is constantly reminding himself that 'today is a new day.' Twice this week Josiah has randomly approached me and said, "Mama, today....is a new day!" I have to admit that the first time he said it all I could hear was Zach Braff's voice ringing in my ears. But after the ringing stopped I heard that song "his mercies are new every morning. Great is your faithfulness, Oh Lord."I'm glad it's true despite my mental and emotional condition.

Please pray against fear this week.

Please pray for our friends-- Brody and Avery are also having scans next week.

Please pray for a 'stable' (or better:) report next Tuesday.

Saturday

Josiah's fever broke Thursday morning and hasn't been back, thankfully. He's not eating much and is still pretty lethargic, but we'll take it.

We're praying for an uneventful week.

Feeling Hot Hot Hot!

Josiah has spent the last couple days on the couch, in bed, or at St. Jude. He woke up with a fever Tuesday morning and it only let up for a few hours this morning. All his blood cultures are all negative so far. A lot of SJ and MDO friends have had this fevery virus lately. He's been around 101.5 most of the day :(. Chicken Little is the movie of choice right now... over and over and over. Sometimes we can convince him to try Lion King or Cars to shake things up. Hopefully, his fever will break overnight. If not, we'll head back to clinic tomorrow for another check-up.

It's been a hard week for several SJ families. Two little friends passed this week, and another friend had a rough scan today.
Pray for healing for them as you think about them.

"I Be Pirate??"

Josiah did GREAT in his rehab appointments today. There are no visible signs that he was partially paralyzed from seizing a couple weeks ago. His speech evaluation from last week showed he is within the 'average' range now! He's been seeing Mrs. Kelly or Ms. Rebecca since he turned two. He will continue to be seen, but he's definitely making progress!!

He had a quick play-date and nap with his friends Betsy and Palmer before heading back to St Jude for a late afternoon eye appointment. We had so much fun hanging out with you guys.

His last check-up showed his left eye was being extra lazy which is why today's appointment was scheduled. He had a different doctor than his previous visits, and I am a little confused about what this doc saw versus the notes he read about Josiah's last visit. Regardless, Josiah's left eye is definitely a little weaker than his right. He gets to wear a spiffy eye patch an hour a day for the next month until his next check-up.

Josiah continues to be a bit edgy, but it's feels more manageable this week.

Please pray for a little person who may soon be a 'new St Jude friend.' We've not yet met, but we hope to soon. Ingram is around Josiah's age and having surgery at the end of this week. Pray that all his tumor is operable, and even non-cancerous.

Goodnite.

After Shock

Josiah had a clinic appointment this morning to check on his progress. His therapists agreed that physically he seems to be back on track. Left Hand returns! He has had no seizure activity since the change in Keppra dosage. He had a big time talking with 'Dr. B" and loving on all the nurses he could reach.

Our only concern right now is the side effects he's experiencing. We expected him to be more tired than usual, but with this large increase has come some major mood swings. We're hoping his body will adjust in the next few weeks. The wonderful Dr. Broniscer said we could change medication if it begins to affect his daily activities. Until then, we are trying to be extra patient and understanding in disciplining. He's still Josiah-- no personality change-- but a more intense, aggressive version of himself.

Between being away from home last week and being separated from Josiah for a couple of days I think Allison knows things are a little off. She follows him like a little lamb (that occasionally has temper tantrums) around the house. She cried when I put him to bed two nights ago because she didn't want to leave his room. During his appointments today she kept asking, "Where Si-see??"

That in itself is an answer to a prayer from 2010. When I was pregnant with her I asked God constantly that she would get to know her brother and be old enough to remember him if he passed. That's what scared me most about his first seizures in May 2010. I was afraid she would never get to play with him or see his face. God has been good to her and she doesn't even know it yet. I suppose I could say the same thing about myself.

Today has been an emotionally intense day for several reasons. I think the shock is just finally washing over me from last week. I've teared up at least five times and the day's only half over!

Some things were happy-- two friends with clear scans! It's always exciting to not recognize a friend because they have hair :).


Somethings were just sobering. I saw a baby boy and his mom who reminded me so much of our first days of chemo. She was trying to get him to nap in clinic between appointments. Sometimes all those emotions come flooding back and it feels too familiar too quickly. That will be us again in the blink of an eye. I'm not even haunted by that idea any more. What control do I have over any of it? I am so thankful for three and a half years with Josiah! I know the Lord is changing us, our way of seeing His world, and our understanding of His Love among other things.



Pray for Josiah's body to metabolize his medicine in a way that will prevent seizures but produce minimal side effects.

Pray wisdom for Stephen and me as we struggle to treat Josiah in a fair and consistent manner when he needs correction. We aren't certain what part of his 'attitude' he's responsible for right now.

Also, today is my first day sans crutches and I haven't fallen so that's good. :)