Levity

Jonah had an eye surgery to help shut his right eye a little more to help him be able to fully close his eye.  The procedure went well and the doctor is happy with it, but it is a bit more pronounced that we'd expected.  Jonah is pretty sensitive about how his eye looks right now saying that he looks "scary" and "like Frankenstein".  Because of that, this is one of those times where saying less is saying more.  Please bear that in mind, and help your kids do the same, in as much as possible.  We know that kids always have questions, we're just trying to "get in front of them" as to not make Jonah feel more sensitive about it.  Thanks for your help!

Jonah and the cows.  There is the ever faithful Cowie and Lulla the Giant Cow.  Middle cow, formerly known as Fat Cowie, will now be known at Katie the Cow after our favorite APN, Katie.

Jonah and his 2 Katies.  A visit to the clinic wouldn't be complete without a picture with Katie.

Fun times with this new Facebook photo thing.  Things are always better together.

Seriously, I can't make this stuff up.  Last night Julia started complaining about her eye hurting.  I thought it was in sympathetic solidarity with Jonah since his eye was bothering him postoperatively.  This morning, it turns out it was more than that.  Julia woke up with a red, swollen, droopy eye.  The pediatrician thinks it might be a stye, but it's not completely formed yet.  I think it might her unexplained sweet connection with Jonah causing her to manifest his symptoms as it's the same eye.  Who knows, but we're doing eye ointment for both kids now.

More fun with Facebook filters.  Today was a day filled with waiting as we had 6 doctors appointments.  

Jonah travels with a posse that's got his back.  Missing from the picture are Lulla the Giant Cow, Baby Kyle the Walrus and this random Troll doll one of the nurses gave him.

Sometimes you need a little levity in life, and today, the day of results and follow up with 6 doctors appointments was one of those days.  So to kick things off, here's a joke for you.....

What do sharks like to eat with their peanut butter?

Jelly Fish!!!

Now for the updates.  I'm going to start with the good and easy first.  The good and easy is that Jonah's rehab doctor is amazed with how well Jonah's physical recovery is going.  He's getting so much stronger, with improved range and balance that we've made a change to his leg supports (AFOs) to allow them to articulate at the ankle.  This is a great step for Jonah's mobility.  The other good and easy is that the endoscopy showed no signs of persistent eosinophilic esophagitis.  That means that outside of avoiding anaphylactic food allergies, Jonah's diet is wide open.   

Now on to moderate and easy update.  The fluid from Jonah's December ear infection has finally cleared so we were able to get an accurate hearing test.  The test revealed that there continues to be mild worsening to Jonah's hearing.  Although this isn't great news, it is easily corrected with an adjustment to his hearing aides.

And now for the unclear and hard.  Jonah's MRI revealed a new spot on his lower spine.  The spot is weird and no one is sure what it is.  It does not present like a typical recurrence and so the radiologist is not overly concerned.  In the world of oncology though, new spots make everyone uneasy and so our neuro-oncologist and our neurosurgeon are more on edge.  They honestly have no idea what the spot is.  There is a lot we have to weigh, but for now, the biggest is how long we want to wait before our next MRI.  The team feels confident that if this is recurrence it will be clear by 12 weeks.  That feels like a long time to wait and so we're looking at a shorter window of 6-8 weeks.  There is a chance that in the shorter window the spot either disappear or grow - giving us the information we are looking for, but there is a reasonable chance that it will look the same and we will need to rescan in another 6 weeks.  

This is scary.  This is hard.  This feels like the beginning of the chapter we never wanted to open.  If this is recurrence, there is no cure.  There are various treatment options that can extend life with decent quality, but there is no cure.  Even if the spot turns out to be nothing, standing on this precipice is terrifying, and we are likely to be standing here for the next 6-12 weeks at minimum.  Yesterday I said, "Never does your faith grow so much as when you have regular intervals of waiting and trusting with a piece of your heart".  Yesterday I meant waiting for 24 hours.  Today I mean waiting for 6-12 weeks or longer.  

I suspect that in the coming weeks there are going to be moments where we are overwhelmed by the scary, by the hard, by the sad.  If we could ask you to pray with us and for us in the coming weeks that would mean a world of support.  Specifically, if you would pray:

* That this weird spot just go away.  Pray that Jonah's body is able to reabsorb it into oblivion.

*For wisdom as we make decisions on how long to wait to scan, to balance not going crazy waiting for more information with waiting long enough to get more information.

* That Jonah's recovery continue to be so strong and successful.  Everyday he's a little stronger, with better balance and flexibility.  

*For the today - for the time that our family is guaranteed.  That we are wise with our time together - maximizing it not because we fear the end but because we love the together.

Since Jonah finished treatment in May 2016, I've often referred to each day as a gift.  Knowing that today was never a guarantee and that God has filled it with goodness, if I stop to look.  I'm so grateful that I've slowed down to have eyes to see that goodness.  No matter how this goes - we will always have the last 11 months of memory making, laughter and love - and tonight it seems all the sweeter.