July-Sept Phone Pics

I mean, that sweet meat.

 One day we picked up Mrs Yoder's donuts and headed to the little park behind the library, then inside for books.

 I took this pic while we waited after Peter's follow up neuro appt this summer.

I don't know, it documented the ill feeling I get of just having to go there... and to know that others go there and it is far worse.

He functions normally apart from a little med we give him twice a day. 

Clearly, he is unaffected, thank the Lord. 

But something about going there just drives a little dagger in my heart to feel the Fall.

 What a cute pic of Goo with 3 of her babies.

 Our old neighbors came over for a Friday dinner and the girls were Benny's fan club.

Just look at them. This pic makes my heart full, such sweetness in all 4 of them.

Benny meets his betrothed, Hannah.

Benny telling Daddy all about his day.

 Celebrating Mike's birthday with his parents :)

 One day this month, his guy just had a fascination with his tongue.  He kept it out a lot of the day- super cute to see them discover their bodies.

 Both kids love pushing Ben home from the bus stop after school.

I'm pretty sure he likes it too and missed them while they are at school.

EMU Check In

The week after school got out Peter had a planned stay at the Epilepsy Monitoring Unit.

He was really pumped about it.  I am always shocked at how God provides for us in this boy's attitude.  He has always been able to tolerate the medical stuff and does it with ease. We had been telling him a little more about why he was going in and just more details about the situation in general.   He's done a great job at processing it appropriately.

 He had a 3 day, 48 hour EEG.  We found out that he continues to have generalized epilepsy with myoclonus.  However, his EEG on Keppra looks great.  While that isn't the outcome we were hoping for, we have to be thankful for the great way Keppra works for Peter.  And I have to trust God's plan for us, for Peter in this.  Honestly, Peter has been a delightful child this summer.  He is maturing before my eyes and turning into such a nice, smart, caring, loving, thoughtful boy.  We still have our moments but there is such progress.  He has learned so much and functions so well.  I am happy to talk about this to anyone who asks but I will probably keep it brief here out of respect for the handsome boy.

In a strange way, these scenarios are always clarifying for me.  It helped give me a better mindset as we went into summer.  This is our life.  This is his childhood.  It is my job as his mom to make him know how valuable he is.  It always gives me a softer heart towards him, more compassion, and helps tame my demands.  We don't do this perfectly AT ALL.  I fail DAILY.  But its been a joyful summer to love on this boy and help him to see how awesome God made him.  And He really did. It has been a rough life behaviorally with Peter but I think he is going to turn into the nicest kid.  He is so quickly repentant.  He thinks processes through so well.  I love his imagination.  He is so thoughtful of others.  

He put the castle together over the 3 days he was there!  Its no longer fully together.  There was too much play to be had... and toys were made for playing.

First Week of Summer

We had a busier week last week than what I would have imagined for the first week of summer.  

One of the things we did was go in for a neuro visit.  We just wanted to check in before kindergarten.  And we hadn't been in since January 2012.  One and a half years!

We assume Peter has now been seizure free for 2 full years.  His last myoclonic jerk was Memorial Day weekend 2011 and his last tonic clonic was Feb 2011.  His doctor told us that after a child has been seizure free for two years we can begin entertaining the idea of weaning his meds. (!!!)  I wondered when that would be the case so it was great news.  But I already knew that I'd rather not do that, esp with him going to Kindergarten.  She said that was fine and that our comfort level is a definite factor in the decision.  So we decided that we'll schedule an EEG for next year this time and then based on that, we'll make med decisions.  You can imagine that we feel such thankfulness for this good news.  My heart is always a mix of that and caution too.  Every ounce of me knows that I need to be able to trust God with whatever happens and I can't allow my hope to be solely in him getting to come off meds.  His med has certainly been one of the BEST things that's ever happened to us.  But the idea of being well is oh so amazing (and hard to fathom, if I'm honest).  But HE is able and good.  All the time.  So you can pray with us for continued healing and praise God for the gift of being seizure free.  Lord, hear our prayer.  We'll adjust the way we give his med this year to fit the school schedule better.  We'll keep the same daily dosage but give it in two doses instead of spread out over three.  

Catching up on ZZZZ's after a naptime appointment.

We also started swim team this week.  His group doesn't compete they just practice daily for 45 mins. 

 He's the second one over.  His teacher looks so much like my cousin's wife.  So I am thinking of you a lot at swim practice, Molly!

Two Years!

I'm not sure why but I've always had a nack for dates.  I remember them easily.  I don't know about more intelligent things, but for some reason dates often stick with me.  

Well, today is two years since we took Peter to the ER for the start of his non-febrile fevers.  I'd kinda been dreading the date coming around again.  Worried that it would stress me or stir up hard memories.  But as Mike and I talked about it this evening, there was nothing but happiness.

It started on a Wednesday. 

In hind sight, I'd seen his first seizure the Friday before.  He got up from his nap.  We were sitting on the floor together.  His head jerked back and his eyes rolled back.  But it almost looked like he had just lost his balance.  And for a mom who'd already held her child through six febrile seizures, you desperately hope it isn't seizure related.  I tried desperately to put it out of my mind.  

But that Wednesday morning, Peter was sitting on the bar stool eating his breakfast and woah, a quick jerk... his head went back and his arms went out.  I remember it perfectly.  My heart.  It  felt physical pain.  My stomach dropped.  I knew.  

Mike was at breakfast with friends.  I called him right away.  In his usual calm, under-reacting way, he told me to not worry and just watch him.  A little later, another one.  I dressed him and sent him to preschool.  I told his teacher to watch but she said she saw nothing.  

That afternoon, he woke up from his nap and Kathy was here to pick him up.  As he walked over to her, he jerked.  She saw it with me.  I was so thankful.  

The pediatrician we saw that evening was amazing.  She was such a gift.  She took us seriously.  She listened and thought outside of the box.  She didn't write us off.  AND if that wasn't enough, as we told her every single detail of Peter's life and my pregnancy with him, we discovered that her mom is a nurse I'd worked with at my last job.   She planned to schedule us an appointment with a neurologist.

But the next morning, Peter's jerks continued and intensified. We were told the neurologist could only offer us an appointment months later.  So the pediatrician recommended we take Peter to the ER.  The next few days were the start of a scary and long series of events.  

Two years later.  I couldn't be more thankful for how things have gone.  Peter has been controlled on his one medication, Keppra, for nearly two full years.  Next month will be TWO YEARS since Peter's had a grand mal seizure.  That's the longest period of time IN HIS LIFE that Peter has gone without a seizure.  When I told Mike that tonight, his first word was HALLELUJAH. Yes.  Hallelujah.  Hands Up.  From the depths of our souls, Hallelujah.  Or as Peter sometimes says, HAL-LE-EULA!  Two years.  Crazy.  Wow, for as scary as the start was, I am thankful for how it is now.   Not every event of the last two years has gone as I'd hoped or dreamed.  Parts have been gut wrenching.  This isn't one of them.  Well, apart from it being an issue at all.  

Its also been two years of therapy.  Two years of nearly weekly PT, OT and speech.  We went for his PT eval the morning before we took him to the ER.  Therapy is not as jarring as it used to be.  It seems somewhat normal now.  My mentality has shifted from thinking we'll just work hard and "catch up" to we'll probably always work hard.  But that's OK.  Most of the time.  He has made Peter just as he intended.  His ways aren't our ways. 

Its been two years of being challenged to look at things differently.  To not just strive for the things the world sees as great, but to see and believe the ways He has made Peter unique, just as He intended.  That hasn't come easily.  Only with much spurring on from my husband.  Much struggle, fight, bitterness and then tears of relenting and trusting His goodness and plans.

I've been encouraged today by this song as I struggle down this road.  The struggle lies as much (or more!) in me as anywhere else.  Just to know that no matter what, He never gives up on me.  



I've had moments in the last couple weeks of such great thankfulness for this girl (Holly).  The overwhelming sense of the companionship He's given us over the last 2.5 years to walk through grief together.  Life looking different than we thought.  She does it with such grace.  We have the freedom to be real together.  And the hope and certainty that it won't always be like this.  To struggle, to trust.  Thankful to do it together.

I don't know what the next two years will look like.  If they involve Keppra and no seizures, I'd be thrilled.  Only God knows.  God, help us.  We pray we'd know Your faithfulness and mercy.  Thanks to all of you who have prayed for our {growing!} boy.