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.

Prayer Request

Hello there, blog readers (family, office family, a few friends)!

Will you all start praying for Peter's spring EEG?

As you know, he's done SO well.  We think he's been seizure free for 2 1/2, nearly 3 years at the time of the EEG.  We are so so so very thankful for God's goodness and mercy to us in this.  

As we discussed with his neurologist this past spring, we'll plan to repeat his EEG this spring.  I am hoping to have it done over spring break (Apr 14-18).  

Thankfully, I don't feel too anxious about it.  Having seen God's faithfulness to us over the last 3 years, I trust He will continue to give us what we need.  Even on his med, life has been great.  But I'd also love to know that his little brain is healed and healthy.  

So would you pray that God would continue to put His healing Hand over our child's brain in the next months and that his EEG would look great.  Either way, we trust Him and thank Him for his purposes in this.  I'd love Peter to have freedom from seizures and medication.  

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.

No Idea

In my 6 years of being a nurse, I never had any idea of the anxiety that existed on the other side. 
Today we had an appt with a pediatric neurologist.  He's one we'd only ever seen as an inpatient.  After his regular neuro appt in Jan, she referred us to get a second opinion on his sleep studies.  We were thrilled b/c that meant we got to see the highly-sought-after Dr. L.  So we saw him today.

I am always super anxious about these appointments.  Not as nervous as I was earlier on this journey, but there will always be some anxiety mixed in.  Mostly, for me, it comes from believing that its all so dependent on my "report" and my observations.  Today on the way there, as it came down to the wire, it finally came to me in my anxiety, that I am given no choice but to trust in the sovereignty of God.  To trust that He covers all of the areas that I have no idea about.  And finally, that brings such rest and peace.  

The appointment went really well.  I didn't expect to come away with much new information, just some confirmation on what we already know.  I sorta felt selfish in taking this doctor's time to have some of my emotional needs met.  But I'm also a mom and I want what's best for my kid.  And I want lots of doctors' input on that, to make sure we have all our bases covered.  He was reassuring that we don't need to be alarmed about any of the concerns we had taken to discuss.  

And we got to, once again, discuss the great thing it is that his seizures ARE controlled on ONE medication.  (I sorta tremble to write that b/c as much as time has taken some of my anxiety of that not being true, I am always aware that anything is possible.)  Its almost been one full year since we've seen any seizure activity.  I am forever grateful.  We continue to pray that would be true.  And tremble at the thought of it not being true.

All he had to say on other fronts was reassuring as well, specifically about the differences in boys and girls.  I for some reason sorta thought I had a clue about boys having grown up with brothers.  Turns out, it all stumps me on a daily basis.  I'm constantly praying for more understanding and wisdom in parenting a boy.  Well, parenting in general.

A bonus today is that a sweet friend kept Lily for me.  So Peter and I had lunch together afterwards at Chick-Fil-A.

 Cheers for chicken and waffle fries!!

We are doing the Apostle's Creed at church.  On Sunday, we talked about God being the Creator, "Maker of Heaven and Earth."  We read these verses.  Peace came over my hectic body at the hearing of God's Word.  

May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light. He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins.  He is the image of the invisible God, the firstborn of all creation. For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.

Colossians 1:11-17

Thank you, Creator, for this boy!  

{pictures are my Picasa version of Instagram :)}

Medical Update

We are in need of pictures on here... next post, whenever that may be...


So this past week, we've had some follow up appointments.


Monday, it was the Sleep Study results... Peter's apnea had improved from 5X/hour to 2X/hour... but the doctor still recommended CPAP (a mask you wear at night that's hooked up to a machine that keeps your airway open... positive airway pressure)... great.  There was immediate prayer for the Lord to help me be open to the idea.  They told us a tentative plan to get him used to it, which by the way included another sleep study for the first night hooked up to CPAP (um, I don't think that is gonna fly with the boy and I DO NOT blame him.) So we were gonna play it by ear as the appointments went on...


Tuesday, it was our first neurology appt since April (thank you, Lord!).... just to follow up.  Obviously, he has been doing really well.  We can not say that we have seen any seizure activity so we are continuing with more of the same... which is great.  Please continue to pray that would be true.  Lord, heal our boy!  My main gripe about neuro appts/assessments is that they feel 90% subjective based on  our report.... argh.  Altho Peter has been doing so well in general in the last few months, in the last week he has had more behavioral problems in my opinion... more impulsive, not a lot of self control, a complainer, out of that "mature" phase I mentioned recently.  So I never know what to make of it.  I've never had another boy obviously, but there are times that he is just so different than our other little (tho she can have a case of the 2's lately, but smaller scale)... my data group is small and only includes two so I don't know exactly what to make of it.  But we'll go with it.  So the great part is that we could talk with his neurologist about his sleep study.  She does not feel that his sleep study is "bad" enough that it plays into the picture with his seizures.  So I guess that's good (and bad).  She felt like CPAP sounded a bit extreme.  So she told us she'd schedule us a consult with another neurologist who directs the sleep center at VCU.... that it may be a few months (after we'd have had to make the decision with the St Mary's doctor).  Well, the VCU doctor himself left us a message yesterday!!! My jaw stayed on the ground the whole message.  He was the first neurologist we saw at Peter's first admission last winter.  We adored him but he only sees patients in the sleep center (and makes inpatient rounds).  He's felt like this great & wonderful doctor that we just aren't "allowed" to see (and he left a voicemail for us!!  WOW!)... SO... today I called him back.  And talked to him, right away!!  What?!  This is SO rare for us!  He was as wonderful as I remember... calm, kind, smart (really smart), fatherly.  He said that he spoke with Peter's neurologist and reviewed his sleep study report and that he is "under-whelmed" with Peter's results.  We do NOT need to treat him.  His results were completely in the range of "normal" for his age.  WOW!  We are so relieved!  It is such a blessing (and answer to prayer!) that we do not have to "decide" whether to follow the original doctor's recommendations.  I feel really good about it.  More still, I talked with him about Peter's daytime breathing.  He said that is also not of concern to him.  It sounds familiar (he is the first doctor to say that after telling five doctors about it).... it could be related to his muscle tone as I suspected but its not detrimental to his health (only my nerves).  ;)  So my plan is to have him just sit in an upright chair (to encourage better posture) to watch TV and ban him from the couch (tho, I better have low expectations for this)... I am learning that my "black and white wiring" rarely really works.  Ah, sanctification... 


Peter and Lily are off for the weekend with Maw and Paw to see Copper and ride the tractor... oh, fun childhood and fun weekend with my favorite person.  OH, and painting! (pictures to come sometime... who knows when....) and a trip to the river house!!  

1 year ago

Peter was at the hospital for that first admission.  

So thankful for where we are one year later!
Its bound to be a GREAT, amazing weekend!
My heart feels such relief!

Good BYE 2011!

A few weeks ago, I spent a little time reflecting on 2011 and I am just now typing it up.  It was quite the year.  I wanted to have to these things documented in one place for the sake of remembering the craziness... That one day (even today!) we will praise our Father for where he has brought us from and that it could be an encouragement to someone else in the midst of a hard time or something similar.  For me, it was a year marked by lots of hard circumstantial things but also by anxiety, depression, and grief.  Praise the Lord for new seasons and years!  2012 already feels different.  We know that He calls us to trust Him no matter what the future holds but we pray that its different than 2011.

2011 

:: a year that was sobering and took away some of my naivety, a year of learning that anything is possible.  It aged me!!

:: the heartache of just losing Charlie and Alvin.  It leaves such grief, so I can hardly bear the grief & missing for Holly and Glenda.  And yet I wouldn't have had it any other way than to walk closely with Holly.  I read this recently and it sums it up well... I repeatedly remind myself that it is never "too soon" to be with Jesus, but it is always too soon to leave our loved ones. One does not cancel out the other. Both are simply true.  May the deep grief be wrapped in certain hope that death will never have the last word.

:: the agony of taking my boy to VCU for the new onset of non-febrile seizures and poor coordination.  Then having him worked up for what seemed like all neurological possibilities under the sun.... and one by one they were ruled out/checked off... brain tumor, anatomical anomaly, metabolic disease, known genetic conditions, each feeling like a forever wait and slow agony...waiting and then more waiting ... for some overnight and others that took WEEKS (read it slooooooowly, that's how it felt... slo mo).  And then, the one that caused me the most anxiety was the work up for a Lysosomal Storage Disease.  (what a nightmare!  Oh, my heart, for the parents of a child with one of these... its too much!)  We are so very thankful for God's mercy that all of those were negative and for the control of his seizures on Keppra.  It gave me a new perspective on the life of people whose children really have something hard that they have to deal with health-wise.  And it have me a new perspective as a nurse on the patient and family's experience.  Ugh, the suffering, I hate it! 

:: the pain of losing what we thought would be our 3rd child to miscarriage.  And the ongoing grief of that lasting all year... esp after I felt a little more free to process it once Peter's health was less of our focus.  And then the wait of not being able to move forward because of some ongoing genetic tests for all of us, which were thankfully normal.  In the recent weeks (of 2012), I have felt such a freedom from this grief.  And more of a thankfulness  for what we have and ability to trust God's sovereignty over our family.  

:: And it can't be overlooked that in 5 weeks, we went to 

• the ER 4 times (one long weekend, we went 3 times in 4 days), 
• had 4 hospitalizations, 
• 2 surgeries, 
• and one speeding ticket.   All of it was enough for a lifetime!

:: lots of therapy for Peter:  occupational, physical, and speech.  Wishing we didn't have to go, being thankful our insurance covered it, and hating the pain, suffering and trials we saw there of other children and their families.

:: High-Fiveing so many times over the blessing and provision of awesome insurance thru Mike's job.  And MANY, MANY hours spent on the phone with our insurance company working out all of the benefits.

:: In our year of heartache, its been a season that Mike really enjoys his job... what a blessing!

:: Thankful for the gift of feeling like I have a clue (if only a small one) about healthcare & medical things from my time as a nurse... and knowing other people who know more!

:: The gift of friends, family and the body of Christ at our church.  Grandparents and our small group carried us.  From Joe's visit to talk with us and assure us from God's Word that Peter would go to Heaven should he leave us too early (I lost all reservations to ask anything when my boy was sick) to Blair and Susan sitting with us that Saturday morning over a Chick-Fil-A breakfast, and Blair giving me the bobby pin that was in her hair (it's the small things!).  Dinners waiting for us (thank you, Joy!).  Susan babysitting while her husband took time out of his day of doctorly responsibilities to be with us at the hospital and at doctors appointments. I don't care to go thru any of this again or ever walk thru the doors of VCU again but I am thankful for the people who loved us so well!

:: Oh, how we love Keppra and the seizure control it provides.  Lord, may it continue to be so!

:: 2011 was the year that Lily grew up and the gap between her and Peter became so much smaller.  She became a partner with him in all things childhood... esp the world of pretend.  I love seeing them enjoy each other and the blessing of them being completely unaware of all the stresses that have been present in our grown up lives. 

:: Seeing the faithfulness of God through my marriage.  Thank you, God, for my Mike!

:: wrestling through my own struggle of how this is different than what I imagined... definitely the things mentioned above but also my own strength, perseverance, perspective is severely lacking!  Not being who I wanted/want to be.  Ugh!

:: And as last fun marker of 2011... FUN with the kids!  We did have FUN too!  Days at the pool, hearing all of the new words and phrases they are learning, cracking us up on the the things they pick up and remember, pretending together, hugs, laughs, etc, etc.

:: Verses of the year:
   "Bless the Lord, O my soul, and forget not all His benefits"  Psalm 103
   Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.”  John 11:4
   Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?”  John 11:40