Hair Therapy

We know that physical touch is like water to my soul.

Lily has set her mind (& hands) to learning a few new things this fall.

One of them is "doing ponies & pigs".

Yes, please. Learn on me.

This is what she wants to do after school.

Joy E, AM's old tassel skirt is Lily's long hair. :)

 Not sure what this face is about.

This post could have also been titled therapeutic & post-partum hair loss.  B/c my hair is falling out faster than Benny's and I'm sure this doesn't help.  But its so worth it. :)

For Kicks

He helped me get the pile of leaves to the edge of the road with his new tae kwon do moves!

Evenings and Mornings

As I typed that title, it reminded me that maybe there is a book with the same title but opposite, Mornings and Evenings.  So I googled it, and this is what I found.  It seems perfect to add, as I feel it reflects the season we've been in lately... thankfulness and joy.  That's not to say we're not exhausted most evenings but the overwhelming sense is that we're in a sweet spot, on lots of levels.  The kids aren't so little anymore but they aren't too big yet either.

But there is the annual sadness that daylight is creeping away.  

"I will praise Thee, O Lord."—Psalm 9:1.

PRAISE should always follow answered prayer; as the mist of earth's gratitude rises when the sun of heaven's love warms the ground. Hath the Lord been gracious to thee, and inclined His ear to the voice of thy supplication? Then praise Him as long as thou livest. Let the ripe fruit drop upon the fertile soil from which it drew its life. Deny not a song to Him who hath answered thy prayer and given thee the desire of thy heart. To be silent over God's mercies is to incur the guilt of ingratitude; it is to act as basely as the nine lepers, who after they had been cured of their leprosy, returned not to give thanks unto the healing Lord. To forget to praise God is to refuse to benefit ourselves; for praise, like prayer, is one great means of promoting the growth of the spiritual life. It helps to remove our burdens, to excite our hope, to increase our faith. It is a healthful and invigorating exercise which quickens the pulse of the believer, and nerves him for fresh enterprises in his Master's service.

{crab walking}

There is an extra sense of thankfulness as we get to see and experience (I think?) a little of the benefits of working hard for Peter for the years before school (and continue to).   I think (and hope & pray!) he is doing mostly well in school!  He is a hard worker, which may have not been the case if he'd been able to glide through.  And God created his personality to enjoy the extra "work" and do it with cheerfulness, mostly. 

{learning good sportsmanship??}

Thankfulness that Mike is so on board and so 'all in' in working for and with Peter.  

These pics are of the evening exercises they did for a while.

{bear walking}

We've been studying Exodus in Wellspring.  This verse is perfect.

10 But Moses said to the Lord, “Oh, my Lord, I am not eloquent, either in the past or since you have spoken to your servant, but I am slow of speech and of tongue.” 11 Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord? 12 Now therefore go, and I will be with your mouth and teach you what you shall speak.” 

{playing freeze tag}

Our evenings since these pics have gotten a little more crazy.  We've filled our schedule and have an activity most every night of the week.  Peter is doing tae kwon do, which he LOVES, and we try to do it 3 nights a week (!!!) at their recommendation.  Add that to speech and OT, and it keeps us moving!

{more biking practice} 

   

***************

Mike and Lily have a few special mornings a week.  I head out to walk with Blair after Peter is on the bus and these two have a little 'date' at home.  They both love it.  Clearly.  What's not to love?

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And two randoms:

There was a "walk to school" day early in Oct.  We aren't in the neighborhood surrounding our school so I thought we should drive over, and then walk.  But no.  No compromising.  Mike insisted they walk all the way from home.  They did it and it went well!

 This little girl is learning to function without brother here for part of the day.  She flitters about and is just the joy that she's always been.  She hums and sings as she plays and pretends (or picks berries).  Her little voice and presence fills our house with joy and smiles. 

forms

Just sayin'... If you can just check normal, it makes things a lot quicker.
It humors me that I've mentally noted this so many times that I have lots of pics of forms on my phone.  It must help me mentally to document the extensive forms.

Paperwork when you have a medical history takes a while.  And for heaven's sake, I can no longer remember every detail of my child's infancy, like when he "rolled over both ways" or "ate with a spoon" (and is that when he was willing or when I was willing) and I certainly don't know what to write for "In ONE sentence, how would you describe your child".  
We are going to a new OT place tomorrow.  I am very excited (for real).  But the paperwork most definitely does NOT excite me.

I am not complaining.  I am full aware of how good we have it.  But for the world to know, it should not be (and is not) taken for granted when you can just check normal and move on.

Ridge Goodbyes

Every Monday or Tuesday morning for the last two years, we've gone up to an elementary school near us for speech or OT.  These ladies have been phenomenal and set the bar really, really high!!  They have been soooo good to us.  They have loved and welcomed us and come to feel more like family and friends.  We have been extremely blessed by them.  Sadly, we are headed to a different school next year so we've had to say goodbye to them.  

Every week, we walk into these ladies.  I dare to say there hasn't been a single week that they haven't been extremely *cheerful* and made each early morning feel more fun.  They have doted on Lily, loved Peter's hugs & silliness, and given the kids a gumball after each session.  I love it that the secretaries give out gum.  ;)  As one of them told me, "We are just old (they are so not old) moms who think all of these kids are our babies".  My heart.  They have set the bar high.

This is Mrs G.  She has been Peter's OT.  

She has encouraged us and helped us understand things better.  Peter has loved his time with her... clearly, he is laying in her lap.  

 This is Mrs K.  She is exceptional.  (And how cute is she?!)  She is oh so special and just has a very calm way with the kids, sees the best in each of them, and makes them feel like they are the most special and smartest kids in the world.  She reminds me of Kathy.  My favorite memory of Mrs K that epitomizes who she is... Her office is off of the teacher workroom.  One morning I was trying to talk with her after speech.  Peter was exploring around the room touching every single thing.  There are so many gadgets in there that are interesting to curious little boys.  I was feeling self conscious and asking Peter to come back over and stop touching things.  She so calmly and lovingly said "He is one of our future engineers."  She walked into her office and grabbed a stuffed animal and asked Peter if he would hold it for her.

Come on, Lily!  Picture time!

 All of Peter's therapists have been so inclusive of Lily too.  I mean, she is a little doll.

Thank you, Ridge helpers!!

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.

She's Catching On...

When Lily hears that we are going to Peter's "work", she asks him to get her a lollipop.  

Go, Pete, GO!

Physical Training this week...

up this hill and back

"RUN, Pete, RUN"

I "timed" him on my watch... trying to be very serious about it.

 After each run up the hill and back, we'd balance beam it around the play sets....

 He was so into this and so serious about it... We did the "course" over and over and over and over!

 I was SO proud of him!  Look at this face!

 good and sweaty--- the goal!

 So very handsome!!  
I love this boy.

Let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him ... so that you will not grow weary and lose heart. Hebrews 12: 1a-3