Good Medicine

Happy to have some days to be OUTSIDE this week after lots of rain, snow, and freezing temps. 

Peanichs on the sled :)

He thinks she's pretty.  

He often tells her "You're pretty!" or "You're cute!"  

She usually just grumbles... ugh, Lily.

 Tired Boy 

 He's been consuming Pumpkin Pancakes this week with the sore throat.

Lily is collecting bear-wies.

 Peter enjoyed studying the wheels on Lily's pink ice cream truck....

and driving it.

Clovey came out to join us and enjoy the fresh air.

about a three and a half year old girl

Lily Bug is a doll.  She adds such JOY to our family.  

I love seeing her grow and blossom and become a little girl.

* The girl loves some dance.  She laughs the entire time I put her leotard on each week.

At bedtime, after Peter is asleep (he's our early morning bird and she's our night owl) and she has Daddy and Mommy as a captive audience, she asks us if we want to see a dance.  Then she dances, turns, jumps, twirls across the room.  She often thinks she needs a headband to dance, even if she's just holding it.  She usually want to wear the heels that Aunt Emmy gave her but I tell her those aren't the best for dancing.  ;)

She's second from the left in pink.

Isn't brother sweet watching?

 Remember how Peter had a fever last week.  He's continued with a low one off and on this week.  I took him back in yesterday on Day 10 and they think he has mono.  We've tried to ease back into our routine this week.  He's come along for most things but has NO ENERGY.  So mono totally makes sense.  And he has lots of swollen nodes in his neck.  He's been extra snuggly, which I've tried to take full advantage of!  I enjoyed having him sit in my lap while we waited for Sissy at dance class.

*  She is a chatty little thing.  She has lots to say and talk about.  She spent yesterday afternoon with Goo and Goo said she talked the whole time.  Because she talks so much at home, I forget that she can be shy around others.  I've heard that she is quiet at school but always smiley and happy.  I love it that Peter's outgoing personality encourages her to be more talkative around others.

*  She loves some pretend just like her brother.  Peter bought these two cookies for Lily and Goo last eve.  Lily thought they needed to talk to each other!  :)

*  I don't know what it is about Lily's hands that I love.  (Mike thinks this is wierd of me.)  She uses them so well and so kindly.  She loves making "cards" for people and LOVES paper.  Maybe TMI, but she loves washing Peter's back and putting lotion on my hands and arms.  I pray she uses them to bless others as she grows.  Maybe one day she'll be the next Katie who cares for orphans. 

*  She LOVES her brother (and gets equally annoyed with him).  It really stresses her out when he doesn't keep up with us or is lagging behind.  She screams a stressed out/worried scream that "Pete's not coming!"

*  You know until recently, she wanted to be a "bunny what changed colors" when she grows up.  (She often uses "what" instead of "that", and I don't correct it.  :)  Recently she told me that now she wants to be a Mommy when she grows up.  She wants to have 4 kids, or 5 kids.  

I hope she gets her wish.

*  She still says her R's like W's.  And I think it is the cutest thing ever.

One of Peter's SLP's has told me I don't need to worry for a few years.

(Hope that's right, Cha!)

*  I think she's a rule follower.  

(Tho from being one myself, I know that outside rule following doesn't equal internal rule following).  She's walking down the hall at the school with her "Bubble and Duck Tail".  I'm glad we'll have early training in how to walk at school.  The cuteness kills me.

 *  She LOVES to sing!  She loved all of the new songs she got to learn around Christmas and is still singing them.  She loves to sing all the songs she learns at preschool.  She also loves to just make up her own.  At bedtime, I usually sing her three songs (don't imagine that!).  But lately, she's been singing #2 and/or #3.  It fills my tank instead of giving, giving.  I love it.  Her make up songs often involve God or Jesus.  It flatters or blesses me to think that's what she wants to sing about and I'm thankful for all the places and people she hears that from.  Her other favorites are Christmas is Coming, I "Heared" the Bells on Christmas Day, Who Made You? (I love hearing her say "I know God made me."  Thankful that she knows that.) 

  *  She wakes up clapping her hands, 

but its more of a quiet, cupped hands clap, from happiness.  

Another part of the hand thing.  I mean, seriously, that makes a morning a little better.  

And I'm not a morning person.  

We love you so very much & cherish you, Lily Bug.

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.

Our Week in Phone Pics

Last weekend... 

New Purple Skinny Pants for the Girl

Sunny Breakfast Date with my Man on MLK Day. 

 

The boy had a fever for 5 days this week.  
It didn't seem like a big deal.  No other real symptoms.  
But then on the 5th day, plus the FREEZING weather, the Jan darkness, cancelling all activities, being inside all week, we were both just done.

{I can't even fathom what its like to be 50 degrees colder for you CO folks.}

 This was Day 5.  

I thought he was finally getting better.  

But then I found Goldilocks asleep in baby bear's bed.

Nope, another day of a fever.

 Lily celebrated her half birthday this week in her preschool class.  

I forgot to get pics of the actual party.  This was after drop off.

But aren't they cute?!  

4 boys and 4 girls.

 Thankfully, since Peter didn't get to go to school (or anywhere) this week, Goo took him on Friday morning for Goo's school (and so I could do Clothes Closet).  
Then Lily and I had a lunch date afterwards.  

She's such a delight, joy flows out of her.

Whew.  Glad this week is over.  Looking forward to warmer weather and brighter days.

Five Thirty on a Thursday

This isn't typical for us.  Its usually the witching hour, like I think it is for lots of moms.  When Mike gets home from work b/t 6 & 7 and asks how the day was, I usually say "It was good but now its the end of the day and I'm d.o.n.e."  Some switch takes place and I just hit done and have nothing left.  

I think because I had an extra cup of coffee (didn't do my chemo course b/c there were children to attend to and dinner to make) AND because snow was coming down, there was a little more excitement in the air and it made this eve a little sweeter and less grumpy.

Peter found The Lion, The Witch, and The Wardrobe on our bed that he'd been wanting to read.

My little Picasso is at work

 Peter finishes his reading and comes in to make some guys.... 

knights, heroes, and fire fighters.

 Tomato Soup is on the Stove

Favorite Tomato Soup

¼ cup olive oil

1 onion, diced or sliced

baby carrots, chopped

1 clove garlic, minced (or more!) (I use the garlic in a jar.)

¼ cup all-purpose flour

3lb can of diced tomatoes

¼ cup tomato paste

3 cups chicken broth (or something similar)

¼ cup finely chopped fresh basil (or dried, to taste)

1 tsp sugar

1 c milk

salt & ground pepper

cheese or garlic croutons

Grated Parmesan cheese

In a soup pot over medium heat, heat the oil, then add the onion & cook about 3 mins.  Add the carrot & celery & cook until the veggies begin to soften, about 4 mins.  Add the garlic & cook one minute longer.

Sprinkle flour over veggies, reduce heat to low & cook about 1-2 mins longer until flour is incorporated. 

Add the tomatoes, broth, tomato paste, basil, and sugar.  Raise heat to medium, partially cover & cook until veggies are tender & flavors are blended, about 20 mins.

(I don't do this part-->) Transfer the soup to a blender & process to puree, leaving a little texture.  Return to pan over medium heat.  

Add the milk & stir.  Season to taste w/ salt & pepper.   

After serving, garnish with croutons & Parmesan cheese.  

Enjoy!!

Quick Picture Dump

Lily started dance class!!  

To say she is excited would be an understatement.

Could you just die at the cuteness?  

(I know I say the same things over and over.  

Not real creative over here.  

Just love {and sometimes they drive me crazy} these little {growing!} ones.)

 We did a 10 day trial membership at an indoor pool.  The kids loved it.

 I could tell they got more and more comfortable in the water as the days went on.

 Mike always tried to convince me to get in.  I would {reluctantly, I know... no fun} and then just half heartedly enjoy it.  But finally on a week day I took the kids on my own.  There was NO ONE else there.  The kids swam.  I sat out (and was nice and WARM, not freezing in the water), loved watching them play, and we all had a good time.  

I think we may join.  But we haven't yet.

 Peter's final DTAP was delayed b/c of his (controlled) seizures.  The ped wanted us to check with neuro.  (We LOVE his ped.)  The neuro said it was fine.  So he just got it last week.  Final one... woohoo.  For a while at least.  He was nice and sore and a little lethargic.  Lily was sure to tell him that her shot didn't hurt (they both got flu shots too).  But I assured her that Peter got 2 and it wasn't just that she was tougher.  I didn't want Peter to think his little sister was tougher either.  ;)  She loves her bubby.  Her teacher just told me that she is quiet and smiley at school.  And the only time she makes a fuss is when she sees 'Pete' in the hallway... "Pete!!!!!!!!!!!"

 Enjoy seeing the gorgeous sunrises as we walk and on the way home.

 The kids stayed with Maw and Paw over the weekend.  
I sent to see Holly.  
Lily was sad to leave Maw.

 Mike is trying to read them all of the Jesus Story Book Bible in 2013.  I need to hear it too...

I've been trying to be there more and not running around the house straightening up/putting away laundry for the eve.  I've not had perfect attendance but have made it a little more.

 With our push for fine motor lately, Lily is digging it at all times and often crafting.  

Here she is making "cards" for everyone with little cut up paper colored with a blue pen.

 Self Portrait while Peter was at OT/ST.  We have started working on Lillian too.

 Dentist this morning.  

They said Lily has already changed the shape of her palate from thumb sucking and will need braces.  REALLY?!  They said it so matter of factly.  Thousands of dollars is literally the price we may pay for 3 years of soothing.  I had them both tell her she can't suck her thumb anymore (I'm not that concerned but I figured while we had the opportunity for someone else to say it).  At naptime today, she took it very seriously and didn't.  She kept telling me it was 'too hard to sleep' but then fell asleep without it.  I'm certainly not calling it but it was interesting to see that part of her personality, and wanting to be a big girl and do what they said.

 And this little man has a loose tooth!!!!

My intrigue with his fascination for vehicles continues... 

 Cutting off Daddy's cir-ca-lation before work.

 I just like this pic of Peter.  
It shows his highlighted blonde hair, brown eyes, and perfect skin so well.

We crafted a monster for our 'M' this week. 

 Daddy put on eye on his forehead and then moved his glasses to see with it.

The kids now think you are supposed to lick and stick the googly eyes everywhere.

 Thumbs up for his Monster.

This week I've found a new blog.   

http://www.rameelinlarson.com/

Her daughter has Batten Disease.  One of the things they tested for or were curious about when Peter was at the height of his seizure and low tone work up.  Though I don't want to pretend to really understand, I have a ever so slight idea of imagining that road.  She writes beautifully about their journey.  I've enjoyed reading, shuttered at the thought of it, and related to a lot of what she's said in processing grief.  She's helped me to trust God more with the path that he has laid out for both of us.  And she's been an advocate for rare and undiagnosed diseases, which I admire.

I'm off for coffee and to begin a 2 week class online.  

So probably won't be back for a little while.  :)