Are you talking to me?

Well, Spring is HERE!!!  The sun is shining, the trees are blooming and I've spent the last two weeks trying to breathe.....literally...crazy allergies.  It's far worse this year than I ever remember. The boys also came down with a Spring cold, so between wiping noses, sleepless nights and lots and lots of sneezing, time's been slipping away and I haven't been able to write any new entries.

I have a a list of about 10 things that I really, really need to get done today and since the boys are napping, I should be tackling that list.


But I just wanted to write a a quick entry about Caleb and his ever-expanding vocabulary. He never stops talking!!! All day long!    Parents as Teachers came last week and I was supposed to make a list of how many words he knows now.  I was only allowed to count words that he actually uses without direction....or without us saying, "Caleb say ____" and him just repeating it. I asked the PAT gal how many words he should know by now and she said around 8...maybe 10.  So, I started to write down his words and easily got to 20!!!  Here's the list:

Mama
Dada
bottle
eat
please
ouch
no
eyes
 ball
balloon
Bible
shoes
bye-bye
night-night
baby
teeth
mouth
yummy
Hi
Yay!
hot
Go, Dog, Go
keys



So proud of our little man!!  The Parents As Teachers gal was thrilled. :) We got to talking about the boys and how they came 11.5 weeks early and all the complications that were involved.  It was another opportunity to share about the miracle of life and all that God has done for Luke and Caleb.  We talk a whole lot about all of the miracles in Luke's little body. But, equally amazing is how far Caleb has come.....starting out as a 2 lb 11 oz baby....suffering from Twin-to-twin transfusion.  But, today you wouldn't know his fragile beginning.  I wanted to cry as the PAT gal said he's not just caught up, he's ahead of where he should be!!   THANK GOD!!


Here are some other things he can do


*  Point to his nose, eyes, ears, teeth, hair, belly, and toes.

* Makes these animal sounds: Bark, meow, moo, baaa(sheep), pig snort, quack.

*Follow these simple commands: Take it to the trash, Go get your blanket, Go play with your toys, Go find your book.   That's off the top my head....there are many more.


It's so exciting to watch him learn new things every single day. He's like a sponge, soaking everything in.


He was weighed and measured yesterday:  25 1/2 pounds, and almost 33 inches tall.  He's growing up so fast.


Really need to get some video uploaded.  I'll try to work on that!

Bliss

Hello All!

You may notice that the tone of this blog may be a bit different than you're used to reading here. That is because the author is different. Kristi has invited me (Andrew) to write before, especially given the title of her, er rather 'our' blog. Until now I have not taken her up on the offer. The occasion? Our anniversary!

Kristi and I are celebrating our 4th year of marriage! I almost wrote wedded bliss, but that would not exactly be accurate. We have certainly not had four years of bliss. If I had known what I was going to experience in my first four years of marriage I would have thought twice. Before you start getting angry at me and feeling sorry for Kristi, please let me explain some of the not so blissful things I'm referring to.

About two months before we married, I lost my job. Then I decided it would be a good idea to get married, start a new job, move and buy a house in a two week timespan. Our wedding day was awesome, and we were happy simply because we were together. However, cramming all that I did into those two weeks was probably not the best idea I've ever had. It didn't exactly help us to experience much bliss-even at the start of our marriage when everything was "supposed" to be nothing but bliss.

Eventually things calmed down, and bliss did come our way. Suprisingly, I can't remember too much about that year and a half. All I can say is that we grew closer and had too much time on our hands. I know this because we spent way too much time fighting. At least we also had the time to make up...hence bliss! :)

That bliss is also partially responsible for the next season of not so blissful events. I am sure that most of you know the story...

"Suprise, we're pregnant!"

"Suprise, it's twins!"

Uneven fluid levels

Baby in distress

28-week hospital admittance

28-week delivery

2lb beautiful boys in NICU

PDA that wasn't closing

Brain bleed

PDA closed!

Hydrocephalus

Shunt surgery scheduled

Shunt surgery cancelled

Seizures

NEC

Surgery 1

Surgery 2

More seizures

50 days- Caleb home

One baby home, one in NICU

Thanksgiving

Christmas

New Year

Surgery 3

Balancing NICU, work, and home

130 days- LUKE HOME!

Dr.'s appointments

Therapy

Growth

Development slows

"Startles" appear

Happy 1st birthday!

24-hour EEG

St. Louis Children's

Infantile spasms diagnosed

Drug decisions

Seizures increase

More decisions

Ketogenic diet starts

Seizures continue

Lots of poop

18 days without a seizure!

...and that about brings us up to the present. Call me crazy, but bliss does not seem like the most appropriate word to describe this season of our lives. As it is with the truest and deepest human experiences, all words become extremely inadequate descriptors.

When I think over the events of the last two years, instead of words, I see thousands of snapshots. Moments captured forever in my mind. Many with intense emotions tied to them. Some with fear, heartache, and disappointment. Others with wonder, joy, and peace. Most with a confusing mix.

Almost all of them with one common character: Kristi.

I don't think anyone ever really knows the magnitude of what they are saying when they say, "I do." Two little words with such enormous weight. We didn't use the classic sickness/health, better/worse vows four years ago, but the commitment was essentially the same: "I'm with you, no matter what."

"No matter what" can happen a lot faster than I ever realized when I made that committment. I have experienced far more in four years than I ever thought possible.

• I never thought I wouldn't get to cut my child's umbilical cord. 
• I never thought I'd hear people ask "Are they twins?" so many times in one day. (Some day I'll get up the nerve to respond, "No, they're triplets." and then scream in horror as if I'd lost one.)
• I never thought that I would be so excited to see my son poop the right way after pooping into a bag for months. 
• I never thought that the same diet that would decrease his seizures by 90% would also cause him to have "blow outs" several times daily. (Thankfully, Kristi has had to clean up exponentially more of these than I have.  I'm going to nominate her for sainthood the minute I have enough time to fill out the paperwork!)

Although I've been casting most of these experiences in a not-so-blissful light, I would be foolish not to mention all of the good that has also come out of this season that I never thought would be possible.

• I never thought I could experience so much elation and joy even in the midst of severe heartache. 
• I never thought I would feel the presence of God simply by holding my child for the first time.  
• I never thought I would laugh so many times in one day. 
• I never thought I would cry tears of joy after seeing a picture of my son standing up against a couch next to his brother. 
• I never thought I would enjoy reading the same book over and over and over and over and over again. 
• I never thought it wouldn't be a chore to change a diaper.
• I never thought I wouldn't cringe when I heard a baby cry.  
• I never thought I would see God do so many miracles in such a short time. 
• I never thought it would be so much fun to be a dad.

• Most of all, I never thought I would have such an incredible woman with whom to share all of these experiences (that I never thought I would have).  I don't know anyone more hopeful, giving, graceful, or helpful, and she does it all with a simple, elegant beauty. I am so blessed that she is the one that will be with me "no matter what."  I couldn't ask for a better friend to live life with - even the un-blissful parts.  

I was being totally honest earlier when I said I would have thought twice before I married Kristi if I had known what we were going to experience. On second thought, now that I have lived with the decision for the past four years, it was the best decision I could have made. If there truly is such a thing as wedded bliss, it must come from cherishing the fact that you have someone to share all parts of life with.  In that sense, it is entirely accurate to say that I have experienced four years of wedded bliss, and I look forward to many more.

Wanna see somethin'?

Three months ago I wrote to a handful of close friends. It was Dec. 11th, 4 days after Luke started the Ketogenic Diet.  This is what my email said...

"I promised God that I would truly rejoice in every victory and CELEBRATE without fear that tomorrow I might be mourning again. Do you ever feel that way? Thinking to yourself... "Do I get happy about this?....or will that only make the disappointment that much harder if things go downhill again?" Well, I decided that is no way to live. And being "cautiously optimistic" is perhaps not being optimistic at all. Mmmmh?? Enough of my random thoughts. The point of this is share with you, my prayer-warrrior friends, that today Luke was seizure free. Nothing. Not one. So, in all honesty, there must be some fear still in me cause I'm not brave enough to put this on my status, or on my blog...or even call my family. Somehow putting everyone through a potential roller coaster ride just doesn't seem right. But I didn't think you'd mind. :-) Cause you're strong like that. ;) And I DO want to celebrate!! Thank you for praying and for sharing this moment with me."

Sure enough, Luke seized the very next day and it has been well....yeah, a roller coaster ride in some ways. Of course, we're used to this kind of ride......you remember, right? The whole 130 days in the NICU. That was a crazy ride. 

Anyway, friends what I want to show you is this.........

::Huh?::

That's right....this.   

THIS, you guys....THIS is not just any calendar.  This is the calendar I use to record Luke's seizure activity.  

Did you see it???   Scroll back up there if you need to.   You're gonna want a good look.

:-))))))))    That's right. There's nothing on it!!!!!!!!!!!

October, November, December, January, February......those are all marked up.  But not March. 

I was wiping off the counter today and that calendar caught my eye, and I was.....well, my smile was              W--I--D--E.  

Specifically, Luke has been seizure free for 14 days now.  2 weeks.  You gotta be seizure free for 2 YEARS before you're really "seizure-free".  (reminds me of when we had to wait 5 years before my dad was declared really, truly "cancer free". What's it been now, Dad?  15 years?).    So, we have a little while to go yet.  And, we still have to get a picture of Luke's brain. We'll go back to St. Louis Children's in another month for an EEG. And the EEG will really let us know what's going on up there.   But as far as we can tell....no seizure activity.

Every good gift is from God. And these past two weeks have sure been a gift!

And if there's anything Luke has taught us, it's to just stop, and appreciate each day for what it is, without worry or fear of what tomorrow will bring.

Will we be celebrating when Luke has been seizure free for 2 years?  Oh yes!!!!!

But whether it's 2 years or 2 weeks......both are reasons to be thankful.  God is so good!

I think Luke's pretty happy about it.  Here he is on Day 14 of seizure freedom.

One of these days I'll have to show you all the things he's beginning to learn now that the seizure monster is moving out.  They're small things to most of you.  Not to us.  To us, they're huge.   When seizures are wreaking havoc, erasing learned skills and keeping you from learning any new ones, you appreciate every. little. thing.    Ah well.....Since you're already here, I might as well show you one thing he loves to do now.....

Where's Luke?

       

            Wheeere's Luuuuke?

Peek-a-boo!!!

Simplicity

"...Mark this:  Unless you accept God's Kingdom in the simplicity of a child, you'll never get in."  Luke 18:17 (The Message)






We received a very special package at our home last November.  The story begins with my Aunt Sharon and Uncle Duane, who serve as the Children's Ministries Directors for the North Texas District.  Uncle Duane had attended a children's conference in Minnesota last Fall.  During the conference, the children were invited to simply rest and soak in the presence of God and afterward encouraged to share what they thought God might be saying to them.  Later the next day, some of the children were asked to draw pictures of what God had spoken to them.  Uncle Duane said it was an amazing thing to see the children respond to the presence of God.


A few weeks later, after my uncle had returned home to Texas, he felt impressed to share Luke's needs with the leader of this conference. Luke's needs were shared with this group of children at Park Assembly in Minnesota.  Their children's pastor explained some challenges that Luke was facing and then they spent time praying specifically for Luke.  Afterwards, they were given an opportunity to write down any words or pictures that they were given during that prayer time.  












You'll see why were so touched by these letters and pictures.  You'll also understand why some are tear-stained.  We opened the package and read each one. I can say in all sincerity the presence of God filled our living room that day.  It was all so simple, and yet so anointed by the Holy Spirit.  






The letters and pictures couldn't remain in the package. 








They were pulled out and read over and over and over again.  We have framed a few of them to hang in the boys' room, as a reminder of God's Word and His promise.








We've endured some very difficult days in the last 4 months. You can't receive news that your son is diagnosed with a rare, catastrophic epilepsy disorder without having your world crumble. The diagnosis came at time when Luke already seemed so fragile...even without epilepsy.   We were already facing a Grade 3 and Grade 4 brain bleed resulting in significant fluid on Luke's brain, ramifications of intestinal surgery, visual impairment, developmental delays, a feeding tube, a weakened immune system.......only to be followed by those frightful words, "Your son has Infantile Spasms."




Enter the children of Park Assembly in Minnesota.








They heard about Luke, as I said, through my uncle. This is what they had to say....or rather, what they sensed God was saying to us about Luke.

Hi, my name is Austin and I just wanted to tell you God loves you and that I am praying for Luke. This is God's heart and this piece of God's heart is going out to Luke.

God is going to heal Luke!!! I am praying for you and I hope you get comfort from God. Healing power is being released for Luke to heal. God loves Luke and Luke's parents and he wants them to be comforted because Luke will get healed. 

Hope is always there!  The sun will shine at just the right time.

Dear Family of Luke, 

My name is Michelle Asare. When you get this prayer I want you to say it.

Dear Heavenly Father, I pray that you'll come over Luke.  Cover his body with your blood. We cancel any plan of the devil right now in Jesus mighty name. We pray that Luke has no more sickness. Fire right now go away. Come over him and heal him.  Amen.

I'm praying for you Luke.  get better soon!

(I love the picture of God lifting weights, saying "This is a sinch!"

And, of course, the sun with sunglasses on.)  :)

So, here they hang on the wall.....as daily encouragement.

I put a couple more on the fridge. I don't believe in a "clean" refrigerator  door. :)   

God will heal Luke.

The Father of God will heal your son completely.  

(Can you guess  which word is my favorite in this picture?   Completely.)

The other day as I was preparing one of Luke's ketogenic meals, I opened the fridge and glanced at the pictures hanging on the door. I thought, "mmmh...I never would have guessed when I hung these pictures up, that part of Luke's miracle would literally be in the fridge."  Certainly as far as seizures are concerned, I truly believe our miracle has been the ketogenic diet..... so thankful that God gave us the wisdom to choose this treatment and that Luke's body has responded as well as it has.

Maybe one day, I'll be able to thank the kids of Park Assembly in Minnesota in person.... To hug their necks and tell them how much it means to us that they are praying for our Luke. 

 I have a whole bunch of kids to thank......all over the world. From 2-year olds to tweens...they're all praying.  I can't tell you how many times I've been told, "My kids pray for Luke every single night!"  There are stories of kids calling parents back into the room at night "because we forgot to pray for Luke, Mom!"   My cousin's children took a recent list of prayer needs we sent out and divided it up amongst themselves so that each area is prayed for everyday.  

We've been so touched by these constant, fervent prayers. They mean the world to us.  I can't wait to share all of this with Luke and Caleb one day.  To show them how much kids matter in the Kingdom of God.  

 I know despite all the miracles we've already seen, there is more to come. 

We simply ask.....simply trust....simply wait for a complete work of healing in Luke's life.

Good News, Bad News

A quick Keto update for you. I'm thinking mostly of the other new Keto mommies following our journey (and others who may happen upon this blog in the future)

Luke is at a 3.75:1 ratio now. 

About 3 weeks ago, we noticed he was consistently have his clusters (grouping of seizures that come in waves of anywhere from 20-80 seizures in a row....each seizure only last for 2 seconds) in the early morning hours.    Seizure free all day, plagued by seizures at night. 

Soooo.....the plan was to start getting him up at 2am and giving 2 ounces of heavy whipping cream, in an attempt to get him through the night without seizures.  We were successful.  Good News: Luke went 10 days straight without any seizures (at least that we could tell).

All was well, except that Luke was increasingly drowsy during the day. Getting up for 2 ounces was turning into an hour and half affair, and it just seemed he was really missing his long 11 hour nights that he used to enjoy.   Therapy sessions weren't going well because of how tired he was.  

 I had heard from other Keto parents that they had been successful at increasing fat intake at dinner time  and also giving a high fat bedtime snack.   "Perfect", I thought.  Luke gets the extra boost AND gets to sleep all night.  I just made this change two nights ago.

Bad News:  Luke had a large cluster at 5:30 this morning.  80 seizures.

And, of course, I'm kicking myself for messing with what was actually working.  

Obviously, we're going back now to a middle-of-the-night feeding.

Thank you for your continued prayers. 

Though discouraged, I have to remind myself how much better off we are now.  When Luke was diagnosed with Infantile Spasms (exactly 4 months ago tomorrow), he was having thousands of seizures......and we never had a break. The plagued us every. single. day. 

We don't deal with that reality anymore.

 Luke is slowly making progress....though it's s-l-o-w....it's progess. And that's enough to keep our hope alive. 

Whole-Hearted Devotion

About a year and a half ago, Andrew and I were camping in the lovely mountains of Montana, brainstorming baby names....not one, but TWO.  It's a good thing we didn't have two girls or they may still remain nameless.

But boys names were easy for us.  We decided very quickly on the name Caleb.


::Whole-hearted, Faithful, Devoted::


I love the description of Caleb we get in the Bible. What an incredible man of God.  When everyone else was shaking in their boots and allowing themselves to be overcome by fear, Caleb faced it head on.  Moses sent out men to explore Canaan and all of them came back saying that while it had delicious food, the land was filled with inhabitants who were much too powerful and cities that were too large. It was Caleb that "silenced the people", saying, (my version), "Seriously, guys, we can do this!"   Caleb and Joshua went on to give a motivational speech in front of the people, reminding them of all that the Lord had already done for them.  Didn't really work.....the people were hardly convinced. Instead they talked about stoning Caleb and Joshua. But God saw what was going on (He always does) and told Moses, (again my own version).."The rest of these yahoos will never see the land I promised them"
Numbers 13:24 "But because my servant Caleb has a different spirit and follows me wholeheartedly, I will bring him into the land.."  As you read through the whole story, you can't help but see how pleased God was with Caleb and how, in the end,  He rewards him greatly for it.   Caleb had such admirable determination and FAITH in the promises that God had made.






Recently, I've been noticing how much our Caleb's name really suits him.

It all started at the beginning, you know.  This whole-hearted, fearless......shall we say...stubbornness.  The boys were growing right along there inside of me.  Other than some concerns about fluid levels, everything seemed to be going great with their health and development.  I had to go in every Wednesday for fetal monitoring. I'll never forget Wednesday, Sept. 24th.  Baby B (Luke) looked perfect on the ultrasound....did everything the doctor wanted him to do.  But Baby A (Caleb) just wouldn't stop with the hiccups. We waited and waited....and waited some more....till finally the doc decided to have me come back the next day to just check on Baby A, mainly his diaphragm and breathing.

The next day came and without a second thought I went back to fetal monitoring to do just that...check on Baby A.  Instead, it was Baby B that really needed our attention. Overnight, in less than 24 hours, Luke plummeted.  They couldn't find anything other than a heartbeat...no movement, no breathing....no response to stimulus.....nothing.  I was rushed off to Labor and Delivery and the rest, as they say, is history.  We waited a few more hours, then overnight and then on Friday, when we couldn't wait anymore, the doc came in and said, "We're taking them today. We can't wait any longer. Baby B isn't going to make it if we wait."

In 30 minutes flat, the boys were here.  Way too early. I'll always remember thinking, "It's just not time.  It's too early."  

Just as they suspected, Caleb came out breathing and screaming and kicking, but Luke was in major respiratory distress.

Caleb

Hours later, my OB came in to my room for a chat. "If we had waited any longer,  Luke wouldn't have made it".  "It was the hiccups," I told her.  At a whopping 2 lbs, 11 oz Caleb had already saved his brother's life.  My mind instantly went back to the Wednesday before when we were sitting in fetal monitoring thinking, "That stinker just won't stop.....hiccup, hiccup, hiccup"  If he had, they would have sent me on my way, with an appointment for the following Wednesday....and as the doc said, Luke would never have lasted that long.

                                 

                            Luke

We bought the book 'Bringing Up Boys'....a fantastic book, I'm sure. It's sitting on the shelf because 'The Strong-willed Child' has taken priority on my reading list.   Sometimes, I just want to pull my hair out. How could one LITTLE guy have one BIG, STRONG will.  Caleb knows exactly what he wants.  Tears are shed, tantrums are thrown and well.....you parents know how it goes.  One thing is for sure, Caleb wanted Luke here and he did his part to make it happen.  I'm grateful.  And prayerful that Andrew and I will do all we can to guide him and shape him.....and discipline him....like every good parent should do. But when those tough toddler moments come and it's a battle of the wills, quietly I'm asking God to help me shape, but never break that strong will.  It will be used for great things one day...it already has. 

  

Thank God, thank God, thank God for strong-willed hearts!  Where would this world be without "Caleb" hearts?

Our little man has a strong will ((((wrapped up)))) in ooey-gooey sweetness. He is PURE JOY!  He loves giving kisses...sometimes three or four in row.  Right after a sloppy kiss, he'll head butt you, just in case you forgot he is 150% BOY!  He smiles, he claps, he squeals when anything new is learned. It's an adorable expression of satisfaction at what he has just accomplished. He loooves to eat and loves his milk.  He adores his daddy and increasingly wants to be in his arms whenever he gets a chance.   He loves to jump and climb and give high-fives. His new word is "OUCH!" and he uses is often for any tumble or coffee table collision....or head butt.   Caleb loves his cell phone and will "talk" the day away. I wish I knew who he was talking to. :-)  He can't get enough of books. He'll pull out his favorites and scooch his way back, back, back until he's found the perfect spot on your lap and then look up at you with those big eyes as if to say, "Well, let's get reading."

He's into everything!  He is endlessly entertained with the TV remote, pulling all of the wipes out of the container, emptying his drawers,  a kitchen bowl and spoon, mommy's jewelry box, a roll of toilet paper, ripping up my newest Parenting magazine......And, well, much less entertained with the new $30 toy we just got for him.  

He loves to dance.

He wants us to read Go, Dog, Go! (or as he calls it, "Go Ga Go") at least 5 times a day.  Even though there are 20 books on his shelf,  his eyes can easily spot his favorite among all of them.

Caleb LoVeS Luke.....He gently rubs his hand through Luke's hair and leans in to give him a kiss on the cheek.  He'll gladly retrieve Luke's pacifier for him.  And if Luke is in his room sleeping, Caleb will stand at the door and whisper "Shhhh" to me.   But as soon as Luke makes a peep, Caleb is right at my feet as if to say, "He's awake now, Mom. Go get him!"  When Luke babbles, "ba ba ba", Caleb echoes it right back to him. He cheers him on during therapy sessions and cheers him on as he eats his Keto meals.  Luke doesn't know it yet, but his big brother is his BIGGEST fan.

I love you, Caleb.   I am proud so proud of you!  I thank God for giving you to us. I love your tender heart, your enthusiasm, your friendly nature, your sweet smile.  I can't wait to watch you grow.....to see all that God will make you to be.  I have a feeling whatever it is, you'll be doing it with your  whole heart.

Y-a-w-n

Recently, Luke's seizures have been showing up at crazy hours....like 3 am, 4 am, 6 am. I'm not too sure if this is recent change or if he's been doing that all along and I'm just now catching it.  We bought a video monitor a couple of weeks ago, and it has definitely been helpful in keeping a constant eye on Luke.   During the day, he rarely has any seizure activity that we can see.   THANK GOD!  But these pesky night time seizures seem to be a constant reminder the seizure monster still lives here.  Ugh.



So, after talking with his dietician, the plan now is to resume night time feedings.  y-a-w-n.  We've been so blessed with babies who sleep so well at night.  This will be hard to get used to again....setting the alarm for 2 am...stumbling to the kitchen, getting the bottle ready.....you know the routine.  Hopefully, this helps.  I would do anything to get rid of the seizures, so in that sense, it's really no big deal. (but I will miss the sleep!)  The dietician thinks that Luke's 10-12 hour nights are just too long for him to go without food...or should I say fat.  So, at 2 am, he'll get two extra ounces of heavy whipping cream.   The dietician also increased his daily caloric intake...he's at 1,400 calories per day now.  He's still losing weight :(  so we're hoping the extra calories will help.

Luke's been on the ketogenic diet for 2 full months now. Here are some improvements we've seen:

* Luke's vision has improved A LOT!  Praise God!  He still struggles some in this area and when you're with him, you can tell he still doesn't see everything. But he tracks so much better, he focuses and he makes great eye contact.

*Babbling makes a come-back!  Luke lost his babbling skills when the seizures started and now he's back at it.  I just put him down for the night. He wasn't getting settled and I had to go back in twice to tuck him in again.  Both times I got to his crib, he started babbling "Ma-ma-ma-ma"  :)   Realistically he probably isn't saying "ma-ma" because he knows that's who I am (although it's nice to think that maybe, just maybe he does?), but either way, it's just GREAT to hear his little voice again.

*Luke is able to bear more weight on his legs and his upper body is beginning to get stronger too.   He still has soooo far to go in this area, but we're seeing some improvement.

*Smiling.....lots of smiling...and laughing.

*Last, but certainly not least. the clusters of seizures are beginning to vanish.