Day 50

Wanted to get back here to fill in some details.

We're still soaking in the warm, giddy feelings that those words "It's normal" evoked in us two Fridays ago. See previous post.  God is so good and, if I didn't say it before....I'll say it now.  We confident this is nothing short of a miracle.  We see God's hand at every turn.  Giving us wisdom to choose the Ketogenic Diet.  Even leading us TO the diet option (via Google search...hey, God can direct however He needs to!), allowing Luke to respond as well as he did, Luke's brain experiencing a "phenomenal" recovery...at least as far as seizures are concerned.  God be praised!!!

So today is Day 50 of seizure freedom.

Luke's doctors decided to wean Luke off the diet since he experienced such great results. It's a slow wean...decreasing the fat intake ever so slightly every 10 days.  The one side effect that Luke suffered from on the diet was poor growth. He grew taller, but lost 3 lbs, which is a lot in baby world.  So, I think that's one of the reasons that they are wanting to wean him this quickly. (Side note: If you're reading this and considering putting your child on the Ketogenic Diet, please know that Luke's weight loss is NOT typical. Luke had a large section of his intestines removed when he was a month old. His weight loss is probably more related to malabsorption issues than anything else. So, don't be alarmed or let that hold you back from trying this treatment.)


What's going on now then...other than weaning?   Well, basically the same. Therapy, therapy, therapy.  As the doctors said, the epilepsy piece of Luke's puzzle is solved for the moment. But there are many other pieces to consider. Most significantly, is the brain bleed and respiratory distress he suffered at birth.  The boys were born on Sept. 26th and on Sept. 29th, we found out his brain had bled.....a lot.  (There are specific reasons why the bleed occurred....long story for another time) They need to look at the MRI again, but from what they can tell the bleed was near the vision center of his brain and also near the part of the brain that controls motor development.  Makes perfect sense since Luke is visually impaired and very weak in his gross motor skills.

What is the best thing to do?  Of course, keep praying for miracles.  And then, therapy!!!
Children with brain bleeds can experience very different results. Some are disabled for life.....constrained to a wheel chair, cognitively impaired, and unable to do much at all independently. Others go on to walk and run and attend university and lead fairly normal lives.  The hard part:  Only TIME will tell what side of spectrum Luke will be on.  There is SO much even the experts don't know about the brain. But they do know that therapy is crucial....that the brain can "re-wire" itself...that the parts that are healthy can take over for the parts that are damaged.  So, that's we're doing. Working very, very hard to get him all the possible therapy, equipment and resources he can possibly get.

The kind of seizures Luke was having were of the "horrible, awful, catastrophic" variety. They literally halted all development from Sept. '09 to Feb. '10.   That's why we are SO thankful they stopped!!!  In this way we are encouraged....that at least the "electrical storm" has subsided and maybe Luke's brain can start making healthy connections again.

I feel like I should say...please ask any questions that you have. Whether you're a long time friend or just "window shopping" on the web and happened upon this site.  We will answer any questions you have and are not offended by any of it.  So, please ask away and don't ever worry about saying the wrong thing. :-)   Had someone ask me at church a few weeks ago, "So, is Luke gonna be... like.. strapped to a wheel chair for life?"  Uhm...  ok, admittedly, not the most tactful comment I've ever heard!!  But, I was totally fine with it and it helped me realize that in their own way they were trying to understand my son and I appreciate that....a lot.  (By the way, I just smiled and said, "Well....maybe.  Then again...maybe not. We just have to wait and see.")   Luke's taught us, oh my goodness....so many things.  Among them....being patient, learning to wait, and being ok with unanswered questions. :) We've asked them all...the questions, I mean. Many times.  Does he have cerebral palsy?  Do you think he will walk? Can you tell how much he can see?  etc, etc. ETC.  But, alas, we are always told, "We just have to wait and see."   Luke is such a joy. We've learned to do therapy, PRAY, work hard, research, research, research.....do more therapy, PRAY again....but in my midst of all that, never to stop simply ENJOYING Luke...for who he is, for who God made him to be.   He is, like all of us, God's creation and we celebrate that!!

We sure appreciate all of your prayers!!

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. 

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.

So long seizures

Ok, I'll start with what you really want to hear.....the answer to the question: How are Luke's seizures? Short answer: A LOT better!! Before I go any further, I have to tell you we are, ELATED and very, very grateful. Luke's neurologist told us today (and by the way, Dr. T is the smartest of the smart....world-renowned in pediatric neurology), "well, we don't really know how this diet even works...why or how it controls seizures." :) Smart people get uncomfortable when they can't explain things. It's cute.

Of the past 15 days, 12 have been seizure-free!!! "Normal" for Luke was about 2 clusters a day. (Infantile Spasms come in "clusters"...one seizure after another, 3-10 seconds apart). Each cluster consisted of 30-40 seizures. You do the math and that's 60 seizures a day, up to 2,000 seizures a month. YIKES. In the last 15 days, he's had 3...that's right THREE clusters total. That means we've seen about a 90% reduction in the last two weeks.

Luke has officially been on the Ketogenic Diet for a month now. We've made some adjustments, changed formulas, tweaked something here and another something there...... This will continue. After all, when it comes to seizures, 90% is fantastic, but 100% seizure control is the ultimate goal. Even one seizure every now and then can wreak havoc on a 1 yr. old's brain so we're working to get them gone....ALL gone. We are increasing both his daily caloric intake and his total fat intake.

That's it in a nutshell. For more information and continued prayer concerns, keep reading. :)

**The doctors didn't order an EEG yesterday. Since Luke is still having some seizures, the thought is that probably things won't look much differently in his brain right now. Once we have a long period of time without any seizures, we can call St. Louis Children's and arrange for an EEG to be done. THAT TEST WILL TELL THE REAL RESULTS. The reality of Infantile Spasms and really seizures in general is that sometimes you see them and well, sometimes you don't. And by not seeing them, I mean simply they are happening in the brain without any demonstrative display on the outside. So, while we aren't seeing the big clusters of startle jerks, it doesn't mean Luke isn't still seizing. (I know, bummer, right?) So, we wait......and hopefully we can get an EEG within the next 2 or 3 months and know for sure what is going on in his brain.

**The doctor and dietician were very celebratory with us yesterday. Any improvement is a reason to celebrate. That said, they wanted to make sure we keep our feet on the ground. There are cases when the Ketogenic Diet works wonders and then......it just stops working. Like I said before, there's a lot of tweaking that can be done and we can attempt to get it working again, but it's not always possible. Some children will end up having to try anti-convulsant drugs again.

**So, if we get these seizures gone once and for all, Luke will start developing normally right? Eh, I wish. Dr. Neuro explained to us yesterday that we really don't know what is causing Luke's developmental delay. Is is the seizures or is it the brain injury? We can't forget that at birth Luke suffered a massive brain bleed, on both sides of his brain. Nothing short of a supernatural miracle can heal the brain from that kind of injury. Again, we have to wait and see (there's so much waiting in life, isn't there?). Our deepest desire is that we'll begin to see Luke start developing more and more.

**Luke has lost a significant amount of weight. This is somewhat normal for Keto kids, however he has lost even more than normal. So, we've increased his daily caloric intake to 1,050 cal per day. His sweet baby rolls are gone. When it comes to seizures, you find yourself living to the tune of "What is the lesser of two evils here?" And, well, seizures are almost always, by far, the greater evil.

**Luke underwent a series of genetic testing back in October, in an effort to find a cause for the epilepsy. The results have all come back normal (which we expected since his identical twin shows no signs of this disease). So, we're back to what we suspected all along....the epilepsy is a result of the brain bleed at birth and other abnormalities in his brain as a result of that injury.

**Luke will soon start more (LOTS more) therapy. It's time now to bump up our efforts and get him moving, exercising, and working to gain strength, endurance and mobility.

*******WAYS TO PRAY*********

Here are seven specific ways you can pray:

1) Pray that we see continued success on the Ketogenic Diet and that 100% seizure freedom comes quickly!!

2)Pray for healing and complete restoration in Luke's injured brain.

3)Pray Luke gains weight.

4) Soon we will start adding solid foods to Luke's menu (right now he's just on the formula version on the diet). Pray Luke eats well and learns to chew/swallow. (he likes to spit it all out and gag instead)

5) A recent MRI showed Luke still has A LOT of fluid on his brain (I'll blog more about his later). Keep praying this fluid drains. The doctor doesn't feel a shunt is needed at this time, but it's still definitely a possibility if the fluid level increases.

6) Pray for Luke's vision. We still don't think Luke can see a whole lot of anything. His eyes are perfectly healthy....the connection between his eyes and his brain is not. This can sometimes improve with age. Pray it improves!

7) Pray for Luke as he starts more therapy. It's a lot of work for a little guy and he tires easily. Pray we get in touch with GREAT therapists (I'll be calling next week to set all of this up!) and that Luke begins to soar developmentally!!