Monday, April 19, 2010

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!!

4 comments:

  1. Beautiful boy, beautiful momma, beautiful story. Not all the pieces are there, not all the questions answered, not all the worries ceased, not all the work done, but a beautiful
    Savior we serve Who has, is and will continue to sustain your sweet family. Praying for you all!

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  2. We have seen so many wonderful things happen so fast!

    We know that he will be all that God wants him to be!!

    Very grateful for Luke & extremely proud of you!

    Dad

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  3. Thanks for making me cry, Diane. Sheesh.
    Love ya lots! ;)

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  4. Michelle LockwoodApril 19, 2010 at 3:08 PM

    Kristi, I know it's the Lord who is amazing, but he has made all of you with a special heart and place in this world. You are touching people left and right for His glory just by living your life. Thanks for being you. Also, thank goodness for an update on day counting. Poor Samuel keeps praying thank you for allowing Luke to have 40 good days. However, in mid-sentence one of the others seems to always have the urge to correct him that it has been more than 40 days. Thank goodness God gets it all. I can now tell Samuel we are on day 50 and counting. We love you all!

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