Friday, February 26, 2010

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. 



Wednesday, February 17, 2010

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.







Wednesday, February 10, 2010

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.