Tuesday, November 15, 2011

Ketogenic Diet Day 2

This morning started out kind of rough.  For breakfast he was served some hot dog pieces, 2 tsp of peanut butter, and the cream mixture.  He was only really interested in the peanut butter.  We tried to keep going with the cream solution, but he vomited.

The rest of the morning, he spent chilling out watching TV.  He was very lethargic and rested for most of the afternoon as well.

Leeon and I were able to meet with the nutritionist and learn more about the diet.  We were even able to help prepare a few meals.  That was interesting.  Measuring things to the gram - wow.  I never knew that a drop of whipping cream could make a difference, but it does.

After his late afternoon lunch, he was able to get the leads off his head from the EEG.  This is always the best moment for him.  Then we were allowed to roam the hospital and made it to the indoor and outdoor playgrounds.  It was thrilling to watch him running around playing WITHOUT his helmet!  We haven't had any seizure activity since we've been here!!!!  I can hardly believe those words.  We are holding our breathe believing that this is just the beginning, but for months we've been on this rollercoaster that just won't stop.  Part of me hesitates to celebrate because it will be so disappointing later if they return; but the reality is that I will be disappointed regardless, so let's celebrate the victory!

Ben just finished dinner.  It was difficult because he wanted chick-fil-A nuggets.  He cried and cried when I gave him his options.  I reminded him why we are doing this and we talked about how fun it was to play without the helmet tonight.  We talked about how good it feels when the seizures stay away and he eventually complied.

Tonight's dinner was 3 thin slices of a hot dog, 10 g and peanut butter and 10 g of butter melted together, and 30 ml's of cream.  He wasn't thrilled about any of it, but with lots of praise and humor he eventually ate it all. 

We are testing his urine each time he uses the restroom and he is officially in ketosis.  The level is a little lower than they'd like, but it's official.  We are also testing his blood sugar twice a day to make sure he doesn't get too low.  His body is working hard to learn a new way to metabolize food.

We are thanking God that:
  1. Ben only vomited once.
  2. He has been willing to try the cream again despite the fact that it made him sick.
  3. He's been seizure free and God has been answering prayers for healing.
  4. Getting the leads off means that we can turn the lights off tonight as we sleep and we don't have to be videotaped 24/7!  :)
  5. Friends and family are holding us up in prayer and helping in so many ways.
We are continuing to pray:
  1. That this is only the beginning of good things to come.
  2. That the high amount of fat in this diet will become easier on his tummy as well as more palatable.
  3. That Ben will be encouraged - I can't imagine what it feels like to him now.
  4. That Leeon and I can continue to encourage Ben and understand all of this information.
My brother shared this song with me right before we came into the hospital and it's perfect.  When this road gets steep, I have to stop and think about how His love comes down to rescue us.  He is right here with us.

4 comments:

  1. Hi guys. This is John Waller from your parents church in Maine. God has placed quite a burden for Ben on my heart. I have followed all of the emails we get with updates and prayer requests from your Mom and I joined to follow this blog as well. I have been praying for him from the beginning but in the last few weeks God's really been prompting me to prayer when I least expect it. I believe with all my heart He has great things in store for Ben and I can't wait to see what they are.
    We love your Parent's SO MUCH and were pretty close with Jim, Tara and the kids before they moved. Most of my memories of Josh were when he was about Ben's age...I think they look like they could be brothers.
    Anyway, all that to say they are family, so that makes you all family too. So continue to be encouraged knowing your extended family in Maine is praying for our son-grandson-brother Ben.

    ReplyDelete
  2. In the same church with your parents...Praying so much for a break through...I talked with the lady here in Maine about this diet that she used with her daughter and really believe that it is a key...I will target my prayer for acceptance of this diet that it will be palatable and also for you parents who have walked and are walking this journey placed before you...May His strength be there each moment of the day and God will pour into you all the patience and wisdom that you will need...God's abundant blessings to you this day and to precious little Ben...

    ReplyDelete
  3. You are doing SO well. Be encouraged! God is with you. You are strong in Him. You have everything you need to make it through this.

    ReplyDelete
  4. Praying for God to give the three of you the strength to face today. Love you guys!

    ReplyDelete