Tuesday, November 8, 2011

The new plan

Since July, we've had lots of 'plans'.  With each new medication there was a plan.  The plans usually involved a slow introduction and slow wean to the new and old medications.  The plans were set to take place over the period of a few weeks.  With each hospitalization, we've had a plan.  We would plan on things getting better when we returned home.  We would plan on the medication working once it was at full dosage.

But plans don't always work out.

Each time we introduced a new med, we had to speed up the process because it wasn't working - we increased every 3 days instead of every 7.  We had to abruptly stop one medication because we were concerned it was causing kidney stones.  In short, nothing has gone as planned since this whole thing started.

So we shouldn't be very surprised that our plan to go into the hospital on Dec. 13th isn't working out either. 

Due to the increase in seizures, Ben will be admitted on Monday, Nov. 14th.  When the nurse called to tell us, I was taken aback.  The reality hit me for a moment that it's happening now.  We are really doing this.

But now that it's settled in a bit, I feel really good about it.  The more I read, the more optimistic I become in hopes that this may actually work!  I've read that there isn't really a 'honeymoon phase' for the diet.  We've experienced that before and it's frustrating.  I've also read that whatever seizure control we gain while on the diet for the next 2-3 years, we will keep when he is weaned off of the diet.  I'm also optimistic that we will drop one of the three meds he is currently taking almost immediately (kidney stones are a known side effect to both this particular drug and the diet so they aren't often used at the same time).  Ben will be thrilled about that!

When it's time to wake Ben up, my mind instantly thinks about what the day will hold for him.  "Will he have a tonic clonic seizure?  Will he have a lot of drops this morning?  Will he injure himself today?  Will he be ok?"  I can't wait for the day that I can think things like, "What will he learn today?  Who will he play with?  Will he have fun?"  I know those days will return and I'm praying that the diet will help them come soon.

We are motivated and optimistic about the benefits of the diet, but also a little uncertain about what the next few weeks will look like for us.  I know that the week we are in the hospital will be very difficult for Ben.  He will be struggling physically as well as psychologically.  We will need to be strong for him.

We need prayers in these specific areas:
  1. that the diet will work
  2. for strength and peace for Ben
  3. that Ben will not suffer from vomitting and diarrhea those first few days at the hospital
  4. that Ben will be willing to eat the food
  5. that Leeon and I will have the strength to smile and be his cheerleaders even when it's hard
We are thanking God:
  1. the book I ordered on the diet arrived today so I can really begin to prepare
  2. a friend offered to share her "magic bullet" mixer with us - other keto mom's say this tool is a must have
  3. for a financial blessing - an answer to a specific prayer to the exact dollar amount (God is so good!)
  4. Ben is an amazing kid - the whole time I'm writing this he is playing his drums and his guitar to some of the music listed on the side bar.  He told his nana today, "I don't need to take my pills - God already healed me."  His faith and optimism is something to be admired.
  5. for the love and support by so many friends and family

The new plan is to get on this diet and watch the miracle unfold before our eyes. 

Until then we will remember,

"'For I know the plans I have for you', says the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"  Jeremiah 29:11

1 comment:

  1. Believing with you. Asking God to send ministering angels to comfort and distract him while he is in the hospital. And praying for strength for you and Leeon! If we can do anything at all to help, please let us know!!