And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Friday, April 29, 2011


What absolutely precious friends we have...

You have each touched my heart and encouraged me so much with your comments and e-mails after my post yesterday!  WOW!!!  Thank you!

Today has continued to be a rough day as far as seizures are concerned.  I've had five so far and was pretty clueless after each one.  I had one at 2:45p and it wasn't until 3p that I asked B what had happened.  I was in a different seat in the car than the one I was in when it started and we were on the opposite side of town.  I don't really know what I did for those fifteen minutes in between the seizure & realizing I had a seizure.  Those are the ones that truly scare me and they just plain wear me out...

We also took P to the doctor today to see why she is crying so much.  The doc said colic.  We threw out the things we had read about colic that would rule colic out as a diagnosis.  She said those didn't matter and gave us some new formula to try.  Then, she gave us a printout explaining colic.  All of the things it states as reason to rule out colic were the questions that we had asked.  So, we think it's probably more gas related (please don't remind her of this post at her wedding one day) and we should just change the med we are giving her to treat it.

My phone gives a daily scripture verse.  It downloaded this morning on the way to my doc appt.:

And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will himself restore, confirm, strengthen, & establish you.
1 Peter 5:10

The good news:

We met with my neurologist today and she said we can start treatment next week (Wednesday)!!  I will be hospitalized for three days.  So, we are trying to figure out the best way to care for P during that time as B & Mom will also need to take turns at my side, as well.  There are apparently some pretty great risks to the treatment (i.e., stroke, etc.) which is why I will need to be hospitalized for the first round!  It will be three days worth of treatment.  Then, home health will come to our house once a week for the next twelve weeks to administer the remaining doses of treatment.

There are so many details.  We need to find a way to make sure that P is taken care of for the three days I am hospitalized.  Then, each weekly home treatment is 4-6 hours.  I won't be able to hold her or care for her during those treatments and so we'll need to make sure that we have consistent care for P on those days.  Our church is already so amazing and has a weekly schedule of sweet ladies that come over and help me with P.  However, those days will require even more "hands on" care with P.

This girl loves her Daddy!!
Also, when we got back home tonight, the doc had called and left a message that she had already spoken with the dietitian and pharmacy!!  Impressive!!!  The dietitian will be ready to help with all the necessary items I need for the Ketogenic Therapy (the way the seizures are currently being treated) and the pharmacy is also prepared for the challenges we face with inactive ingredients in my meds!!

The not so good news:

There are severe risks of a stroke and kidney issues.  My kidneys have always been a tad weak and so we'll need to keep a close eye on them.  They will be monitoring my kidneys throughout treatment.  However, this is still a big risk.

The message the doc left also stated that the new version of the IVIg that the hospital has in stock has glutamate as one of its main ingredients.  What does that mean?  Glutamic Acid is the problem!!!  Glutamate is a form of glutamic acid.  It would be like them giving me high doses of MSG.  So, she has put in a call to the purchasing agent for the hospital to see if they can purchase the type that does not contain glutamate.  If they are unable to get it quickly, this will delay treatment to the following week.  We are just ready to get this started...

So, our prayer is God's will be done and that HE gets to be the hero of this story!  Our hope is that HIS will is healing sooner rather than later and if it's through IVIg that we will be able to start it quickly.  As well, that we are able to find consistent, reliable care for P throughout this process.

We so appreciate all of your prayers at the feet of our amazing FATHER!!  Thank you!!!


  1. Hi M,

    That is great news, keeping my fingers crossed that all goes well and you are able to start treatment soon. If you really need consistent care for those three days, I'd be glad to make arrangements to come out and be your nanny for those days. Let me know.


  2. Meredith,
    I don't know if you have ever tried going dairy free while doing the Keto or MAD diet?
    This is what we are learning with our son. I had thought it was just his low blood pressure upon eating dairy (from the POTS) that the blood pressure would go down and cause a seizure like episode. The last few days he has done super with no episodes then last night at his party he put a half of a slice of cheese on his salad and 2 hours later he went into a episode. These episodes he is not able to talk for minutes to an hour later (or more) he will look at you but not able to communicate.
    I started looking up more info on cheese or dairy (lactic acid) it goes back to a metabolism or mito disorder. For some reason they are not able to break it down and it goes to the muscles? SO when they eat or drink dairy (lactic acid) it will cause a bad reaction because they already have toxic levels.
    Just wanted to share this info....