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

Wednesday, May 6, 2015

Epilepsy Update

As always, THANKS!  Many of you have sent us messages and have offered up your support, and again, it has been a blessing.  Thanks to all of you who are praying for Princess' healing and for our direction of care.

Since Thursday of last week, we have been through two ER trips and then Saturday more or less began our most recent hospitalization.  Princess is currently averaging a little more than 11 seizures a day, but that number has been increasing each day.  Yesterday alone, she had 17 seizures.  What is absolutely mind blowing is that she is currently on her same AED's (Seizure meds), was averaging 1.2 seizures per day, and in just the last 5 days has had more seizures than the first four months of 2015 (FYI- what might be a trigger was a hormone treatment that was started, and quickly dropped/discontinued over a week ago that was an attempt to reduce the seizures even more).

While we did finally get to "meet" (meet it was) an Epileptologist yesterday, it was quickly apparent that the physician was not interested in Princess' overall care, but rather, find a quick opportunity to address our concern and then leave.  It is and was an unfortunate encounter, but yet added conviction that where we are currently located, is not the place for Princess to have the comprehensive approach that her particular illness deserves.  Keep in mind, we have been through three neurology programs in Dallas, one Neurology program and surgery in Houston, consulted with the Cleveland Clinic and Johns Hopkins, worked with Jefferson University in Philadelphia, and of course multiple trips and hospitalizations at the world renowned Mayo Clinic.  While the journey has uncovered a lot, it has also left many experts confused and bewildered as to why Princess' situation cannot be resolved.

For us, it has been a 9 year journey.  There have certainly been trials along they way, God has faithfully seen us through them all.  While multiple doctors have awed in the fact that Princess is not in a vegetative state or even worse, we give Jesus Christ, our personal Lord and Savior all the credit for performing over 8,000 miracles (documented seizures) and having Princess still here being an incredible Wife for Life, Mommy for Critter, Daughter to the Queen Mother, Faithful Friend and Supporter to those she can serve.  My heart is heavy for our current trial, and yet, I sit here resolved to get Princess a solution, especially for this current chapter that has us hospitalized.

Personally, thank you to the World's best Mother in Law.  Who through her own trial is taking care of our lil' Critter and trying to maintain some sense of normalcy for our gift from the Lord.  As many of you don't want for your little ones to ever have to experience at a tender young age, Critter has been protected by God.  I am blown away by His provision for her life and emotional protection, but more importantly His spiritual provision.  Critter is faithful, already, "trusting in the Lord with all her heart and is not leaning on her own understanding, but acknowledging Him" (Proverbs 3:5 paraphrase) and is confident Mommy is going to be better and come back home soon.

And again, thank you to my family for your continued prayer and support!  All of us are at a loss for words and even shocked, but your continued faith in Jesus Christ alone is continuing to strengthen our hope and calling knowing that you are praying us UP!  Nana and Grandpa- Thank you for Proverbs 3:5-6.  You're leaving an inheritance for your children's children (Proverbs 13:22).  Princess and I count it ALL joy to continue the inheritance and carry on the Foundation that you have built.

I also want to thank my coworkers who have been praying and for really 8 years have walked along side of us supporting us in various ways that helped me in providing for my family and allowing me the opportunity to be by my girl, my bride, my wife for life's side.  THANK YOU!!!

Lastly, to many of my personal clients and friends.  You not only allow me to take care of you and your family, but you have come alongside of my family in support and prayer!

So where do we go now?  We truly have been blessed this week to be connected to a young Internal Med physician that has taken the time to sit down, listen, and provide a thoughtful response.  His thought process has allowed him to take a step back, and evaluate Princess' situation, and try to get a handle of thing from a different approach.  It is this intentional approach that has allowed us to be where we are today and Princess with the capability and opportunities that she can richly enjoy even with 1.2 seizures per day.  That said, a suspicion that he had will most likely be proven false with results today.  And while, it is discouraging, it does eliminate one more thing, and points us to needing to find care elsewhere.  Please continue to be in prayer for our direction as we are looking at all opportunities.  While doors are open to previously tried institutions and hospitals, we are also looking elsewhere.  Please pray for God's continued provision- Spiritual, Emotional, Physical, and Financial.  Please pray for our thought process and Critter's protection.

Thank you for taking the time from your day to read, pray, and encourage, and not just us, but One Another.  May you today Seek God's Kingdom first, and His righteousness.  Then go and serve one another.

I will post more when we have an update!

In All things, Christ Jesus,

1 comment:

  1. Meredith and Ben, you are in my daily prayers for healing, comfort, discernment and hope. Love to you and your family.
    Beth Henderson