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, April 20, 2011

Mayo Clinic: Day 3

First, we learned today and it is with great sadness that we lost a dear friend in Brennan Moore.  Please be in prayer for Brennan's family and close friends as his death was very sudden.   

His visitation will be tomorrow night at Rest Haven Funeral Home between 6 and 8 pm. Funeral is to be held on Friday, 11 AM at the First United Methodist Church of Rockwall.
Mayo Clinic- Day 3:

Today, YES TODAY...was a supposed to be a big day.  It was one of those days that starts early and ends late.  Well, that is for the most part what happened.  

We especially were looking forward to this particular day because of what would be our last appointment for the day...our entire reason for coming.

Many of you might already know that from our previous trip here in June of last year, it was discovered that Princess has an unusually large presence of a particular antibody that is most likely triggering her seizures.  Therefore, it would seem that Princess' seizures are more auto-immune related than anything else (i.e., cancer, lesions, malformations, etc.).  So, today we had an amazing opportunity to work with one of the leading experts, if not the leading expert, in this particular antibody, GAD-65.  Now for those of you that like to do research you will find that this antibody usually is associated with Stiff-man syndrome and Type 1 Diabetes.  They are just now seeing that it can also affect the body in other ways, like seizures.

Anyway, we had a busy day.  First meeting was with our POTS specialist who was able to provide a little bit more insight and understanding that POTS and Princess' seizures are truly independent of one another.  However, he did want to defer to the Immunologist that we would be seeing this afternoon.  After seeing him we then had to get some additional blood work done and then off to more appointments.  

Finally, we were at our last appointment for the day- the Immunologist.  Bottom line, he confirmed that given all of Princess' symptoms and her level of GAD-65 present, her seizures are most likely auto-immune.  Secondly, treatment IS AN OPTION!!!  He is confident in both statements simply because of our pregnancy.  GOD IS GOOD....ALL THE TIME!!!  Recall that we felt strongly the Lord leading us to become pregnant and that we did!  In a way, the Lord ran a little test of His own to demonstrate that Princess' seizures improved and decreased throughout pregnancy.  Thus, doing immune therapy treatment would most likely help Princess get rid of her seizures.  Bottom-line, the doc seems to think that Princess would respond well to treatment because pregnancy was good (note that Princess' seizures have increased substantially since giving birth).  Oh and by the way, as many of you have joked, "maybe y'all should just be pregnant all the time..." there might be some truth in that.....NO, we are not!  

Treatment-  our slate has suddenly become even more full as we complete our week here.  Over the next two days we will be doing more diagnostic testing that has not already been completed that needs to be done for Princess' future treatment.  Once the doc submits his write-up and recommendations we can begin treatment in Dallas.  Treatment will involve at least 12 weeks of therapeutic injections of IVIg.  Then we will be back at Mayo in July for reassessment, followed by more treatments over a multiple month time frame, though not as consistent, and then most likely some sort of maintenance schedule to ensure that these seizures/antibody stays away.  

So there you have it.  We are greatly encouraged, especially by our final appointment today, but there is a little frustration in that we see treatment as now being a lifelong journey.  Please pray for that.  Pray for God's peace.  God's healing.  Wisdom for everyone involved.  Thank you and we look forward to seeing many of you soon.  Pray for our strength for tomorrow as we will be very busy and will be trying to accomplish much.

Lastly- for many of us Aggies, we will be meeting at some location or another to gather together for Aggie Muster.  Recall "On April 21st each year, on the anniversary of the Battle of San Jacinto, Aggies gather together, wherever they are, to commemorate fellow Aggies who have died during the year. The tradition was begun 21 April 1903."  Like the March 1923 Texas Aggie urged, 'If there is an A&M man in one-hundred miles of you, you are expected to get together, eat a little, and live over the days you spent at the A&M College of Texas.'  And to that we are doing the same.  If you know someone in the Rochester area please mention to them that we will be having Muster at the Mayo Clinic.  Already we have about 10 Aggies that will be joining us to relive our day of our beloved Texas A&M.  


  1. WOW - what an awesome God we serve!!! He brought you sweet P to help diagnose her Mommy!! Such great news!!!

  2. What exciting news, we may finally have an answer! There is ALWAYS HOPE, however far fetched it may seem with this treatment. Through him we have hope. Jeremiah 29:11 "For I know the plans I have for you," declares the Lord,"Plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE"
    We are praying for you guys, stay safe and see you soon.

  3. Praise GOD!!!!! So wonderful to hear about the treatment option. We knew there was a link!!!! Glad they could finally pinpoint it. Continuing to lift you guys up. Love you!

  4. I tried to post a comment last time but my internet connection failed. But I have still been praying. I have tears in my eyes after reading this post. Press on! our God is "quan neng de" which means, all powerful! Love you guys!

  5. Very glad you are getting more answers! It doesn't surprise me when they say that POTS is a different problem. We heard that too.
    Dr. Grubbs says every specialist just focuses on their speciality and doesn't connect that God made all "organs" to work together. We are proving that is some of Caleb's problem with the low blood volume and now taking 2 blood pressure pills increases the blood pressure so after eating (20-2 hours) he isn't having episodes any more. Approaching one month episode free! This is one to fix the nights with the "gasping". There is a lot of POTS patients that has seizure like episodes. His seizure case has never been a normal one...medicines made his worse. It is funny....the 2 blood pressure medicines hasn't affected him at all. Praise!!! Take care and keep us informed!!

  6. Wow, congratulations- that is great news! I knew when I began reading the post that there was something promising coming, I can already see things getting better for y'all- I'm overjoyed!

    Love ya,