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

Tuesday, June 29, 2010

1st day of appts at Mayo

Well, it started today...

I had my first appt. at the Mayo Clinic.  Before we left for the clinic, I called to see if they had received all of my files from Houston...NO!!

So, I put in a call to our precious friend in Houston that was sending them.  She faxed all of the paperwork to Mayo, but thought it would be safer to ship the images (DVD) to us and let us travel with them.  However, they haven't even arrived at our house yet (and she didn't tell us she was doing this).  They are not allowed to overnight anything from Memorial-Hermann in Houston and so even if they are able to make a second copy tonight, they can't actually send it overnight mail.  Someone would have to go pick it up and overnight it for us.  So, Mom is making trips to the house each day in hopes of the disk arriving so that she can overnight them to our doc.  Please pray that it arrives tomorrow, Tuesday.  There are so many scans, tests, etc., that the docs wouldn't want to repeat here (i.e., brain surgery)!!!

They give you an envelope, when you arrive, for all of your medical records.  We had 85+ pages from Houston and I brought another very large stack.  My doc appt. was at 2:30p.  However, this wasn't like most doc appts where they pick up your chart as they walk in the room and say, "so, what brings you in today?"  The doc actually took all of my records at around 2:15p and didn't come in to the room until after 3:15p.  He spent all of that time reviewing my records and creating his own chronology.

He did a basic neuro exam, asked a lot of questions, and told me the different areas he would refer me to while here...we didn't leave the room until 5pm!!!!  Yes, a doc spent that much time with a patient!

Another cool note about this doctor is that he and his wife are adoptive parents.  They have three birth kiddos.  However, they also have two beauties from China!!  We got to share our story about adoption from Korea and how we can't wait until they allow us to adopt (B's cancer & my epilepsy disqualify us now).  We also got to tell him about some friends that are in China right now picking up their little boy!!!  So, that was a special connection.

We start everything he is recommending bright and early tomorrow morning.  They want to do quite a few cardiovascular studies since one of the original diagnoses was POTS (Postural Orthostatic Tachycardia Syndrome).  They are also going to do quite a bit of blood work.  We have been asking about autoimmune components forever and he is going to run the appropriate tests for that, as well.

They are so organized here and print off a nice schedule for you.  However, the schedule has us here until JULY 15th!!!  So, our prayer is that we are able to shorten that...I only have food through Saturday morning.  We are basically able to show up for appts. that are scheduled days in advance and ask them to squeeze us in...Thus, this will be our goal tomorrow.  My first appt. is supposed to be an X-ray at 8:30a, then a tilt table test (back to the POTS) at 9a, and then labs at 10:20a.  However, we are going to try to get the labs taken care of at 7:30a and that will open up the 10a slot for more of the cardio tests that are scheduled for later in the day or later in the week.  The key is getting them all done in enough time that they can be read, discussed, etc., with enough time to still have a follow up with the docs before our flight leaves on Friday!

So, again prayers are greatly appreciated!!!!

By the way, Wed-Sat., I had 30 seizures.  Sun-today, I've had two.  They were both yesterday.  Not a single one today.  It's so crazy...kind of like your car making crazy noises until you arrive at the mechanic.  So, though I want these seizures miraculously gone and cured, you kind of hope you'll have one for the Neurologist to see.  I believe that I have my EEG on Wednesday.  So, if he's going to see one, that would be the time to have it.

Once we finished all of our appts., we made it back to the room and had dinner.  Then, we decided to go on a date!!!  Mayo has a beautiful campus.  So, B grabbed the wheelchair (physical activity is a big seizure trigger for me) and we went on a nice walk through the campus.

Here we are in front of the main clinic.

This is us with Drs. Mayo.

The original Mayo Medical School.

Finally, a picture of the best looking chauffeur, wheelchair pusher, caregiver, hubby, in the world!!!

Tomorrow should be a very busy day.  So, no idea when the posts will arrive.  However, we covet your prayers for:
  • each and every step of the schedule
  • each doctor, tech, etc., and their wisdom
  • B's strength since he's having to do all of the walking and pushing
  • that the right symptoms will occur at the right times for the right diagnosis
  • that each office will be prepared for us
  • that we will be a light and shine for the Lord and HE will receive ALL the glory!!
We love you all and are so grateful for all of the precious encouragement we've received from B's facebook page to all of the texts I have received...thank you!  It's awesome to know that we've got prayer warriors out there calling on HIS name for our sake.


  1. Praying for God's timing on your schedule. In the event you need to stay past Saturday, this is available and may help.
    Mayo Clinic Concierge Services can be reached by:

    •Phone: 507-538-8438

    there are Whole foods located in the Quad cities, which easn there are probably local health food stores nearby that may be able to meet your dietary needs. Let em know if I can help from the Houston side fo things. Much love to you both!

  2. So wonderful that you are there, and will be getting some more info soon! We will be praying for you and for the doctors.
    Please continue to keep us up to date!

  3. Praying for you both and all the doctors you will meet in your coming days at Mayo! Thanks for the specific list of prayers we can be lifting up for you. Love you both! Nick and Sarah