Little Update + Johns Hopkins

Sorry I haven’t been very faithful in keeping you all posted more regularly. There isn’t any real change in my health so there’s not much to update you on. I need to take it just one day at a time as my physical state fluctuates so frequently. One morning I can wake up with convulsions and my muscles tightening and curling, the next day I might be doing well with just a bit of fatigue, and the following morning my voice might be gargled and slurred with my walk being staggered.

But one wonderful thing to tell is that on Friday I was well enough to go to my care group with Church for the first time since the week I got sick; over three months ago now. What a blessing that was! Before going Joe and I just prayed that we would be refreshed and that we would enjoy our time and feel “normal” and like “the good old days” while we were there. God graciously answered that prayer! I so enjoyed our time and although my symptoms began appearing as the evening went on, I was able to make it through the entirety of care group including hanging out for a while afterwards. It was wonderful!

If you wouldn’t mind, could you please pray for me? Wednesday is going to be a big day. It’s the 30th… my appointment with a neurologist at Johns Hopkins. My mom (who has been an ENORMOUS blessing to Joe and I through all this), Joe, and myself will be going. Some of our prayer requests would be for the following:

• Wisdom for my Mom and Joe as they share my past and genetic medical history in addition to my current conditions with the neurologist
• Wisdom for the neurologist as he picks apart my case and determines what tests to perform
• Peace for all of us and trust in God as everything is discussed.
• There is a temptation for me to want to put my hope in “the best doctors in the world” and a diagnosis verses just trusting in God’s loving hand guiding my life through this trial. So also prayer that no matter what the result of this visit I would rest knowing God is the one sovereign over all of it.
• And obviously for a diagnosis, if that’s God’s will, and for healing.

So our appointment is at 2:00pm. The initial consultation and possible testing will last several hours and if they find any reason to do further testing they will admit me and I would be there over night.

Thank you so much for caring for us and lifting us up! We would be so grateful for your prayers!