Stay tuned all week!
As many of you know we had an amazing opportunity to be accepted into the world famous Mayo Clinic in Rochester, Minnesota in June of last year. After Critter came we anticipated coming back but did not have a definitive date in mind. HOWEVER, M's seizures have increased dramatically since Critter's birth and it was top priority to get back to Mayo for possible treatment.
So with amazing parents (thanks MiMi and Pa) arrangements were made for Princess and I to travel to Mayo and Lord willing, begin treatment. We arrived at Mayo yesterday evening and have already seen God's hand here. Now His hand is not exactly as you might be thinking....Healing for Princess...that comes later this week!!! But, at our first appointment this morning we were able to make an Aggie connection with our new friend, "T" '90. Please Keep T in your prayers as it has been a very difficult battle with many misdiagnosis'. We are all very hopeful that T will be able to be sent back to Texas with a treatment plan and a new opportunity to get better!
As far a Princess, we did not have much today other than some initial blood-work, and a follow-up with the Keto-Dietitian. Tomorrow the real work will begin as we have two consults with our previous Neurologists and and they will be setting other appointments for us.
Please be praying that God will continue to move here! Princess needs your prayers now more than ever as her seizures have increased nearly 600% since Critter's birth and we hope that we will be able to begin treatment of her seizures while we are here. As far as treatment is concerned, the idea is to be able to do IV Ig therapy which will hopefully eradicate the antibody that is apparently causing Princess' seizures (discovered at our last trip to Mayo).
In addition to your prayers for her healing and treatment, please also pray for her strength and endurance as truly each day has been very trying and tiring.
May GOD be truly Glorified!
"Not I, but Christ in every look and action..."
Not I, but Christ in every word and deed...
Not self-esteem, but Christ-esteem!"
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Excited beyond words for the possibilities to come! Praying God's blessings upon your time there and that His mighty hand would be revealed to all whom you encounter. Eagerly awaiting the updates to come!! Much love to you both!!
ReplyDeleteWe certainly will be praying specifically for you! I hope that God will use you for His purposes during this part of your journey, whether by something you speak, how you interact with others about ordinary things, or simply a look that radiates with God's love. Thank you for being such an incredible encouragement to us (in ways you may not even realize)! You may not feel like you are, but you're doing kingdom work:) And we love you:)
ReplyDeleteY'all are so brave!
Praying for you.
ReplyDeleteWe are learning lots about my son's seizure condition and was diagnosed with POTS in January. We seen the best POTS specialist Dr. Grubb in the beginning of April he believes he has a mitochondrial disease. Labs are still out and he might have to have a muscle biopsy. He also needs to have a implanted heart monitor. Since adding enzymes (digestive) and now 2 blood pressure pills for the POTS we are again seizure free during the day. NOW things aren't perfect...but we are now realising it is a far bigger problem and it goes back to your "cells" and has everything to do with ENERGY. Please have them check for this!!! I am praying for you guys....I know the pain that this causes. My 13 year old son can know longer go to school because this is a "chronic illness" and you have to conserve your energy. Praying for you guys. Debbi S.
Praying for your sweet family and some amazing results from this visit!
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