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Posted 2019-06-28T13:26:42Z


Hello from New York! The much anticipated days on the calendar to get extensive evaluations has finally arrived. We had uneventful flights to get us to New York and Steve demonstrated that he could drive like a native New Yorker and was quick to zoom in and out and proved it could be done without using the horn! Haha!

Today is our appointment with Dr. Hsu, leading Vascular Surgeon specializing in issues found in patients with Ehlers-Danlos. We look forward to adding him to our team of specialists if all goes well.  We have fun events planned for Saturday and Sunday. Stephanie is flying out  to visit her sister who lives near New York so we are going to take on the town - including 2nd row seats to see the Jersey Boys on Broadway. Yay! If anyone has suggestions for unique, “off the beaten track” places to see or visit, drop us a note here! Monday is comprised of appointments with my Neurosurgeon and a new Neurologist to evaluate the stability of my craniocervical fusion, evaluate my lower spine, and consult with the neurologist regarding my new onset seizures. Monday will be a long day.

Please pray for clarity for the doctors and wisdom for guidance going forward. I have had a rough few weeks since we placed the gastrostomy tube. (Stomach tube for venting excess gas). The problem we have run into is that while doing a great job of venting the gasses, it is also emptying the stomach of its fluids and digested foods leading to dehydration and malabsorption. I saw my primary care doctor to evaluate vitals and lab work which all indicated i was very dehydrated. The plan for now is that I go to the hospital infusion center and receive IV hydration over 4 hours which makes for about a 5 hour visit three days a week. I’m making new friends with the staff and very thankful for the opportunities God has provided to make these relationships. There are quite a few patients who are really sick and its a privilege to pray for each of them while I am there. 

New social media news!!! The Brooks are going to give Instagram a trial run. How many ways can this go sideways with the non-technologically inclined Lee trying this? (Thanks for all the help Jena!) We hope to encourage, inspire, and even draw a few laughs with brief posts and pictures in between the more lengthy and medically technical blog here on Post Hope. Our prayer is to encourage others to live life with intention, passion, and satisfaction against the background of suffering and its sobering realities. Praying it spreads love and joy!

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Grace and Peace,

Lee and Steve

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Comments (10)

  • Steve Braden
    Steve Braden

    Uncle Steve and I are praying for answers/clarity from the doctors. I love how God places you in areas to pray and witness to others. Tell Steve he will be able to drive in a Nascar race after driving in New York. 😂😂 We love you guys.

    one year ago · Reply
  • Mark Colavecchio
    Mark Colavecchio

    Praying for your time there both with doctors and with seeing new things. I'm glad you can do both, and I believe God will meet you in both!

    one year ago · Reply
  • Joan Bouck
    Joan Bouck

    Good luck Lee! It sounds like a "buckle your seat belts" kind of a trip. :) Praying for you to have fun activities to enjoy, delicious goodies to delight, and helpful, steadfast assistance in your ongoing battle. God, love, and support be with you at this time and always. Joan LFD3

    one year ago · Reply
  • Karen Weiss
    Karen Weiss

    You are in all of our thoughts daily! You got this! All our best, Karen & Zac

    one year ago · Reply
  • Tom and Linda Hamilton
    Tom and Linda Hamilton

    I so love your next to last sentence - “ life with intention, passion.......”. We should all be doing this. Think I’ll print that out and frame it. Thank you so much. Love your Instagram idea. I’ll look for you there. Praying here....... 🙏🏼🥰

    one year ago · Reply
  • Teresa J Brooks
    Teresa J Brooks

    I will be praying for successful appointments and strength to get you through them. Hope you enjoy the weekend events! Thanks for keeping us updated. Love, Teresa

    one year ago · Reply
  • Karren Logan
    Karren Logan

    You are amazing and you and Steve share an amazing faith. Prayers for answers and healings. Love you both.

    one year ago · Reply
  • Kelly Anderson
    Kelly Anderson

    Praying for your success!

    one year ago · Reply
  • Sandy Temple
    Sandy Temple

    Praying for you all to get help, answers, and relief, and for you all to have some fun while in NY! Love you!

    one year ago · Reply
  • Frank Kirkbride
    Frank Kirkbride

    Diana and I just returned from a terrific week visit to New Your City. So many wonderful things to do and see. We always visit the Tenement Museum, 97 Orchard Street on the Lower East Side. The original pizza place in America is Lombardi's. Ground Zero, including the 9/11 Memorial & Museum is a MUST visit. (exceptionally well done). If you are up to it, a stroll on the High Line park is very nice. Best wishes and prayers.

    one year ago · Reply