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!
Follow us @leeandstevebrooks
If you are not on Instagram you can find us at: www.instagram.com/leeandstevebrooks
Grace and Peace,
Lee and Steve