Such a lovely quick visit 💗. @sarahshandmadeicecream opened a new location – Wildwood 🔥 @jokhouri and I love it there 💗🍨. We are very grateful for our family. I have been adjusting to meds and hearing changes – not cool. But my people are all over this!! Daddy has had good appointments so far, but is getting more imaging for his neck. Ernie and family are ok 💗😊. Please pray for continued healing and strength for my brother. #avmsurvivor #strokesurvivor #learninghowtolive #lifeismysport #shreddedgrace
A precious friend sent me this bracelet. Everyone, thank you for your kindness!! 💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #asl
Ezra asked why I was practicing my #asl at dinner Me: Because I’m losing my hearing. Ezra: Don’t worry, Aunty Ning Ning. I’m gonna get a phone and I’ll type everything to you.|| I am no longer a Cochlear Implant candidate. It would be fantastic for my hearing, but I cannot risk getting dizzier. My internal equilibrium has been in flux since this started in Q418. I became officially deaf in the L in Q220. This is permanent, there’s no reason why this is happening right now, the scope of my original #TBI makes all outcomes uncertain, but I’ve done my medical duty, my people are THE BEST, and presently there is no Action to be taken. My R ear has officially started changing, and I have seen my AuDs and reviewed the protocol. I have a 100% accuracy rate in discerning changes in the past, and the current change is mild and merits no intervention. This new level of Hearing Loss and the non-possibility of a CI mean I am pretty stressed out. My lovely Neuro said it’s messing up my muscles. I have been in a TON of pain, but have access to equipment/strategies to help myself at home. My Psych re-started my PTSD dreaming meds and boosted my anxiety meds bc I’m dreaming again and compressing my voice box so that growth is aggravated. My other MHP’s are ALL OVER helping me deal with all these changes. I now need a Hearing Aid in the R ear, but am becoming better at understanding inaudible communication. Prayer Requests: PRAISE (1) I’m in pain, but I can still walk from one room to another whenever I want. Today is my 9th Walking Anniversary and I am NEVER GETTING OVER IT. (2) I have SO MANY resources to deal with pain, anxiety and PTSD compared to last time I was dreaming bad things in 2015-16 (3) I’m grateful these hearing changes are happening at this stage in the game. I needed to take verbal direction from my Therapists early on otherwise I would have not made rapid progress. (4) The Lord has prepared me to deal with any number of outcomes here. It is sad sometimes, and rather daunting, but every scenario is a COMPLETELY WORKABLE situation. ||PLEASE: Grace. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
They took me to the AuD last week and we met a Therapy Bird! 👍 please pray for Mommy Daddy as they visit with the Vascular Surgeon today. Daddy also has several upcoming appointments 💗💗💗 #strokesurvivor #brainaneurysm #😑
We had a lovely visit from ERKEP. My brother looks good and RKEP are as fabulous as ever. Please pray for their MI house hunt, that Ernie will continue to gain strength daily, and he will get set up with his MI doc (referred by his Penn cardiologist); of course there are the requirements of daily work and school for all 💗💗💗. We are so pleased to say goodbye to this harrowing Summer – let’s be real, Summer 2019 was pretty rough for our family, too – and welcome Fall together.
Praise God, Ernie’s blood 🩸 cultures came back 👍 (negative for infection) 💗😊🙌. WOW. Pls continue to pray… (1) Ernie gains strength. They are safely in MI, continuing to adjust and house hunt (2) Daddy is Daddy 💗 and we’re doing the usual round of check ups and imaging. Praise: his steps are steadier! 🔥 (3) “O” got his NG tube out and there’s a ton of healing and adjusting and resting to pursue 💗 (4) I am praying about Cochlear Implantation. I’ve done a lot of research, my team is top notch, I’m VERY uncomfortable as-is, and I admit I have been carrying a MUCH heavier cognitive load for the past 20 months. It’s not just inability to hear, it’s proprioception, hyper vigilance, overall mobility, the additional
tax on my problematic vision, etc. I’d love to gain some relief from this new device, but the nature of my TBI makes outcomes uncertain for me even though CI’s in general have extremely positive outcomes. Please pray for wisdom and courage for me. || Ps. Examples of Cognitive Overload: trying to disembark from a still- moving car, inability to name the days of the week or months of the year with accuracy. FYI the car thing first happened with Boo Boo. She was NOT HAPPY. The second time was with mommy – she had to convince my for two minutes that I needed to close the door so she could actually park the car. I was like, Nuh- uh, Mommy, C’mon. Don’t worry – I have safety protocols in place and have reviewed these incidents with my Neuro.
Look – Ernie is grilling!!! Yes, that’s right – MY BROTHER – the one you guys prayed for so earnestly. 💗 Thank you so much. We enjoyed a week together and now ERKEP is driving to MI as we speak. Please pray: (1) ERKEP – safe trip to MI, house hunt, and **that Ernie’s blood cultures will test FANTASTIC this week 💉🩸💗** (2) DADDY – misc appointments and follow up (3) “O” got discharged and is transitioning to his new home. Please pray for comfort and that he will be cleared to swallow, and grace for his Caregivers as they transition, too. (4) ME: having a rough hearing adjustment. Cochlear Implant intake is Monday. Meanwhile, my throat feels better – stuff still gets stuck if I’m not careful, but it’s a real relief 👍 Thank you! 💗
I got a CROS hearing aid! You wear 2 devices, and the Aid in my L routes sound to the R. I have mild hearing loss in the R so there’s a tiny bit of amplification. Trying a CROS is a required prior to candidacy for Cochlear Implantation, which will be the long term solution and was only approved by the FDA 2 years ago for SSD (Single sided Deafness). Thank you for praying for my attitude, guidance, and adjustment. I am much more open minded now, have been on my BEST BEHAVIOR and am doing my homework. MEANWHILE, we LOVE being with ERKEP and do not take this time for granted. 😑💗😑They will drive to Michigan next week. They have been planning this move to be close to Ruth’s family for a while 💗. PRAISE: “O” has made the Hardcore Gains I asked you to pray about. Trach is out and he walked with a walker. 🔥🙌💗. Please pray for timely discharge, continued Healing, and his caregivers 💗.
We are THRILLED to have ERKEP here!! 💗. No, really, THRILLED. Boo Boo wisely pointed out to me a couple months ago that yeah, Tans have health crises, but we love being together for any reason!! 🤣🤣🙄. Please pray (1) Ernie’s blood will be 👍. His PICC is out 🙌 and his blood is being monitored. He just got tested today again 😊. (2) O & T had successful surgeries, PTL!! Please pray for a great recovery, especially that O will make HARDCORE GAINS in the hospital prior to discharge. (3) praise: Daddy just walked outside with Ernie and Ruth. THEY WALKED ON THE ROAD 😑. Me: 😳 whoa.
Mommy needed a 🍌 yesterday so I ordered this. Thanks for letting me contribute to our household, Door Dash. Please pray!
(1) ERNIE: PICC removal on Friday. His blood will be checked 2 wks after. Please pray for STELLAR results (2) DADDY: doing a LOT of appointments and imaging. xoxoxo (3) ME: Guidance and provision for Hearing Solution – still gathering info and becoming more willing to pay $ and potentially get poked in the head, but I’d love it if insurance paid for that part (4) “O” and “T” – Surgery Friday. T’s is outpatient but harrowing 😳. O’s is MAJOR. Will require reconstruction and rehab, a trach, etc. and a 7-10 day inpatient stay. Please pray for success, their healing, and their Caregivers.