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.
ERNIE will be finishing his course of Antibiotics next week. He is doing well with his family. Please pray he tests well when he finishes the meds, that he will be strengthened daily, and grace for Ruth and the kids. | DADDY is getting new imaging and work ups for his next round of appointments. Please pray for him and Mommy 💗 | ANN/NING is getting her sea legs ⚓️ AGAIN 😑 and is still gathering info on the best course of action for her hearing, etc. | HUGS to all!! Thanks for praying for us. Ruth took this pic on Monday 💗, and even though there is still drama, this is so much better than last summer. I’m just sayin’.
PTL ERKEP’s house sale closed today and Daddy’s okay! Please pray for wisdom for me. I saw Dr. C the Neuro Otol – the plan is (1) get a Crossover Hearing aid (a two-aid system) if this doesn’t help(2) Cochlear Implant. I need wisdom bc this will be another significant investment, and my situation might change. A Crossover assumes you can hear in one ear. I lost a little hearing in my R (“good”) ear Monday am, but it resolved within 36 hours – but this might be just the beginning of change. I have lost hearing unexpectedly in my L over 19 months, and a conventional aid is no longer helpful except for a tiny bit of awareness. The latest decline (a) March 2020: L Ear = Mod/Severe loss, Word Recog 32% (b) June 2020: L Ear = Profound loss, Word Recog 0%. This was accompanied by 19 mo. of major sensory disruption that left me with a torn L hip, compromised R wrist, and an overall loss in mobility and confidence. It is becoming increasingly apparent that I must take action to preserve, and God-willing, build, my quality of life. All of my other senses have been affected by TBI, so I cannot compensate for my Hearing Loss as others do – plus, I have PTSD, etc. which complicates matters. I have been receiving EXCELLENT medical counsel, but the choice is ultimately mine. These additional stressors are not helping my vocal cyst calm down – I’m still having trouble breathing and swallowing. I am not pleased at this turn of events, but I was on my BEST BEHAVIOR at the doc today and was open minded and did not sass him. I am confident that I will receive the guidance I am asking for – God gives wisdom when we ask – “liberally, and upbraideth not” James 1.5. And I say again: EVERY choice I have made, starting in 2011 when that thing exploded in my skull, to trust God when things don’t make sense and I don’t like what’s happening, has been, or is in the process of being validated. God is gracious and His particular care of me flouts human understanding. That said, this is still immensely difficult and I need MAJOR GRACE. But my assurance in the promises of God has been written in blood (not mine!) and sealed by the Holy Spirit. #shreddedgrace
Please pray (1) ERKEP moving house this weekend – for now they are staying local to ensure continuity of care. The kids are doing great, and so is Ernie, although tired. Ruth = 💗 fabulous as always. Please pray for energy and comfort. So thankful for Mom and Dad Bj’s help and the Uncles (R’s brothers)!!!! (2) ⭐️ Continued healing for
Ernie ⭐️ (3) Ann/Ning’s Drama: (a) Trouble breathing and swallowing due to aggravated vocal cyst. This has been monitored since 2011. My longsuffering ENT verified it’s ok, and surgery is purely elective. (I avoided it in 2013 by learning how to run and swallow my own spit instead 🙌, but I have not run since 11/18 due to gait and balance disruption.) I need improved swallowing and breathing. (b) L ear hearing loss confirmed today to be significantly worse than in February. I received STRONG DIRECTION to explore immediate intervention alternatives. But I have Quarantine Apathy and burned out on so many tests and appointments prior to lock down I kinda just want to sit here while EVERYONE KEEPS HIS/HER HANDS TO HI’SSELF. 😑 But this might not be the right attitude 😑 so please pray for an open mind and clear direction re. the best treatment, if any, and PTL for all the professionals who look after me even though I fuss. And thank the Lord for bringing us wonderful docs to look after Daddy and Ernie, too 💗. Ps. Daddy is well – we had a nice walk tonight. 💗 Pic: Ruth reading P2 a story xxxooo