Matt is back at it after surgery (he got his Baclofen pump replaced). Thanks for praying for him and please keep it up! The learning and work never stop. To help, got to shreddedgrace.com and click on the magic wand! Vid: @hopeforhankey #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Chasing December
Prayer Req: increased stamina for December 4 event and return to church || I lost a TON of stamina since my gait breakdown and initial hearing loss in 2018. The increased demands of life in 2019 have been rough, too. But the dizziness and nausea from this last adjustment (Oct ’19) have abated! YAY!! I feel SO MUCH BETTER. The Guys helped me get my sea legs AGAIN.
Pep talk with Coach R:
Me: Randy, my knee really hurts when I’m on the stairs.
R: Are you concentrating on your form? 😑
(Side note: I 🤣🤣🤣 bc it was SUCH a Randyish thing to say. Also, it was extremely reminiscent if Andy Frankenstein.)
Trainer David has given me a gentle 3x week home cardio build up plan that concentrates on my breathing. I’m working towards a Dec 4 event and returning to church. The construction is finishing up and I’m so excited to see all the kids! Thanks again to all my friends who have driven me around and kept me connected 💗. Returning will be a big physical task, though, and I will need to pre plan and ramp this up.|| David has been my biggest breathing critic since 2014, but backed off when the PTSD surfaced. I flatly refused to do a V02 test several years ago and just looked at him with tears in my eyes bc I was too shy to tell him that I have Breathing Baggage from the Life Support/Ventilator process. Randy encouraged me to run (he kept on giving me rules to limit wear on the legs except speed ROTFLOL) bc he saw it was emotionally necessary for me. But I can no longer get away with that superior lung capacity I built on stress breathing bc my arm almost fell off in 2017. Now I’m working on managing my oxygen levels during exertion and am keeping a Pulse Ox log. I will discuss with you later, D. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Learning How to Stand 🍫🍬
It hurt SO MUCH to learn to stand. Before you can bear weight they squeeze you in a human vice called a Standing Frame. Daddy used to distract me from the pain by making me do mental math (what is 3.5% of XX.Y? 🙄😑) and bribed me with his favorite Lindt Truffles (which I never ate, but I thought it was a nice gesture). When I said yesterday that “everything went smoothly w Daddy” I was like YES!! 🔥 I FINALLY get to post this message bc all prior procedures have NOT been smooth. So that’s why we were apprehensive and why we appreciate your prayers so much. || Daniel and MJ are ok 😊 – please continue to pray for complete recovery for Daniel and special grace for MJ as she jumps through this round of Medical Hoops. She is a particularly agile person, and tough as nails, but this process, especially at this stage in the game, is rather wearing. I sent her a Ginormous Variety Pack of Daddy’s favorite truffles as a show of support. Bc when stuff happens I immediately start ordering stuff on Amazon. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Praise: Daddy’s GB tube ✅
Everything went smoothly with Daddy!! The procedure was on time and efficient, and the people smiled 😊 which always helps. We will do this again in January. Now we’re headed home to have more fun. Daddy informed me of the activity list. What he does not know is that we’re doing squats and step ups later. 😑 JK. He gets to rest today bc he had a procedure. We are SO GRATEFUL for your prayers. We were apprehensive but now we are all very pleased.|| ***please continue to pray for Daniel and MJ. ** Merci!! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #brainaneurysm #gallbladder
3 Prayer Reqs
3 Prayer Reqs: (1) DADDY gets his GB tube replaced Wednesday. Pls pray it’s easy peasy. (2) DANIEL’s knee surgery, also Wednesday. Pls pray that it’s effective, for pain relief, and rapid recovery. (3) MJ just had another very scary incident 😑. This is her 3rd post TBI. 😢😢😢Pls pray for rest, healing, and good medical info. || Thank you so much!
Grappling with Life
These Bossy Smurf glasses come in red, too!! Remember how I said the Guys make me grapple w life? Trainer D just gave me a new cardio build up protocol that will address my little breathing issue that surfaced in 2017 and my stamina loss. Coach Randy insisted that I do a certain exercise that challenged my depth perception issues even though I fussed and gave him a pre-emptive “chat” about 😑. But of course he had specific reasons for why I should do this. I had not verbalized my need to either one of them. They just continue to observe, plan, and vouch for my safety. Thanks, guys!! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Sensory Adjustment Period 😑
My Cousin L and Uncle CC came to visit a couple weeks ago. L brought these lovely GF cookies from Boston. Happy Times! Praise: I could tell Daddy was making a real effort to pick up his legs (esp the left) while we practiced walking. It was great – I noticed BEFORE he even told me what he was doing, which means it makes a real difference. Goal = zero circumduction gait, no dragging, etc. still working on it myself. Prayer Req: (1) Improvement in Daddy’s mobility, that we will be faithful in our exercises (2) Daddy’s GB tube replacement Nov 6 (3) I saw my lovely AuD who confirmed additional L ear hearing loss (just a little, but within the time frame of a couple months, not great), and tweaked my Hearing Aid settings. Please pray for this Sensory Adjustment Period and that I will be able to build stamina. Hearing loss is just one factor throwing me off balance, and I’ve lost a ton of stamina since a year ago. This type of hearing loss is permanent but it’s not super high priority for me, but given the timeline (onset Nov 18, More loss Jul 19, More loss Sept/Oct 19) I will go see my docs just to confirm that I’m doing everything I should be. In the meantime, I’m sticking with the Guys who continue to make me grapple with life despite ever changing conditions. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #brainaneurysm
Sensory Adjustment Period 😑
My Cousin L and Uncle CC came to visit a couple weeks ago. L brought these lovely GF cookies from Boston. Happy Times! Praise: I could tell Daddy was making a real effort to pick up his legs (esp the left) while we practiced walking. It was great – I noticed BEFORE he even told me what he was doing, which means it makes a real difference. Goal = zero circumduction gait, no dragging, etc. still working on it myself. Prayer Req: (1) Improvement in Daddy’s mobility, that we will be faithful in our exercises (2) Daddy’s GB tube replacement Nov 6 (3) I saw my lovely AuD who confirmed additional L ear hearing loss (just a little, but within the time frame of a couple months, not great), and tweaked my Hearing Aid settings. Please pray for this Sensory Adjustment Period and that I will be able to build stamina. Hearing loss is just one factor throwing me off balance, and I’ve lost a ton of stamina since a year ago. This type of hearing loss is permanent but it’s not super high priority for me, but given the timeline (onset Nov 18, More loss Jul 19, More loss Sept/Oct 19) I will go see my docs just to confirm that I’m doing everything I should be. In the meantime, I’m sticking with the Guys who continue to make me grapple with life despite ever changing conditions. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #brainaneurysm
🍁 and Gravity Confuse Me
See my Daddy walking? GREAT JOB, Daddy 🙌🔥🤪 !! I was not walking with him bc I’m having a little trouble visually with all the 🍁 on the ground. But we still managed to catch the last few minutes of daylight. Prayers appreciated for myself, please, as I’m experiencing more sensory distress lately. 😑 For the first time since 2013 at Planet Rehab with my beloved M37 I’ve started tipping over while standing. I was between sets w David so I wasn’t paying attention to my stance. And the next week I fell off the end of the ladder, which is on the floor 😑 and to add insult to injury I was holding Randy’s hand AND DLee @fyzicalgermantown was watching. 😑😑😑😑 Randy was like, that’s the first time you’ve ever done that. 😳 I posit that it was DLee’s fault bc he was distracting me. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Neuro Surgeon Check Up
Neuro Surgeon Check up: Standard procedure after placing the kind of stent that Daddy got in his R carotid is to do another angiogram in 6 mo. to check it. But Daddy’s blood flow landscape is so complicated, Dr. C will ask for new scans in a couple months and will decide in January if the combination of these images can verify that the stent is doing its job. If not, she will have to go back in 😑. *Please pray that Daddy will do well (including no Gall Bladder episodes), and that the stent will function correctly and the images will suffice. * Monday and Tuesday are my busiest days – I get to see all my peeps!!! But for the rest of the week I devote myself to our Recovery Enrichment Curriculum 🤣🤣🤣 I’ve totally roped D and R into helping me plan 🤣🤣🤣. * Please also pray for Matt @hopeforhankey as he gets his baclofen pump replaced today. It will take 6 wks to recover from this surgery.* #avmsurvivor #strokesurvivor #brainaneurysm #lifeismysport #learninghowtolive #shreddedgrace
