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Happy New Year everyone! I hope you all had a fantastic kick-off to your winter break. We enjoyed a very lovely Christmas, kicking it off with the children singing in an absolutely gorgeous Christmas celebration at church the Friday before Christmas eve. We were so blessed to be able to attend church in advance, which allowed me a day to sleep off the overstimulation before heading to the Farm to enjoy Christmas festivities with the entire US-based Lefor crowd (we missed you Nanjos!).

I was able to safely get out in my e-chair due to my wicked fancy e-chair car, the Crip Whip, and I was So. Dang. Grateful. Jay currently has to tie my chair in and out, so I’m not yet independent, but we put on 4,000 miles in 2023. That has to be over 10x what we did the years prior without my chair. Furthermore, in the spring, my wicked fancy stair lift was installed, allowing me to FINALLY tuck my babies in at night! Jay got my bed upstairs promptly, and I could not put words to adequately describe the deep peace and love I’m flooded with as I kiss them in their sleep every time I get up in the night. It has changed my life, and it happened so very much sooner because I was ‘brave’ enough to put my pride aside and say, you know what, I didn’t choose to be crippled, it is OK to say we need help. So, here we are again!

Updates (5)

December 30, 2023

Detailed description of unmet medical needs as discussed on December 30, 2023:

CAR MODIFICATION TO DRIVE FROM E-CHAIR (~$4,600; the cost of independence!)

We have really enjoyed the luxury of having my wheelchair out and about with us. Currently Jay has to hook up/untie the tie-downs, as the welding for me to be able to drive or sit in the passenger's seat, was unsuccessful at the original install. The specs 'should have' lined up; but with the modifications done to my WC (my 6-wheel e-chair, that is :), the pin they had to put on the base of my chair was literally dragging on the ground. Back to the drawing board. lol. Our Van Man was able to find a solution, and between the wheelchair modifications as well as the welding to the front and passenger's seat, we are looking at approximately $4,600. I have gotten more brave driving with the hand controls, for short spurts (I've gone to several appointments solo this month, using my walker to transport myself and purse/etc safely), driving up to 10 minutes at a time using Agatha (the pain in the butt leg lol). I have finally gotten to the point where I feel not only able but brave enough to want to take the kids to school in the morning, and to some (non-stressful!) appointments. That said, I still have spikes in pain every single time I get into or out of a vehicle. It feels like stairs, which are in a sense, brutal....and with each time I climb in and out of a car/sit and stand up, the pain gets higher and higher throughout the day. I am hopeful that the (hopefully, final, ha) car modifications will give me confidence to drive more (less pain triggers by staying in my WC = less pain/anxiety, less meds, and more trips out with my family!), to reestablish some genuine independence, but also to protect me if I have a treatment that destabilizes my hips or if I get to go to the gym/do some PT, and am too tired to get in and out of the car.

RECUMBENT "ELLIPTICAL" TO STAY STRONG (~$5,500)

A specialized exercise machine called the NuStep T4R. This machine is the one I used to attempt cardio-like exercise most successfully (least exacerbation of the spinal injury/longest tolerance of motion). What Mary Freebed (and I) like about this as when I lose the control of my leg (brain shuts down the control panel when it perceives I'm gonna do something dumb like repetitive motion/walking), I am able to make the legs continue moving through use of the arm/upper body controls. Part of the loss of sensation I have experienced is in the abdominal wall muscles on the right side (like below my rib cage to my hip; the nerve damage was at the nerve root/spinal cord level, so, I have some other odd symptoms), so this is particularly ideal because the machine will make my legs and core contract in a much more normal fashion than I can do while standing. Bonus: exercise at home even on rainy/snowy/muddy days or on days that seem to hard to 'get out'. I REALLY hope for this! I hope to also be able to get one used to save a ton.

SERVICE DOG X-RAYS & GEAR (Currently $1,100-$1,600)

We have happily introduced Morpheus to the public!!! Also, this year, we added to our family. With service dogs that have a job requiring them to bear weight, they must be within 60% of our height and weight...so I have two very big boys!!! After a ton of research and years of hoping and praying, we went as a family to select our Apollo Raptor, a melanistic Red Doberman. His daddy weighs 105lbs and his momma, 85, so he should hopefully fill out near to Morpheus's stature (Morpheus Magnum is 107lbs, and half Doberman half German Shepherd). Our hearts broke in 2019 losing two aged dogs concurrently, so I (very impatiently!) waited until Morpheus turned 4 to get our next puppy! We chose this specific timing to assure that his successor would be matured enough to have the bone assessments done and begin training, before Morpheus retires. Apollo is the most unique, playful, diva dog I've ever known. He and Isabella keep each other busy all day long! Luckily Morph is the only one with real responsibility, for now, Apollo just gets to be a very well loved kid!We have done what we can independently for training and 'over-the-counter' tactical vests, the next things he needs to be successful are:

Orthopedic exam and X-rays from a specialist, to assure he is capable of weight-bearing ($500)

Specialized Mobility and Counterbalance Harness ($600, Bold Lead Designs) to safely distribute my weight. This company is favored by handlers of Mobility Service Dogs for both comfort and function; is specifically crafted for Morpheus's measurements and is made of leather and sheepskin. This will help him help me get up from seated positions, 'forward momentum' to get me moving, and, 'counterbalance' to make sure I am stable while both walking and standing still.

Touch up training (will be completely variable, likely about $600 upfront): once ortho exam and build of the harness are complete, I will need to hire a professional to train both Morpheus and I how to have him safely help bear my weight!

ANTICIPATED UNCOVERED MEDICAL NEEDS: ($11,700-15,700; will vary upon testing results)

So the real deal is, if you get me talking about this, I will probably cry and almost certainly never stop talking. lol. So. Basically, we've run out of science that our healthcare system covers, and are down to doing some 'experimental' assessments to determine why my nerves are under attack. Dependent upon the results of the testing, my physician has indicated he would likely want to proceed with LDA Injection therapy, as well as a likelihood of stem-cell treatment derived from fetal cord blood. I have recently encountered a lovely woman at our church whom I've seen go from wheelchair, to walker, by having a similar treatment done, amazing results, but out of pocket (and for her, even out of country, for the treatment!). Additionally, I'm in week 8 of 3x/week treatments doing laser therapy, deep infrared treatment, traction, OMT (osteomanipulative therapy), and 1/wk massage therapy. It has been intense, some days brutal, with many days resulting in me spending the evening convalescing in a quiet dim bedroom, BUT, I am moving better, standing straighter, and with less of a gait impairment!!! I want desperately to continue this treatment but currently is roughly $700/month for treatment....We've been squeaking by but have recently added healthcare premiums for jay+kids, and our student loans, back in so I'm not gonna lie, there are sacrifices outside of the time and pain for this!

Advanced Autoimmune, Inflammatory, and Heavy Metal Testing ($4,000)

Monthly Body Work ($700/mo)

LDA Therapy (TBD)

Stem Cell Therapy ($7,000-$12,000)

GYM MEMBERSHIP + PHYSICAL & OCCUPATIONAL THERAPY

My real hope is that I can get the welding to my car done, such that I am able to give Jay and my Mom back some hours to their weeks. We are already at 3-4 appointments/week and that will go up if I begin to do any rehabilitative work outside of what I mentioned under medical. Having the ability to drive from my wheelchair, with the auto-hitch installed (removes need of a 'strong' person to tie down and release my chair), means I should be able to go to the therapy pool, 'work out', and SAFELY and confidently get myself home. It will quite literally open a new world to me. And, if this dang chair stays permanent, I WILL THRIVE, so I need to be able to get myself back and forth to GR to compete in a new national E-Chair Soccer league.

December 30, 2023

Happy New Year everyone! I hope you all had a fantastic kick-off to your winter break. We enjoyed a very lovely Christmas, kicking it off with the children singing in an absolutely gorgeous Christmas celebration at church the Friday before Christmas eve. We were so blessed to be able to attend church in advance, which allowed me a day to sleep off the overstimulation before heading to the Farm to enjoy Christmas festivities with the entire US-based Lefor crowd (we missed you Nanjos!).

I was able to safely get out in my e-chair due to my wicked fancy e-chair car, the Crip Whip, and I was So. Dang. Grateful. Jay currently has to tie my chair in and out, so I’m not yet independent, but we put on 4,000 miles in 2023. That has to be over 10x what we did the years prior without my chair. Furthermore, in the spring, my wicked fancy stair lift was installed, allowing me to FINALLY tuck my babies in at night! Jay got my bed upstairs promptly, and I could not put words to adequately describe the deep peace and love I’m flooded with as I kiss them in their sleep every time I get up in the night. It has changed my life, and it happened so very much sooner because I was ‘brave’ enough to put my pride aside and say, you know what, I didn’t choose to be crippled, it is OK to say we need help. So, here we are again!

Friends and family, thanks for hanging on. The snapshot of what we need is herewith, but below in “updates” I have written out a longer description of each need. Friends of friends and family—you rock, too!!! Please reach out if you have questions or concerns!!! In a couple years when my head is on straight, each and every one of you (unless you click anonymous, Help Hope Live rocks and won’t tell me who you are) will be recieving a postcard of the art I’ve created while rehabilitating. One thing at a time, though!

Happy New Years!!! Love, Julia

Financial Need Snapshot (Medical is highly variable but estimate from Nov was approx $15,000)

CAR MODIFICATION TO DRIVE FROM E-CHAIR (~$4,600; the cost of independence!)

RECUMBENT "ELLIPTICAL" TO STAY STRONG (~$5,500)

ANTICIPATED UNCOVERED MEDICAL NEEDS: ($11,700-15,700; will vary upon testing results)

Advanced Autoimmune, Inflammatory, and Heavy Metal Testing ($4,000)

Monthly Body Work ($700/mo)

LDA Therapy (TBD)

Stem Cell Therapy ($7,000-$12,000)

SERVICE DOG X-RAYS & GEAR (Currently $1,100-$1,600)

GYM MEMBERSHIP + PHYSICAL & OCCUPATIONAL THERAPY (TBD)

Photo Galleries (4)

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Guestbook

December 30, 2023

Happy New Year Julia! Sending you and the family our love!

Andreea Neaga

July 31, 2022

Sending you hugs and lots of love my friend!

Andreea Neaga

December 24, 2021

Instead of giving them a gift this year, my sister-in-law asked that we donate to your cause, Julia. So many people care for you. Merry Christmas!

Mary Quillen