Our New Normal [s] » Our little family's realization, that there is no normal

Share the Burden

JDM rash at it

JDM rash at it's worst

So many of our friends and family have offered to help and asked how, and I thank you all so much. With much thought and consideration and (humility) I  have put together this list of things I have thought of.

First of all: Please join us in prayer for believing for these specific things for Vivia. And

Second, if any of you have any of these things you could gift her/us, or

Third, feel so inclined as to join us in helping us bear the financial burden (especially the ongoing medical necessities) please feel free to do so.

If you don’t live locally, Email me at freedomg12(at)gmail.com and I will email you our address, (Don’t want to post it online).

We are currently setting up a special needs Medical Trust for our family (including Rio’s ongoing special needs as well) so we can receive the help that so many of you have offered. We also welcome ideas! So, please share them.

 

Vivia’s Wish List:

  1. Beads and beadmaking supplies that she can make all kinds of necklaces and bracelets out of. This is important bc it helps keep her fingers nimble as JDM can cause arthritis. She is making them to support the @GLOBALGENESPROJECT, 7000 bracelets for hope campaign, to send to children with rare genetic diseases, such as JDM.
  2. Coloring books and/or coloring pages to pass the time while at the hospital, and long days indoors at home. Coloring is very theraputic for her, and she goes through a coloring book a week! (Thanks to Christine Aubrey, Tonie Sophia, and Mrs. Labrador and Miranda for already having brought goodies like this!)
  3. Any kind of travel-friendly art project that we can take to the hospital with us.
  4. A personal gamer thinggie (I don’t even know what they are called but like, a nintendo thing, or ???) again, to pass time during infusions.
  5. An Ipad for “face time” with Papi, Mami, Bella, Nona, Baby Brother Rio or whoever else stayed home during hospital stays. (Gainesville is a long drive, so visits from family and friends is difficult). Also for the games and the books, music and the homeschooling etc.
  6. A pass to indoor play places, since she can’t play outside for long periods of time. Like, Monkey Joes, Amaya Papaya’s, Orlando Science Museum or whatever.
  7. A pass to Sea World: (She keeps begging to go, but we can’t do full days all at once. Would need to be able to come and go. Hey, I think Marine Life is therapeutic too!
  8. A penny whistle, yes, you heard me- she wants to learn to play this.
  9. A piano/keyboard- She’s also learning to play this and I think is a brilliant thing to focus her indoor time on.
  10. An indoor mini trampoline (received, thanks to the Randles!) For indoor exercise.

 

Medical Needs List:

 

  1. A special needs stroller for our excursions. She tires easily and needs breaks when on long trips out of the house.  She has outgrown normal, baby sized strollers.
  2. Rash-Guard style long and short sleeved shirts with UV protection.
  3. Cool sun hats
  4. SunScreen- we are always having to buy more and more of this- not covered by insurance
  5. Ongoing supplements- not covered by insurance (too many to be listed)
  6. Ongoing Medicines (too many to be listed)
  7. Chiropractor Visits for nerve and spinal healing
  8. Swim Class (water therapy)
  9. Therapeutic Essential Oils (healing and reversing of cell damage)
  10. Visits to Dr. Colbert who doesn’t take insurance
  11. Since she was dx, we have also had to go on a very specialised diet which includes organic and gluten-free products which has increased our grocery budget by double. This is medically necessary at this time and of course, not covered by insurance.
  12. Lawyers/accountants fees to set up Trust

Vivia has shown dramatic improvements in the past few months, but she is not in the clear just yet. She is still in the thick of it right now, and we continue to believe for her complete healing. As it is now, this course of therapy has been working! And we will stay the course until it’s results are realized.

 

July 7, 2011 - 12:13 pm

Leta - we have an old nintento ds lite that we are not using that you may have.

February 8, 2012 - 9:45 am

Juanita Pannocchia - thank you for your beautiful photo documentary, I can send you some UV arm bands that will detect when its time to apply more sunscreen. these are very helpful when she maybe at school, youth trips, etc…
One of my daughters was diagnosed with JPM/JDM/Lupus.. her senior year in high school. At the time she played varsity soccer all 4 years, not to mention community soccer since she was in the first grade, loved to swim, dance, attend concerts, love long distance running, being with her friends, and most of all with her family. I could tell you of the time before she turned 10, one of her birthdays all she wanted was to have cake and ice-cream with just her family. Her father and I didn’t know what to think so we still invited some of her friends, she still had an awesome time but after wards she still asked for just her private party. We were happy to give her that wish. When Casey said she justs want to be with her family that is what she wants, from her heart.
Casey was 17 when she was diagnosed, her freshman year in college, (biology major pre-med) Casey had to take a medical leave, she couldn’t walk across campus, couldn’t even hold her head up. she would lay in bed with her computer and attend her classes. Determined to continue. A heart of pure GOLD.
We lost our beautiful Casey to this monster of a disease only 17 months of her diagnoses. 6-10-89–3-23-09 ALWAYS AND FOREVER IN OUR HEARTS.

please let me know where to send the arm bands if you want God Bless and we will find a cure!!

February 18, 2012 - 10:57 am

freedomg12 - Juanita, I am so grateful that you found our little page! Thank you so much for sharing your story. I am so sorry for the loss of your sweet angel. My heart is breaking.

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