9 years of living with Type 1 Diabetes today. 5 years of Hashimotos, and 2 years diagnosed with Stiff Person Syndrome.
Xander you are a Warrior and I’m in awe by your bravery everyday. I’m late to share our monthly update usually on our IVIG treatment day. Great news…. We got a telehealth appointment with Dr. Amanda Piquet, Celine Dion’s doctor, and head of her foundation. Celebrate the wins 🎉
We have been home for two weeks and in that two weeks he’s had two therapy treatments, one IVIG treatment, first time the vein was aggravated, inflamed, and in pain, a scoliosis specialist follow up, we’re doing well there but needs to wear the brace at least 13 hours a day, yikes. And a sleep study last night to rule out a few things. When you have neurological disorders like Stiff Persons you have trouble with sleep and sleeping.
The dolphin assisted, hydrotherapy with cranial sacral therapy is wonderful …. However, when you come home and the focus is back on doctors visits, medications, pain and diabetes management as well as treatments and therapies, it’s a lot. How does one focus on wellness when a lot of the focus has you booked solid. You sit down and reassess the balance and approach. I share so other families going through chronic illness do not feel alone. This is a lonely journey. If you know of anyone who has a kid 18 or under with SPS reach out.
We set up a go fund me so Xander can have a better life.
How can you help? Donate, share this story on your page, reach out for a BaZi reading or Feng Shui.
We have ongoing medical costs for things not covered under insurance.
