I love to write. I don’t write much anymore though, mostly because I homeschool our kids and I barely have time to watch a 30 second reel much less sit long enough to put my thoughts into words. However, since summer is here, it seems like a good time to update everyone on Gideon’s condition.
At his last appointment in April, Doctor G said that Gideon’s blood work and numbers all look great for someone with a peroxisomal disorder. He said Gideon even physically looks better. He asked if we were doing anything different at home. The only thing we’ve added to his regime are fulvic minerals and we increased his dose of Omega-3’s.
Over the years, Gideon has come off of pharmaceutical medications that were initially recommended. He takes Charlotte’s Web Hemp Oil for seizures and a few other natural things like liquid multivitamins and probiotics. Dr. G also has Gideon on alternating IV’s for detox and to support his liver and immune system. He gets one IV every 5 weeks.
Gideon’s condition is still degenerative. Over time, no amount IVs or supplements will stop his peroxisomal disorder from doing its worst. But from our experience, the things we have been doing for the past few years, have completely changed how this kid is able to function. I mean, the last time he was hospitalized was in May of 2018. And the last time he was on hospice was November of 2019. Since then, he’s still come down with different illnesses. But we’ve been able to manage them at home and with Dr. G…which is a huge win for us.
Another recent win is that Gideon slept 7 nights in a row without waking up once! I can’t remember the last time we got a full week of uninterrupted sleep!! (I think it’s because of the warmer weather; but no matter what has brought on this great sleep, I pray that he keeps it up!)
We are now getting ready to attend our annual Joni and Friends Family Retreat! So in about a month, I’ll be posting all the photos of our experience there. (I’m posting the link to our fundraising page below if anyone would like to help us financially get there!)
https://secured.joniandfriends.org/fundraiser/6157808
Thanks to everyone who keeps up with our family and the journey we are on. I try to post regularly on our social media sites because it’s easier than writing but I know some of our family and friends don’t always use those outlets. So for those that don’t, here’s a recent video of our sweet boy. Enjoy!