Josie's Journey

"When it rains, it pours, but you didn't even notice... it ain't rainin' anymore. It's hard to breathe when all you know is the struggle of stayin' above the risin' water line." I'm going to write updates here, in Josie's OG blog. It will be so much easier for me to keep our incredible Team Josie updated, and I'm always happy to return here to Josie's Journey. A trip to the ER turned into the PICU - Night One We drove Josie to the NYU Emergency Room on Friday. She was sleeping for just way too long. She does this from time to time and it's always a guessing game as to why. Could it be her seizure medication? Is she on too much? We just raised one, it must be that! Is it COVID? Is she just choosing to sleep all day like her Grandma Helen? Is she just over this cold dark winter? I am. Is she having seizures in her sleep that we are missing and she's postictal (the fancy word for being knocked out by the seizure monster). We shoo...

Josie (sort of) Goes Back to School. The beginning of September and our social media feeds are covered with those adorable back to school photos. I do it too - every year. I stick to my non-crafty-mom schtick - a simple piece of note pad paper with a sharpie drawn - First Grade! Second Grade!  You get it. I got Tanner to hold it up this year despite his 14-year-old, stop-taking-pictures-of-me attitude.  He did it with a fake smile and his breakfast in hand and oh how that warmed my heart. For Josie, this year gave me incredible pause.  Well, first of all, she's not even going back to actual school yet. Since the pandemic started in March 2020, she has been home.  The school nurse she had for many years found another job and now isn't available.  Josie requires a nurse to come to our house, ride the bus with her, and stay with her all day until they return back to our home around 4pm. The agency found a nurse for Josie to return to school for a few weeks this sum...

What would inspire me to come back to this blog after nearly four years since my last post? A Facebook comment of course. A friend from elementary school commented on a Facebook photo of me and Josie, "I miss your blog." Those four words really hit me. I needed them. I loved keeping this blog. I wish I hadn't stopped because this journey sure could use some real-time journaling! So, I'm back. Anyway, remember when I was just searching for Josie's diagnosis? Remember when there were only 93 people known in the world with FOXG1 syndrome? Remember when the geneticist didn't really know what FOXG1 was? Well, fast forward to today and it's a different story. There are now about 900 people known with FOXG1 syndrome.  Introducing the FOXG1 Research Foundation. I did mention in my last post in 2017 that I launched the FOXG1 Research Foundation     along with the yin to my yang, Nasha Fitter and a team of amazing FOXG1 parents. Four years later and we are the gl...

...Shine 'til the break of day. An update from Josie's school Josie's teacher has been sending me some photos of our little school girl. She writes, "Josie brings so much joy to our classroom. From the minute she arrives, she's got us all laughing." That's my girl. Life isn't what we planned, right? We sure didn't plan that Josie wouldn't be able to walk into her kindergarten classroom by herself or talk to her friends, but if she can laugh every day and be someone who brings joy to those around her, well, she's doing just fine. The soundtrack of Josie's Journey: "Soulshine" by The Allman Brother's Band So why the title of this post? Soulshine is one of my all-time favorite songs. It's originally an Allman Brothers tune, written by Warren Haynes with vocals by Gregg Allman. Warren's kept it strong with his Gov't Mule version. So get this... in two nights in NYC, there will be a benefit concert celebratin...