It has been 962 Days since my last confession.

Hello, Everyone!
It's been a very long time since I have written a post on here as life became even more hectic and I got lost in the hustle and bustle of life's everyday needs. If you're a personal friend and/or are acquainted with us, I began sharing most of our journey via my private facebook page.

Sometimes "putting yourself out there" with brutal honesty and integrity makes people feel bold enough to invade your personal boundaries and space. On several different occasions, I have received harassing anonymous letters to my home address. It felt scary and very invasive. And then it made me feel like many people didn't deserve to have a window into Abe's world anymore.

I have since realized that this is my life, I have to advocate and be his voice and I am no longer going to let faceless and nameless people hurt me into not sharing. Share Abram's journey is very important! Especially because he has UBE2A Deficiency Syndrome and without awareness, no one will ever know about it or even attempt to research for a treatment or cure. 

I'm not quite sure any of us have actually recovered from the dark long days and years of the pandemic. For most of us, those days are still a heavy cloud that hangs over us as many of the things we used to love and do still have not re-opened to the public as of yet. We especially miss the pool at ChildServe!

In the 962 days that I have been absent from writing on my perch here, so much has happened. A pandemic. An amazing love story. And a major addition to Abe and I's family with my marriage to a man I met during said pandemic and who moved here last October to be with us. He has been a godsend. 

Unfortunately, in the last 962 days there has also been a pretty serious regression in all the things that Abram was previously able to do. After years of thinking the isolation of Covid caused his new and continuing issues with his feet, it turned out that Abram had a tethered spinal cord and a major growth spurt. This equated to him constantly toe walking, increasing pain, aggressions, self harming and so much more. It took 2 years of advocating, two physical therapists, three orthopedic surgeons and three children's hospitals in two states to figure this out.

Abram underwent the laminectomy, where they cut away parts of his vertebrae in order to release his spinal cord and remove the adhesion that caused it. His legs unfortunately have been in toe-walking contracture for almost three years and there is permanent neurological damage done to his left leg.  So, Abram will have to endure an even more invasive surgery to cut his heel cords, cast his feet how they should be and hope that he will be able to walk again with the help of leg bracing and inpatient rehab for days or weeks in the very near future. We actually speak to his orthopedic surgeon at Gillette tomorrow morning for next steps!

Lots has happened since 2020 just as it has with everyone else. But believe me, the families of children with disabilities were hit the hardest. Especially those of us who have children with immunodeficiencies!

I hope that 2023 finds you all well and as hopeful as ever. I promise to be more engaged moving forward. I miss writing. I miss sharing to people outside of our circle. My friend and I were even lamenting that we MISS all the days of therapies and having consistent routines but for Abe, those days are coming back hard and fast with water physical therapy and food therapy to try and see if we can change his diet preferences away from the universal chicken nugget. 

Much love friends!