To the Edge and Back: A family's journey through rare disease

  Periventricular Nodular Heterotopias & Infantile Spasms   After Sage was diagnosed with epilepsy and started on meds, everything became real. All our fears for the past 2 and a half months became a very real and scary thing, Sage was having seizures. We had about two days of few to no seizures after starting meds, but then they steadily came back. We then put her on two other medications that didn’t seem to help. A few weeks later she was having quite a few seizures still, and one day things just felt wrong, so with our neurologist’s help, we started her on yet another medication.   The medications she was on at this point were: Keppra, Topiramate, and Vitamin B6. For the new medication, Sage had to be monitored overnight because it could affect her breathing and heart rate. We went to the hospital late on August 28, 2021, and had to be “admitted” after they started her on Phenobarbital. (She has been on Pheno longer than any other medication now...

We have had a pretty heavy year so far. Our lives are pretty consumed with everything Sage goes through, and I hate to say it, but all other needs usually get a back seat to what she needs…even Clover more often than I’d like. 😥😔   This whole year has been a challenge, but just the past week has been a whole different struggle. I was told by a friend that I've become desensitized to Sage’s seizures, and to be honest, I have. If you were to see your baby struggle through seizures so often, multiple times a day, I'm sure you would become desensitized as well. It's definitely not that I don't care, I would not be able to emotionally or mentally handle it if I let myself “feel" It all every time she had a seizure. Most people won't truly understand what that means, only those who have been in a similar situation. So for those who have been lucky enough to not experience seeing your child have hundreds, (more realistically thousands for...

Diagnosis Journey: Part 1-Epilepsy    We were ecstatic when we found out we were pregnant, and even more excited with we found out we were having another little baby girl. Our lives before Sage were pretty normal. We had a toddler who was just as busy as any other, Brandon was working full time and I was lucky enough to be able to stay at home with Clover.   I guess you could say that Sage is our COVID baby because we found out we were pregnant with her right after we had COVID. In hindsight, I even had a feeling throughout my pregnancy that something was different this time around but shrugged it off as just a different pregnancy. I didn’t have many complications besides being diagnosed with Preeclampsia the day I had her. I had Clover by emergency c-section and decided to do a repeat c-section with Sage as well to avoid all the possible risks of a VBAC.   Earlier in the week I was feeling weird, so I took my blood pressure at Walmart, and it was pretty high...

Welcome to our blog , To the Edge and Back: A Family’s Journey Through Rare Disease . My hope in starting this blog is to reach those who may be going through something hard in their lives and give them hope of better days ahead and ways to find joy in their journey. We have been in the world of Rare Disease for 2 years and I have been pretty open about our struggles and successes on my daughter’s Facebook page @oursweetsagemarie but decided to make a more accessible place so that our experiences may reach a new and broader audience.   I am Catherine, mom to two beautiful and unique girls: Clover and Sage. I am the wife of a very hard-working man, Brandon. Brandon and I have been married for almost 9 years. After moving from Utah to a small town in Idaho, Clover was born and is now 4.5 years old. Clover is a spunky, talkative, kind and smart girl who has a unique love of life that is contagious. Two years later, Sage, our sweet "Forever Baby" was born.  When Sage was ju...