We are in the process of getting the hardwood floors in our home replaced. We had a garbage disposal debacle a few months ago, leaving our floors with quite a bit of damage. Our floors were prefinished, which required ALL of the hardwoods be torn out and replaced. We made the decision this time to go with individual boards that are finished after they were laid. This way we will only have small repairs if we have any water issues in the future.
I can’t help be see so many connections and correlations between our floors and Gabriel’s epilepsy battle. 1 big event, onset of seizures caused the need for a complete and total reset. It seems that the medications, diet, therapies, and 100’s of other small changes we have made in our lives have been carefully relaying each board of Gabriel’s health. We have sought to make wise choices and follow our doctors orders of making 1 change at a time (that way if a problem arises we can take 1 step back instead of starting from scratch) . We are still celebrating several weeks (I think 9 or 10) seizure free, but we are still far from where we want our boy to be. He is sleeping way too much and not eating enough. We think the lack of eating is being caused by constipation, a side effect of the diet. We started Miralax earlier this week and hope it will get things moving and his desire to eat will increase, so that he will have the energy he needs to be a 4 year old boy!
Doose comes with so many side complications other than seizure control. Our family is really excited to be participating in a fundraising event for an organization called Doose Syndrome Epilepsy Alliance. This group is very small, because only 1% of children with epilepsy have this form, but MIGHTY! This organization and it’s founder Heather Barnes Jackson, have given Chuck and I great amounts of wisdom, knowledge and support. Our family is trying to raise $500 for this year’s virtual walk fundraiser (there is a real run’/walk in Colorado Springs on June 8th). Please check out Gabriel’s page for the event (we left the live with epilepsy as the standard message because it explains doose so well. Thankfully a few of the details, such a job loss and helicopter rides are not true to our story but most of the others are our story). Thank you for considering supporting this charity.