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An unexpected change



The last week has been a roller coaster of emotions! Robbie was doing very well and we were all extremely excited for our little man to finally be done with his medications.

Unfortunately, that wasn’t the case and the plan has changed. Over the course of the last week of the medicine wean, Robbie had three seizures. The doctor was not convinced right away that two of them were seizures so we continued with the wean. On Monday night Robbie went into a full seizure and had to be taken to the hospital. It was a scary night and we were so sad and angry that it was happening all over again. Thankfully John and I were able to stop the seizure at home with emergency medication and the hospital was where they began some new doses of anti-seizure meds. Once he was stable we were able to bring him home to sleep it all off and did not have to be admitted. He is home now resting and trying to understand why he has to go back on his meds.


We are thankful that he does not remember much of the event and we are so thankful that he is safe and ok. We are also staying brave and positive. The seizure was a big step backwards and going back on medicine is not ideal, but if taking a small dose of medicine every day will protect him from what he just went through, then that is what we do.


John and I are so thankful to all those that were excited with him on his last day of meds, he loved hearing everyone celebrating with him. We are also thankful to those that have reached out during this difficult time.

Together with your support, we will get through this hurdle and Robbie will continue to come out stronger. He is so amazing and so strong, we are blessed to have such a fighter to call our son.


Although at times it is difficult sharing the not so great news with everyone, we are thankful that we have the foundation that allows us to speak about his story to help others and to help his fight.

Thank you for always being supportive, we love you all! 💜💜


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