Health wise not a lot has changed for Ezra. Most of abilities are holding steady and I don’t feel like he’s had any regression🙌🏻 However, we had a nice long stretch without seizures and then the beginning of March they hit hard. He was hospitalized due to seizures and so much vomiting. Vomiting is always worse when he has seizures or when he has what we call bad neuro days. Bad neuro days are when he either can’t walk or he’s dragging a foot, constantly falling, speech is slurred, all his muscles seem extra week and nothing is working well. So the beginning of March he was having some bad days and then they got bad enough he needed to be admitted. He had some absence seizures at school later that month that scared some of the staff too. We increased his seizure meds and we thought we had them back under control, but over the next few months we had more so we added a new seizure med. We’ve seen a pretty big drop in his energy levels, which has been hard to watch. We shortened his school days at the end of March. Most days he prefers to lay around and not play much. He has small bursts of activity and then he’s done. It’s easy for us to overdue it and then deal with him being overly emotional. He’s holding his physical abilities, but sometimes I wonder if this is the start of losing motor abilities.

In April Ezra finally got his service dog, Charlie the goldendoodle! We spent 10 days at 4 Paws for Ability in training. Ezra had a seizure there and Charlie pre-alerted to it. Charlie is a stubborn, tough dog! He puts up with Ezra’s behavior well, but goodness that dog can try my patience! Charlie’s main tasks are seizure alerting, balance, retrieval, and bird catching. Charlie can smell seizures before they happen and he will obsessively sniff Ezra and will not leave him alone. Sometimes he will pace around and stare Ezra down. All of that behavior is what we call a pre-alert. Charlie’s pre-alerts have ranged 7-12 hours before the seizure actually happens. When the seizure happens, Charlie is supposed to give a single loud bark. This is what we are still working on because he hasn’t done this part of it yet. We practice having fake seizures in Ezra’s bed to help learn. It is common for this to take a while after going home for the dog to learn real life seizures. Charlie’s balance work is basically just a special harness that he wears that has a handle for Ezra to hold. Retrieval is what it sounds like, Ezra drops something and Charlie picks it up. Bird catching was not a task Charlie was trained for, but he in the 2 months we have had him he has caught 4 birds…and killed them. To be clear the giant polar bear is running out my back door and catching robins in his mouth! He doesn’t eat them, but the grasp of his mouth on them is enough to kill them. 

Ezra finished kindergarten and is getting ready for first grade. He thinks he is 7, which has been a source of significant meltdowns when I say he is 6. He turns 7 in September, so I’m hoping he will still think he is 7. 

In September we will go to Cincinnati Children’s Hospital for an IRF2BPL conference. Researchers and doctors will present and get to see our kids. The families will also get to meet each other in person. We are so excited to meet some of these people we’ve only seen and talked to through Zoom and social media. 

Once again, we are very thankful for the prayers and support you show our family. Ezra is a well loved boy!