continued from yesterday… We did go on to have several months of seizure freedom. During those months Trevor continued to make developmental progress in spite of his abnormal EEG. Which remained intermittently spikey over the left side. I never had a peace settle over me that our journey was over. I always had this hunted feeling. Like we were being stalked by the Seizure Monster. But our neurologists insisted he was on a positive path...
Continuing with the Faces of Epilepsy series, I’d like to introduce you to my friend Danielle. Her son Trevor has Infantile Spasms, a life threatening form of Epilepsy. They, together with her husband Jonathan and older children Bristel and Toby, have been on quite a journey. Listen to her and I guarantee you will laugh, cry, and be amazed… I should establish up front that I have tendency to take the scenic route. If you’re...
— 1 — I usually complain that I don’t get good pictures of Aidan, but boy oh boy did he produce photogenic joy for his birthday this year. — 2 — I’d say some tricked out wheels and independence is a great way to start your 11th year. — 3 — He loved getting gifts, though truth be told he mostly loved to drum on them and it took some coaxing to get him to...
With total bias, I bring you my favorite guest writer in the series, “Faces of Epilepsy.” As we know, when one person is diagnosed with Epilepsy, their entire family is affected in some way. Liam is my oldest son and here he gives words to what it’s like living with a sibling with a disability. In the interest of full disclosure, I gave him free reign to say what he wanted about us but edited...
Every good team has a method of making decisions, right? I can’t say that Garreth and I ever sat down to hammer out how we make decisions, but we have a method, none the less. We’re actually a great team so we basically talk something out until we’re ready to move forward in the same direction. While I’m mostly responsible for Aidan’s medical and educational life, I talk through all the angles with Garreth. That...
This post is inspired by another great mom of children with special powers. Check out her link below. — 1 — So we received our first insurance denial for Aidan’s powerchair. They seem to believe he should just be pushed around by a caretaker instead of making waves in this world all by himself. I’m secretly hoping we get to go to a hearing and I can turn Aidan’s powerchair into a little steamroller. Aidan’s...
Update Week 12 by me: We had a great weekend at the hospital last weekend as a family—me and Garreth and his mom and Liam. We were finally able to take Aidan off his monitors, just walk him around a bit and sit in the waiting room which is full of natural light. Liam even asked to snuggle Aidan. He did a great job holding him and kissing him. This, of course, was a great...
This is a special shout out to the Yale nurses who asked, “How do you think Liam is doing as a sibling of a child with a disability?” We are really mindful are trying to carve out time with Liam. The truth is, Aidan requires a lot of care and there’s no way to hide that. However, he’s part of the family, and to Liam, this is what family looks like. Liam and I are...
Don’t cry him a river. Aidan had already eaten his breakfast (eggs, bleh) but clearly wanted mine (french toast, yum!) Bouns points for his communication skills, tracking skills, and balancing skills. And super bonus points to Daddy for making us breakfast in bed. Now if I could just eat in peace….MY Breakfast Sorry for the technical difficulty. You have to click on the link because it’s too early in the morning for me to figure...
Let’s start with the low. Aidan has a pattern of learning. With lots of repetition he’ll pick up a new skill- eating, walking, turning pages of a book, making choices etc. Then, for no apparent reason he drops it like a hot potato. “I’m all done with that for the time being.” Then when a random amount of time has passed, again for no apparent reason, he picks up the skill again. That’s where we...
Got a synaptic story you'd love to tell? I'd love to help you share it right here on FamilySynapse.com as a guest writer.
