It has been two weeks since Eli’s last seizure. I am finally starting to let out the breath I’ve been holding. We started weaning him off the ACTH last Friday. His dose was drastically reduced. He was at a high dose of 0.6ml and the first stage of weaning dropped him to 0.13ml. Now he’s at 0.06ml and will go down to 0.04ml. He will be done with the weaning process next Friday. He is scheduled for a follow up EEG the following Tuesday (May 14). He never did have an EEG before starting the wean. The neurologist was confident that the EEG would look good while on the ACTH since he hadn’t had a seizure in over a week. The less EEG’s we have to do, the happier Eli will be. It’s not a fun process for him (or mommy and daddy). Thank goodness he’s a baby. This whole process would be next to impossible with our toddler.
I am also ecstatic to report that Eli’s personality is back to the happy, carefree baby he was before the seizures started. He smiles and plays and laughs and babbles. It is so wonderful to see our boy shinning brightly once again!
This past week he turned 6 months old.
I am not sure how this has happened already. At times, it seems as though the days drag on forever (usually during a hospital stay) and other times the days, weeks, and evens months, go by at lightening speed. Crazy to think all that he’s been through in 6 short months. I’m hoping that all of the “icky stuff” (to quote my almost 3 year old) is behind us now, God willing.
Chuck and I celebrated our 6 year wedding anniversary this past weekend. Our lives are certainly different than what we had planned when we first said “I do” but I wouldn’t have it any other way. Life’s challenges seem less challenging and the triumphs are more triumphant with my best friend by my side. I love this quote (by Winnie the Pooh!) – it sums up my feelings the best: “If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you.”
Thank you for sharing in the love of our family, and most importantly, loving our little boy(s). ❤