Koby and I are stunned. Blown away. Uplifted. Encouraged.
Y’all are awesome humans. So many friends and family have come together to support us in so many ways; we just auctioned off a donated painting for $500, a friend set up a YouCaring site that has (as of this post) raised $11,000 for Hayes, another friend is still selling Scentsy products to raise money for Hayes, and your HayesBear t-shirts should be in the mail soon thanks to our sister.
I can’t write enough thank-you notes (or get them in the mail fast enough, but that’s another story). I can’t post enough to capture my gratitude. Thank you for the meals, thank you for the cards, thank you for your time and energy. THANK YOU.
Hayes’ 2nd birthday is rapidly approaching: November 2. November is also Epilepsy Awareness Month.
We have so much to be grateful for.
During this upcoming week, Hayes will have a four-hour EEG to see how well his current dosage of Onfi is controlling the seizures, but we already know that he is still having them. There are a few options as to what we pursue next. One is to add the anti-seizure medication, Topamax, to the current regimen. We may begin a special, intense diet called the ‘ketogenic diet’. Yet another is to begin ACTH injections. We are hesitant to do this because of the intense side effects (ACTH is a hormone/steroid – Hayes was utterly miserable on the previous steroid, and this will only be more intense) but it may be our best option.
To answer the question, “Isn’t it ok if he just has a few seizures? I know plenty of people whose epilepsy is “controlled”, but they still have the occasional seizure.” Short answer: no. IS (Infantile Spasms) must be stopped completely, because if not, they can stagnate development and evolve into lifelong, extremely limiting epileptic syndromes. We want ’em 100% GONE!!! 🙂
Hayes will also be having a spinal tap soon to investigate the possibility of any metabolic conditions, which, if found, might be treatable. We’ve (as in Koby, myself, and Hayes) also been approved for a full exome study to further our quest in genetic testing.
We love, love, love you all, and thank you for loving our family.