This is a post I never imagined I’d have to write. Some of you may have already seen my update on Instagram yesterday. For the rest of you, here it is.
On Tuesday morning of this week, Emmett’s 7 month birthday, he was diagnosed with a rare, serious form of Epilepsy. The only symptom was an occasional random head nod he’d had on and off for a few days that we decided to have checked out by his pediatrician, just to be safe. Long story short, after an immediate trip to a pediatric neurologist and an EEG, we were given a diagnosis, and spent the rest of the week in the pediatric unit of Northwestern/CDH hospital.
The prognosis for this specific type of epilepsy is very poor for the vast majority of the cases – but most of the tests we’ve had done, along with the facts that Emmett is developmentally where he should be for his age and we caught it very early, are positive signs. They have also found no cause for this with Emmett (which is actually a good thing with this specific disease). His time in utero and life up to this point have been perfectly healthy.
We are now giving him twice daily injections at home of a powerful medicine that, while not without extreme side effects, will hopefully help end his seizures soon and thus give him a chance. How he reacts to the medication over the next couple of days is crucial in determining what the outcome will be.
Whatever your beliefs, please channel good energy, pray, manifest, meditate, focus on healing vibes for our little boy. I believe in the power of positive collective energy – I have seen it work. The more people sending love and light his way, the more people praying, and the more people envisioning a positive outcome, the better I believe his chances are. We are so grateful for the support and love of our friends (internet friends included) and family right now. We feel lucky to know so many kind, compassionate people who care about our family and our son. I am terrified. This is hell. But I believe. Just like I had a strong maternal instinct that told me something was wrong when it looked like absolutely nothing, I have a strong instinct telling me that Emmett is going to pull through this and be one of the exceptions.
For right now, Bubby and Bean will remain silent of regular posts while we make sense of this. My number one priority right now is to focus on Emmett and his sister. I also ask you to forgive me for not being the best communicator right now, and not in the head space to answer questions or to be able to handle much more than just good vibes. I will update as I can.
Thank you in advance for sending any love you can our way. Emmett is a fighter, and I believe in him with all my heart.