It's been a while since my last Emmett update. And while I'm trying to get back into the swing of things blog/work wise (it felt pretty great to get to do a lighthearted What I'm Wearing Now post yesterday), the reality is that Emmett's illness is still the biggest part of our daily life right now - so it would feel a little insincere not to continue to share what's happening with him here now and then. We actually had a pretty substantial scare that required hospitalization last week, but for the most part, he is doing so, so great. I can't put into words how grateful I am for that.
I'll start with the awesome things that are happening. Emmett is now in the final stages of his 8+ week medication run (6 weeks down, 2.5 to go), and has gone from twice daily injections of .4 ml to every other day injections of .3 ml (which goes down to .2 this week!). So far (fingers crossed so hard!) he has not had any more seizures. We know that there is a 50% chance of them returning after the wean ends, but we are staying positive. He is such a happy baby, and he is continuing to progress developmentally, so for right now, we are remaining cautiously optimistic The type of epilepsy he has causes developmental delay in the vast majority of cases, but so far, we haven't seen that with him. Early Intervention assessed him and despite lack of any noticeable delay, will continue to come out and work with him once a month. They are so wonderful and Emmett loves his therapist! We did receive some semi-concerning results from some bloodwork that showed a possible Vitamin B12 deficiency or other metabolic issue, so I took 10 days of a high dose of B12, as directed by his neurologist, to transfer to him via breastmilk, and he will be retested next month. But really, he is doing so great you guys. I close my eyes and mentally thank the universe for this multiple times a day.
And now I'll get into the hospitalization and profoundly intense scare we had last week. (I confess that this is mostly copied from an update I did on Facebook, but there's no sense in repeating it with different wording.) I'd noticed a mass on the muscle on his back early in the week. His neurologist examined it last Tuesday and ordered an MRI for Friday morning to look into what was diagnosed as a "mass of the spinal cord." Thursday morning though, I noticed that it had increased in size. I called his neurologist and emailed some pictures. We were advised to go to the ER. Apparently Neuroblastoma, a childhood cancer, can present itself as a mass in that area along with seizures like Emmett has had - and our neuro had patients in the past where this had occurred. I packed a bag and left Essley, who woke up with a 103 degree fever by the way, with Robbie's mom who happened to be in town, and Emmett and I drove to the hospital.
In the ER, Emmett was given an ultrasound. He was also given a dose of a cancer treating steroid used for Neuroblastoma, which was pretty terrifying. He was then admitted with an MRI scheduled for first thing in the morning. The ultrasound came back normal, which was actually potentially "bad" because it meant that because nothing superficial was found, there was a greater chance for a potential spinal tumor deep underneath. Robbie flew home from the road and met us at the hospital, and we spent the night researching this type of cancer and feeling indescribably stressed.
This morning at 7:30 Emmett was put under general anesthesia and underwent a 2 hour MRI. He was brought back to the room at 9:45 and we spent the day waiting for the results. At 3 PM, the doctor finally came in and told us he did NOT have Neuroblastoma. I stood there shaking and weeping uncontrollably, hugging the nurse so hard I'm surprised she didn't fall over. What they found was basically an asymmetrical muscle, and although we were told that they don't know exactly why, or if it is related to his seizures, or what it means for his future, the main thing was that it isn't cancer. He has a follow up appointment, and we will keep our eye on it in the meantime. We drove home, gave Essley a huge hug, gave Emmett his regular injection of seizure medication, and here we are. Happy and lucky.
The past 6 weeks have been a massive challenge on so many levels, but they have also brought incredible life lessons for which I can't help but be grateful. Every one of us has our own problems, our own challenges, our own struggles. None are any more valid or real than others. But I will say that what we've been going through with Emmett has taught me how to shrug off day to day stresses, to complain less, to feel extreme gratitude for the most mundane everyday moments, and to realize that what I have is more than enough. Go hug your kids or your partner or your parent or your pet, like right now, and think about the small things in your life that make you so, so lucky. Every second of normal in each of our lives is something pretty special that I personally will never again take for granted. And remember that there are no guarantees and anything can change in an instant. Maybe that's cliche and you've heard it before but our family is living it right now and I can tell you that it's true.
If all goes as we hope, the next update I post will be to tell you that Emmett is officially off the seizure medication, doing great, and still seizure free. Any good vibes you want to send his way until then are so greatly appreciated!
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