I’m embarrassed to say, life has been SO crazy, that I nearly forgot this blog existed. I tripped upon it when researching some things for Henry. I hope you are all doing well and that you are seeing progress with your kiddos and their speech. I would love to hear some updates in the comment section if you are still out there :)
Now for an update on Henry. It’s been so long that it’s hard to know where to start. I have been reading back on my old posts crying, remembering being exactly in that moment. I’m grateful I have this blog to look back on because with all of the chaos my memory is truly suffering.
Friends… life has been hard. Really, really hard. The heartbreaking decisions, finding hope and then losing it, along with the horrifying images of my son seizing and not breathing are burned in my brain and stay with me every day. I carry it with me and can’t seem to unload it, instead more gets piled on. I’m trying to stay afloat, be the best mom I can be, and magnify the fun and beautiful moments because there are lots of those too.
Since I’ve last posted, Henry’s epilepsy has worsened. It has been defined, then redefined many times. It has baffled the best doctors. We have tried 14 different medications, and currently he is taking one of the most risky and last line medications, Felbatol. We are at the end of the road with this drug as well and likely will soon be taking him off and chalking it up to another failure. I have fought for the legalization of medical marijuana in Connecticut, exposing my pain and our story to a room of politicians and strangers begging for their mercy and asking that they pass the bill. And it did finally pass! I was so filled with hope at that point. Henry was the first pediatric patient to use medical marijuana in the state. I thought, this is our answer. This is going to become the beginning of Henry’s success story and the start of healing his brain. After months of trying 4 different strains of CBD in various combinations, in addition to 2 popular strains available in Colorado the previous year, we were left crushed. We had to face the fact that CBD was causing us to use rescue meds more often. His seizures had not been reduced. We didn’t even see the cognitive benefits so many parents witness with their children. It was another door shut in our face. This one seemed to sting the most. We fought so hard for it. I do want to say I still strongly believe in cannabis for treating all kinds of disorders and diseases. I have seen it be successful and I hope someday it’s offered as a first line of treatment for epilepsy. It is hugely successful with many children and adults, but it just doesn’t work for everyone. I hated being in the latter category.
We also took the most extreme measures to try to help Henry. And we took almost two years and several opinions before finally agreeing to move forward. Henry had brain surgery, a temporal lobe resection, in May 2016. They removed his temporal lobe including the amygdala and hippocampus. This option was offered to us by Boston Children’s not as a cure for Henry, but a palliative option hoping to reduce his seizures by removing what they believed was the biggest trigger point of his most lengthy and frequent seizures. They made no guarantees since his seizures come from all over the brain, but before we went into the surgery, after analyzing carefully his seizures over the last year…almost of of his seizures seemed to come from this left temporal lobe. The MRI’s had shown also that this area had shrunk due to the constant onslaught of seizures. The neuropsych evaluations that he had on a regular basis demonstrated significant cognitive decline and impairment, and she believed this part of his brain was useless at this point and that removing it would not leave him with further cognitive or speech issues. In fact, the hope was that with seizures reduced that we would see improvements in these areas. We were terrified, but there was a sliver of hope that we could really improve Henry’s quality of life.
You may be able to take a guess at how this went, folks. Despite being told that the worse outcome of this surgery would be that things remained exactly the same, things got much worse. His seizures restarted a week after the surgery. They appeared to be from the same area of the brain that was removed and then new seizure types reared their ugly head. His number of seizures some months following were over double what they were prior to surgery! Then we found out there was a new lesion, that based on pre and post surgery MRI’s proved, happened during the surgery itself. Some sort of injury that the doctors wouldn’t name exactly, but was likely a stroke in his left thalamus, which is an area in the brain close to where they did the resection. The positives of the surgery is that he had no physical or cognitive deficits from the surgery. We are grateful for that, but if I could turn back the clock this surgery never would have happened. Henry, being the trooper that he is, made brain surgery look easy. His recovery was amazing. It was very difficult for us to experience and to watch, I just hope that he has no memory of this at all.
There is just too much information to share in one post. Forgive the length of this one. I hope some parents out there stumble across this blog and find it useful. I will write more detailed posts on individual topics coming up, including updates on his speech and apraxia. In the meantime, here is what my little man looks like now. Eight years old and growing too quickly!