Eli went in to the hospital yesterday for a routine EEG, just over 4 months since his surgery. He has been doing really well. We haven’t seen any seizures at home so we were really hopeful that we would get good news. He HATED being in the hospital. Now that he is so much more aware of his environment, it was so much harder to put him through it this time. He screamed the whole time they were placing his EEG leads and was just sedated and mopey the whole time we were there. But it was absolutely worth it to hear that his EEG is looking great. Dr. Goyal said that his temporal lobe has normal activity and there were no epileptic discharges. At the time of his resection, there was a lot of concern about his temporal lobe and I am so happy that we made the right decision to leave it alone and see if it would calm down once the frontal lobe lesion was gone. We are going to stay on the Keppra (anti-seizure medication) for at least a year, and we have to go back in another 6 months for another follow up EEG. We are so relieved that his EEG has progressed so well.
It has also been determined that he DOES NOT have Tuberous Sclerosis (YAY!). They did genetic testing on his cortical tuber, and it was negative. That along with the fact that he only had 1 tuber and absolutely no other findings suggestive of tuberous sclerosis means that he likely doesn’t have it. The geneticist did not feel we need to do anymore testing or follow up!
As far as his development, that is going well too. He has been getting weekly outpatient speech and occupational therapy over the summer and he has made such good progress. He still isn’t talking much, but his interaction, play and communication is worlds better than it was. Some of the new things he is doing over the past couple of months include: stacking blocks, putting things in and out of containers, beading string, playing with cars appropriately, attempting puzzles, putting hats and glasses on, scribbling with crayons and markers and playing ball back and forth. He will now say “go” if he wants you to do something, “stop it” sometimes and will take our hands and pull us to what he wants. We have heard the words bubble, ball, balloon, door, and cat at certain times but nothing consistent yet. He will be starting the Bell Center here in Birmingham soon and will get 2 hours of therapy 4 days a week for the next year. I can’t wait to see how much progress he can make. Sometimes it is difficulty not knowing what the future holds for him, but we try to focus on all the progress he has make in just a couple of months. Here he is today having a little post-hospital celebratory swim 🙂