We spent Memorial Day in the hospital again getting a follow up EEG. If you remember, at the time they did Eli’s surgery, he still had a lot of abnormal spiking discharges coming from his temporal lobe. They wanted to monitor that to see if it would get better over time. And the good news is that his EEG looked sooooo much better!!!! He no longer has any epileptic activity in his brain and there is no more spiking in his temporal lobe. His temporal lobe does show some slowing so there is definitely some evolution going on. His doctor thinks that this is just resolution of damage from that area being stimulated for so long by the frontal lobe lesion. She thinks that it will eventually go back to normal, but we will have to monitor to see. This is really the best news we could have hoped for!
We are going to go home today and will get another 24hr EEG in 3 months. We meet with the geneticist tomorrow to see if she thinks he has Tuberous Sclerosis, so I will update with that information once we talk to her. I have a lot of questions for her, so I will fill you in once we get those answered.
Thanks again for all the love, support, positive thoughts and prayers. I really think my little man is on the mend and we are going to be able to put this all behind us soon. He still has a lot of work to do to make all the new connections in his brain and catch up, but I know that he can do it!
Being cooped up in this small hospital room with an overactive toddler is really torture, so we are so happy to be going home!!!!
Today is 3 weeks post surgery, and Eli continues to do amazing! He has healed so quickly, his incision is barely noticeable any more. And most importantly, he has not had any seizures. We are still taking that one day at a time, but 3 weeks without any is really such a huge blessing. He has made such huge strides in his development in just 3 short weeks. He never had any problems with his physical development and he is back to climbing everything and running all over the place. He seems much more steady now too since surgery. We were so concerned about him falling and hitting his head, but he hasn’t fallen at all while walking or running which was a multiple time a day thing before surgery. His only possible delays were in language and speech. He is doing and saying so many new things. These are all things he will do now that he didn’t before surgery: give high fives, wave bye-bye, say bye-bye to me when I leave in the morning, give kisses, really play with toys, throw a ball, follows our dogs around saying “woof-woof”, do the motions for “wheels on the bus”. He is also obsessed with TV. He never really paid much attention to it before. It is like he is seeing cartoons for the first time and is obsessed with them. He especially loves anything with dogs on it, he will giggle for 30 minutes straight watching paw patrol. It will be interesting to see what his speech therapist and occupational therapist think next week. He is also continuing to sleep through the night which is so great! Unfortunately he new wake up time is 5-5:30am, but we will take it now that we are getting 8 hours of sleep a night. I definitely heard “mama” once when he was trying to get my attention, but not consistent yet, but I know it is coming soon. Overall, just really more than we could have ever hoped for.
We did get the pathology back on his lesion that was removed. It came back consistent with a cortical tuber and not focal cortical dysplasia. Cortical tubers are usually seen in a genetic condition called Tuberous Sclerosis Complex (TSC). He had the genetic testing for this disease and it was negative, but I guess 10% of cases they don’t find the usual gene mutations. That disease usually also has skin findings, cysts or tumors on the kidneys, eye findings, and multiple lesions in the brain, none of which he has. So we don’t really know if he has TSC or not. If he does, it is probably a mosaic form and is on the mild end of the spectrum. Even if he did have it, most people with TSC have a normal life span and the majority have normal intelligence and lead normal lives. He just has to be monitored annually for development of any of the complications and those have to be dealt with if they occur. So not really what we wanted to hear, but things could really be so much worse.
We go back into the hospital on Memorial day for a 24hr EEG to see if his temporal lobe still have abnormal discharges and to see if there are any other parts of the brain that might be abnormal after the main seizure generator was removed. I will update once we see how things are looking then!
Helping Daddy work in the kitchen yesterday
Going to get his kidney ultrasound on Tuesday