I have been meaning to update this blog for a while. Our little man has been doing sooooo well!
We are now 22 months post surgery and 22 months seizure free. I can’t believe it. He had his 2 year follow up EEG today. We have reached the point where he only needed a quick 30 minute outpatient EEG instead of the 24 hour inpatient ones. He did so well. He let them attach the leads without us there and slept through most of it. And the best news is that it continues to look normal. His neurologist’s exact words were that it looked “beautiful”! We have come so far from the continuous, generalized spiking and epileptic discharges that were there 22 months ago. Now, unless we see any seizure activity, we don’t have to do anymore routine EEGs…eek!! We are also going to start a slow wean of his one seizure medication, Keppra. This is so exciting and scary all at the same time! I don’t think I ever thought we would have this great of an outcome, and I feel so thankful that we had such wonderful doctors and that we found the courage to put him through brain surgery. As difficult as it was, it was very much the right decision. Even with the developmental regression that we saw after his surgery, I am convinced that stopping seizures and getting him back to normal brain activity will pay off in the future.
As far as his development goes, we are starting to see some real progress. When I last posted almost a year ago, he was basically non-verbal, and we were excited because he was starting to imitate words and sounds he was hearing. He has been in a preschool program designed for autistic kids since August, and after an initial adjustment period, he is really thriving there. Now he has around 150 words that he uses spontaneously. He is starting to put 2-word phrases together. Whenever he wants something, he always uses a word to ask for it. Today I asked him if he wanted to go eat and he spontaneously said “yes, pizza!”. He is starting to answer our questions with “yes” and “no”. Cognitively, he is really smart. He knows all his letters, upper and lower case, shapes, and colors. We also suspect that he is reading some words. He still struggles socially though. He still has pretty minimal interaction with his peers, though he is starting to show more interest in Evie (he calls her “beebee”). His eye contact with us and his teachers and therapists is so much better, but he still avoids eye contact with strangers. He now loves finding things that get a reaction out of us, like pretending to fall down or drop his toys. He will do this over and over if we will laugh at him. His play with toys improves all the time, though he still prefers iphones and tablets to actual toys. He also struggles with motor imitation, but he just figured out jumping with 2 feet off the ground. He is so proud of this skill. So while he still has a long way to go, we are so proud of him because he works so hard and is making so much progress.
We could not be more thankful for where we are today. Eli has been blessed by loving family and friends, wonderful doctors and amazing teachers and therapists. We learn everyday not to underestimate this kid, and hope beyond hope that his wonderful progress continues. Please pray that his medication wean goes well without any return of seizures.
Some pics of his growth over the last year:
Fun summer beach vacation, riding go-karts and hunting crabs on the beach.
Turning 3 in October 2015!
Skeleton for Halloween. He actuall went up to some doors and said “trick or treat” with a lot of prompting.
Bonding with “Beebee” on the kindle. His kindle is like his security blanket, he sometimes falls asleep with it.
Hanging out with daddy at Mardi Gras 2016 and picking oranges at Mawmaw’s.
So proud of himself that he learned to jump!