Just like the 6 week follow ups, we were extremely nervous that the bad activity in his brain might have returned, although we were hopeful that this was not the case. We felt that the tremendous progress we have seen in Will must be a testament to the good activity going on in his brain at this time. Will helped calm our nerves a bit during the drive out, as he was sitting in his carseat calling out the colors of all of the cars that drove past. "I see red, Mommy! I see blue, Daddy!"
Coming out of sedation after the MRI |
Will's doctors and nurses were all very satisfied and happy with what they saw. The nurse even got tears in her eyes as Will showed off his jumping skills in the exam room. Of course, the most important part is that the EEG showed ZERO signs of seizure activity or spiking - nothing but completely normal brain activity. The first 6 months following surgery is one of the most critical periods for a relapse, and Will has made it through! His MRI looked great as well, no abnormal fluid pockets, no swelling - just a big hunk of missing brain. Even though we weren't surprised, it was a bit hard to look at the images showing a big gaping hole in our Buster Beans' head where brain would normally be.
We talked all about all of the things that Will is now able to do with Dr. C, and while he was impressed, he wasn't surprised. He said that Will is a classic example of what you can accomplish when you remove "bad cortex". We sat and talked with him for over 30 minutes, and in the world of pediatric epilepsy, to have a world-renowned neurologist give you half an hour of his time just to pick his brain is a tremendous treat.
As we drove home, we reflected on what a long and painful journey this has been, and although we have passed through periods of darkness and despair, we feel like we have finally made it through to the other side. While we know that there are no guarantees, right now we are among the very few who are lucky enough to have the joy of watching their child recover from this awful and devastating disease. Although we don't know exactly what the future holds, we are mindful that there was a time just 6 months ago when we worried that Will would never be able to say "Mommy" or "Daddy." Now, not only do we hear those magical words all day long, we have hope that he will be able to live independently someday, and hopefully much more!
Will being silly with a napkin |
Will is still talking like a little parrot. He repeats many of the things we say, to the point that we need to be a little bit careful. He is piecing sentences together and forming his own thoughts, which is an awesome thing to witness, and hopefully it will continue.
Our next follow up appointment will be in September, at which time they will do another MRI and an overnight EEG in the hospital. For now, our little miracle child will continue down the path that he has been redirected to travel, and we will continue to thank God for answered prayers.