With Tuberous Sclerosis Complex there is usually one tumor in the brain that will seek out the other tumors and cause them to intensify the seizure activity, and the longer that one is allowed to continue, the less chance Nina would ever have at being seizure free as she grows and also her chances of developing mentally and behaviorally become less and less. So all these tests were to try and find that trouble tumor.
It was a loooong week but Nina's body did all the things it needed to do to help the doctors gather more info. We started her on a new drug on Tuesday night and I will say the child has not been the same since!!! We are still seeing seizures, but whenever we change up meds it takes a while till everything balances out and we know if everything is at the right dose. But the girl that used to laze around the house because she was so tired, and be super irritable in the morning and fight every meal, has now woken up happy and running and laughing and eating! She has become a little more difficult at times and definitely testing her boundaries, but that is what every NORMAL child does, so I'm happy to reteach her. :) We are basically starting over.
The way the TSC clinic works is now that they have done all the tests, in a few weeks they will meet as a team to go over all of Nina's tests and get ideas of what they think would be the best course of action is. Whether it is to keep trying just the medicine she is on, add a new one or start looking at brain surgery to remove the trouble tumor.
We also met with a neuro-psychologist while we were in the hospital. She did not do a huge evaluation, but based on what we told her and what she saw of Nina she told us she definitely thinks she is on the autism spectrum. We were given a script for occupational therapy, speech therapy and behavior therapy.
Time will tell what the future holds for our girl. She for sure is a fighter but I am so happy we get to see the spark come alive in her!
We also were amazed at the chances we had to share our adoption story with doctors nurses and the food staff! ;) We had SUCH a great team of people around us at the hospital and did not meet one person who did not love on our Nina and help us out as much as possible!!!! I know nurses sometimes get the bum end of the deal as they have SO much to do and if not everything is met people can be hard on them but they all did AMAZING!!!!! THANK YOU!
Thank you all who prayed and left comments-they truly got me through the week!!!!
Love you all!
