What would you do?
If you found yourself in a position to make a life changing decision that could improve the future for your child but with risks would you go with it?
If you were in a position to improve a medical issue with your child but chose not to do so for fear of what he would go through or what issues could arise from the procedure would that be neglectful? How would that make you feel when you watch your child struggle throughout his life knowing you did not take the chance to help him while the door was open?
Cully has regressed just since his seizures ended. He is doing fantastic, is a charmer, shows love to us all and keeps making great progress. But he is not where he should be. In fact Cully over 6 months ago was at a higher developmental stage than he is at now.
Autism aside there is something else going on here. Cully is on his third week of ABA therapy and he is making amazing progress. But with all of that, Cully is at a 12 to 18 month level of speech and 18 to 24 month level cognitively.
Dr Chugani has reviewed Cullys tests and came to this conclusion:
"Both his PET and EEG show a focus in the right frontal-temporal region. At least one of his video-EEGs showed frequent spiking from that same area. This can cause delayed development and even regression. I think we should take another look at him to see if surgery is an option."
So we are back to the brain surgery issue again.
I truly believe that Cully is progressing at a great rate now with his ABA therapy. I am not completely convinced that he will not snap out of the delay in due time. I know for a fact he has areas where he is gifted and ahead of the game. I know the surgery will not take away the autism too.
So why is this such a dilemma ??
We are trying to beat the clock. There is a window for this surgery.
*Plasticity*
Removing a part of Cullys brain sounds horrible but if done early enough then the rest of the brain tends to pick up the work of the part removed. This is called plasticity. And if we miss this window then the danger increases more and more.
The ideal situation would be to relax and wait to see how Cully does with the ABA. Give it a little time and watch him close.... But that is not an option. Just how much time we have we do not know just yet. We have to decide what to do. We have to be aggressive and gather all our facts and information and try to make the right choice.
We are waiting on Cullys team at Detroit Childrens to contact us with a time for an all day EEG and a PET scan. After this is done we will have a meeting with Dr Chugani and.........
Life is hard...
