Friday, August 29, 2014

The Next Step

Today I took the next step in our journey.  To be honest, it was kind of hard.  I don't know why, it just was.  I made some phone calls and found a doctor that has had experience with kids and Tourette's Syndrome.  He is at the Mayo Clinic in Rochester.  He has requested that I write up a summary of our observations of Zeke and fax it to him.  He will read through it, determine what all he wants to do with Zeke and then set an appointment with us.  The first appointment will be an evaluation that will last about 2 hours.  I don't know right now what will happen after that.  I will spend the weekend trying to get that put together so I can fax it to him Tuesday and we can keep the ball rolling.

School has gone ok for Zeke.  He was very concerned the night before he went to school.  He was afraid if the kids at school found out he had Tourette's then they would not want to be his friend.  We told him that they would like him no matter what.  He has had several incidents when he was making noises or movements that he couldn't stop and kids had said something to him.  It made him feel bad but he got through it.  He also took it upon himself to tell some of the kids about Tourette's as best as he could and told them that he may have it.  Some of those kids have actually stood up and told other kids that he couldn't help what he was doing when they were giving him a bad time.  His evenings are kind of rough with lots of noises (although he usually keeps them quiet) and mouth movements.  He also gets very wound up in the evenings and has a hard time settling down.  He has a hard time sleeping a lot of nights so that gets to him sometimes too.

His teachers and the school counselor have done a wonderful job helping him, watching him, talking to him about his concerns and keeping me informed.  I am very grateful for all their help and support of him and of me.  I know he is in good, caring hands.  As I said before, if we are going to have to go through this, I am so glad that we are doing it here.  It really is the best place that Zeke could be right now. 

So for now, we wait for this next step to begin.  I hope and pray that the doctor will be able to help us understand Zeke and what he is experiencing and that we will be able to find a diagnosis for him and then move on from there.  Some days I think, oh, I was just making this up.  He's fine.  There is nothing going on with him.  It was just a weird day.  Then I listen to him quietly tic or see him sitting there with his mouth movements and reality comes back that I wasn't just imagining it.  It is hard because it is kind of an unknown thing. We don't know exactly what all his tics will be.  We don't know how severe or mild it will be.  We don't know exactly how it will affect him.  I don't understand it and I don't understand all that Zeke does right now.  I don't know what is a tic that he can't help, what may be just ADHD stuff or what is Zeke just being a funny little boy.  He doesn't really know either it seems. 

We take it one day at a time.  We are grateful for the calm, uneventful days and we work through the longer, frustrating days.  We are very grateful for all the prayers and thoughts that are sent our way.  Everything will be okay.

2 comments:

Melissa Moffat said...

He has one of the best moms out there for him. With prayer and a mom like you I am sure he will go far. It is hard to watch our kids struggle and know that they will for a long time. He is a strong little man and will do great. He is wise beyond his years with already telling friends and standing strong. Good luck.

Emma said...

Thank you Melissa!