Summer vacation begins

Today is Jacob’s last day of school. I think he adjusted very well to his new school and made some friends. He went back and forth all year saying “I don’t like school” and “school is fun”. He certainly learned how to work the system! He loved being in the nurses office and often faked that his tummy hurt so he could go there. Silly boy! He even made it look like he did not feel good last Fri. when they were putting him on the bus. The bus driver said he looked like he was going to throw up (although a surgery he had makes it so he can’t) so the nurse called me to come pick him up. That of course was Nick’s last day of school so I had the other 3 with me to pick him up. The teacher knew I had the others so she said I could pick him up in the classroom outside that door. As soon as the teacher opened the door, I knew he was not sick. In fact, he snickered at me! I asked if he napped and she said no so we both knew he was not actually sick because he would have done nothing but sleep. We will see what he does next year! Hard to tell sometimes if he actually does hurt and I would hate to dismiss the fact that he really does need to be home.

I have a folder and a wall of “work” and some art that I can look back and see how much he changed over the year. Although he still can’t identify all the letters of the alphabet, he did learn how to write some other letters. Writing his name improved but toward the end of the year, his processing got mixed up and now often gets it wrong. His ability to color improved a great deal as well. They worked hard on getting him to be able to work for longer periods of time and completing more of the pictures. His teacher said that “writing” was his favorite thing to do. I am so thankful that he actually made friends this year and became more social than he was before.

We pray he will have a good summer. Never know what the heat will do to him since it takes such a toll on his body. We are going to attend the Batten Disease conference in Chicago at the end of July. Other than that, most of our summer will be home. This will be his first summer with our CLS worker so we can adjust the times and go out and do some day activities!

Thank you for all your prayers and support in helping us with awareness. Thanks to Facebook, so many more are aware of what this disease is. I am connected to nearly 200 Batten parents (including a couple researchers, grandparents and siblings) from several countries and it was great to see so many pass along links, share stories, fundraisers and continue to support each other. Can’t imagine going through this without them. God is good!