finally we get another infusion

It has been a really long time since I posted anything. So were to start, In April Easton got his hearing aids. When they put them in he was so cute. He sat there singing and we then realized that he hadn't really been able to hear himself that well let alone the rest of us. He did really well with wearing them and now will wear them all day, occasionally we have to take them out early in the day just because they are bugging him. We have noticed a few changes one, that the t.v. isn't turned up so loud, and when we tell him to whisper he actually does it! I haven't noticed a whole lot of language improvement, some but not as much as I expected. Next month he will go to the audiologist and they will turn them up a little bit more. They left them on the lowest setting so they didn't overwhelm him. I guess we will see what happens when they turn them up. Easton missed a couple of his IT doses due to the removal of his port and allowing him to heal. We finally got one though, with an lp. We along with his Dr.s have decided that he will get them via lp's indefinetly. I don't know that even if they found a new device we would opt for one his poor back is so scarred up and I honestly don't think he would heal with another surgery. Plus he is complaining off and on about his side and mostly his back hurting where the incisions are. I don't know if any other patients have had issues with pain and Easton never complained until after this last removal. During the summer we are going to have an EMG which is a nerve conduction test to test for carpal tunnel I would bet that he needs surgery to relieve his hand pain. His hands seems to bother him quite a bit, so hopefully this will help him. And then during the month of July we will go back East for another infusion and more testing. I wish they could compress the time you have to be gone, as of now its 13 days away from home. I wish they could get it down to a week. Its really hard to be away from home for this length of time. Or an even better idea would be to do the testing at our local site still going back east every 6 months but only for a few days. In early June I'm running my second half marathon which I'm really excited for. Camille made the drill team again so she is booked solid with things for basically the rest of the year. Weston is just getting over a fractured foot and will be starting baseball games soon and Easton will also be starting tee ball games next week. Kaylee is going to be doing a musical theater class this summer so we are busy busy.