Not so quick update

Hello, all! Lots to update on...

Ben and Stephanie are in the chamber right now. I am still unable to go in due to my ear problem. After a full course of steroids and an almost full course of antibiotics, my ear is still not right. I am going to finish the last few days of the antibiotic, then I'll be calling the doctor for a return visit. I think I need a tube in the darn thing. It ALWAYS feels like it has fluid in it. And, with the least little illness it gets very inflamed and no antibiotic helps. So, we'll see what happens. It is unfortunate that this is happening while we have the chamber, but wonderful Steph has helped us out so Ben hasn't missed many treatments.

Ben is still doing well at CHIP. He still cries for a few minutes at drop off...until he sees the door to the dreaded cart room is closed. Weird thing is that he now has a fascination with the thing and laughs and enjoys it while out on walks. He won't ride in it, but he walks behind it and thinks it is great. I don't get it...

Tommy (the little man I asked for prayer for) is doing better. They found a medication to stop the seizures, but they still don't know what is triggering them. So they will need to take a trip to Cleveland for assessment. Please continue to pray for him and his family. They are wonderful, sweet, warm people and we miss seeing Tommy's smiley face around CHIP. (Hopefully he will be back next week!)

Unfortunately, one of the original 12 children is no longer able to attend CHIP. :o( But, we have a new friend already! He is close to Ben's age and is such a cutey. His mom is very sweet as well (haven't met Dad or sis yet.) They do some of the biomedical stuff too and she has already been a wonderful resource of info for me!!

Ben has started listening/music therapy at CHIP. Patty (OT) started him on a specific program to help with self-modulation (self regulation...self calming...) When Ben gets the least bit out of sorts he whines or cries, kind of like an infant. The program Patty has put him on should help with that, as well as other sensory issues. She said she has already noticed improvement and has lent us the equipment to try at home over the weekend. It is very interesting. The music is very disorienting to me (Patty said it makes her dizzy.) But, Ben loves it and smiles when she puts it on him. I guess it is unpleasant to us because we don't need it...if that makes sense. Anyway, he wears headphones for just 2, 30 minute sessions per day. During that time we try to do sensorimotor activities with him. So, we'll see how that goes... (I'm wondering if his recent increase in verbalization is due to this...)

Well, I think that is about it for now. I have a lot to get accomplished while they are in the chamber, so I better get to it!

If you haven't seen it yet, there is a slide show below this post that I put up yesterday...scroll down if you wish. I will try to put together another of our trip to Irish Hills soon...

Hope everyone is well!!

Love,
Julie