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February 1, 2006
By Margot | February 1, 2006
Andy had a very successful third birthday. He had a big party at MyGym on Saturday and “Mikey” the ninja turtle came which was the highlight of Andy’s birthday. He kept hugging him and wanted to be within two feet of him at all times. Mikey wasn’t wearing his nunchakus (I had to look up the spelling of that if anyone is wondering) and Andy kept asking him, “Where are your nanchakus?” Now when people ask him how his birthday went he tells them that Mikey came to his party. Sunday was his actual birthday and we gave him a two wheel bike and had a little party with Maureen. He is more enthralled with the fact that the bike comes with a little snack pack and a water bottle than the actual bike itself. Earlier in the day we went over to Deb’s to celebrate Chinese New Year. It’s the year of the dog which means, according to my mom, that it’s going to be my year since I was born in the year of the dog. I just want it be Sam and Andy’s year. Monday we brought cupcakes to school for Andy’s birthday and he said, “Is it my birthday again?” I think he was suffering from a little bit of birthday burnout. He’s at preschool now and we are still struggling with drop off. He absolutely doesn’t want to go. He’s a little happier when I pick him up these days but I think he’d still rather be home.
Sammy is sick with a bad cough and cold complete with fevers and all. I hate the fevers even though I know they are associated with the cold, they still scare me. He started feeling badly Monday morning and had been pretty much knocked out for the past couple of days. He slept in until ten this morning.
Latest in our hearing aid saga.
Sammy has still been complaining about his hearing aids even after we fixed them in January. He’s not really able to wear them all day and he always takes out the blue one and says it’s not working. I had asked the audiologist at Children’s to check it and told her that he says it stops working a lot. She came back with it and said it was fine that she’d tested it. Well, I finally called a new audiologist that Sammy’s home hearing teacher recommended to me and we went to see her on Monday. She reviewed all of his audiograms and hooked his hearing aids up the computer and then told me the following:
“These hearing aids are completely wrong for Sam’s type of hearing loss, they are programmed to an uncomfortable/painful level and the blue one is clearly broken.”
She went on to explain with Sam’s hearing loss he needs a hearing aid that has at least ten frequency bands and his current aids only have two bands so that even if we were to reprogram them, they wouldn’t really help him all that much once he started school. She said when you get the hearing aids right, the kids love them and want to wear them. Also, since Sam has relatively good low frequency hearing, his hearing molds should have big vents in them to let in the low frequency sounds. So, we are ordering brand new hearing aids that are much more sophisticated than his current ones. We had 90 days to return the aids that he had and were on day 100. We were afraid that we weren’t going to be able to get our money back but Neil met with the director of the audiology department at Children’s yesterday and gave her a list of things wrong with the current hearing aids that the new audiologist gave us and told her how many times we’ve come back to get them fixed and she was very nice. She called yesterday to say that they will refund the total cost of the hearing aids and the warranty we purchased so we can put that towards the new hearing aids. So, it’s all going to work out. The new audiologist is fantastic. She really knows her stuff and is familiar with every different type of hearing loss and I’m so happy we found her.
We are getting ready to put Sammy in school. February 21st is the big day. I think the hardest thing is going to be getting up so early. Sammy’s school starts at 7:45. For a boy who is used to getting up at 8:30 or 9:00am this is going to be a struggle. I’m going to have to get the kids in bed at a decent hour. Ack. His hearing teacher, Diane, is going to do a presentation to his class about hearing aids, let them listen to them and try them on and explain to them all about why he needs them.
We are also looking forward to Sammy’s Make a Wish trip to Australia. The Make-a-Wish people have been fantastic and are setting up some really great things for Sam while we’re there. We’re going on March 25th through April 7th.
There is a little girl who needs prayers, good thoughts, good karma and whatever else you can send her way. Her name is Christi Thomas and after three years of fighting this disease it is progressing despite treatment. Neil met her and her amazing family at the neuroblastoma conference in Chicago. Her blog site is: http://christi.thomas.blogspot.com
Topics: Progress Reports | Comments Off on February 1, 2006
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