Monday, March 11, 2013

Update from Erika (Omi) from February 2013

Wow! It’s been three months since last real update. Sorry! Life just moves along at such a rapid pace and we don’t often stop to take stock. Kristina has been posting little updates on Amelia’s facebook page, but of course not all of you see those.

Amelia’s hearing and comprehension is progressing, but at a very slow pace. She gets speech therapy several times a week, some at school and some at Rady Childrens Hospital. She has had a number of colds this winter (the preschool kids just seem to pass those germs around) and that interferes with her school attendance and with learning. Her vocalization is better, but still very limited. Her cleft lip and palate probably have something to do with that. It’s so cute to see her try to pucker her lips to make an “ooo” sound. And she is now turning much more often when we call her name. Amelia makes a lot of noises, but we have to work very hard to make her produce the sounds we want and it does get frustrating. But last week there was a little milestone! Kristina and DJ were observing a speech therapy session when Amelia suddenly turned to Kristina and said “mama”. Yipee! That was the first time she said it without lots of prompting.

In January Amelia had another mapping session at the House Ear Institute in. Getting the right settings for her to access certain sounds seems to be a very tricky business and it’s a matter of trial and error to find the right program. There is not a lot of data to learn from since there are so few children with this device.

Amelia suddenly got a high fever and a rash on a Saturday evening a few weeks ago and Kristina had to take her to the emergency room. I met her there and we spent almost five miserable hours being shuffled around the hospital with a very anxious little girl. She ended up having scarlet fever (strep with rash) and we had to start her on a course of antibiotics. Amelia is still terrified of hospitals and I got to experience how hard it must have been to go through all the procedures she had to endure in Italy. Being a parent of a child with lots of medical problems is definitely not easy!  At the same time, she stopped responding to sounds (even loud environmental sounds that she always responds to) and we were having trouble deciding if it was because she was sick or if the processor was not working properly.  Her amazing team at Med-El and House were able to get a new processor with her programs already loaded on it to us very quickly and she is back to her normal hearing levels. Yay!

Our family participated in the Mitchell Thorp Walk/Run again this year. This wonderful foundation helped us with our fund raising last year and we just wanted "pay it forward" for some other deserving children with dire medical needs and overwhelming medical costs. It was a beautiful day and lots of money was raised for this worthy effort.

We have decided that Amelia needs both sign and oral language. At school she gets only auditory-oral, but at home we sign and talk. Unfortunately, no schools in the area have a total communication program which is what we feel Amelia needs at this time so we are working with the school district to create a program that will work for her.   A new sign language class for parents and caregivers has started recently and we are beginning to learn how to read little stories with her. She needs more than just pictures and single words and we need to get more creative to keep that busy little brain challenged. Of course this challenges our brains as well, but that may be a good thing!

 I’ll end with a little story to make you chuckle. Amelia was eating cereal and was looking at the colorful box of Lucky Charms on the table. She had already commented on the rainbow and the elf (leprechaun) when she pointed to the piece of masking tape I had used to keep the box closed. I couldn’t remember the sign for tape, so I signed “band-aid”. She looked concerned and asked if the box got “hurt”?

Love and blessings!


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