Looking over this blog I quickly realized I haven't updated in some time. After Isabelle recovered from her spinal fusion surgery we rapidly went into graduation and then wedding mode. Izzy's brother Bailey graduated from High School in May and her older sister, Amanda, was married in August. Isabelle was pushed down the aisle by her very special friend, Nathaniel.
Isabelle has started fourth grade this year and so far the year is going great. She is feeling much better with her straight back and doing well in class. We had a meeting with assistive technology about what devices would help Isabelle to communicate with the world. We know that she knows what is happening in her environment, it is just hard to participate in an effective way. Switches are the first and most common way of using technology. The two ladies tried various switches with her and she pretended to sleep. My theory is that the first device the asked her to manipulate with a switch was a pink stuffed winged pig. Izzy gets really annoyed when people treat her like a baby and offer her toys suitable for a two year old. It is hard to see and believe that she is a bright ten year old girl held captive in a body that has such a hard time cooperating.
I have been really interested in trying eye recognition software. This uses a small screen and her pupils to focus on a choice. By using this type of device she wouldn't have to rely on the cooperation of her finger, hand or arm to make a choice, but could just look at her choice. This technology is a little difficult to get and it was suggested that if we want to try it we should begin using eye gaze for choices. The following morning I gave her the choice of two "dolls" she sleeps with. One is a groovy girl doll that happens to look just like her friend Nathaniel. The other is her giraffe that has different sounds (we use for sleeping and it was very soothing when she was in the hospital). So I asked her to look at the one she would like to take to school. She didn't seem to look at either, so I tried to explain she could choose whichever she wanted but simply had to look at it. She finally looked at the nathaniel doll. I moved it to the opposite side of her vision and said, "I think you want to take the nathaniel doll. If so look at it again." She did so I said, "ok you are telling me this is your choice." I got the yes hand. Love when she makes choices!
Matt wrote yes and no on note cards the next day and asked her questions while I was making her breakfast. I heard him ask, "Is your name Sally?; no?" Then several other questions until the last, "Do you want me to stop asking you questions? yes?" He enjoyed that conversation a little more than she did I think. Dads can be a little much for ten year old girls.
Brandy is Izzy's para at school. She spends the entire day with her and can tell me all about what has happened and what Isabelle has learned. They are doing a lot of harder math this year and Brandy is certain that Izzy is learning the concepts. They have her answer with her yes no hand. She is able to do her work and take her tests with this method. Izzy's teacher and paras are very patient.
I'm excited to be planning a trip to Seattle for the third year in a row. The near drowning tribe is a group of mom's who have children who have had a near drowning leaving them with an anoxic brain injury. This is a weekend we all really look forward to all year long. I would say I can't wait, but it's like Christmas... once it's there it is over so quickly. So I'm just enjoying the weeks leading up to the retreat. I am staying a little longer this year thanks to Izzy's sister, Emelia, who jumps in to feed her and Matt who insists I go and holds down the fort here. Isabelle will go to school three of those five days also.
Sunday, April 08, 2012
Izzy participated in the motor skills events at the special olympics last week.
Her friend Grace came to cheer her on!
She came home with two 1st place ribbons... the state event is in Stillwater in May.
Grace has been a good friend to Izzy for years and sadly is moving to Japan this July. She will really be missed! Grace told me that she reads Izzy's blog regularly and I told her I would post a picture of the two of them. She said that Isabelle is her best friend. Thank you Grace for loving Izzy and being such a good friend to her!
Sunday, March 25, 2012
When we were preparing Isabelle for her spinal fusion surgery we told her that once it was over she could throw the back braces in the garbage. The back brace was not her friend! She cried when it was on more than 30 minutes because it was very uncomfortable... so today was the day to throw it away! yay!
It is amazing that she has recovered enough to be heading back to school this week (half a day to start) and will go to special olympics next week! She is amazing!
Sunday, February 12, 2012
We are now in the "chute" as my surfing sister Tiffany put it... Friday, February 17, Izzy will have surgery. Spinal fusion from base of neck to tail bone. I am not looking forward to this day and have actually dreaded it for some time now. Izzy has been doing really great at school, learning so much, smiling, standing, riding her bike... and now I feel like this is a big PAUSE in her progress to fix her sweet little curvy back. I know that this ultimately will make her life easier because we spend so much time trying to make her comfortable using pillows etc. It also means more lying down to prevent further curving. She hates the tlso (back brace) and although she begins her day with it on, wearing it to school, she lets me know even before we get there that she wants it OFF. I don't blame her!
Thank you my sweet bloggy friend Judi for making Izzy's blog look fresh and cute!!!