Friday, September 07, 2012
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
Sunday, March 25, 2012
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!
Thursday, October 28, 2010
Thursday, April 08, 2010
Thursday, February 04, 2010
Matt and I took izzy to the pediatric orthopedic surgeon Wednesday morning. The primary reason for scheduling this appointment was reports of increasing hip pain and discomfort. The secondary reason was a discussion I had with her orthotist about doing some tendon release to get her feet where they need to be (flat.). It's no secret that Izzy's diagnosis is not something that doctors can "fix" or even know what to do about. The brain is a mystery. The body parts are not such a mystery, and Dr. Herndon felt very confident in the surgery he is suggesting as very necessary. I zoned out after I heard incisions and bone cutting so I'm not sure about the exact details but I do know that it is a long surgery requiring a partner to work on opposite hip at same time for six hours total. It will require a blood transfusion. She will be put in a cast from chest to toes for six weeks. Yesterday was very overwhelming. We live in a protective cocoon... believing Izzy will get better... not seeing her through physical eyes but with our spiritual eyes. Listening to a doctor make proclamations about her condition is and always has been disheartening. Don't misunderstand, our God is bigger than those words... but we are human and words hurt. These particular words seemed to hurt a little too much yesterday.
I continue to stand on the scriptures of promise that are tabbed above. I am so thankful for family and for friends who are supportive and encouraging at times like this when we face uncertainty, and yet know where all certainty comes from. Sounds like a double existance, and honestly sometimes feels like one. I think that is just another way the enemy inhabits our thoughts and tries to cause our faith to decrease. I was especially thankful for Matt yesterday. I remembered how good we are as a team yesterday. The reason I think we stayed sane (or partially sane :) ) through Izzy's accident and hospital stay. He is strong where I am weak. I'd like to think visa-versa as well.
We could sure use prayers (of faith) right now. Our church is having a 24 hour prayer vigil for Iz. I keep thinking someone is praying for her right now. What a comfort.
I have an appointment Monday for her to see the hospital orthotist to have a brace made for her back to try to keep her back straight(er) while sitting up. The next step will be an appt. with the orthopedic surgeon for xrays again to make sure the brace is effective.