Friday, September 07, 2012

fourth grade.

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

Special Olympics

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

bye bye back brace!

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

new look & countdown begins...

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!!!

Thursday, October 28, 2010

Field Trip Fall 2010

We had a fun windy cold day at Orr Family Farm in OKC today. Izzy held a rabbit, pet a chicken and a pig! She rode on a hay ride to a pumpkin patch.... It was the 2nd grade trip, the little girl in the pic above is Grace, Izzy's friend. She has been so sweet to Izzy for years and has been in her classroom for three years (Grace told me this today). She prays for Izzy nightly and is one of a handful of girls who really love Izzy. Melanie, Izzy's teacher is holding Iz for the pic. Arionna and Nathaniel also went on the field trip. Tomorrow is another trip and then yet another in November!

Hips are healing... although allergies have been an issue this week.

Izzy got an award this week at school for meeting her AR goals (AR is a reading program).

In just two weeks I get to fly to Seattle to meet a group of mothers who have children who have nearly drowned. A few of these ladies have been such good friends for years! I am so excited!

Thursday, April 08, 2010

where we are now...

I took Iz to the surgeon for a x-ray check on her back yesterday. He said that her back is 20 degrees improved with the brace. He was satisfied with those results so for now there will be no adjustments... other than those made by izzy getting used to wearing it. She made some acknowlegement today with Camilla that she is "wiggling" out of it, turning it sideways. When it is crooked her para Michele takes it off. So far she hasn't complained too much while wearing it.

Our next step is to visit the doctor in May to do pre-surgery paperwork etc. It's hard to imagine that her surgery isn't much more than a month away!

She had a few sleepy days this week but thankfully "came back" to us today. She was vocal and had the spark back in her eye. Melanie sent her report card home today with a lovely note about her progress that I will post when a) I have it on hand, and b) I have time to type it all out.

I cannot say often enough how blessed we are with the teachers and therapists at school.

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Thursday, February 04, 2010

pediatric orthopedic surgeon appointment update.

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.

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