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.

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.

a quilt.

Kate is a member of the ponds (parents of near drownings) group... she is not a parent of a near drowning, but is a quilt maker. She has a long waiting list for her special quilts. Isabelle has been on her list for years. At least two years ago Kate mentioned some of the patterns of material she had found and wanted to know if anyone on the waiting list was interested. She mentioned an olivia the pig pattern and I said I thought Iz would love that!

The Olivia the pig quilt arrived this week. Such a beautiful quilt full of so much handwork and love. The border around the edge says, "exercise is good, accessorizing is better." Isn't that cute? There are pigs with bows and different accessories on the quilt. It's a great size and I know Isabelle will enjoy it so much. We've had fun just looking at the different pigs on the quilt.

The quilt group is "Circle of Hope." Thank you Kate & Circle of Hope for such a wonderful quilt of love and... well... pigs :) !

a surprise

Today was Izzy’s day for ESY … which is Summer school. She has been missing Melanie (her favorite teacher)! Today Melanie came to surprise Izzy! She brought balloons… and one was ORANGE. Izzy grabbed the orange balloon when Melanie showed them to her. Word was that Iz did better with Karen and Camilla than she has all Summer. Melanie is a great motivator. Lots of exciting things to look forward to this school year including a new classroom of their very own that is bigger and can accommodate all the things needed to make school perfect! So great.

Thank you Melanie for coming to school today to surprise Izzy. She was so happy to see you! (so was I)

izzy's teachers...

I made the teachers and therapists t-shirts... they all wore them on her graduation day!

I'll be back later to post report card info for ms. smarty pants Isabelle :) !

zoo and orange...

Yesterday when I was picking up Isabelle from school, they were letting her choose the color of her new hand splints. I usually just order pink or purple when we get any type of splints or orthotics... anyway, with her new found ability to make choices using her left hand for no and right for yes... they were eliminating choices and had it narrowed down to three. Pink, neon green, and orange. I watched as they showed her each color several times and she chose orange! I couldn't believe it! Gram and her love of OSU has obviously had more affect on Iz than I had thought! So she'll be sporting fancy orange hand splints.


Today was the zoo field trip. After an early morning State Honor Society breakfast, me and Izzy headed to the zoo. We actually beat the school buses by almost an hour! I was happy to see a few old friends from church and then a couple of "girls" I graduated with not many years ago :) ... It was nice catching up and then we hit the zoo!

It was a very humid day. My hair is the biggest evidence of that!!!

Izzy and Emelia (Izzy's school para/mom's daughter) got airbrushed tatoos at the zoo. They chose butterflies.

We braved the stinky snake house! Here's Izzy checking out a tortoise!

The snakes were icky! But we looked at them all!

There were two things I didn't exactly enjoy about the timing of our zoo trip. 1. It was feeding time which meant there were a lot of animals gnawing on a lot of nasty bones and other things... and 2. Those things have to come out of those animals and the gorillas made quite a show of that. I will spare you the details, but lets just say some things should NEVER be eaten!

This is teacher appreciation week and me and Izzy sure do appreciate these two girls!!! Michele and Melanie are the most awesomest bestest para and teacher ever!!!

Here's Izzy and Michele's daughter Emily. They had fun zoo-ing together today!

This is what kept me and izzy hydrated! Our favorite drink!

izzy's great day.

Izzy had a great “blogworthy” day at school…

(here’s the note that came home with her today)

Special times in Isabelle’s Day

Melanie:

1. Ate lemon pudding in the cafeteria with kids and opened mouth wide!!!

2. Used yes/no response cards for lessons (and got them all right) for 30 minutes!

3. Sang all through music.

Margaret:

Told Margaret, “I want to go.” after Melanie left the room. Margaret said, “you can go when say Melanie” SO IZZY SAID (drum roll) elanie!!! Yes she got to go back to Melanie!

Michele:

Sat in Michele’s lap after a lot of hard work and smiled BIG!

A+ day - showed us how smart she is today - made Michele cry, (happy tears)!

Report Card

I thought I would share the details of Izzy's report card for this 9 weeks at school. She has been doing really great at school. We are so extremely blessed with the group of people who work with Izzy at school. They are the BEST!

Izzy's IEP goals page showed the following::::::::::::::::::
Goal#1
While in supported sitting or standing, Isabelle will initiate reaching for object or switch, 3/4 presented.
10/14/08 25%
1/6/09 40%
3/11/09 50%

Goal #2
In supported sitting or standing, Iz will maintain head/neck in neutral position for two minutes, 2/5 trials, while engaged in visual or academic activity.
10/14/08 10%
1/6/09 25%
3/11/09 50%

Comments:
Izzy has been doing great with head control activities in all positions. She has been able to hold a neutral position while prone over a wedge and without complaint!

Progress report
3.12.09

Izzy is a sweet young lady who always tries hard. She has shown much
improvement this school year. Since our last progress report Izzy has
shown an increase in her ability to answer yes/no questions using her yes/no
cards. She has shown us that if given 3-17 seconds to respond she will
wiggle the fingers on the hand that has the corresponding answer.

A definite improvement in her head control and eye gaze has been made this
semester. She holds her head straighter and holds her eye contact longer
when using the new CCTV machine in the classroom. Her attention span is
longer and she seems to really enjoy looking at the material presented on the
CCTV.

Izzy loves to ride the bike and do things that are physical. I have
watched her develop an increase in fine motor control. When I place items
in her hands she holds them for longer periods of time. She likes to draw
and color.

Izzy is holding her head up for longer periods of time while on her
stomach. She is becoming more vocal when she wants something. On the
occassion that her teacher says or does something silly she cuts her eyes over
and gives us "the look!"

Michelle and I look forward to seeing her everyday. She is a joy to
work with.

Melanie C.

Like I said, these are such great people who encourage Izzy to do her best and push herself daily. I am so thankful for them!

izzy rides the bike!

I got a call from Izzy's teacher, Melanie, right before arriving at school today. She told me my presence was requested in the hall to watch Izzy ride the bike! By the time I got there she was pooped, but she still pedaled! The video is of her bike ride, towards the end she starts pedaling by herself again.

kid walk

Here are a few pics of Iz in the kid walk today…

The first one is kinda funny because she was working to get her head out.

izzy's report card

Kindergarten Progress Report
January 8, 2009
Izzy is demonstrating improvement on a regular basis in several areas since our last progress report.
Izzy is using her eye gaze on a more consistent basis to choose activities and when making her preference known from a choice of two things. She is becoming more vocal both with her likes and dislikes!
In the general education classroom she sits very attentively during group time on the carpet and has started responding vocally when the other students are interacting with her.
Izzy’s new chair is allowing her to be more on the same physical level as her peers in the classroom. The students love to sit beside her or stand by her chair and help her with her work. Izzy shows she enjoys this as well by looking at them and trying to do what is asked.
In Physical Therapy Izzy is showing major improvements. She always pushes with her legs when asked to stand and seems to be developing more head control.
My goal for Izzy is that we continue to provide her with many opportunities to communicate her wants and needs to friends and teachers and give her many opportunities to communicate what she is learning. We will continue to try to make school fun, interesting, challenging and a place where she can make many good friends.
Izzy is precious and a delight to work with!
Melanie
I HEART Melanie. She always expects a lot from Isabelle and I give God the glory for each and every improvement, but expecting things from Isabelle is wonderful because she meets those expectations.
After school yesterday Melanie mentioned she had a good day with Camilla. When we got home Camilla had emailed this:
Annie:
Sorry I had to leave today before I got to talk to you. Izzy did a fantasticjob in P.T. today. Her standing looked incredible - feet flat on the floor (shehad her braces on), working really hard to keep her knees straight, keeping herhead up. I was really encouraged today and I am so excited for that Kidwalk tocome in. Izzy seemed pleased, as well, and smiled several times. It was a greatday. I told her she brought joy to my heart!!! Hope you all have a greatweekend. Camilla
I ♥ Camilla! She has always pushed Isabelle with love!

news...

We got word from Asbury that the "kid walk" is finally all ready to be delivered! It is amazing when you go through the steps/hoops for something like this and finally get it! It is such a happy "finally" moment! We first tried this piece of equipment out in June. The pic is from that first trial of the kid walk. It is pretty new and we were all excited about how she looked in it and had great hopes for her in it. After a trip to the orthotist in November we began working on getting her feet in a flat position so that she wouldn't be working against them. Gary the orthotist made special stretching foot splints with springs that allowed her to push against them, but when she sleeps they automatically pull on her feet constantly. She has made such great gains over the last couple of months wearing the splints mostly at night. We tell her that she is getting her feet ready for the kid walk and she really seems motivated to tolerate the splints. We also got the swash in November and it has made a world of difference in her hips. I wish we'd had this all along!

They will deliver the kid walk Wednesday to school. I can't wait to get her upright more and see her have an opportunity to move. All she has to do is simply lean at first and the walker will roll in any direction. I am hoping that she will be excited about moving herself.

Isabelle had a good Christmas, she had a little cold but overall seemed to enjoy the holidays more this year than in previous years.

AFO measurements... left 18, right 8! The plan is to pick up the soft body cast (removeable and for positioning) in one week, revisit in two weeks for adjustments and at that time make molds for the new standing/walking afos and order the little shoes!!! We are so close!

God is good. All the time.

Happy New Year!

CHRISTMAS

results...

AFO measurement for today...
left 20 degrees
right 10 degrees!!!

AFO results...

Izzy with Gram & Emelia

I have been recording the angles of izzy's ankles each week since we got her new AFOs.  

When we started the left foot was 45 degrees and the right was 25 degrees

After the first two weeks it was 40  and 20. (measured by orthotist)

November 24 it was 32 & 18.

Today it is 28 and 12!!!  When we get within 10 degrees of our goal (90 degrees or normal flat foot) we will order the standing AFOs and shoes!

Our goal (set by orthotist) was to get 2-3 degrees per week!  She has exceeded those goals.  

We should be getting the KIDWALK any day now.  I pray that she is inspired to move when she gets in it and that her feet are stretched enough to stand comfortably.  Well, I really pray that she'll take off walking (Mark 11:24 ... 2 Corinthians 5:7).

swash

Here is Izzy with the orthotist, in her new swash!

Izzy was little red riding hood for Halloween.

Izzy is doing great in the swash! She is already looser in the pelvic area and hips. Yesterday Camilla said that she sat Izzy on the bolster and told her to stand up to the count of 10. I'm sure Camilla was holding her hands. So she stood each time and when Camilla said 10 Izzy would sit down. She challenged her to go to 20 but Izzy sat down at 10 or 11. I guess she was getting tired.

When Margaret worked with her afterwards she had rhyming flash cards and a switch that simply said "yes" for izzy to push. Each time Margaret showed her and spoke the rhyming words Izzy would push yes and did not push the button for the words that did not rhyme. She did all the answers correct and consistantly. At the end Margaret told her how well she had done and Izzy pushed the button for a "yes."

She is still adjusting to the new AFO's. She lasts about 1-2 hours before demanding they come OFF. We cut back the tension on the right one last night and are hoping just getting used to them on her feet will help her adjust. We're very excited about getting the kid walk soon and having her all ready for lots of standing and moving!

I took izzy to the orthotist today to pick up her S.W.A.S.H. and A.F.O.’s. The A.F.O.’s were not quite ready, they are adding springs. Here’s Izzy being fitted in the swash…

We had to wait while things were shortened and lengthened and tightened …

All done! We go back next Monday to get the AFO’s. Here’s a pic of Izzy with the orthotist.