Thursday, November 25, 2010

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Mary and I spent a lovely mother/daughter day together.  We don't live by family, so there is no big meal for us today.  Mary and I went to the movies and enjoyed the newest Disney princess movie, Tangled.  It was a good one and Mary really enjoyed the music, in particular!  I hope everyone is enjoying the blessings in their lives.  I am really enjoying my first Thanksgiving with my daughter!!!!

Saturday, November 13, 2010

I just don't understand

-how I can see how smart Mary is and others can't.
-why Mary uses her DynaVox independently at home and at the doctor's, but only HOH at school.
-why I do the majority of programming on Mary's DynaVox when she has 2 speech therapists, an assistive tech. specialist and a teacher.
-why it takes multiple phone calls to GI to get one referral to a motility specialist that I was told was going to happen 2 months ago.
-why Mary's DynaVox accessories have not been approved and arrived yet.
-how come Mary's seizures can't be the kind that can be obvious and able to be well controlled.
-why I can't find a nurse I like to work on Saturdays

Monday, November 8, 2010

Mary Story

Mary's speech therapist wrote this story for the kids in Mary's class.  What do you think?

Mary cannot use her muscles like most people, so she does some things differently. She cannot use her mouth muscles to talk or swallow, so she uses a Dynavox to talk. And Mary cannot use her leg muscles to sit, stand or walk, so she uses a wheelchair.
One thing that is different is her Dynavox. Her Dynavox is like a computer and she can use it to talk. Mary might hit a button with her arm to make the Dynavox talk or her teachers may help her hit the button. She might use her Dynavox to tell you something or to ask you a question.

Something else that is different is her trach. It is a hole in Mary's neck that lets her breath. Mary's nurses, Juanita and Sonya, use a suctioning machine to get saliva out of the trach. This makes a loud sound but it does not hurt Mary. Sometimes Mary might cough to get saliva out of her trach. She is not coughing because she is sick, she is just doing it to clear her throat.

Another thing that is different is the way that Mary sits and moves around. She might lay down or sit in special chairs. The special chairs help Mary to sit up. Mary uses a wheelchair to move around because she cannot walk. Her wheelchair is purple, her favorite color!

Mary loves the color purple! She also likes horses, Dora, swimming, playing outside and reading books. You can ask Mary to play. She loves playing with friends! She especially likes to play on the floor and singing “Row your boat, Head Shoulders Knees and Toes” and “Shake your sillies out”.


Saturday, November 6, 2010

Halloween... a bit late

Better late than Never?
Well, Halloween came to our house and we went to a party.
First, there was the decorating contest in the town.  Mary made sure she did her OWN work and not cheat like some others who obviously had their parents work on their pumpkins.  (I offered to help her, but she was adamant to do her pumpkin BY HERSELF!)  Mary stood in her stander and finger painted her pumpkin for the contest.  It was very original and beautiful. :)
 Mary's is the one next to the glittery cat.
Mary and I met some friends for the corn maze a few weeks ago.  It was a sunny, but cold day.  We had a nice time.  I posted about this here.  Mary also got to ride on a cow train and everyone said 'moo' the whole ride. 
hi mom!

We got our pumpkin to make a Jack-O-Lantern at the Country Way, where the corn maze was held.  We (I) worked hard on the pumpkin while Mary did a good job supervising from her pony walker.  She was very proud of the the Jack-O-Lantern, but not interested in getting the goopy stuff on her hands! 

Mary was pretty excited to look at it at nighttime, too!
Mary dressed as Dora the Explorer for Halloween this year.  She adores Dora.  She has 2 Dora dolls and a bunch of other characters and several toys and movies.  Mary thinks it is a thrill to wear her Dora jammies to bed!  So I though it was fitting to allow her to be her beloved Dora for Halloween (even if I, myself, am not her biggest fan.)
Mary loved wearing her Dora mask.  At first she was leery of it, but she insisted on wearing it the entire parade at school.  We added Boots the monkey, Benny the bull, Backpack and Swiper the fox to her wheelchair.

Mary and I went to the church Halloween Party and Haunted house.  The best parts for Mary were the ghost bowling that she is playing in the pictures above and the indoor haunted house.  She loved the flashing lights and everyone saying BOO in the dark!!
During the day, we met my friend and her son at Starbucks and had to have a picture.