Tuesday, December 27, 2011

The Fall Came and Went...

Well, it's the end of the year and I thought I should catch you up.
Mary has had an eventful autumn.  She turned 6 in October; became not one, but two different princesses for Halloween; had a short stay in the hospital for hypoglycemia; visited her aunt and uncle in NYC for Thanksgiving; and celebrated Christmas at home!
Mary had a Fresh Beat Band theme party and invited 8 friends.  They danced and partied and had a blast!  She was thrilled at getting to dress up in dance costumes and listen to Fresh Beat Band music.

Mary has several princess dresses, but she also got two new ones for her birthday.  She decided she wanted to wear one for the party on Saturday night and then wear the other for her school party on Halloween.  
Mary asked to get her face painted, but she only wanted a white triangle on her face.  
What a funny kid!  LOL

Princess Tiana

Mary and her Aunt Ellyde (whom she Adores!)

Playing her new toy with Uncle Darnell

 Thrilled with the Fresh Beat Band Concert at Carnegie Hall!

Thursday, September 8, 2011

AMC Conference

In July, Mary and I attended the 6th Annual AMCSI Conference.  AMCSI stands for Arthrogryposis Multiplex Congenita Support, Inc. Arthrogryposis means joints that are crooked.  Multiplex means multiple.  Congenita means at birth.
This conference was so fun and we can't wait for next year!  This year, we traveled to Kansas City to meet Ani, Abby, Theresa, Lindsey, Luca, Gabby, Alayna, MinJee, Bonnie, Bev, Nathan, Jacob, Jen, Cheryl, Tracey, Dr. VB, Erica, Zak, Maggie, Jennifer, Deborah, Doris, Ward, Karen and so many more!
There were sessions for adults and for children.  I learned about blenderized diets for G-tubes.  Mary is now receiving a balanced diet of real foods instead of processed formula through her g-tube and she is much healthier because of this!  I also attended sessions on PT and orthopedics.  I learned different techniques for treating muscles and joints.  I was given the idea to do serial casting on Mary's legs to get her to bend at her knees.  She is going through this now and I am cautiously optimistic.
Some of the sessions Mary attended were the children's petting zoo.
She also participated in making something that all the kids participated in by painting with their feet.
Then Mary and all the attendees did Painting with Theresa.
Theresa is a professional artist who has AMC just like Mary!  Her website is http://www.theresalucas.com/
To see the group photo of the conference attendees and Mary is right in the front, go to www.amcsupport.org

Tuesday, August 2, 2011

Summer trip Part 1

Mary and I went on a long (16 days) road trip this summer.  It was a great trip overall.  Of course there were some ups and downs, but a great trip nonetheless!
UPS - Mary got to visit with her Nonnie!
Mary loved showing her the book she made that shows a lot of her work from Pre-K!  I can't believe in September, Mary will go to school full days and be in Kindergarten!
my brother - Jonathan, me, sister - Ellyde, cousin - Greg
DOWN - We had to attend the funeral of my grandmother.
UPS - Mary got to meet her Uncle Jonathan for the first time!  (FINALLY!)  And while we were in the area, we went to Navy Pier and the Children's Museum.  That was fun for her.  Mary enjoyed watching TV shows on her iPad in the car during all driving we did.
Mary lost a tooth in the hotel the first night of vacation.
Mary is a good traveler.  We drove from our home in New York State to a hotel in Ohio.  From there we went to Chicago area.  We spent about a week vising family there.  Then we drove to St. Louis and spent the night.  Our destination was Kansas City for the Arthrogryposis Multiplex Congenita Support, Inc. Conference.

More on that next time, but here is a picture of a friend that Mary met.  :)

Thursday, July 28, 2011

art camp

Mary went to art camp at a local school this week.  She loved it!  The teacher was great.  It was called "Art for Little Ones" and the kids were 5-6, pre-k to 1st graders.  Mary is becoming quite the artist!  Here is some of her art and explanations of how she created them.

Mary uses a glove with a hole in it.  In the hole, we place a paintbrush and she uses it.  Mary's fingers do not bend enough to hold onto anything.

Mary is left-handed and very determined to do things by herself when she can.  She is very good at drawing lines and making dots with markers, pencils, and paints.  Mary has only been using the glove technique for 10 months.

The teacher gave the students the direction to paint lines on the paper one day and the next day to fill in the in-betweens with 3 colors.  Mary needed some guidance to stay in the lines, but
the rest is all her work!

Mary chose her colors by using her Dynavox.  Mary's current favorite color is yellow.  Some of her previous favorite colors have been purple, brown and red.  Mary currently wants to be a teacher when she grows up.  For a long time, she wanted to be a horseback-rider vet.
The kids were told to draw an animal and Mary used her Dynavox to choose pig.  They used all sorts of paint and print techniques to make paper designs and cut the shapes for their animals.

Mary made the decision to draw a pig by saying so via her Dynavox.  She then told a helper to draw the various body parts of the pig via the Dynavox.  After painting the papers, she told the helper which paper was for which body part - via her Dynavox.

After reading monster books, the kids were told to draw monsters and color them in.
Helping Mary draw this monster was so cool!  She loved the books and really got into the drawing!  She used her Dynavox to tell me how she wanted her monster to be.  First, she told me that she wanted the monster to have a big head.  I helped her draw a big head.  Then she told me the body would be little.  Then she said that she would draw the mouth, so she did.  Then she said she would draw the mouth.... again?  I was confused, but it was her monster, so anything goes, I guess.  And then I figured out what she was doing!  She was making a two-faced monster.  So she continued to tell me the face parts and doubled up on them.  And then she chose the colors and I helped her fill in the colors.  I admit that I did the eyeballs for her.

Sometimes Mary gets carried away and paints herself.
What true artist wouldn't get paint all over herself anyway?  :)

BTW - I will post again about our big trip.  I have had a lot on my mind.  I'll try to get to it soon.

Friday, June 17, 2011

Hey Blog, How ya been?

Dear Blog,
I am sorry that I have been gone so long.  I have been very busy this spring.  After Easter, I got overwhelmed with work and motherhood.
I attended Mary's Mother Day's Tea at her school.  Mary and her classmates serenaded us with sweet songs and fed us treats.  They served us like we were queens and gave us pretty homemade place-mates, corsages and coasters.
Performing for Mother's Day Tea
Mary has had her best friend over to play several times.  Mary and Isabella have had fun playing puppies, bowling, and music.
At the end of May, we had to deal with a minor fracture of Mary's right tibia.  She has healed well.  She also started a new diet of some real foods, pureed/liquefied, through the g-tube.  It is going well.  Mary is getting more fruits and vegetables this way and is going to be getting more calcium and Vitamin D soon.  In other medical news, she has come off all of her sedating seizure medications!   She does take one drug to prevent seizures, but it is not sedating.  Mary is very healthy!
Last week was the "Pre-Kindergarten Grand Finale Class of 2024" and it was fantastic!  Mary was a bit shy and did better in the rehearsal than performance, but smiled on stage nicely.  She played the drum a little bit, too.  The kids sang frog songs and patriotic songs.  And the teachers announced them one by one and said what they were going to be when they grow up.  Mary wants to be a horseback rider.
Mary uses her DynaVox pretty well.  She still doesn't use on command from a teacher, but uses it for communication when she needs something or has a question.  Whenever we go to the doctor, Mary asks, "Will you look in my mouth?" and "Will I get a shot?"  Since she has had the power to talk about these worries, she has gotten a lot more cooperative with opening her mouth and not crying for the shot!  :)  GO MARY!
I hope all is well in the land of Blog.  I will try to update again soon.

Friday, April 22, 2011


I was watching TV tonight and put on what I thought was a safe show to be watching with Mary.  I am careful not to watch Law and Order or Criminal Minds or even House usually when she is around.  I have Harry Potter and the Deathly Hallows part 1 to watch, but I am waiting for a time when she isn't around (whenever that will be???).  I limit the shows I watch with violence and sex and swearing.  I know she takes it all in.  She has gotten into the show Glee, but I am (perhaps naively) believing that she is only loving it for the music.  I have caught her paying attention to General Hospital, but I think that runs in the family - I got hooked on it before I was in Kindergarten, too.  LOL

Here is what happened today.  I had The Waltons on TV.  The Waltons is an old 1970s show about a family living in the depression era.  It is a very safe show to watch as a family.  But this episode was the one where the youngest girl, Elisabeth, fell and broke both of her legs.  She also damaged nerves and went home with no feeling in her legs, using a wheelchair, with leg braces and crutches to drag her legs along.  There were many times in the episode that the phrase 'can't walk' was used.  At one point Elisabeth and her friend visit a holistic kind of lady who claims she can cure Elisabeth, but of course, she falls over.  The lady is yelling "walk" and Elisabeth is saying "I can't" and her friend is saying "She can't walk."  I look at Mary and Mary is practically in tears.

I think I traumatized my daughter with my TV choice.  We quickly turned it off and talked about how God gave Mary very nice legs and sometimes God gives legs that can walk and sometimes He gives legs that are for standing only or sitting in great wheelchairs.  We hugged for a long time.

And then we put on NickJR. for the rest of the night.

Tuesday, April 5, 2011

Sick of It

I am sick of a lot of things lately.  I don't know if I am sensitive because we are cooped up inside all winter or if I need a break from working or if I just need more sleep.  But people are driving me crazy.
I am sick of people telling me that my daughter shouldn't be in regular ed.
I am sick of deadlines and paperwork.
I am sick of waiting for phone calls and making phone calls.
I am sick of interviewing nurses and hoping they show up for their job.
I am sick of having a cluttered house.

Here is what I love:
I love that I can take Mary to get a special hair-do on Thursday.
I love that I am taking the summer off to spend time with her!
I love that my friends are visiting for a few days this month!
I love that Mary is going through a cuddly phase.

In the end, I guess I am pretty lucky.

Friday, March 25, 2011

Monday, March 14, 2011

Kindergarten Here We Come!

I was talking with my sister tonight and was reminded just how far Mary has come in the 15 months she has been home.  This is a picture of when she chose her own clothes.  I love having a 'girly girl!'
Mary has been approved for a sleep safe bed and I am very grateful.  She is continually challenging herself to get out of her bed at all hours of the night/morning to play!  Usually she aims with her head.  Now we are just waiting for a delivery date.
She did not like it when I went with her to school last week.  Mary refused to leave the house without crying until I told her we would go to Burger King.  (mind you - this is a kid who doesn't even eat by mouth)  So I got my lunch at Burger King, gave her the toy and, unfortunately for her, took her to school.  The moment we got to the classroom door, she burst into tears.  She knew I was staying because there wasn't a nurse available.  Once I promised her that I would let her hold the toy from Burger King during school, she stopped crying.  Mary does not like Mommy coming to school.  Mommy expects Mary to work hard.
Kindergarten registration is this week.  I am going to request that she have the one man teacher at our school!  I think she would do very well with a male influence.

Friday, February 25, 2011

never ceases to amaze me

Mary and I are at our local hospital right now.  She is in for long term seizure monitoring.  All of her EEGs since she came home have shown zero seizure activity, but she is on 3 seizure meds and she has 4 different types of 'seizures.'  Go figure.  So we are trying to get to the bottom of this.
Anyway, she is trooper, as usual.  However, she is more 'vocal' than before and more demanding.  Using her DynaVox, Mary has done some great communicating.  Her school wants me to catch it on video, but how do you catch spontaneous communication?
While she was getting all the electrodes glued to her head, the doctor had my attention to get some information.  Mary started to get mad and called out 'Mom'  3x.   I kept trying to assure her I was with her and everything, but the darn doc kept taking me away from her.  Then she used her DynaVox again (on a different page) to ask "where's my mom?"  At that point she was vocalizing (not a regular occurrence) and quite upset, so I ignored the doctor and payed attention to my girl.
Mary's new hobby - painting!
Another situation happened last night.  Mary had just finished painting.  She just told me 'no' she did not want to get back in bed.  I asked a nurse to come in the room for a little while so I could go get dinner.  I told Mary that the nurse will sit with her and Mary could get back in bed when I got back.  When I returned 20 minutes later, Mary was in bed.  Mary had used her DynaVox to tell the nurses (another one came in) a whole bunch of things - she needed suctioning (numerous times), she needed to get cleaned up, and she apparently insisted that they should pick her up.
I wonder what she'll say today?

Monday, January 17, 2011

Wisconsin Winter

Mary had the best time visiting her 'cousin' Kaylee in Wisconsin.  Mary doesn't have any true cousins, so we call Kaylee her cousin.
Mary and Kaylee at the airport as we wait for all of our luggage to arrive.
After the airplane ride there, Mary was very excited to get down to visiting!  She used her DynaVox the most ever!!!!  She asked so many questions and said so many things!  It was amazing.  She asked who everyone was that was in the van with us - Matt, Debbie, Kristi, and Joan (and Kaylee).  Then she told about her Christmas presents and ask what people got for Christmas.  And she asked for some Christmas Carols.  We sang to her so she was stop talking for a while! LOL

Kaylee (2) and Mary (5) waiting to open presents
Mary and Kaylee get along real well.  They both like horses and they enjoy the spinning chair.  They played in the tent that was set up in the living room.  They both like Dora and played with Mary's new doll.  While it was nice weather, they played outside and had lots of fun!
sledding for the first time!

falling for the first time!

snow angel

examining the snow

Kaylee - sitting in the snow
Mary - sitting in the snow
loving this!!!!!
These girls would have played in the snow every day if the weather had cooperated.  Instead, they played horses a lot!
Kaylee's near-life-size pony
It was a real fun visit and we were sad to leave.  Fortunately, Kaylee and her family are planning a visit to our house in April!  We plan on a lot of fun!!!!!

Saturday, January 15, 2011

late xmas post

Life is way too busy for me to post things as they happen.  So I am going to go back and wish you all a belated Merry Christmas!
Mary was so excited to go on vacation for the holiday break!  Unfortunately, I made a major FAIL and did not prep her on what it means to visit people.  She understands staying in a hotel and driving to see people for the day, but staying in a new house overnight really threw her.  The last time Mary stayed in a new house overnight was when she moved home with me.  There was a lot of explaining to do when I realized this was upsetting to her.  After explaining that we were not moving and she was staying with Mommy and we were going to go home to her own bed after we were done visiting, she wound up having a great time!
Santa Mary

Making a snow angel