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.

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.

xoxo

The Fall

So what's been happening???
A lot.

Mary was insistent that I let HER decorate HER pumpkin for the town contest.  I couldn't help or give ideas... they were rejected.  Mary used her DynaVox to tell me that she was going to fingerpaint it and absolutely NO HELP was needed.

She is getting that way about a lot of things...
Her riding instructors have noticed....

Maybe that's why her horse keeps walking into walls.......

Mary has made so much improvement in her riding.  She can sit up for the entire lesson, holding her head up, keeping her back straight(ish) and her hips where they should be... She is riding a lot longer than when she started in April because not a lot of time is being spent repositioning her!  Too bad her mean mom is making her stop during the cold weather.  :s

Mary is 5 years old and very proud of that!  She had an awesome birthday party and 4 of her friends came.  The next day, she used her DynaVox to tell her classmates about her party. I am told she was super excited about it!

Mary and I have done a few fall activities this month and last.  We went to get some pumpkins and into two huge teepees.  They were real dark inside with lighted jack-o-lanterns - Mary thought it was cool!

We also went to Country Way Corn Maze which was awesome because there was a huge bale of hay for Mary to play in!  We also got another pumpkin and watched some duck races.  Mary played with a friend there, too.

 She is doing real fantastic things in school which I hope to post about later this weekend!

Got It!

Mary's got her blue DynaVox VMax!  Her reaction to it was great!  Very happy.  The following day, her nurse came and Mary rolled over to her new device eager to show it off!!
We are still waiting for some of the accessories to make it truly work for her, but we make do for now.  Mary uses it at school the best she can and she uses it at home.  We have started to take it out in the community when feasible.  She has used it at Sunday School and at the doctor's office.
At church, Mary used it to make choices during a coloring project.  That was successful.
At the doctor, Mary carried on a long conversation with me in the waiting room.  She was there for her yearly physical and wanted to know if the Dr. was going to look in her ears and mouth.  She also requested to lay on the bed (the pediatrician has a fun bed to lay on).  In the exam room, Mary said 'hi' to her Dr. and then asked if she was going to get a shot.  That was the end of the DynaVox, though... tears... 3 shots were coming her way.  :(
This afternoon, Mary used her DynaVox to let me know how she wanted to decorate her pumpkin.  The town has a contest for 4-9 yr. olds.  Mary chose to use fingerpaint on her's.  She will enter it in the contest next Saturday. 
Tomorrow Mary will try to use her DynaVox at her birthday party.
I will try to get some pictures up this coming week!

Veto by the boss

Mary chose blue.  The votes came in and the first place was pink, blue was second, and all the others had one vote each.  However, the boss spoke and she chose blue.  So once the leaves fall, Mary should have her blue DynaVox VMax with accessories: ear pillow, wheelchair mount, switch, switch mount.
School starts a couple weeks before it all arrives, but we have a loaner device until her's comes, thanks to her therapists at Clinical Associates of the Fingerlakes!
These are some of the icons on the device that she uses independently.  She is still talking on the phone with my mom about once a week.  She also tells her caregivers what she wants to do during the day.  Mary has a page that helps her tell people about herself and how she uses a DynaVox and a wheelchair.

Mary uses this page to tell people about herself.

This is the page she uses during various therapies.  Each icon links to open another page with choices, activites, concepts or whatever the therapist needed Mary to be able to access.

Mary uses this page to tell people how she is feeling.

Mary can call me to her and tell me what she needs at that moment.

Mary uses this page usually to tell her nurses what she wants to do during the day when she has 'down time.'

specialists

I'm feeling overwhelmed with specialists this month. I guess it is to be expected since we are seeing a bunch of specialists this month...
On top of the specialist we expected to see, Mary is having an issue with her heart, so we have to see a cardiologist.
Summer programming ended and Mary is trying to decide which color DynaVox VMax to order. Go here to vote on the color Mary should get. I'm really looking forward to the day we can take her DynaVox to the doctor's office and she can participate actively (as much as a 4 (almost 5) year old can) in the conversation. Today she used a voice-output switch and her pediatrician seemed impressed.
Next we see a special orthopedist, then a dentist, then ENT, then GI and opthamologist. And in there somewhere we have to get into cardiology. We should probably get checked out in Urology, as well, but that hasn't been thoroughly discussed. Mary has to have blood drawn for a 3rd time in 2 weeks and I am not looking forward to that. She is an awful stick! Slow blood and weak veins that no one can find... terrible time. It is so sad to watch. :(

Right now I am watching Mary play on the living room floor. She is scooting around on her belly and I don't know why, but she is making a beeline for the dining room. Overall, she is a happy and playful kid. We have good nurses working with her now. What a relief that is!!! We are patiently waiting for the Pre-K notification that says if she is in the morning or afternoon class. School starts Sept. 8 and Mary is going to be in regular ed. at the disctrict!

DynaVox VMax Color Vote

Mary needs to choose a color for her new DynaVox VMax.  She has 5 colors to choose from.  We are taking a vote to see what people think would suit her best!  Click on the color choices to go to the vote.  There is also a blue DynaVox, but I couldn't find a picture of it.

Black DynaVox

this is the smaller sized version of the one she will get

Green DynaVox VMax

She will not have the eye gaze part (black addition) on the bottom.

Pink DynaVox VMax

DynaVox VMax

She will not have the silver tracking device on the top.

Check back at the end of the month to find out which color she is going to order!

Selena Gomez used a Dynavox!

Summer Update

It has been a busy July here! Mary is continuing to use her DynaVox and is doing very well! Her speech therapist and assistive technology person from school are writing justifications for her to get her own, with a wheelchair mount and other accessories this fall. Mary is able to answer yes/no questions, simple comprehension questions, talk on the phone with her grandmother, play pretend with her pony, tell us how she is feeling and other things with this device! It is fantastic! Mary always tells her nurses what she wants to do during the week by using her DynaVox and making choices.

In other news, Mary attended Vacation Bible School at church and Love Love LOVED it! We wish VBS was all summer long! Here are some pictures of all the fun she had.

most fun bounce house ever!!!

Mary also has a couple of little girlfriends she has been playing with this summer.  Nikki and Julianna have had a few playdates with her and it has been fun.  She has enjoyed playing puppies with both of them.  Mary has a switch operated puppy and a remote control puppy, so it works well when there are two kids.  She enjoyed swinging on Nikki's swingset and I feel guilty that I haven't hung her swing yet.  Julianna got Mary into dolls a little.  Mary likes her Dora doll best, of course!  Just yesterday, Julianna and Mary put on a "bouncing show."  It was cute.  They were bouncing and stopping - that was the whole show!  Kids are funny - they loved it!

Talking to Nonnie on the Telephone

Mary talked to her grandmother on the phone tonight! She told Nonnie about getting a pony and how she plays with him. Then she used her photo pages to tell Nonnie about other things in her life! Nonnie asked some yes/no questions and Mary answered them. I need to add greetings and an "I love you" to a page so that Mary can answer more than 'yes' when Nonnie says those things.

Oh yeah, Mary also figured out how to close a page that she navigated to mistakenly. She waits to hear the cue 'close.' I am so impressed with her!

Mary got a pony

Well, not a real pony. It is a stuffed animal and she took to it immediately! The first thing she did was pet it's nose. Then we got her Dynavox out and I asked her some yes/no questions about it. I found out that this horse is a boy. The horse she rides each Monday is named Scotty, but she told me that she did not want to name this horse Scotty. I suggested Spotty and she said "yes." This is one way she plays with Spotty using her Dynavox.

Itsy Bitsy Spider

Mary's favorite children's song is Itsy Bitsy Spider. I am grateful that DynaVox has that programmed on their "Young Child" pages! It is one thing that Mary is using to learn DynaVox with. Mary really loves the DynaVox, but has only had it a few days. She has made a couple of choices - books, songs and TV shows.
They way she uses it is by hitting the blue switch when the device scans -visually and auditorily- the desired item. The device then says the choice that Mary made.

communicating

Mary communicates in a variety of ways.

facial expressions









gestures












eye gaze (sort of)












switches








and she just tried our friend's Dynavox today!