Letter to parents

Let me introduce you to my daughter, Mary.


Mary is a student in your child’s class. She has been sharing information about herself with the children via her DynaVox. Her Dynavox is her augmentative communication device – it is a computer that can talk when she activates it with a switch. She is learning to communicate that way because she was born with Arthrogryposis and cannot use the muscles in her mouth very well. Because Mary’s mouth muscles don’t work very well, she has a tube in her neck for breathing. It is called a tracheostomy – we call it a trach (pronounced trake.) Sometimes Mary needs secretions suctioned out of her trach. It doesn’t hurt her and it isn’t messy when she needs this. She has a nurse with her all the time and her nurse uses the suction machine to help Mary. She also uses a wheelchair because her joints and muscles in her legs don’t work the same as most people. Mary’s wheelchair is purple, one of her favorite colors! Some of the other things she likes are horses, Dora, swimming, playing outside, and reading.

If you have questions or concerns about Mary’s condition or friendship with your child, please feel free to call me.

Chaney, Mary's Mom
This is the letter I wrote for Mary's classmates' parents.  I am pretty pleased with the way it turned out.

Random words of a busy mom

I have been too busy to post.
School has started and I am back at work.
Mary loves PreK and her teacher - she made a best friend on the first day! lol
Her teacher wants me to write a letter to the parents explaining Mary's medical issues.  Mary used her DynaVox to explain them to the kids and the teacher wants to be sure the parents hear the same version.
Mary lost both her top front teeth.
I got sick on the second week of school.
Mary got sick a few days later.
We visited a pumpkin patch and Mary showed me how strong she is by pushing a bunch of pumpkins around.  She also enjoyed the haunted Tee-Pee with Jack-O-Lanterns and glow-in-the-dark stuff.
I'm exhausted.
When is the first school vacation?

Doctors and Labs

Mary is experiencing some odd lab work and visits to new specialists.  If you live near a pediatric motility specialist, please let me know about it.  There are only a few in the country.
I can't wait until we get her DynaVox VMax with the accessories so we can travel to the doctors appoinments with it and she can answer questions.  I tried to ask her about pain at an appoinment, and all she could do was laugh at me.  If we had her DynaVox, she could have at least answered yes/no or used her body parts page.  Another month and it should be here.

Mary has been having fun with friends before her school starts.  She had a playdate with a new friend and they played dress up.  She also went to the zoo with a friend and enjoyed the rhinos and playing in the animal playground equipment. 

Mary has been playing with her stuffed animals, too.  She recently saved her pony from Swiper the fox.

Inclusion for my child

I am choosing to put Mary in an inclusion district-based program this school year.  A friend led me to an online magazine with this article that describes a child in a similar situation that is working well!  I am going to share it with Mary's teachers and Spec. Ed. Chairperson and hope they take some of the good ideas from it!

IEPs by Dr. Suess

IEP

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.'

Trip to NYC

Yes, I travel with my daughter.  By myself.  Why wouldn't I?  She is a little girl who likes to go places. And so do I!
We recently went to NYC for the day.  Yes.  FOR THE DAY.
We took an airplane (JetBlue is the best!) in the morning and came back at night.

on the airplane - very excited.  She go the window seat, of course!

It was a long day, but not a bad day.  There was a medical reason for the trip (unfortunately) but we managed to have a little fun, too.  It was Mary's first time in Manhattan.

She liked the subway, but wished she didn't have to sit in her stroller the whole time.

From JFK, we took the AirTrain to Jamaica Station where we took the E subway train into the city.  We got off at Union Square and found a park to play in!

Mary liked this swing in Union Square Park!
14th and 4th

We had our appointment (very loooong) and then made our way to the subway again.  We went to Times Square so Mary could see DORA up in lights!

Right on top of Toys R Us was the celebration of Dora's birthday and Mary got excited to go in and pick out her toy.
She chose a Dora guitar and has been playing music ever since!

Mary slept most of the way home - through the subway ride back to Jamaica Station, the AirTrain to JFK and through the plane ride.

For tips on traveling with a person with a disability go here.

Mary's Favorite Things

Horses - any kind, anywhere! She loves pictures of them, sounds of them, talking about them. She loves the carousel, her stuffed horse, REAL ones!

Baths! Mary loves bathtime so much that it is one time that she gets so excited that she sometimes vocalizes!

Mary loves to swing and to be outside, in general. She usually tells her nurses at least once at day that she wants to go out.

 

Mary loves her sleep!

Mary loves books and has dozens and dozens. She is really into the Junie B. Jones series right now.
Another thing - Mary loves Dora the Explorer. It is her favorite TV show!

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!

Start August with a bang...

Usually I'd like to keep this blog positive, uplifting and, in general a brag-fest about my wonderful daughter!
Today I decided to get real.  This is how the day started at 5:45a.m.
Mary had a rough morning and woke up crying.  Her g-tube medicine port had popped open and she was covered head-to-toe with foul-smelling Peptamen formula.  Gross.  She was so upset.  :(  And probably hungry, since several ounces of formula were on her bed instead of in her stomach.  I think she must have had a lot of gas or something and pushed the g-tube open.
There was formula all over her bed, the crib bumper, her hair, her clothes, and her trach ties were soaked in it.  She was coughing and crying so hard, she was also gagging a bit.  I just wanted to pick her up and comfort her, but she was still connected to her monitors and feeding pump - and needed suctioning.  She was also a disgusting mess.
Cleaning her off took a while, amidst suctioning her trach constantly.  I took Mary out of her bed and cleaned her on the floor as best I could with baby wipes and wet washcloth.  She was trying to cry and go back to sleep at the same time.  I set her up cuddling in a blanket and hooked back up to the rest of her feeding on the floor while I dealt with the bed.  She never did go back to sleep, though. 
Once her feed was finished and I felt she was awake enough, I threw her in the tub and gave her a good soak.  She smiled big appreciation for that!  She hates to be messy. 
We are doing better now, laundry in and new sheets on the bed.  I am a bit worried about her, though.  Gave her extra formula during the day today.  I am not sure her tummy is feeling okay or if it is her back.  I have wondered about this for a few days now.  When she is in a good mood, I will have to try to talk with her and get an answer via DynaVox.  Mary has told me and others about body parts and how she is feeling on a particular day, so hopefully this will work.
Other news:  We have these g-tube pads that are pretty awesome!  They are cute and just the right size and washable.  I don't have to tape anything to Mary's belly or deal with little 2x2s falling out of her clothing anymore.  We call them a little bling for her belly!

Mary is a a busy girl!

I have time to blog this summer since I am only working a few days a week. I decided I would fill you in on all the services and activities Mary does.

On Mondays, her nurse arrives early in the morning before we wake up and starts her medications, including nebulizers. She also disconnects her feeding pump checks her vitals. Therapies start with Occupational Therapy. Mary loves her OT! She also has special education and physical therapy on Mondays. Mary's nurse leaves when I return from work and I take Mary to Hippotherapy - her favorite part of the week! She rides on Scotty, the pony for 30 minutes to work on stretching and trunk control.

On Tuesdays, the nurse arrives for the same morning routine. Speech therapy begins with Mary today and they work on using the DynaVox. Mary then has OT and music therapy. Mary has vision services for an hour to work on strengthening those muscles. I arrive home and her nurse leaves. Mary then goes for pool therapy.

This summer, Wednesdays are fairly light for Mary and she only has Speech therapy and Special Education in the morning. She also has her Assistive Technology Consultant come to work with her on communication techniques. I stay home on Wednesdays and do all of her nursing care.

Thursdays, I am back to work, so the nurse arrives early for a.m. meds again. Mary has her third Speech therapy session for the week and begins her busy day. Mary also has OT, music therapy, and PT on Thursdays.

Fridays are very light - she only has PT in the middle of the day! Sometimes she has a nurse and sometimes she doesn't.

In August, we are going to a bunch of doctors. We have appointments with Neurology, Genetics, Orthopedics, and ENT. We already saw Pulmonary and G.I. this summer. The wheelchair vendor was out a few weeks ago, as well.

Busy, busy, busy!!!

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.

AMC

AMC

Mary has AMC. Support awareness for this disability by wearing blue on Wednesday!

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!