Sunday, August 29, 2010

IEPs by Dr. Suess


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.'

Friday, August 27, 2010

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.

Saturday, August 21, 2010

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!

Wednesday, August 18, 2010


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!

Thursday, August 12, 2010

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.

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

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

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!

Sunday, August 1, 2010

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!