Wednesday, February 22, 2012

A bit of sunshine

Cute, cute, cute!!!!!
We've had a trial of the Tobii eye gaze system since Christmas and it's now time to return it.  We are hoping to trial the Eco II eye gaze system soon and then decide which system to order after the trials.  I have to say that I LOVE the Tobii eye gaze system and am excited that Eco uses the same technology (I believe they licensed it from Tobii?) so I'm really interested to see the differences between the systems in action.

Emma does pretty good with the Tobii.  The eye gaze detection is really forgiving of her changes in neck control.  She is pretty accurate on selecting items when she wants to communicate.  We found that making the interaction a fun exercise rather than a teaching exercise greatly improved Emma's interest in using the device.  For example, asking her to tell us what color she wants to use in her art activity she ignores us.  Asking Emma to have the mouse knock over a horse and she can't get enough of using the device.  Her team agrees that she is cognitively able to understand our request to tell us the color but that she chooses not to comply because she just doesn't want to rather than she is not capable.

Emma has mostly been using the device at school but we have taken it home on several weekends.  Since Emma has off this week and we were at the end of the trial we decided to bring the device home and get another 5 days of use before the return date.  Her SLP programmed a screen with a photo of me and a photo of Emma to do some turn taking activities.  She did this right before she sent the device home so Emma had not seen it before.  When I opened it Emma immediately loved this screen!  She kept selecting my photo over and over and over and over again and looking at me each time she selected it.  It was like she was so happy to finally be able to say my name!  My heart melted......

We used this screen to play some games.  Emma liked the game where she chose who should knock over a stack of blocks.  She mostly asked me to do it, but did decide to do it herself every now and again.  Here is a video I took of her using this screen.

The video was hard to shoot while interacting with Emma in the activity and getting Emma to ignore the fact that her photo was being taken.  This child LOVES getting her photo taken and will stop all activities to ham it up for the camera.  What I like about the video is it shows that she knows how to use the device.  She is very deliberate in her choices.  She keeps her eye gaze on the square she wants to select for the appropriate amount of time mostly on her first try.  Sometimes she needs to try again and when that happens she does try again until it speaks her selection.  Her attention is still pretty short and is likely a mix of her age and that using eye gaze to communicate is fairly tiring.  Finnegan was to her right so she kept looking at her to knock them down, too - Finnegan usually knocks the blocks over when we play with them on the floor.  I have also noticed that during the device trial she started to "talk" more.  You can see this in the video at about 2:25 in, it sounds like she is saying "you" when the screen didn't pick up her eye gaze at me.  I had her too close to the screen - I moved her in to knock over the blocks and forgot to move her back - for it to detect her eyes and when I figured that out and moved her back she was able to select my photo.

I'm thrilled with the team that is working with us to give Emma a voice.  They are amazing!  And I'm thrilled with how well Emma is doing with the device after only 8 weeks.  I'm not sure what is the ideal communication method for Emma yet but I see so much potential and promise in her future.  For now that is enough.

Tuesday, February 21, 2012


I had a roommate in college that believed how much a rose blooms when given to you by a guy was in direct proportion to how much he loved her.  If the guy just happened to buy a rose that plopped over before even blooming it was a no-win situation for the guy.  He didn't grow it or even hand pick it - he was just handed it from the florist and how it turned out was pretty much luck.  To my roommate, though, how it bloomed was a telltale sign of their relationship and the poor guy got accolades or headaches from his purchase.  More often than not it was headache because college florists don't tend to stock the best roses and the heating in the dorms was atrocious.

I did not subscribe to her theory.  I was just thrilled when anyone thought to give me a flower!  I wasn't picky - buttercup, violet, carnation, rose.  Any flower would make me happy.  Still does.  I especially love the dandelions the girls give me in the spring because of all the joy they radiate when they present me their precious flower hand-picked just for Mommy!

Chris totally surprised me last week for Valentine's day with a dozen roses.  Two died, 10 are in full bloom (I wonder what my old roommate's theory would be about the mixed bag I received!).  They are amazingly beautiful!  I love to look at how they change and bloom even bigger each day.  It's been a 8 days and the photo above was taken today.  I have them on our mantle with the rest of our Valentine's decorations - well, except for when I took them down and outside to take this photo.  Chris commented the other day on how vibrant and happy the mantle looked.  I agree.  It's hard to take down the Valentine's display because most of it is homemade goodness from the girls.

But, alas, I will take our Valentine's down tomorrow or the next day.  We have to make room for the Easter crafts we made tonight at our church's Mardi Gras family craft and dinner event.  And we have loads of St. Patrick's Day crafts to make and add to the display.

Life is ever changing - just like my roses.  It is beautiful and precious.  And vibrant.

Sunday, February 19, 2012

Proof the girls are growing up

Julia has been working so hard on reading.  She has some Level 1 "ready to read" books that she can now read!  She is so excited about this accomplishment and I am, too!  She is working so, so hard - sounding out the words and remembering her sight words that cannot be sounded out.  I don't really remember learning to read and didn't realize how much work it is to learn to read.  Julia is putting in the time and effort willingly and the fruits of her labors are paying off.  I'm so proud of her!  

Emma continues to get good reports from school.  Last week she had her PT note sent home saying that she had her BEST PT session at school ever!  She was working in the gait trainer and took a total of 8 steps without too much prompting from the PT which hasn't happened at school before.  Horray Emma!  The same day she had a message sent home that she had a "time out" at school.  I asked Emma about it and she laughed.  Stinker!  

Her time out was for 1 minute and it was after three warnings to attend and give her input at her turn during circle time.  Emma has a wonderful way about looking through adults to focus only on observing other children.  She does this pretty much everywhere, not only at school.  Her time out was that she was taken out of circle time for 1 minute and she couldn't see the other children for that 1 minute.  I've given my permission for the staff at school to do this after they have given Emma several warnings and on the condition that they tell me each time they use a time out.  They don't want to use time outs with Emma but have tried lots and lots of things to try and get Emma to become more of a participant and less of an observer during school activities.  She was given a 1 minute time out and once she was brought back to the circle she participated in all the activities happily.  She picked colors, numbers, responded yes/no to questions smiling the whole time.  I'm so happy she participated!  I hope she doesn't need more time outs to continue her participation ;-) but my experience has shown that Emma learns quickly and I've only ever had to do a couple of time outs at home and she changes her behavior.  She has that in common with Julia.

Julia loves to give Emma kisses and Emma loves to get them!

It is so much harder giving Emma consequences to her actions than it was/is with Julia.  But I know that we are not doing her any favors by letting her continue to skate by on certain things when she is capable and able to participate.  

Emma decided to give Julia a kiss.  An unexpected and beautiful moment!

Wednesday, February 15, 2012

Goal update

This year I've been holding myself to the one little word "Action."  I have to say that taking deliberate action on the my focus areas - family, photos, fitness and finances - is lowering my daily stress level.

A few things that we accomplished so far this year are:

  • Family:  Implemented family game nights, movie nights, and craft nights.  Our girls are really thriving with the extra attention and activities.  We also hold informal family meetings that the girls like and Chris doesn't like.  He thinks they are silly.  I like them because everyone has to give me at least one suggestion for a dinner dish to make that week and so it means that at least 2 days/week there are no complaints at dinner.  Julia likes it because she loves to go over the family rules - with her in charge of dishing the rules out and she has a baton she uses as her microphone.  Emma loves to watch Julia talk and wield the baton and so she loves the meetings.  
  • Photos:  I've enrolled in a photo class and it's quite intense.  But, I'm seeing such improvements in the photos I am taking and love that I took this class.  
  • Fitness:  Most weeks I'm hitting the gym 3-5x.  Chris loves working out, but I never really liked it too much so going this frequently is new for me.  It's now become a routine and most days I actually look forward to going - something I never thought I would say!  I mix it up with classes and individual workouts and then hit the hot tub when I have a few extra minutes at the end of my workout.  I've found that the people in the classes I take are really friendly and usually there the same day/time I work out and so it's been a bit of a social outlet for me, too.
  • Finances:  We've made a lot of progress on this, too.  I've been tracking our expenses and made a loose budget for this month and next to see how it goes.  I don't like budgets but since we haven't won the lottery I guess it's a necessity.  
In addition to all this, Emma has made fantastic progress in potty training and started extra physical therapy outside of school 2x/week.  Julia now knows 4 steps in Irish dancing and she can now swim without needing a float all the time.

I like taking a moment to realize all that we are doing because it can get lost in our overly-hectic life.  Is it really on February??!!! My how we started the year with a BANG!

I took this photo outside our door.  It's of the beautiful flowers Chris sent me for Valentine's day.  I'm a lucky woman!

Tuesday, February 14, 2012

Valentine's Wishes

Wishing everyone a bit of love today and every day!

Saturday, February 11, 2012

Friday Fun

Friday was Pajama day for Julia at school.  She was so excited to show off her pajamas to her class but I think she was even more excited that she didn't have to get dressed in the morning giving her a couple of extra minutes in bed.  I was lucky that I snapped a photo of her in the morning before she left for school. Notice that she is wearing a headband she made the other week and a new necklace (thanks Aunt Jane - it's a HIT!) along with her PJs.  Because you can never accessorize your pajamas too much!

She told me that she was the only one in her class that had princess pajamas except one other little girl had a photo of princesses on her nightgown.  She was pretty pleased that it was only the two of them with any sort of princesses for pajama day.  The things that excite my 6 year old crack me up!

My parents came down on Friday and the girls were so excited to see them.  They love when they have visitors - especially their grandparents.  They get lots of goodies when the grandparents are around and lots of extra attention.  How lucky they were to have a visit.  After dinner we played Monopoly Jr.  in teams since Mom Mom and Pop Pop never played before.  It was Julia and Mom Mom vs. Daddy and Pop Pop vs. Mommy and Emma.  No surprise that Mommy and Emma won since Emma seems to win nearly every game she plays.  Really.  If you want to win a board game around her ask to be on Emma's team.  It must be all her good living!

Julia lost her top front tooth after the game.  Not during the game - it was a really friendly game, I promise :-)  She looks so much older without that little wiggly front tooth......the time sure is going by quickly.  She quick retrieved her tooth pouch and tooth fairy light and when it was time for bed everything was all set for the fairy.  I'm happy to say she did come (she was almost a no show - Yikes!) and Julia woke me this morning with her pouch that contained money instead of a tooth.  She is one happy little girl.  And an adorable one at that! It seems like the other front tooth will be out in the next day or two and she'll be toothless and I'm guessing even more adorable if that is possible.

What a Fun Friday, indeed!

Saturday, February 4, 2012

Today we met a Hinny

This morning we went to a farm near Emma's school to learn about their therapeutic riding program.  Emma has ridden horses since she was about 20 months old and when we moved she kept at it for a few months before the long commute had us make the hard decision to stop riding at that program - we really, truly loved the atmosphere and people and it was hard to say goodbye.

Now that we are more settled in our new area we are looking at more local therapeutic riding programs.  Our main reason in enrolling in a program is to help Emma gain better trunk control and also give her a fun extracurricular activity.  The girls love horses and being around them so they were really happy this morning as we ventured out for a tour of a local therapeutic riding program.  The farm we visited today is close to Emma's school (about 35 minutes away from our house) so if we did enroll there we would try and have her lesson coincide with her school schedule to cut down on extra driving/commute time, which would be nice.

The program is pretty new and still growing.  They were a horse breeding farm but trained to provide therapeutic riding and now do that exclusively.  Their program started about 3 years ago, is certified by PATH, and they have about 9 riders and 19 horses/ponies.  Recently, they were awarded some grant money to expand their equipment so they could start to offer more riding opportunities and really hope to open up more options for veterans to ride.  The people we met there were very nice and the horses seem very well loved!

Julia was happy to meet a couple of the animals.  They had a Hinny which is a donkey/pony mix that was very friendly and they brought her out to meet the girls.  Her name is Jill and there is a miniature donkey in another field and his name is Jack.  Jill was definitely more friendly than Jack who was a bit more shy.  We also were able to meet a few of the horses and Julia was happy to learn the names of many of them because she really likes to put names to horses.  It's kind of her thing.

Emma had no hesitation in reaching out to pet Jill.  She was really cute and shaggy with her furry winter coat and her size was just right for Emma to reach her without the need to get out of her chair and have someone hold her up.

Chris and I liked this program, but we are probably going to check out one or two more programs before we decide.  The other two programs are much larger and have been in business for a very long time.  It seems that we often favor smaller programs over larger ones in the various decisions we've made for Emma so far, but really most of our decisions are made from our gut.  We've found that somehow you just know which program fits best after you visit a place and speak with the people so we need to visit a couple more farms before we make a final decision.

The other reason we are being cautious in choosing a program rather than just jumping right in is that we get really attached and often have a hard time jumping ship so I want to make sure we make the right choice the first go around.  Changing therapists/programs/aides is hard on Emma and it takes a bit of time to gain her trust that the person will understand her subtle communications, won't let her fall, will give her the support she needs, etc.  I'm looking forward to checking out the other programs for comparison and hopefully starting with one again soon.

Friday, February 3, 2012

Our first Auto Show

Tonight we went to the Auto Show courtesy of the Starlight Children's Foundation.  If you have never heard of this charity I want to tell you how amazing they are to provide a bit of much-needed enjoyment for families like us.  Here is how they describe the local group: 

  • Unlike any other charity, Starlight Children’s Foundation™ offers a unique blend of ongoing programs to help families survive the crisis of childhood illness.  
  • Since 2010, Starlight MidAtlantic has provided a record 4.5 million hours of entertainment to more than 200,000 children receiving treatment at 154 hospitals. 
This month they sponsored a trip to the Auto Show and we knew immediately that Emma would love it there!  Emma is a social butterfly and likes to be in the thick of crowds, lights, action.  Emma's favorite cars seemed to be the convertibles, which is not the least bit shocking to us.  She was excited to check out the cars and threw a fit each time we tried to put her back in her chair.  As you can imagine, she was mostly carried around the show by Chris - dropping her shoes and socks left and right! - while I rolled her chair around.    

I was born to ride in the BMW 6 series convertible!
Get me out of this chair and back into a car - any car!  It doesn't have to be a convertible...

What we didn't know is that Julia would love the auto show just as much as Emma!  She was excited to check out many of the cars and decided on a few we should buy.  Most of Julia's favorite cars were red and included DVD players in the headrests but she was quick to jump in the back of many of the cars to see where she would be able to stow all her gear.  Julia travels with a lot of gear.  It's amazing what all a little girl has to bring with her each time she leaves the house!  

Julia thought the Land Rover had just enough storage for her but the seat was up too high for her to get in/out easily.

The feature of the autos most interesting to me was the trunk.  I looked at the trunk of each car first, sizing it up to determine if a wheelchair would fit and how hard it would be to load it.  I think Julia noticed me looking at the trunks because she started to check them out, too.

Our favorite car was the conversion van that looked like a movie theatre in the inside.  It really was something!  When we found out the price didn't include a driver we decided to move on to look at the Lamborghini and Porsche section because neither of us had any intention of driving that beast let alone parking it!

We did go to a Q&A session with a couple of players on the Flyers.  I have no idea who they are but they drew a huge crowd so they must be good :-)  There was a section for our Starlight group and the ushers were very helpful in taking out chairs so that Emma could sit in the row with us rather than in the aisle.  It was an interesting session but we left it early since there wasn't enough action for the girls.

In addition to all the new cars, we saw some older cars there.  My favorite was this Oldsmobile classic car.  Love it!

A huge thank you to Starlight Children's Foundation for a fun evening out!  

Wednesday, February 1, 2012

Craft night fun

Tuesday is craft night in our house.  Yesterday was such a beautiful day that I thought we should start a fire in the fire pit and roast marshmallows instead but Julia had her heart set on painting her jewelry box that came in a kit she received for her birthday.  

I've been trying to convince her to make a quick and easy Valentine's banner for our fireplace the last few craft nights but she has not been interested.  So, I took out her jewelry box kit and she painted it and made a bracelet for it in about 10 minutes flat.  She likes long craft nights and the 10 minutes it took her to paint the jewelry box didn't cut it for her so she was willing to participate in my Valentine's craft.  

While she was painting her jewelry box, I collected about 6 sheets of pinkish colored scrapbook paper from my seldom-used stash, drew a heart onto some cardboard we had in the recycling pile and cut it out to use as a template.  I turned the scrapbook paper to the blank side, traced 3-4 hearts/sheet and once Julia was done her jewelry box she was interested in the hearts.  She helped me cut out the hearts and then laid them out on the floor so she could see the designs.

I took a pretty pink ribbon and used a thumbtack to attach it to the mantle.  We took out our package of white clothespins and then Julia set about attaching hearts to the ribbon with the clothespin.  By this time Emma was very interested in the project (she sat out a lot of craft night because she was so tired and quite cranky from missing her nap and having extra fun outside in the great weather).  But, once the flurry of activity around the fireplace started Emma joined in by picking out the hearts she wanted to hang and then joined us to hang them on the ribbon.  

This was a super easy project because it only required cutting hearts out of pretty paper and using a clothespin to attach to some ribbon I had in the house.  We had leftover hearts and strung a line in each of the girl's bedrooms once we were done on the mantle.  The house really looks festive and Julia and Emma were really into this craft.  I think we might have to do a similar project with shamrocks, eggs, maybe even flags.