AAC Update: Emma and her Eco2 with EcoPoint

Our journey continues with Emma's AAC device.  Here are some other posts I've talked about what we are doing with her talker if you want to get caught up.  NOTE:  Emma also has a Yes/No response and low tech ways of communicating but for the purpose of this post I'm only focusing on her use of the high tech eye gaze device.  

Emma is now 100% eye gaze again with her device.  She decided that her hands weren't helping her talk like she wanted and agreed to look at the device again.  This is a big decision on her part because we can't make her look at the device and you can't navigate it with your eye gaze if you don't look at the device.  I consider this a great milestone for Emma.  

When we received her talker we had a long discussion and decided to set it up for 60 1-hit Unity.  That basically means it could show up to 60 icons at a time on the screen.  Emma had some success with it but not enough.  I saw her struggle with it and it was frustrating to her and me but I didn't really know what to do about it.  Then we met up with another little girl in our area who is about the same age as Emma and uses a device (a MyTobii) to talk.  She was saying all kids of things with her talker and actively engaged in conversation.  It took my breath away!  After talking with her Mom for a while I decided to change Emma's device to 45 1-hit Unity so there would be up to 45 icons on the screen at one time and they would be larger than the 60.  The less icons, the larger the size of them.  Her device can do anywhere from 45 - 144 icons at a time on the screen.  My plan was to dial the number of icons back and make the bigger and more easily accessible for Emma and see what happened.

The 45 set-up had things laid out a bit differently than the 60 set-up so I spent a Saturday night changing up the icons to more closely match the 60 set-up.  Emma had a lot of the locations memorized and I didn't want to confuse her with having the screen look very different.  Plus I figured I'd like them in similar spots because if she moves back to 60 Unity it would be an easier transition.  The 45 set-up seems to definitely make a different for Emma.  It seems easier for her to actually activate the icon she intends.  You could see her try so hard to activate it on the 60 Unity and get frustrated because she would activate an adjacent icon.  

With the 45 Unity, Emma seems more relaxed and happier to interact with the machine.  It seems easier for her, she is having more success in telling us what she needs, and she is stringing more words together.  She is also using it during working sessions with her SLP at school and has even initiated some interactions with people on her talker.  This is huge since she typically wouldn't use her device at school no matter how much her team encouraged her.  

Here are some things Emma has done since we changed the device, although she isn't very consistent about it.  I think that will come in time and for now I'm happy to see her start to tell me more about what is going on in her mind.  

• She has started to chat more.  She will often use it for several back and forth conversations.
• She will use it to get our attention.  If we walk away to do something or are in another room and she wants us she will say something.  If she wants a drink and I'm preparing it she will select over and over and over again the same icon saying Drink Drink Drink Drink Drink similar from what you hear with impatient children!  It's quite funny to me and always makes me smile :-)
• At dinner one night she leaned over to the table and tried to grab her bottle but couldn't reach it.  She used her device to say the following in under 30 seconds without me modeling what to say first.  It still blows me away that she said this so quickly and appropriately:  "you help drink you get drink get".  I got her message loud and clear - she wanted me to help her get her drink.
  

• Someone came up to her in the hallway at school to give her a marshmallow snowman treat.  Her aide told the person Emma doesn't eat them and Emma immediately said on her talker "don't eat" and gave the person a smile before starting to drive herself away down the hall in her power chair to her Kindergarten classroom.  Her aide was so happy to tell me about that and I was thrilled to hear it.  
• Today when Emma came home from school I asked her how school was and she said "good".  After she told me she wanted a drink I walked over to the fridge to get it and she thought I was taking too long so she said "I want my    ".  I returned around the time she said my so I finished her sentence with You want your drink?  and Emma smiled big to indicate yes, that is exactly what she wanted.  

All this has happened over the last month after a very long stretch of Emma refusing to use her device.  I'm hopeful that Emma will continue to grow and use her device consistently enough to tell us how she feels (especially important to me because when cries I don't know what's wrong or if she is hurting), what she needs, what she wants, how her day went, who she played with, etc.  

Emma has a long way to go before I would consider her conversational in a social setting but I am convinced she will get there and I think it will be sooner rather than later.  Especially since we're going to set up some play dates with her friend with the talker.  Emma was VERY motivated to use her talker after her interaction with her friend.  We are also hoping to send her to the summer session at a local school that specializes in augmentative communication devices and power mobility to help prepare her to hit the ground running in 1st grade.  

Initially Emma's school team was unsure about moving her to the 45 Unity.  They think (as do I!) that Emma is very smart and that 60 Unity will give her a lot more opportunities to speak with less effort.  I was happy to hear they think she is capable of the 60 Unity cognitively but I brought up the observations I've made around her use of 45 vs. 60 and that she needs to get some early and consistent success with the device to help her engage more.  Since Emma doesn't use the device as good at school it was important for them to know what changes I saw at home until she starts to demonstrate the same things at school.  We also talked about her diagnosis of cortical vision impairment since she received the device and we had her vision therapist weigh in on 45 vs. 60 icons in light of her most recent Ophthalmologist report.  Given all this we decided to keep her on 45 1-hit Unity.  

The daily reports over the last two weeks have been really good.  All her therapists report that she is more actively engaged and focused.  She is making a lot of progress in all things and not just communication.  She is doing well at Kid Writing which is something I thought would be super hard for her.  She is doing well with simple addition and subtraction.  She is distinguishing between singular and plural words with >90% accuracy - something that is VERY difficult for someone hearing with cochlear implants.  She is walking longer distances in her KidWalk indoors (she loves to walk outdoors but not as much indoors) and driving longer distances in her power chair.  Emma is just full on right now.  I know from past experience that these periods of rapid progress are often followed by periods of sustaining before she kicks into another period of progress again.  

Preschool Graduate

Emma's preschool follows a 12 month schedule.  They have the same number of school days as other schools but they spread it out over an entire year.  I didn't think we would like this schedule at first but we LOVE it!  I sure wish other schools would adopt it.  There is still a long summer break and several week long breaks through the year.  I think it really keeps the children (and parents, teachers, therapists, etc.!) from burning out and doesn't require all the review in the beginning of the year.

Her school year is now coming to a close and today her class had an end of year ice cream party.  There were several students graduating to kindergarten and they wore caps and gowns and there was a little ceremony.  It was beyond cute!!!!  I teared up seeing Emma in her outfit walking up to get her "diploma."  She stood so tall, so proud.  She looks so ready to take on the challenge of kindergarten.

She has grown in so many ways during her two years at the preschool and has had an incredible team encouraging her in her daily endeavors.  She is loved by her classmates and her team of teachers and therapists.  It was at this school that Emma found her voice (ECO2 device) and met so many of her academic and developmental goals.  It prepared her to take on the world of kindergarten in a way that I couldn't have imagined when she started school.

Emma's friend at school wanted to dance with her to the music so he took her hands and helped her move to the music.  It was completely unscripted and heartwarming. 

Emma loves an audience and attention.  When her teacher put on the graduation music and it was her time to stroll down the aisle she strolled just long enough to get to see the crowd of people and then she stopped.  Typical Emma!  After a bit of encouragement she continued on to her teacher to get her diploma.  I caught it on video and can't stop watching it.  My girl walked down the "aisle" and received her preschool diploma.  What a milestone for her!



Her class performed a song for everyone.  It was about stars shining and growing.  Emma doesn't really sing so her speech therapist set up a touch lamp for her to turn on and off at certain times during the song.  It was a wonderful way for her to participate!

There was a video slideshow of their year and it was so wonderful to watch.  I never tire of the slideshows - it's such a nice glimpse into the magic that occurs during the school year that we as parents don't typically get to see.

So many people came up to us and told us how much they loved seeing Emma each day.  She always greeted everyone with a huge smile and brightened their day.  She will most definitely be missed, but it's time for her to share her zeal for life with a whole new group of people.  Although Emma has a lot to learn in her school adventures that have only just begun, it is evident to so many of us that Emma is so much more a teacher than a student.  She teaches people to laugh with great abandon on a very frequent basis, to smile in the face of adversity and to inspire greatness in others.

The world needs the brightness Emma gives it and we are all the better for having spent time in her own brand of sunshine.  Congratulations our sweet Emma Bean!!!!

*Inch*stone Captured

When Emma was very young, when we first found out about her cerebral palsy, we thought that perhaps only her arms would be effected.  We saw that she wasn't using her arms or hands very good but we thought her legs seemed to be moving around pretty well.  I had researched a ton on CP and found that usually CP has the following effects:

• All limbs effected
• One side of the body limbs effected (i.e., arms and legs on right side of body)
• Legs effected

We wondered early on if it was possible that Emma would "only" have her arms effected and that the rest of her body would work fine.  Doctors didn't really have an answer for me and we started therapy to address her arms.  Chris and I expected that she would walk but maybe have trouble with writing.  Let's just say our expectations have been reset over the years because as of now she is neither writing or walking unassisted.  

Emma had THE BEST occupational therapist (OT) for early intervention and she was able to see her up to 3x/week and made a lot of progress with her hands and arms.  Since we moved Emma has only received OT at school and we've noticed that her arms were getting tighter and her resting position was often with her arms curled up, wrists bent and thumbs inside her fist.  She wasn't always in that position so I hadn't realized just how tight she had become until I noticed that in most of her recent photos her arms were in this non preferred position.  Here is a photo with her left arm in the curled up position, but lots of times she had been curling up both arms.  

I started to worry that most of the doctors Emma saw were not even looking at her arms.  They focused on her hearing, her legs, her hips, her feet, her feeding, her talking, etc.  Everyone I talked to about her arms sort of glossed over my concerns so I made an appointment for her to see a physiatrist and I'm so glad I did!  She is concerned with the whole of Emma.  Not arms, not feet, not ears, etc.  All of Emma and she listened to my concerns about her arms and made some very good suggestions and she is now on team Emma and in our every 6 months appointment rotation which makes me very happy!

Some changes we've made is focusing more on arm/hand/wrist stretches, purchased Benik splints to help her wrists and thumb stay in a more neutral position and added in an extra OT session outside of school (not sure I'm thrilled with the provider, though, so we will likely be looking around for an alternative provider that fits in our schedule).  

Emma with her splints on

The past couple weeks I've noticed some changes.  I've found her sleeping with her arms over her head on several occasions.  She has a hard time raising her arms up high and in rest she typically slept with her arms curled up or with them by her hips. And then this morning when I went in to wake her up she seemed to be starting to stir and she brought her forearms over her eyes and rubbed a few times.  She didn't rub her eyes with her fists, but did slide her forearm back and forth so there was no mistaking it was a rubbing of her eyes before she opened them like most of us do in the morning.  And then she opened her eyes and was a bit startled to see me standing over her smiling down and she giggled.  

When we were in Washington D.C. Emma was resting in the corner of a chair and she brought her hands to her mouth and put her finger in it like she has been sitting like this for years.  She hasn't and it was big news in my book that she was sitting like that while moving her arms so loosely.

Yesterday we visited the zoo and Emma was very interested in the animals - she is branching out from her love of watching people at the zoo to attending a bit more to the animals ;-)  At the giraffes she even reached out for the fence, placed a finger on it (wow, this is HARD to isolate a finger from her fist!) and then her open hand on it before swinging her arm over the whole bar.  I caught a bit of it with my camera and was so excited because this was a big *inchstone* for Emma.  

Emma's starting to use her arms more and it's worth documenting;  it's worth celebrating!  

My heart is full

There are so many times that being a Mother has made me feel the passage of time.  At first it's subtle with little things changing that had me saying Oh, right....she's growing up.  I remember conversations with my friends and we all felt like once we adjusted to whatever the current phase our child was in another one would come along to keep us on our toes.

Julia on Christmas with her Nook and headphones!

For me, it started when Julia was little.  One day we went out and she was content playing with the hanging toys on her baby carrier seat and the next day she demanded more entertainment, different toys she could play with while running errands or going about general life with Mommy.  Then it was the transition from a bottle to a sippy cup quickly followed by no longer having to tote around baby food because she could eat regular food.  It seemed like in no time at all she went from eating bits off our plate to ordering her own meal at a restaurant.  Then there was the huge struggle to contain her - she wanted no parts of a car seat or a stroller and was set on exploring the world.  It all happened fairly quickly and in the first couple of years, right on the schedule most of the books publish.  

Time continues to be marked for me by the little changes that add up to large changes when summed up over a year.  The amount a little girl can change in just one short year still takes my breath away.  Our routines continue to change - for example, she reads books to me at bedtime just as often as I read to her now! - and I'm still caught off guard by it seven years later.  I've found that I love all the changes and the growing and never tire of watching it unfold before my eyes and feel so wonderfully blessed that I get to experience life with Julia.

The passage of time with Emma is different.  She doesn't follow a schedule or change on a dime.  I vividly remember the first time we had to start moving items around on restaurant tables so she wouldn't knock them to the floor.  She was about two and we were eating at a restaurant on Main Street in our old town.  I was holding her on my lap because the umbrella stroller we had with us was much too low for the table and she was unable to sit in a high chair and once we were settled she immediately grabbed the place mats and silverware and tossed them on the floor.  Chris and I looked at each other and laughed, thrilled and still staring in wonder that this milestone finally approached.  Yes, it was much later than Julia but it felt so, so sweet to experience.

There have been other milestones that have hit us out of the blue.  Emma passed through the I really don't want to get in my car seat phase that is unpleasant for those of us required by law to buckle her in and she is fully in the throes of the "I feed myself" phase which makes for some messy meals considering she can't physically do it herself.  She currently demands entertainment while waiting - those that have seen us during our wait times will know that I'm no stranger to tap dancing around and generally make a fool of myself but after 20 minutes it gets old for me (if not for Emma) and I'm oh so glad to pull that little iPad gadget from her backpack!

Emma today waiting on her doc.

Today Emma achieved another milestone and this one took my breath away.  We were waiting in the surgeon's office for a consult on her upcoming surgery and I was playing with her to pass the time.  She was in such a happy mood and I decided she was so cute I needed to kiss her or blow a raspberry on her cheek or something.  She was in her wheelchair with her body facing me and her head looking at Chris and I put my lips together and made the "kiss" sound to alert her that I was going to slowly...slowly...slowly lean into her and plant one on her cheek.  She looked at me and then leaned into me for her kiss.  She leaned into me for her kiss.  And so we played this little game again.  Then she decided she wanted to play along and opened her mouth real wide (her version of a kiss) and leaned into me and placed her open mouth on my cheek.  She kissed me not once or twice but several times laughing each time.  Chris was with me and looked on and commented "That is so cute."  And it was.  It made my heart leap with joy for in that moment my little girl - who knows so much but is trapped in a body that doesn't let her show us just how much she knows - found a way to show me that she knows that game and she not only wanted to play it but she wanted to be in charge of it for a bit.

The passage of time continues.  Milestones happen in the blink of an eye or not.  Either way, I find them so very sweet.

Tears of joy

It's amazing how far Emma has come with her speech therapy.  It has always been her most hated therapy; not because of her therapists (nearly all who were very sweet and encouraging) but because it is so gosh darn H A R D for her.  So more often than not she refused to participate, instead finding fascination in the most minuscule of items.  All her therapists put her in the most bland room where there was nothing to look at in the hope that Emma would participate and not be distracted but she was always able to find fascination in a light switch that never moved or a light that stayed on.  I cried a lot in the early days after her speech and hearing sessions because I just wanted Emma to make some progress so so badly.

When we moved and Emma started at her new school a spark ignited and she started to participate better.  Her SLP is amazing to work with and Emma just clicked with her and let me tell you when a child clicks with her therapist amazing things happen!  Emma started letting her SLP in on all that she knows, first by switches and then through various higher technology talkers as we tried to find the right device to buy.  When Emma picked the Eco2 (her Evie) as her talker of choice we were happy to move forward with customizing Evie with her interests instead of the generic boards of the borrowed devices.

Emma was doing well with the initial word set we created so this week we added in a lot more new words and Emma rose to the challenge.  Many of the words (like please, in, feel, hug) were brand new to Evie and somehow Emma knew just how to use them.  I mentioned on Tuesday that Emma said a few things over the course of an hour that day and I was so thrilled with that because it was the most she used it in an outside the home setting.  Today I found out she has been holding back on us.

I had a meeting already scheduled for today with her SLP and before we got to the reason for our meeting she had to share what happened in her school speech session yesterday.  She had it all written down and was grinning ear to ear about it.  I was in shock at how much Emma said in her session and just have to share.

Below is what her SLP wrote down during the session.  So glad she was able to share all of it with me!  Note: All words selected by Emma via her eyegaze are in italics.  Each word in italics requires Emma to select it so if she says play doll, she needs to select play and then select doll, thus stringing the two words together.

• SLP asked Emma what she wanted to play with.  Emma said doll.
• Then Emma said want Erica and looked over at Erica, her aide, and gave her a big smile.
• SLP didn't have a doll in the room so she was hoping Emma might change her mind.  She selected the toys option and asked Emma to pick again and Emma selected play doll so the SLP went and got a doll :-)
• SLP asked Emma how the doll feels.  Emma said bad
• SLP was confused and so she said the doll feels bad?
• Emma said need
• SLP said need?
• Emma said need hug 
• Her doll needed a hug - oh my gosh how cute is that!!!  So the SLP gave Emma the doll to hug and she hugged her for a long time.
• Then Emma said in stander
• SLP and Erica didn't know if this meant Emma wanted the doll to stand or if Emma was used to being in the stander at that time of day.  So for now we don't know what she meant.
• SLP asked what Emma wanted to play with the doll
• Emma said ball, so they rolled the ball between Emma and the doll and Emma laughed the entire time.  
• Erica left to go to the bathroom
• Emma said want Erica
• Emma again said want Erica
• When Erica came back into the room, Emma said hi and then smiled at Erica
• Then Emma said toy drink smoothie
• They pretended the doll drank a smoothie and her SLP told her it was time for her to go back to the classroom.  The 30 minutes were up.  Seriously, all this happened in just under 30 minutes.  My mind is quite blown away by this.  
• Emma then said play please
• SLP and Erica could not refuse her that request - they were tearing up with all Emma had said and then she said please.  Oh, my!  How could they resist?  So they agreed to play a bit more with her and then said it was now time to go.  
• Emma said want friends meaning she was ready to go back to the classroom where her friends were.
• Then she said (and this is a button that has a phrase in it so it said it all at once rather than Emma having to string it all together) well, I must be going now

I just had to write this down here so I don't forget it.  Did I mention that I'm blown away by all that happened in that 30ish minutes?

Look out, Emma, the bar is set high for you to achieve.  I have no doubt about your abilities and your team doesn't, either.  2013 is going to be your year.  I can't wait to hear all you have to say!

And now I'm off to add Love to the feel words because I can't wait for you to say Mommy I Love You.

8 Years

I remember when Chris asked me to marry him very vividly.  It was after Hurricane Isabella came on shore and caused us to cancel one night of our planned weekend getaway.  I was cleaning up the yard from all the tree debris wondering why it was taking him so long to come over and help.  I soon found out the reason was he was buying me flowers and a stuffed animal along with a bottle of bubbly.  I was so in love with him.  I still am.

The weekend we were engaged my Mom snapped a photo of us and my Dad called it Young Love.  We didn't realize it at the time - because we thought we were older to finally have found love - but it really was young love.  We still laugh about that moment.  I think we'll remember it for many years to come.  Thanks, Dad, for the sweet memory!

Our wedding day was lovely.  I had been sick leading up to the day and had some good medicine that helped me get out of bed and ready for the day.  All my worries about things going wrong were immediately forgotten.  I was surprised at how excited and relaxed I was at the same time.  I couldn't wait for 2pm to arrive - I wanted to see Chris so badly.  I remember that I kept joking with him that he can't kiss me when I come down the aisle and that he has to wait until after the vowels and the priest tells us to kiss.  I find it quite funny that it was me that gave him a kiss when I landed at the end of the aisle and he had such a funny grin and told me under his breath with a laugh that I'm not supposed to do that.  It made me laugh because I had totally forgotten about that and was so caught up in the moment and my love for him.  There was no doubt at all in either of our minds that we were meant to be together.  There still isn't.

And when it was over, before the party, we shared a moment when we both couldn't believe we were married.  And it felt so strange to call someone my husband and him to call someone his wife.  We had a good laugh at it.  I love that the photographer caught that moment and we didn't even know it.  We were oblivious to everything going on around us.  

It feels fitting that we share our 8th anniversary today in the aftermath of Hurricane Sandy.  It all started with a hurricane.  Since then we've had lots of sunshine and weathered some storms together.  We have our bad days but they are much fewer than our good.  

To this day no one makes me laugh as much as Chris.  No one makes me feel so happy and loved like Chris.  He is an amazing husband.  He is the most amazing father.  Eight years ago we were still young love.  Today we are wiser love.  And I wouldn't have it any other way.  

Happy Anniversary, Chris!  I'm looking forward to many more years with you by my side.

First Day Pre-K

Today Emma started Pre-K.  Her classroom is not technically calling it Pre-K but that is what we are calling it since it's the year before she starts Kindergarten.  Unless we keep her back an extra year (we are strongly leaning in that direction!) to get her more ready for Kinder.  Then I guess this is pre-Pre-K ;-)

Today Emma headed back to the same classroom as she was in last year with the same teachers, same aide, and probably many of the same students.  It's not as big a change as you might imagine by the paper announcement she is holding in her photo.  But to Julia the fact that Emma is going into Pre-K is a HUGE deal and she is so proud of her sister - as are we - so we needed to make the day a bit special and mark the occasion with a new lunch box, a sign announcing the day and by wearing her princess necklace to school.

With a lunch box this cute how could we resist?  Not to mention that Emma hugged it in her arms all around the store to show us just how much she wanted that owl lunch tote!  I'm over the moon when she shows such a strong preference for anything when we are shopping.

I wanted to get some great photos of her outside the house with her sign and her sister but just as we were getting ready to go out the door it decided to rain buckets!  In all honestly I was a bit sad about the rainy first day of Pre-k and my missed photos.  Although I should have expected the rain since most things with raising Emma rarely, if ever, turn out as I planned.  And when the sun came out later this morning and Julia and I were complaining how sunny and hot it was when we picked her up from school I realized that today really was a day very similar to our journey of raising our little girl.  A brief storm in the morning followed by many hours of warmth, sunshine and smiles.  I really feel honored that God decided to bless us with our own little Emma sunshine!

It doesn't really feel like school yet - it feels more like she just finished up her pre-school year.  Oh, wait!  She did just finish her first year in this new school only 2.5 weeks ago since she attended summer "camp" for 5 weeks this summer.  Emma's school operates on a rolling year round schedule.  That means she has the same amount of school days/year but they are stretched out over a 12 month period instead of 9 months.  I was skeptical of this schedule at first but now that we lived it for a year I think it's genius!

Here is my big girl once we arrived at school - fashionably late, of course!, due to the horrendous traffic from the storm.  I think I like having the photo at school better than in our driveway after all.  It's a shame I didn't bring my camera and only had my phone to take the picture.  Still, I just love this shot!

Since our life is never cut and dry we have her IEP scheduled for tomorrow morning and we may change her schedule from the morning to the afternoon class.  Or even to an entirely different school.  Our life is ever changing and we are open to enjoying the ride.

Since I didn't have a blog post about Emma's end of year program I might as well talk a bit about it here.  We were invited to an ice cream social to end the year but it was actually a bit of a "graduation" ceremony.  I wasn't really expecting the songs, the certificates, the crowns or the lovely slideshow.  I was just expecting some ice cream and was excited to see that it was a lovely ceremony her teacher pulled together!  There was an ice cream bar with lots and lots of topping options which made all the little ones happy and all the children were wearing t-shirts with the handprints of the children in their class.  It was so cute!  The ceremony also gave the Moms a moment to chat since we on't really get to see each other too often.  It was really quite fun for everyone!

Here is a photo of Emma with her teacher last year - who is also her teacher this year.  We just love Miss Anna!

And here is a photo of Emma with her classmates.  As I mentioned before we weren't really aware of the ceremony planned so some of her friends were on family vacations and not at school that week so it looks like she only had boys but in actuality there were two little girls she loved to play with that weren't there for the ceremony.  Does everyone else think she looks like such a big girl in this photo?  I can't get over how quickly she is growing!

Here is Emma getting her certificate and crown.  She kept knocking the crown off her head and it was quite funny!  She's a bit of a clown that way and was doing it all for show though you wouldn't know it from her facial expression in this photo I managed to snap.

We are so lucky that Emma is at this school.  The way Emma has changed and grown over this last year is nothing short of awe-inspriring and much of that growth and change can be attributed to the stellar team that supports her at school day in and day out.  I'm so glad we moved to make this year's experience possible.  I can only dream of what is in store for Emma this year and I'm excited about the possibilities.  Bring it on Pre-K!!!

Smilestone

The Tooth Fairy visited our house again.  This time we had a tooth to leave under the pillow!

Ridiculous cuteness:

Emma's second bottom front tooth came out on Friday.  At lunch.  And she didn't eat it!  It was itty bitty and I heard the tooth fairy was super excited to have a tooth this time.

Life is good!

Big News!

Emma met one of her milestones early!

It just so happens to be one that I wasn't really ready for... she lost her first tooth!

It's her bottom middle left one.  I found that it was wiggly the other week and last Monday she woke up and it was not in her mouth when I went to feed her.  My best guess is that she swallowed it during the night so I am officially declaring May 14th as the day she lost her first tooth.

We put the tooth fairy pouch under her pillow even though she didn't have a tooth to put in it and lo and behold the tooth fairy left her some money!  Emma didn't seem to notice the money but Julia was really impressed the fairy left her money when Emma didn't leave her a tooth.  She told Emma how lucky she was and that brought on some giggles from my cheeky little one.

Her bottom middle right one is also wiggly.  I think that could hang on for another couple of weeks.  I'm hoping that when it comes out we will be able to put it in the tooth fairy pouch.  We'll see.

In the meantime I think she looks absolutely adorable without her tooth ;-)

Teeth

Having little ones around is a constant reminder of the passage of time.  It appears my girls are getting older.  This weekend Julia lost another tooth bringing the total tooth fairy visits to our house to five (5!)!

Today I was playing with Emma and decided to check her bottom teeth and lo and behold her two bottom teeth are loose!  I have no idea when that happened and am glad I gathered the courage to touch her teeth - she has a mean bite and can't open her mouth when she wants making her chomp a bit like a pit bulldog.    I'll keep a close watch on the teeth now and when they get very loose I'll pull them out to avoid her swallowing them.

I'll end this post with a couple of photos from a typical weekend morning in our house.  We start the morning slowly and ramp up to full energy level by noon.

Detailed Communication Update

Emma has had more than her fair share of evaluations over the last four years.  She has had overall evaluations and individual evaluations for speech, PT, OT, hearing, and feeding.  These lead to areas for improvement, goals, progress to goals, etc.  It's quite tiring as a parent and my strategy for dealing with these is to not really focus on them and instead keep my focus on Emma our precious beautiful child.

We have a very typical family life but lately I've realized that each year I tended to focus on a key area of development for Emma.  Last year it was on her movement because Emma so desperately wanted to move.    She was quite successful and learned to use her crawler to crawl, her gait trainer to walk, and started working on driving a power wheelchair.  This year we continue to build on those skills while we focus on her communication.  Because I so desperately want to hear her "voice" - whether it's communication cards, iPad apps, an eye gaze communication device or her sounds - and Emma is showing more of an interest in getting her voice.

Her team at school is amazing to work with and I am so excited to have them help us navigate the world of communication!  Earlier this school year they used a card communication system, a Dynavox with a head switch, a Dynavox with two switches, and a test of the Tobii Eye Gaze system.  They also started testing the ECO2 from PRC company but it was a short trial because it fell to the ground and broke on the second day.  Let me say that the mount used for the trial will not be the one we will purchase should we choose that device!  It was sent out for repair and our hope is that it will be at the school next week for the test period.  Once we have given Emma a chance to learn and use the ECO2 we will then choose which device to order and then go through the appropriate (and likely long) process of getting insurance to purchase the device.  

We are not only focusing on high-tech options, though.  The main reason is that it is much easier to have a blend of high tech/low tech options while Emma is trialing out devices since she isn't overly familiar with the screens and how to navigate them, custom screens are not all programmed for her activities, and we don't want her to get fatigued too quickly and make communicating harder for her.  So we have implemented a lot of low tech communications that are used throughout her day in addition to the high tech that is used.

We still have the hand signal Yes/No that we use all the time and her team is asking her many times throughout the day to indicate a Yes/No response.  For example, if Emma is on the swings they will push her a bit and then stop and ask her if she wants them to push her some more and Emma will need to indicate Yes/No.  There is also a communication book that Emma has at school with laminated pictures (PECS).  This is used everyday - for example, there is a page with arts and crafts items and during arts and crafts activitites Emma will need to select the tool she wants to use to make the craft such as crayon, scissors, glue, etc.  This helps Emma make a choice, indicate her preference in participation, and helps us reinforce vocabulary.  To facilitate communication with all the children at snack time her SLP added photos of her classmates and is using them to discuss what her classmates are eating and it seems Emma is happy to "chat" at snack.  Colors are also a big focus of her class right now and she has color PECS cards that are used very frequently in circle time, craft time, and individual therapy sessions.  

The huge take-away from all of this is that Emma is taking a more active role in participating in classroom activities.  While many communication opportunities have been available to her all year, in the beginning of the year I would see reports that Emma chose in 1 out of 10 opportunities in the classroom activities.  It would be slightly better in one-on-one sessions in a pull out room.  However, recent conversations have been so exciting because Emma is choosing more than 80% of the time and most times she makes a choice 100% of the time!  This is BIG!  This is REALLY BIG!  

Emma's entire team believes that she is one smart cookie and now we are on a path to really get to know more about her.  Her making choices will allow us to get a better picture of what words she knows, and where she needs a bit more help.  It gives her more control over her activities, her environment, her life.  It is so wonderful to see this change in Emma.  I hope her desire to gain expressive language communication continues to blossom and grow.  

I firmly believe that communication opens a lot of doors for people regardless of their physical abilities and so want this for my little girl.  Thank you to everyone for all the prayers - they are working.  I also want to ask if you would be so kind as to continue to pray for Emma's communication.  We are truly blessed!

Emma walking and playing ball

Emma has been working on walking at school in a Rifton Pacer gait trainer.  Her PT really thinks that Emma will take off on walking once she gets the hang of it - if she is motivated.  The common theme with Emma is that she does what she wants when she wants to - my Emma, she's not really a people pleaser like Julia!  She is motivated by silliness, roughhousing, flying through the air, slides and playing ball.  I know her PT has figured her out by now because she mentioned at her recent IEP meeting that Emma isn't the delicate flower she originally thought when she met her.  No one that knows Emma well would call her a delicate flower!

To help with her walking goal at school I've been giving Emma more time in her KidWalk gait trainer at home.  When used "as is" she tends to get herself "stuck" in it with her legs forward and then she doesn't know how or isn't able to pull her legs back to propel herself forward again.  To combat this, I've started tying a scarf around her thigh to the back of the KidWalk to prevent her legs from going all the way forward.  This is working really well and letting Emma walk around more without me helping move the walker from the back.  It's also making it easier to give her more time in the gait trainer for exploration because she can do things like walk around the kitchen and check out things while I'm cooking and I can help her when she gets stuck in a corner of bumps into a cabinet but I don't have to stop everything I'm doing to help her walk.

Today we were playing ball in the kitchen.  I had an empty box for her to toss a small ball into and she LOVED this game.  We did it different ways - her holding the ball and walking, walking to the ball, kicking the ball to the box, etc.  Here is a short video I took of her walking in the KidWalk and having fun.  You'll notice that she is able to walk without me holding the back of the walker to assist and that she has the scarf tied around her left leg.  Emma really is making a lot of progress in so many areas and I sometimes forget to toot her horn.

So here is me tooting the Emma horn - toot toot!  Enjoy!

Birthday Circle

Today we celebrated Julia's birthday at her school.  Birthdays are a big thing in Kindergarten and are celebrated by the whole class with a Birthday Circle.  This is a new tradition to us and I just love it!

During the Birthday Circle, the birthday child sits on the special cat chair (Julia couldn't wait to sit on that chair!) that is usually used by the teachers to read books during circle time.  The teachers and the students in the class sit on the carpet in a circle and each person is asked to pause and reflect for a minute on why they like the birthday child.  Then, each person in the circle says something that is special or fascinating or wonderful about the birthday child.  Afterwards we sing Happy Birthday and move the name/age card from the one row to the new, older age row.  Family is encouraged to join in the birthday circle and so Chris and I attended it for Julia today.

It was so wonderful to hear what the children and teachers had to say about Julia!  There were a lot of comments on how kind Julia is, how she always plays with the other children and never tells them no when they ask to join in, how she shares so readily, how she is always ready to help her friends out.  My absolute favorite remark, though, was when one of her classmates burst out that he likes Julia because she has a GREAT heart.  I think that totally captures Julia!  It actually made my eyes well up a bit.  Julia sitting in the middle of the circle looking so proud and at the same time checking on me with her eyes to make sure I was listening to what everyone said and when she could tell I did she gave me this little smile.  Both teachers also commented on what they like about Julia and her one teacher mentioned that her classmate who said she has a Great heart really summed up what Julia is all about while the other teacher said that there is nothing that she doesn't like about Julia - she loves everything about her and mentioned some specifics and said she and the class are so wonderfully lucky to have her as a friend.  Then the offered to let Chris and me comment and we added what we love about Julia and I mentioned her silly side, her great laugh that always keeps me smiling and how she is the best big sister I have ever seen.

The Birthday Circle was such a positive experience and so unique!  I just loved everything about it.  After the circle and the song, it was time for lunch so Chris and I stayed and ate with the class.  Chris acted very goofy and the children just loved it!  I stayed for the treat while Chris went back to work.  Julia made the pretzel turtles with M&M candies on top for her classmates and they were a big hit.  After distributing them to the class she was able to pick a classmate to join her in going around to others in the school to give out her treat.  It was so funny to watch all the children start to lobby to have Julia pick them to take with her, but the teacher quickly dispelled the children to allow Julia to pick without pressure.  Her friend and I went along with her and I loved meeting the different teachers she liked so much she had to share her birthday treat with them.  They made such a big fuss over her and the treat and Julia was really shining throughout the whole adventure!

Julia's teacher asked me to come back again and visit with the the classroom and to bring Emma along next time.  She didn't join us today because it was her first day back to school after the break and her schedule didn't match up with the time of Julia's event.  I'm thankful to my father-in-law who came to the house to collect Emma off her bus and hang out with her until I returned home - thanks Michael!

It seems that we are having a bit of a weeklong celebration for Julia's birthday.  We went to Build-a-Bear on her actual birthday since it was still holiday break, then today was her Birthday Circle and on Saturday is her party with her friends.  It sure is a fun week for Julia and I'm so happy to have a whole week to focus on my special little girl!

Happy Birthday, Julia!

Dear Julia,

Today you are six!  Mommy and Daddy can't believe how quickly the time is passing.  It is such a blessing to have you in our life and we thank God everyday that He brought you to us!

This year has been filled with lots of fun and adventure!  Much of it is captured in this slideshow video.  The songs are so YOU (and you requested I use the song Oh Happy Day for this video!) and shows even more what a special soul you have.  We look forward to helping make your 6th year just as special!

Happy Birthday, Julia!

Love,
Mommy and Daddy

Top Ten of 2011

Our Top Ten of 2011 (with a couple of details blocked out for privacy):

School News

Today Chris and I are feeling really good about the school decisions we made for both Julia and Emma.  As a parent it is hard to know if we are making the right choices and it's wonderful to have a day when you can sit back, take a deep breath, and know that for now we are exactly where we are meant to be.

The future is so bright, she has to wear shades!

Chris and I had our first parent teacher conferences for Julia, making it our first parent teacher conference ever (because there is no way that I'm counting the endless hours in IEP meetings for Emma as a parent teacher conference)!  I'm happy to say that they seem to love her almost as much as we do!   They see the same sweet, genuine, caring, brightness that we see in Julia and are thrilled to have her in their class.  Julia has been in kindergarten 37 days to date.  Her teachers showed us her journal with her writing from day 1 to now and it is striking how mature it is getting after only 37 days.  There is punctuation, capitalization, spaces between words now where it didn't exist on day one.  She is on track for many of her pre-literacy and math skills, participates readily in all the class activities, and has many friends.  They described how Julia plays with others, the activities she enjoys (dramatic play tops the list), and the unique qualities she brings to her class.  It was wonderful to hear more about her school life from people who have been brought into Julia's world only recently.  As I said to her teachers, Julia was born with a great heart and compassion and we can't take the credit for that but we are truly honored to get to raise her as our daughter.

Since it was parent teacher conferences, Julia had the day off from school and joined me to drop Emma off at school.  It was her first time seeing Emma's school and she was so happy about it!  Miss Anna (Emma's teacher), Miss Marie (Emma's aide), and many of Emma's therapists put out a warm welcome to Julia.  Emma was smiling from ear to ear, too, while Julia toured her classroom, saw the equipment she uses, met her teachers and therapists and friends, and walked the school halls.  Julia often wonders about Emma's time away from her and always has a lot of questions about Emma's school.  It was so nice to be able to show her what Emma's day is like so she could put faces and places to my descriptions of Emma's daily routine.

As is typical, Emma rode the school bus home and Julia liked seeing Emma's bus and meeting her bus driver and driver's aide.  My parents were here, too, since I was at Julia's school for the conference.  Emma was delighted to see everyone waiting for her arrival!  This child loves people and having her grandparents and sister greet her at the bus likely put the biggest smile on her face.


When I got home I looked in her communication book so I could ask her about her day and saw this note from her speech language therapist:

• "Emma did a great job using the DynaVox (AAC device) in the classroom to make song choices.  I have hand puppets for some of the songs that she likes to sing.  We sang 5 Green & Speckled Frogs on Tuesday with hand puppets (which she loved!).  She went right to that choice and used her hand switch to select it.  I looked in my bag and realized I forgot the frog hand puppets (oops!).  Then I told Emma "I don't have the frogs today, but I do have Twinkle, Twinkle and Old McDonald."  Before I could look up to help her make the choice, Emma used the DynaVox to say Twinkle, Twinkle!!! She is doing so well :-)"

Our big girl is going places (with her communication!).

Wow!  I have tears in my eyes writing this now.  This is only the 2nd time Emma has used the DynaVox ever and the first time in the classroom with all the kids in the room.  And Emma wanted to communicate!  She wanted to play the games.  She wanted to use the DynaVox to tell her SLP what song to sing.  And, the 5 Green & Speckled Frogs is the 6th choice out of 6.  Emma had to use the head switch 6 times to get to that choice and then use her hand to select it.  The DynaVox she uses is with switches, not eye gaze yet.  The fact that she has figured out how to use this system after only ever seeing it for 2 times give me so much hope for her expressive communication options.  Chris and I are 100% sure we made the right choice in moving - it's amazing how a different approach to communication can open our child's world.  


Tonight we will rest a bit easier knowing we are exactly where we are meant to be and that is not something we take for granted.

Seven Years

Seven years ago today was simply wonderful!  It was a Saturday morning and the air was crisp - exactly what you expect during Fall.  There was a slight drizzle in the air that morning but it was all clear by the afternoon.  The trees were full of color and there were lots of colorful leaves on the ground.  It was the perfect wedding day.

Me and Dad stop for a last minute comment before he walks me down the aisle.  

I woke up excited that I wasn't as sick at the previous night.  I was able to get up and walk around and I was so happy!  I called Chris that morning to see how he was doing and let him know that I was feeling a bit better.  I knew he was worried about me because I was very sick the night before.  Luckily the doctor had given me some great medicine to get me back on my feet and it did the trick.

We were saying that we couldn't believe we were actually married and laughed about it!

I remember our wedding day like it was yesterday and I'm stunned that seven years could pass so quickly.  My Dad made sure all the leaves that had fallen were swept off the Church steps for all our guests.  My Mom made sure our house was ready for guests to spend some time between our wedding and the reception.  I went with my family and friends and had my hair done and was surprised that there was so much extra time between my hair and make up and the time I had to leave for the church.  I didn't really know what to do with myself - I was anxious to see Chris and 2pm couldn't come fast enough for me.

The bubbles really made the day feel super festive!

That day we didn't know where our life together would take us.  What we did know is that it felt so right to be together.  That we were committed to meeting life head on together, for better or worse, for the rest of our lives.

And for the last seven years that is pretty much what we have done.  I couldn't have asked for a better partner in life.  Both of us truly believe that it was God that brought us together (and keeps us together!) and we feel blessed.

Thank you, Chris, for loving me so very much the last seven years.  I'm not sure what the future holds for us but I am excited to meet it head on together.

Potty Talk

Right around Emma's third birthday we started using the potty with her.  She seemed to get the hang of it pretty quickly and was really proud of herself when she went.  We tried to carry over the potty training at school but they weren't really good at putting her on the potty.  They didn't seem to want to do it and only after I asked them every....single....day about the potty did they put her on a couple of times.  Emma never did go on the potty at the school for them and I think it was mostly because the infrequency of it and the lack of a supportive potty and ample amount of time allotted to potty.  Needless to say, that made it pretty hard to potty train our little one.  Plus, it was really hard on my back and so we put the potty training on the back seat for a while.

This summer we took a long trip to Ireland and moved, putting potty training to the very bottom of my list of priorities.  Truthfully, it's much easier to just change Emma's diaper than figuring out all the intricacies of  potty training a non-verbal, non-mobile little girl.  Once we settled down in the house we figured it was time to start potty training again and started up again with our little wooden potty.  We also talked with her OT about ordering an adaptive one for our house.  Potty training was ON!

Emma at fountain in Love park.  Fountain is purple in support of ending domestic abuse.  She looks so grown up!

We set a schedule to sit Emma on the potty and decided to stick to it for a few weeks so Emma could get the rhythm of going on the potty and could start to anticipate the times she would get on the potty.  My idea is that if she knows there are certain times she will get to go, then she will start to hold it in anticipation of her next opportunity.  Right now she doesn't tell us when she has to go, but she does make sounds when she is all done and ready to come off the potty so that's at least a start.

Key to all of this potty training is carryover at school.  Emma really is becoming a big girl and she really wants to do big girl things and going on the potty really makes Emma proud.  I didn't want our second attempt to fail like the first and I was so happy that her school was completely on board.  The day Emma started school they set her up in a potty that gives her amazing support.  It was fitted and cleaned and available for her exclusive use on her second day at school.  The first time she used it, she went on the potty!  Horray for going at school!

We've been working on potty training for a couple of weeks now.  It's going ok.  Some days are better than others, but the last two days have been amazing with lots of dry diapers!  The biggest challenge I have is what to do when we are out in public?  Public restrooms are so not set up for us.  And from what I can tell there aren't any portable potties for kids like Emma.  I've asked around and no one has any great solutions.  Maybe there just isn't any good solution, but if anyone reading this has any ideas please let me know.  In the meantime I'll dig out our traveling fold-up potty seat we used for Julia and hold Emma on the potty.  I can already feel my back hurting thinking about it ;-) but Emma is so worth it.

Here is our current schedule of when we place Emma on the potty:

• After waking up
• When she arrives at school she has her hearing/CIs checked first thing, then off to the potty.  That is about 8:45am.  On days when she doesn't have school, we do ~30 minutes after her morning drink
• Snack is at 10:30am so her next potty time is 11am.  
• School ends at 11:15 and she arrives home around noon and I put her on the potty again once she gets home.  
• After lunch but before nap - she doesn't usually go at this time so I might end up taking it out.  
• After nap - she has been waking up dry and so this is a key time to put her on the potty!
• Before dinner
• Before Bath
• Before Bed

Emma is using the Rifton Blue Wave Small at school and we are ordering the same one for our house.  She looks great in it, has show that she has no problem using it successfully, and it's nice to be consistent.  Plus, it has a couple of features that are nice like going directly over the toilet or using a pan, a tray to set her arms to keep herself upright (might not need to use all the straps), and wheels to move it around easily.  I have no idea how long it will take before we get it approved so we are using our wooden potty seat in the meantime.

My big girl getting on the school bus!

Her school also set-up a checklist that they include in her communication book everyday.  It has four columns on top:  Sat on Potty, Urinated on Potty, Urinated in Pull-up, Notes.  It has two columns on the side:  8:45am, 11am.  Her aid puts a check in the appropriate spots.  This morning she had a check at 8:45am sat on potty, 8:45am urinated on potty, and 11am sat on potty.  I love that I know what is happening with potty training at school.  I love that they are so responsive to my requests - I only asked once if they could let me know if she is "successful" on the potty and the very next day they started to include this checklist.  They also made a checklist for her equipment and time in each so I know what equipment is used during the day and can make decisions for what to use at home.

All smiles when she arrives home from school!

I'm hopeful that this time Emma will be fully potty trained.  I'm even hopeful that she'll have to add princess underwear to her Christmas list.  I know pull-ups will continue in our future - especially when an accessible bathroom isn't viable and for bedtime - but I am so very proud of how Emma is doing and will follow her lead to when the timing is right to take the leap forward to underwear!

Birthday Party

Birthdays are important and are meant to be celebrated.  In our house it's mostly just us girls that like to celebrate because Chris would like nothing better than to have his birthday pass without anyone noticing.  Julia starts planning her next birthday party the day after her party.  It's a topic she talks about frequently throughout the year.  She also loves to throw parties for her stuffed animal's birthday and we have even made cupcakes, bought balloons and made cards for those parties!  Emma loves to be surrounded by people which makes parties a big hit for her.  She also loves to look at pictures and watches her yearly birthday videos A LOT!

This weekend we celebrated Emma's 4th birthday Emma style - surrounded by family and friends!  I always love parties at home - it's nice to include all the children in a family! - which works better for the October birthday than the winter months so we had the party at our new house.  The weather was picture perfect and we were able to hold most of the activities outdoors, giving the children a lot of space to spread out and play and burn off some of the sugar from the party.  I've learned that I enjoy the parties much more when we keep it simple.  No fuss food, a great cake, face-painting and a few games.

Emma loves musical chairs.  I found this out at a local restaurant family night where she squealed and laughed when we joined in the fun.  So we had to have a fun game of musical chairs today.  Most of the children had a lot of fun with the game, but it was hard for some when they needed to leave the game before they wanted.  We also had a pinata filled with candy.  This was the first time we had one and it seemed to go over well.  Emma has a very silly sense of humor and whacking a cute colorful donkey is her idea of entertainment!  (Or, rather, watching the other kids whack the donkey is fun but she wasn't as interested in it when it was her turn.)  The kids especially loved it when the candy came out and I'm hoping they didn't eat it all at once or their parents might not come for our next party ;-)

For Emma, the highlight at any birthday party is singing Happy Birthday.  She just loves that song and enjoys it even more when she is the center of attention.  If you ever want to see huge smiles whip out the Happy Birthday song in Emma's company and you won't be disappointed!  This year's party theme was the colors of the rainbow and so I made a rainbow cake and used candles that had colored flames.  The cake was a hit with everyone (even though it was a bit trickier to make than I expected) and there was lots of frosting among the six layers to satisfy the birthday girl.  As you can see in the photo below, Emma dug into the frosting even before we sang to her and she loved it!

We are truly blessed to have so many family members and friends help us celebrate Emma's birthday.  Thank you to everyone for making the event so special!  And a super special thank you to my sister for providing the great face painting!