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Wednesday, December 26, 2012

'Twas the Night Before Christmas

It's my favorite night of the year.  Mass followed by family gathering.  Arrive home and set out cookies for Santa.  Tuck children into bed and wait for Santa's visit.  After it is all done, sit and soak in the glow of the tree and enjoy the peace and tranquility.  Merry Christmas!






Sunday, December 23, 2012

Christmas Eve Eve

I love that Christmas Eve and Christmas fall on a Monday and Tuesday this year because it gives us the entire weekend to relax a bit and spend time together as a family.  The girls have been feeling under the weather so we've been pretty low key lately and have mostly been watching the Christmas shows in the glow of the tree lights.  Today we were ready for more action so we baked some cookies in the morning and this was the first year Chris and Emma joined me and Julia in the kitchen.  Both really added a bit of excitement to our standard cookie baking activities.  Let's just say Emma kept inching the cookie sheet away from Julia until she finally had it in front of her and then....well, let's just say she was so excited that she decided to see if the cookie sheet could land facing up if she pushed it onto the floor.  As for Chris, he was a bit overzealous in making a sugar cookie snowman and it turned out looking more like the State Puff Marshmallow Man.  We named that batch of cookies (yes, it was the same one Emma tossed on the ground!) the batch of misfit cookies.

After the kitchen adventure we hit the road to take on the city Christmas attractions.  We visited the Comcast center for the show, walked through Christmas Village and enjoyed Dickens Village in Macy's.  We were shocked that Santa was at the end of Dickens Village and that gave the girls a last chance to adjust their Christmas wish lists when they sat on his lap.  I want to give a special shout out to the amazing Macy's employee who saw us gape at the at least two hour long line to get into Dickens Village knowing full well Emma would never make the wait.  This amazing man took us aside, brought us through the employee entrance and dumped us right inside the start of Dickens Village!  It all happened so quickly we didn't get a chance to thank him, but he really did put the magic in our day today!  Thanks so much!!!!!!!

Here are a few photos I took to capture our day in the city.  Enjoy!


Saturday, December 22, 2012

Neighborhood Santa Visit

There was a lot of excitement around here this morning as Santa paid our little street a visit.  The children were all giggly and excited waiting for his truck and I just love the sound of that - it's like heaven on Earth!  Thanks for the visit Santa!  The children are more excited than ever for Christmas, now.

(Note:  Emma was whisked out of bed, dressed quickly and outside waiting for Santa before she barely woke up!  My little night owl who loves sleeping in just cracks me up ;-) so I had to have a bit of fun with her in the photos.)






Monday, December 17, 2012

Snapshots of life

Mommy take my photo so everyone can see how I look like a Bunny without my teeth!

No, no.  I'm quite sure these boots were not made for walking.

Saturday, December 15, 2012

Look Ma, no hands!

Emma's doing really well with driving her power wheelchair now that she is able to control it with head switches.  The head switches have been on loan for a couple of months and I *think* we need to give them back this month, but I'm hoping her team will see the video below and let us keep them a bit longer because Emma loves to drive her chair!  (Note:  Yes, I know she is missing a show in the video. I also know her feet are not strapped down.  There is a good reason for both, I'm just choosing not to tell it here....)



A few key things you can see in this video show just how skilled Emma is getting at driving her chair.

  • She wants to touch our car so badly that she moves her chair so she can touch the car, adjusting her driving a bit to get closer to touch it, without driving into or bumping into our car.  So cool!  
  • When she hits the lawn chair and Chris tells her to stop she pulls her head forward, which stops her motion.  
  • She doesn't have a reverse option yet and has learned to turn herself around in a circle so she can then drive forwards to areas that were previously behind her.  
  • With the boxes, too, you can see that she stops before she hits them (for the most part;  we had been playing a game of knock the boxes over before I took the video) except for when we tell her to plow the boxes over.  
  • She is getting really good at knowing when to stop and fine tuning her driving and this has all been since we've had the head switches so she's acquired these skills in about 8 weeks with only practicing on fair weather days when we can do it outside.  

The power chair Emma is using (on loan for as long as necessary from a very generous friend!) has battery and drive motor issues that causes it to pull to one side and are, apparently, expensive to fix.  That plus the need to purchase head switches resulted in the wheelchair clinic recommending we buy a whole new system for Emma because it will have a similar cost but include all the warranties.  Sold!  The challenge is she received a manual chair in March 2012 so they are trying to space out the request for the power chair to have the best chance of insurance approving it.  I plan to set up an appointment at the clinic to order one in January.  Fingers crossed insurance approves it without much fight.  Can't you just see Emma running around the neighborhood, school, and the mall in her own chair?  I can!  I really can!  And I find that idea so exciting!

And while Emma is starting to make some real gains in her communication and is demonstrating great joy and skill at using her head-controlled power chair, my heart is feeling a bit confused these days.  The change we are seeing from her is incredibly significant and makes my heart swell with hope and joy.  Each and every one of these gains has taken years to get them and are a cause for real celebration.

Yet, we have some friends that aren't so lucky.  Friends that are struggling with their children this holiday season.  Friends whose children may never gain the skill set Emma is starting to achieve.  Friends whose children once had the skill sets whose children are in a decline with very precarious health.  We say prayers for them every night.

So, it feels a bit bittersweet sometimes to share all Emma's accomplishments here knowing that some reading this blog are on a different road.  This season we are praying that those families receive a Christmas miracle of their own to celebrate.

 

Thursday, December 13, 2012

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.

Wednesday, December 12, 2012

Hopeful Parents

My monthly post for Hopeful Parents is up.  This month it's about something near and dear to my heart.  Click on this link to go read what I wrote in Life Changing Devices.

Tuesday, December 11, 2012

What did you say?


This past week Emma was cranky.  A bit off and quite whiny.  Since she can't talk it's not a fun state of affairs when this happens because listening to constant whining is not my idea of fun.  I'm anxious for the time when she is better at using her talker - it can't come soon enough.

Last week her SLP and I decided that Emma was making good progress with the words on her talker and it was time to add more.  We added more core words and fringe vocabulary.  Basically, what that means is that when Emma chooses one of the main core works on her screen, the row at the top offers her a variety of fringe words.  She can now say "in" as her core word and the her top row (aka the activity row) gives her the option of saying "wheelchair" "stander" "walker" "crawler" "swing" etc.  We also changed up the activity row for the "want" core words so now she can say "Erica" "iPad" "Mommy" "Daddy" "Julia" "friends" and a few more.  Erica is her personal care assistant at school and friends is just generic to encompass either her friends at school, her friends at home, etc.

Last night I also added in "feel" to the core words.  Her options under feel are "good" "bad" "happy" "excited" "mad" "hurt" etc.  I am hoping working with these words will help Emma tell us when she isn't feeling good and where she doesn't feel good.  She knows her body parts so if she tells me she "feel" "hurt" then we can go to to body parts page and she can tell me what hurts.  This is one of the most exciting things about Emma's talker - that she will be able to let us know what is wrong with her instead of us trying to constantly guess from her whines.  It will be life changing - at least for me even if she doesn't think it is for her ;-)

None of this matters, though, if she doesn't use Evie.  We are finding ways to increase her access to it while at home and are also mounting it on her wheelchair whenever she is in it.  We are modeling the device for her to teach her how to use it.  For example, when people say hi to her we show her where "hi" is on Evie and we push it.  Our goal is to have her look and say "hi" to others independently.  We also show her "go" "bathroom" or "need" "toilet" when it's time to go to the potty.  We do this over and over again throughout the day on our various activities, changing the buttons we push based on what we are doing.

Our efforts must be paying off.  Emma has independently commented in her classroom at school.  For example, during art she has for scissors, markers, glue, etc. without prompting.  She has also used a few other words in her classroom.  This is big stuff.  Especially for my little girl who would prefer to go through life as an avid observer rather than work at communication.

Today, though, I got really excited when she said "hi" to her PT when she came out to get her for her session.  I think this is the first time she independently and self-initiated a conversation!  Then when we went back to the room Ms. Cindy had out and Emma's favorite swing and she got really excited.  She said "in" "swing" and Ms. Cindy promptly put her into the swing.  When her session was over she said "eat" "drink" and I told her she would get her lunch once we drove to her school.  She smiled and then said "need" "toilet".  So we went to the bathroom with the little bitty toilet in it (it's Emma favorite toilet ever!) just before we left.

I think all our focus on Emma's communication is starting to pay off.  I pray these aren't isolated communications from her but rather are the start of lots of chatting with my girl!  I hope one day to catch some of this on video so I can share it but Emma's a tricky one when it comes to cameras.  She loves to get her photo taken and stops everything she is doing when she gets even the hint that a camera or video is around.  I'll have to try some covert video operations to capture her progression with Evie.

I'm so thankful that God is helping make things click for Emma and she is starting to use Evie more. Here's to getting us on a path where whining and us guessing what it could be about are a thing of the past.

Friday, December 7, 2012

Winter Concert


Julia's school had their 1st and 2nd grade Winter Concert today.  They have been practicing for months and the children were so excited!  The theme this year was Being human:  Human be-ing and the concert was "the creative outcome of learning and sharing what is truly unique and magical about being human."  Doesn't that sound lovely?

It was.  The music teacher does such a great job with the children and he seemed to be having as much fun as them.  It certainly made for a festive atmosphere!  The children have no inhibitions and gladly sang their hearts out, sounding like little angels.  The concert was about 50 minutes, 12 songs in all, and it went by so quickly.  I could have sat there listening to their little voices and watching their hand gestures and seeing them bursting with enthusiasm for much longer.


Emma was captivated by the show.  She sat at attention the entire time and when everyone was encouraged to clap along to the music she gladly brought her fists almost together over and over.  It was wonderful to see (I've never seen her do that before!) even if it would have looked like she was flailing her hands wildly about to the *untrained* eye ;-)


I love watching Julia on stage.  She has no fear of an audience and likes being in the spotlight.  Some of the children would sway about and make the grand motions that went along with the songs, but not Julia.  She is one of the more reserved children; a bit more serious than some of the others.  You could catch a bit of her wild side if you looked closely for her little smirks, sideways smile and bit of extra swing in her hips.  It's fun to see that side of her.  I like when she lets loose and we are always encouraging her to test her boundaries more.

After the concert, Emma and I worked at the book fair until it was time for lunch.  We joined Julia in her classroom to eat and were surprised to find Julia had set out a couple of place mats for us at her table.  Yellow for me and purple for Emma - she picked our favorite colors!  Once lunch was done we left and were happy to arrive at the car before our meter expired since I found out today the expired meter ticket price is a steep $36!  Then we were off to tour a school I think would be a good fit for summer school for Emma this year.  We'll see how that plays out.

What a great way to end the week!



Thursday, December 6, 2012

Senate doesn't stand up for worldwide disability rights


This week - Tuesday, December 4th - the Senate had a chance to ratify the United Nations treaty on the rights of the disabled.  It is modeled after the Americans with Disabilities act, was drafter under President George W. Bush and is a great step forward for people with disabilities around the world.  It should have been a no-brainer for the Senate to ratify it.  But it wasn't.

Former Senate Majority Leader Bob Dole made a rare appearance on the Senate floor in his wheelchair to try and sway the Republicans to vote Yea on ratifying this treaty.  They did not.  In all, 38 Senators voted NAY and refused to stand up for disabilities rights around the world.  All 38 Senators were Republican with Senator Mike Lee (R-UT) leading the charge and supported by former senator Rick Santorum (who, sadly, hails from my state of PA).  And I can only think to myself that the Republican party is supposed to stand for Christian values yet decided to do nothing for the disabled.  I am happy that in all 8 Republicans - including Senator McCain - did vote Yea to the treaty but that just wasn't enough.

For more information, here is an article from the Washington Post and here is an article on politicususa.

Senator Toomey from PA voted Nay.  I called his office and told him I was not happy with his vote.  Senator Casey from PA vote Yea.  I called his office and thanked him for his support on this treaty.   I encourage others to do the same.  Their phone numbers are:

Senator Pat Toomey:  202-224-4254
Senator Robery Casey:  202-224-6324

Want to know how your Senators voted?  Click this link to see.

And for a bit of perspective, Jon Stewart did a great bit on this issue called Please Tell Me This is Rock Bottom.  As he puts it - "Republicans hate the United Nations more than they like helping people in wheelchairs."


The Daily Show with Jon StewartMon - Thurs 11p / 10c
Please Tell Me This is Rock Bottom
www.thedailyshow.com
Daily Show Full EpisodesPolitical Humor & Satire BlogThe Daily Show on Facebook


That about sums it up.  I hope this isn't what we will see for the next 4 years because, after all, we live with a government for the people by the people.  Your representatives vote for YOU.  Make sure you call them and let them know how they are doing with that job.  It only takes a minute.

Monday, December 3, 2012

General musings

The weather today is gorgeous!  A rare Fall day that doesn't feel like winter and will go up to about 60 degrees.  Everything seems a bit easier when the sun is shining and the weather is fine. I guess when it comes right down to it my main beef with winter is the hassle from coats getting situated in wheelchairs and car seats.  Thankfully, we don't have to deal with any of that today!


Emma woke up bright and early for herself and was in a ridiculously happy mood - even for a little girl who typically oozes happiness.  We spent a bit of time doing some hand stretches and hand playing - where I would open my hand and stretch it out and have Emma copy me and then I'd put her hand in mine and we'd wiggle them around.  I'm noticing that Emma's hands are getting tighter and tighter and that makes me nervous so I've been trying to stretch them more and finding ways to make opening them fun.  If anyone reading this has any ideas on how to stop her hands from getting so tight, please share (Annette - if you're reading this maybe we can plan a visit so you can give us some tips???  plus, we miss you a whole lot!!!!!!)

I smiled when I noticed Emma and Finney seem
to be looking in the same general direction!


Last night after Emma had her hair blown dry Julia took one look at her and said she looks different.  She looks older.  I agree.  My girls are growing up so, so quickly.  So today I brought my camera on our walk and decided to take a photo from behind to capture what I usually see from my vantage point on our walk.  Emma is usually looking all over the place with Finnegan leading the way while I try and manage to keep them from getting tangled up!  Emma loves to toss her head about and look back to see what I'm doing.  She usually looks up and over the headrest but today since she didn't have her chest harness on she decided to lean forward and give me a backwards glance.  She always gives me a sly smile as if saying "Just checking that you are still there - that you still have my back."

I've taken photos like this before and think about how much has changed.  In the beginning it was in her Kids Up FAST chair and my view of Emma was always with her little hat on which was the only way we could keep her CIs on her head in the early days.  It always seemed like she had such a tiny little head and eyes and smile a million miles wide when she looked back at me.  Always taking everything in while we walked.  When she was about 3.5 we were finally able to keep her CIs on fairly regularly without her hat at I just loved the look of the back of her head with the little ponytail on top swaying side to side each time she snapped her head around.  And now my view is of a lovely little girl with her hair held back by a fancy clip and her CIs mostly hidden under her hair.  She is in a big girl chair and now more often than not she has her talker attached so she can "chat" if she wants.  Mostly she doesn't want, but I expect that will change over time.

One thing I hope doesn't change is Emma's love for school.  She is so excited each and every day when her school bus arrives.  Lucky for me she is equally excited each day as her bus drops her home.  Her drivers said they've never seen a child so happy to both go and come home from school.  They just love having her on the bus and especially enjoy when she treats them to her "singing" on some of her rides home.


Life is good, even if it does seem to go by at warp speed sometimes!

Saturday, December 1, 2012

The joys and heartaches of play

Last month my post at Hopeful parents was titled The joys and heartaches of play.  I posted a link to it on my blog but thought I'd like to post the text here so I could have it should I actually get around to printing out this online blog one day!

The joys and heartaches of play

Sometimes I let my mind get the better of me.  Instead of experiencing things for what they are I imagine what they could have been.  I do this sometimes.....and yesterday was one of those times.

We were at a birthday party for some good friends.  Everyone knows us.  Everyone knows Emma.  These are really easy places to socialize because I don't get the pity look - the oh, poor thing in a wheelchair look.  None of us want pity because our life is not something to be pitied.   I also don't get the somewhat ridiculous question of "Will she ever walk?"  Truth be told, I'm not too concerned with Emma walking and would rather she start talking - now that would change her life!

The birthday party was the kind where there were bouncy castles and houses all over.  All of them in primary colors and you can't help but smile when you walk in.  It fills the children with energy and there is lots of laughter and squeals all around.  It's a happy place and we love happy places!

We've been to these kinds of places before and Emma loves the bouncy fun.  But this time the bounce houses weren't adult friendly.  The size and navigation of them were made strictly for children so I couldn't take Emma through them without likely hurting myself.  There was one large structure that was made for littler children, but since Emma isn't crawling she couldn't really navigate through and it wasn't so exciting to her.   We were able to make one of the large bounce houses work - I put Emma in through the opening and laid her on her back like we usually do and when the children bounced around she was bounced.  She smiled the whole time and really giggled when the children bounced over her while being careful not to fall on her.  For all the other structures, though, she had to look at all the fun from the side.

I think Emma really wanted to go on the large bounce slide.  She squealed with delight each time we went over to watch her sister slide down and I felt bad that I couldn't take her on it.  Actually, I'm not sure I could have navigated the slide on my own let alone while carrying a 5 year old!  I also felt bad that she was looking on lots of the fun from the outside and I started to wonder what it would be like if she could walk.  What it would be like watching her climb up the slide wall and squealing with delight as she slid down.

Then I wondered if it would have been better if I didn't bring her to the party and I realized it was my hurting heart that brought me to that question.  Me not wanting to feel how different my little girl is when in a roomful of children and cheery bouncy houses.

But I know that wouldn't be fair to Emma.  When looking at her in that room she was all smiles.  Enjoying watching the children run around, bounce, squeal, hula hoop, climb the rock wall.  She enjoyed every minute of it even if she couldn't physically participate in the fun.  She was able to participate by just being there.  By being happy in the moment.  By experiencing joy.

I say it again and again - I learn a lot from my children.  So I finally decided to take my cue from Emma and just enjoy the moment and not get caught up in the what ifs.  To live life to the fullest and full of joy no matter the obstacles.  Thank you, Emma, for the reminder!

Friday, November 30, 2012

A girl and her horse


A local foundation gave Emma a one-time grant that we are using to help offset the cost of her therapeutic horse riding.  I can't even begin to explain how thrilled we were to receive it!  Emma has been riding for several years and really loves it.  It's a great extracurricular activity for her and it is really good for helping to improve her body strength.

When we moved it took us a few months to find a new place for her to ride.  It's a beautiful farm and has one of the oldest therapeutic riding programs in the country.  The people are so friendly and welcoming and Emma's instructor is just great with her!  The place is a great fit for us but it is significantly more expensive than the place she used to ride.  This isn't very surprising since the area we moved to is generally more expensive.  The cost is a stretch to our budget but we believe Emma gets a lot of social as well as therapeutic benefit from her riding experience - not to mention how joyful and giggly she is when we are driving up the driveway - so we are committed to keeping her riding.  When we found out that she received a grant from Johnny's Rainbow Foundation (JRF) we were so excited!

I am working on creating a thank you note to send to JRF and want to include photos of Emma riding her horse Pork Chop.  I want them to know how much their generosity is appreciated and want them to see the big smile on Emma's face when she is riding.

Our journey through life with Emma has introduced us to some of the most amazing, generous people.  We are truly blessed!


Thursday, November 29, 2012

Hope


Hope.  I find hope very interesting.

You always want to have hope but the act of having hope can leave you quite vulnerable for disappointment.  We had hope when Emma was little that her CP would be mild.  We had hope that doing some alternative treatments while she was young (for example, HBOT) would prevent her from having to undergo surgeries for various side-effects from her CP.  We had hope that Emma would start talking after she received her cochlear implants.  We had hope that Emma would start sitting or walking or *you name it* because we have seen some of Emma's friends start to do just that.

Although quite a few things I hoped for did not pan out, I do still have significant hope - it's just a more guarded hope.  It's a more patient hope.  It's the type of hope that is open to answers to our prayers that is different than the way we imagined.

This morning we had time before Emma's bus came so I decided to put her in her wheelchair with Evie mounted on it.  We've had a bit of a routine where we will go outside for a walk with Finnegan about 10 minutes before her bus is scheduled to arrive and both Emma and Finnegan look forward to this morning outing.  I had been setting the talker on Emma's tray table while she sat in her ChildRite chair so Emma could request a morning activity - she usually chose the walk.  Lately she was refusing to use Evie in the morning (see this post) so today I decided to change our approach.  I put Emma in her wheelchair with Evie mounted to the chair and left the room for a moment.  While I was gone, Emma said Go a couple of times and was all smiles when I came back and told her I heard her ask to go.  She didn't say walk or outside, but I was happy she asked to "go" so quickly and without any prompting.  And she was so proud of herself - it was written all over her face!

Monday was Emma's first day back to school after a week off.  She has speech therapy on Monday and Wednesday and the session on Monday typically occurs in the classroom and Wednesday is typically a pull out for 1 on 1 work.  The classroom sessions are generally less productive than the pull out because Emma is a pro at ignoring Evie and her therapists when her peers are around.  This week was different, tough.  Her SLP reported that Emma picked a princess magnet game activity to play, paid attention to the game and said multiple {activity appropriate} words spontaneously without prompting!  The words were Go, Frog, Stop, Play and a few others that I don't remember right now.  This is unprecedented expressive communication from Emma!

Expressive, self-initiated communication from Emma.  What Emma chooses to say is appropriate and she uses words in proper context.  It's sporadic but it is deliberate.  It's different than what I had imagined - but it is happening.  And it is OH SO SWEET!

Hope continues to live inside me.

Monday, November 26, 2012

Surgery - what to cut?

Emma today.  My little Miss Sunshine.
Today was a mixed bag.  We started out the morning with an appointment with a surgeon at a local Shriner's hospital for a second opinion for Emma.  The hospital was amazing.  The people were so very friendly, they were able to get us in for a second opinion without a long wait, and they even provided free parking in the downtown location!  I am sure that magic occurs there daily - heck it's definitely magic when a family knows their child will get the medical care necessary even if they do not have money or insurance to pay for that care.  In this day and age that is so very, very special.

The second opinion was for the adductor release surgery and hamstring lengthening her doctor recommended.  You can learn more about it in this post here.  The doctor we saw today was nice.  He commented that the hospital Emma typically goes to is world class and she looks like she has been getting very good care.  We were glad to hear that - even though we pretty much knew it it's still nice to hear it from another very respected doctor/institution.  We gave him a bit of background on Emma and he said sort of casually that Emma has quite severe CP.  Ouch!  I don't think that should ever be casually stated in passing.  To parents.  Especially parents that have only recently come to terms that Emma's CP is not mild and are wrapping their heads around Moderate CP.  Not severe.  But, alas, almost all the doctors Emma has seen seems to mention this quite casually so this is not a knock on this doctor at all.  Still....ouch.

The doctor looked at the Xrays we brought and agreed that Emma should get the adductor release surgery.  He didn't agree with the hamstring lengthening.  He had good reasons for it and I was glad to hear them.  His main reason for not recommending it is that since Emma isn't walking she most likely won't be helped by the procedure and it's likely the muscle will regrow pretty much the same as it already is and that since he can straighten her leg without much trouble it probably isn't needed just yet.  Truth be told I wasn't sold on that portion of the surgery which is one reason why we sought a second opinion.  He also told us about casting vs. not casting for the adductor release surgery.  Emma's main dr. doesn't cast.  This doctor does cast - he said it's a 2 week casting and mostly for pain management.  He didn't cast in the past but it was too painful for his patients so her believes casting is better for the child and avoids having them chock full of pain killers for a long period of time.  He did say, though, that not casting is a bit in vogue right now and so just as many doctors likely cast as do not cast.  I didn't know that so it was good to find out.  He also said cutting and surgery are very in vogue, too, with lots of doctors want to go straight to cutting.  Hmmm....I had a feeling about that.  If you go to a surgeon their likely gut reaction will be to cut.  That is a reason we are bringing a Physiatrist onto Emma's team.  Emma sees her in December and I'm looking forward to the appointment since she comes very highly recommended from other local parents.  Plus her name is Maura, which for some reason made me smile when I found that out ;-)

Where do we go from here?  Well, we have the physiatrist appointment in December.  We have a family consult for the surgery with Emma's original doctor in early January where we will discuss the one procedure vs. the two and casting vs. not casting along with expected time to recover, etc.  We have the surgery scheduled for late January and exactly what procedure(s) are done at that time will be dependent on what we decide at the family consult.

If anyone reading this has been there, done that and has any input on casting vs. not casting and adductor + hamstring vs. only adductor lengthening please leave a comment below.  I'd love to hear your experience.

Saturday, November 24, 2012

Lights and Lists


Some of our Fall favorite activities are having a bonfire, roasting marshmallows and drinking hot chocolate - preferably all at the same time!  We had a bonfire the other night and some of our neighbors were able to join in the fun.  One family brought fancy night glow sticks that the children loved and really created a festive mood so I tried to get a few photos.  It was really dark, so the photos are a bit blurry but I still love them.



The girls are excited about Christmas this year.  Julia already started to work on her letter to Santa.  She had to bring out her pamphlets from the Barbie DVDs to really decide what she wanted to include on her list.  This year she was all business on the list.  Please bring me: Lego friends, Barbie play set and iPod.  She wanted the Barbie vanity but I convinced her it is too small for her and better suited to littler children so she changed her choice to an iPod!!!!  When I asked her if she even knew what an iPod was she had to think about it and said it's what our neighbor has and she was right, only the neighbor is 4 years older than Julia.  She knows that Santa brings 3 presents for each of them and only asks for 3 regardless of how many times I suggest she adds a few more so Santa and his elves have choices in case the elves can't make enough of one of her items.  I love this time of year!



Emma hasn't made her list for Santa yet.  I'm going to program a page on Evie so she can self-select the items she wants for Christmas.  I'm excited to see if/what she will choose!


This week we are thankful for:
  • Fun.  Plain old-fashioned fun.  And hot cocoa!
  • A bit of time off to enjoy as a family
  • The anticipation of the Christmas season
  • The beautiful warmer weather we had




Tuesday, November 20, 2012

Today

Today I went into the office to work on the contract project I've been plodding along with for a couple of months now.  I was so excited to go in - to do some real work. It's been several weeks since I've checked in at the office and this week was a good time to venture there.

In an office setting I feel a sense of accomplishment that is different than the one I feel as a stay at home Mom.  I love staying at home - don't get me wrong - but sometimes it feels great to move things forward at a faster pace.  A faster pace than moving Emma along with her milestones because each and every inch of those milestones is lines with the Emma's and our family sweat.  A place where the work product is more appreciated than most of the food I cook from scratch (Ewwww is a word that is totally overused at meal times in my house!).  It's easy to go into work.  I find it harder and more challenging to stay at home.  For real, though, this is a misnomer because I am very rarely at home!.  I'm so very thankful that I have some contract work that fits my lifestyle.  That I can work around Emma's schedule and balance my work and home life.  It looks like there could be some opportunity to extend the contract after the first phase is over.  I think that would be lovely if it happens.  Having a bit of work to do seems to give me a bit more balance, a bit more happiness.  And a bit more breathing room in the budget ;-)  Shesh....have you checked out the cost of healthy groceries lately??? Yikes!

This year I've made an effort to get back in better touch with some dear friends.  Some I haven't talked to in a while and others that I talk to more regularly but don't see nearly often enough.  It's a bit of effort since life is just so busy - for all of us!  I'm so happy I'm making the effort, though.  I have an amazing group of friends that I've been through so many different phases of life with. Tonight I went out for a drink with a friend I haven't seen in more than a couple of years.  We picked up as if no time at all went by.  It was so nice.  Good friends.  Tonight I'm thankful to be blessed with so many good friends.

Monday, November 19, 2012

Thankful ramblings

Some days can be long and stressful and I feel like I'm swimming against the tide.  I've had a couple of those days recently but I'm thankful today was not one of those days!  


I'm thankful for:
  • Last night Chris went out with a friend and we had a girls night at the house.  Easy dinner followed by girl time in the kitchen when Julia decided to color at the table while I cleaned up the mess.  Emma had her talker sitting on the table and she said she wanted to color.  It was great to hear because I was at the sink when she said color several times.  I taped a page of paper to the table, gave her a crayon and she scribbled a bit before dropping the crayon.  To this minute I still have NO idea where that crayon is....funny how Emma has a way of hiding things on me.  Then she asked to read a book so Julia read one to us.  It was a fun and easy night.  And Emma initiated all the talking on Evie on her own without any prompting!  That is a big accomplishment.  She then went on to cry for about 2 hours at bedtime which brought me back to Earth.....she keeps us on our toes like that!
  • Julia is coming along really well with her reading.  She is reading longer books and learning more and more words.  I'm so proud of all the effort she is putting into learning to read at school and then coming home and looking to read 2 or more books again at bedtime.  I love listening to her read in her little girl voice.  I wish I could bottle that little voice because it sure is music to my soul.  And the cuddling that occurs with the book reading makes my heart hum!
  • Julia continues to excel at imaginative play.  I was cleaning the play room today and looking for things she doesn't need anymore but I quickly realized she plays with pretty much everything we have.  She is so creative on pulling things from various places - like animals from the farm, her Barbies, and her play food to create a picnic lunch for the barbies in the woods - and using them together.  I love listening to her play with her friends and learning how they are really put a lot of thought and effort into their play time.  
  • Emma's been blinking a lot on one of her CI programs lately so we needed to go in for a "tune up."  Since she doesn't talk yet her school hearing team worked with us on Friday to show her how hitting a button on her iPad that I programmed to say "I hear you" would let us know she hears the sound presented in the sound booth.  She is a quick study and figured it out very quickly.  She also giggled the entire 45 minutes.  You would have thought we were on a roller coaster or the tilt a whirl with all the giggles she had!  I'm glad she didn't consider it work and she was able to give us a pretty good read for an audiogram.  Today she had her real mapping session at the hospital and we brought in her iPad.  She did really well again and used the iPad for a good portion of the testing until she decided she was done and laid her head down on it.  Game over ;-)  We got a really good map for both her right and left sides, which is wonderful since she usually needs two different appointments - one for her right hear then another appointment another week for her left ear - due to her fatigue in the booth.  Her audiogram was similar to the one we got on Friday so I feel very confident that it's a good one.  We kept her same map because she is hearing really well but changed the sensitivity of the programs to see what will work best for her without causing the eye blink.  The program we left on (P3) worked well for the rest of today so we'll continue to monitor her reaction.  I'm constantly in awe of how far Emma is coming in her hearing and cooperation in the sound booth.  I remember the early days when I wanted to cry after each mapping session and now they are going really well.  So proud of my girl!
  • We ran into a few of Emma's fans while at the hospital.  It was great catching up with them!  If you have to take a child to the hospital the one she goes to is so personal that it takes a bit of the sting out of it.  How lucky we are to have people go out of their way to come over and get caught up on Emma and give her hugs and ask her questions directly.  Today she used her iPad with the My First AAC app while at the hospital (there is no way I was brining her iPad and Evie!!!!) and said Hello and Goodbye and Nice to Meet You to so many people.  It's the first time she has used that so frequently and intentionally.  I liked it.  Maybe all our work with her is paying off.
  • Tonight Emma said Mommy (twice!) on Evie for the first time ever!  She says Daddy, Julia and Finnegan all the time.  Never Mommy.  Tonight at dinner she decided she wanted Mommy to feed her.  And she got just what she wanted since she asked!!!!!!  She said a lot tonight and I took a photo of the screen to capture it because it made me so thankful that she is starting to communicate with us.  There is along road ahead of her/us, but at least we are on that road and making our way down it.  Slow and steady wins the race - I just have to keep reminding myself of that.

Saturday, November 17, 2012

Thankful

I continue to count our blessings.  I'm thankful for:

  • The warm sun that lets us take long walks without getting too cold
  • Potty training going well resulting in a bit of excess supply of diapers
  • Friday night family movie nights
  • Free books to borrow from the library
  • The chatter and laughs of little girls playing outside the window
  • Support we receive from our family and friends

Tuesday, November 13, 2012

Thankful Day 13

Here are a few things that have happened to me in my neighborhood recently.  All true.  All reinforce my belief that there are so many good people in the world.

  • Emma and I were waiting for Julia's bus and I was asking her questions and holding up my hands with the Yes/No response we use.  A woman turned onto the side street, parked and came over to us to introduce herself.  She told me she is a SpecEd teacher and that one of her four children has special needs and asked if I have a symbol communication mode to use with Emma.  She told me she owns the symbol software - which is a really expensive program - and would be happy to provide me with sheets of symbols if I needed them.  I told her we did use some symbols but are moving to the EyeGaze system.  I was - and still am - touched that she went out of her way to reach out to us in case we needed her help. 
  • Emma and I were waiting for Julia's bus another day.  Yes, I know, lots goes on with us at this bus stop since it is a busy street ;-)  Anyway, it was nice out and Emma was looking for Julia's bus so I decided to sit on the grass and read her communication notebook to see what she did that day that I could ask her questions about.  Someone pulled onto the side street and stopped and asked me if we were ok.  Did we need anything?  I told them we were just waiting for the school bus but it was so nice of them to ask.
  • I was taking a walk with Emma and Finnegan about a week ago and a car stopped at the stop sign, rolled down the window, and shouted out to Emma how she loved her fancy wheels and said a few other things to her.  Emma was tickled with all the extra attention.  And she knew it was all for her - the woman didn't talk to me at all and talked directly to Emma.  I love when people do that!
  • Today I was on a walk with Emma and Finnegan.  A lady yelled at me to keep my dog off her grass.  Ok, will do.  Only problem was she was cleaning up leaves from a house that wasn't hers.  How was I to know her house was a couple over?  And that is the exact house Finnegan decided to do her business!  Hmmm.....poor Finnegan didn't know what happened when I told her to stop and started pulling on her leash to get her to move on ;-)  Luckily, the walk got better.  A lovely woman and her daughter were walking with their little dog.  I stopped and put Finnegan in a sit position to let them pass - seriously, I don't need a dog fight while pushing a wheelchair and dodging the helium balloon attached to it along with the talker! - and she started a conversation with us.  She knew who we were since her children swim with my neighbor an she has seen us at church.  Everyone around here seems to know us from Church!  Emma really makes an impression there and it would appear that it is her most favorite place to visit each week.  We had a bit of a chat and she told me she knows I must be busy and if I ever need any help with the girls her children would be available to help me out then told me which house was hers so I knew where to go for the help.  Wow.  Such a lovely offer from a virtual stranger.  
Once again I'm thankful for a sense of community.

Monday, November 12, 2012

Thankful and Hopeful Parents

I missed a day on the Thankful posts so I'm doing a couple here:

  • I met a group of ladies at the hospital when our oldest children were only weeks old and we have been friends ever since.  I'm thankful for these and all my friends.
  • Backyard bonfires
  • The excitement our children have when offered a glass of hot chocolate
  • Our sewer backed up over the weekend.  We had water coming out of the pipe and quite a bit on the floor.  This happened on a Saturday and it was fixed by Sunday morning.  I'm thankful for the skilled tradesmen in this area that had us up and running so quickly.
My Hopeful Parents post is up now so head on over here to read it.  

Saturday, November 10, 2012

Making a Difference

I know the best way to make a difference in things is to change your actions.  Some examples are:

  • If you want more manufacturing jobs in the USA, then buy more products manufacture in the USA
  • If you are concerned about human rights and the goods you buy, consider buying free trade items
  • If you want small businesses in your community to stay, then buy from small businesses
  • If you want more options on organic fruits and vegetables, buy what is available and more will follow
Basically, change begins with us.  The actions we take each day can add up significantly when spread over many people.

Last night I went out with the ladies in our neighborhood to the Ladies Night of shopping at our church.  There were a lot of vendors around the room with really great products - many homemade.  I met some new neighbors and even found out that one - we call her the apple cider lady since she always gives out apple cider to the trick or treaters - self publishes comic books.  They are really great comics!  I think her new name will be the comic lady instead of apple cider lady ;-)  I bought something from the Pampered Chef consultant who is donating all the proceeds she made to the American Red Cross for the Hurricane Sandy support.  I bought a Christmas headband from a 10 year old girl who has her own business of making headbands and Julia is sooooooo excited to wear it over the holidays.  I bought a couple of other items, too, and enjoyed chatting with the vendors.

I feel like my purchases made a difference in my community rather than a multi-national corporation.  It felt great and I had a lot of fun with the night out.  After shopping we headed out for a drink at the local watering hole and had some great conversations.  

If your church or community is putting on a holiday shopping night I recommend attending.  This was the first I've gone to and I'm wondering why it took me so long!

So, today I am thankful for our community.  I'm thankful that we are a part of it and am happy that we can say we know more people around our new neighborhood after only a year than we did at our old house after 11 years!

Community is good.

Bigger girl food

Emma still keeps us on our toes when it comes to eating.  She can go for a couple of days when she doesn't want to eat and will only drink smoothies followed by a few days of wanting to eat everything in the house.  I've learned not to get too worried if we are on day 3 of her not wanting to eat anything and that's when I stock up on some of her favorite foods in anticipation of the feasts she will want again soon.

But frequency of eating isn't the only thing Emma's changing these days.  She wants to eat more and more table food even though she isn't really ready for more solids without choking.  She wants to sit in her Childrite chair instead of her Special Tomato seat.  She wants to feed herself even though she needs lots of hand-over-hand help.  And if any dessert or sweet item is brought out before she is done her meal she promptly refuses to take another bite of her meal and demands to move on to dessert.

And so we are once again following her lead.

We stopped pureeing her food and are either chopping it up finely with the Pampered Chef chopper (that's been hanging our in our kitchen for ages looking for a reason to be used) or using the container that came with the immersion blender we purchased for her birthday.  The container is nice because it is an in-between texture of chopped and pureed and results in a bit of a chunky consistency.  The blender is the Cuisinart cordless rechargeable immersion blender with a couple of attachments.  We thought it would make travel easier if we didn't always have to preplan meals and bring them along - especially for when we are going someplace for a few nights - and would make eating out easier as we could just blend the restaurant food up in the cordless contraption.  We've found that it is very handy at the house, too, and it is often used several times a day.  (Note:  In case you are looking at purchasing one of these blenders, we purchased this item at Bed Bath and Beyond.  Emma and I went to the store to see it in person but it's an online only item.  However, if you order it at the store you can use the 20% off coupon that always comes in the mail.  Emma gave the cashier big smiles and turned on the charm so they also shipped it to our house for free making it a pretty good deal.)

For dinner tonight we had tacos.  Everyone in our house agrees that tacos are great so it was an easy Friday night meal eaten without complaint.  Since tacos would be hard to "chop" and then feed to Emma I just used the container attachment for the Cuisinart and it did a great job of turning the food into a form that Emma could enjoy.  Emma loves tacos and today was one of her eating days (horray!) so we even had to mix up another batch because she wanted seconds.  That made this Mommy quite happy!

For the last few weeks Emma has been putting up a fight when it's time to go into he Special Tomato chair to eat.  I'm not really sure why since she actually likes this chair.  Maybe it's a phase?  Anyway, we've been using her Childrite chair at the table on days when she won't use the Special Tomato.  It's not our preferred chair for meals since she sometimes tosses her head back and bonks it on the hard wood chair.  Also, it's not really secure and we don't want her to tip over and fall out of it so we make sure someone is right next to Emma at all times.  She seems to love this set-up even if we are less than thrilled about it.  I'm sure that, as with all things Emma, she will shake up where she wants to sit yet again and go back to her Special Tomato for eating.
So today I'm thankful that Emma continues to make progress with her eating.  That she is undaunted by the challenges she faces with her oral motor skills and her fine motor skills and is determined to one day eat table food independently.  That makes me very thankful, indeed!



Thursday, November 8, 2012

Thankful Day 8

I'm going to be brief.  Today I'm thankful for:

  • Getting in a good workout 
  • Children who love to ride the school bus
  • The support and people I've met since going "online" with my blog!
  • Having enough money for the necessities and a little left over to share this holiday season.  As usual we have a few charitable things we are doing for the holidays with the girls.  Julia's school is hosting a food drive for the local food bank and we went through our cabinets for food to donate.  I love showing my children how to live a Christian life.  And Julia seems to be very service oriented and enjoys contributing to our community.  
Life is so good!



Wednesday, November 7, 2012

Thankful Day 7

Did you hear?  I wore my blue striped shirt to vote.  And my candidate won!  Our family is thankful for another 4 years with President Obama.  And we really, truly hope that we see some major changes in our government.  More collaboration, more working for the American people, less doing nothing!  The American people deserve representatives who get things accomplished while in office.  That means you Senate and House.  Let's start with the fiscal cliff, shall we?


Julia treated us to a show tonight.  It was 3 songs long and incredible.  I just love her shows!  This is something I will definitely miss as she gets older.  Here is a clip:



After the show she signed autographs and posed for photos with her fans.  Luck me!

She autographed napkins just like a real star would ;-)
Posing with one of her biggest fans!
Yesterday Emma sat on the couch like she has been able to sit forever.  I took a photo of her so I'd remember it.  She didn't fall over, either, like she usually does if not surrounded by pillows.  What a cool thing to see!


Today I'm thankful for:
  • Obama winning the Presidency
  • Living room shows put on by my sweet girl
  • Emma's improving sitting skills
  • A warm house on a cold, rainy night
Life is good!


Tuesday, November 6, 2012

Thankful Day 6

A bit of a mish most today.

First up, the election.

  • Today I'm thankful for the right to vote.
I'll share a badly-kept secret.  I voted OBAMA.  I also voted for local representatives who will likely have much more impact in our lives.  I've been very heated this campaign cycle.  I care who wins.  I'm no longer disinterested in politics like I was when I was a child.  I am now fully engaged in the political process.  I contact my representatives often to tell them how I want them to vote.  I follow-up with them  so they know I noticed if they listened to me.  I care.  The main reason I care is that I continue to experience the direct impact the government has on our life.

Here are a few reasons I chose Obama.
  1. Obamacare.  I like it.  It prevents insurances from excluding customers due to pre-existing conditions.  It removes the lifetime cap on how much they will pay per patient.  Both of these clauses directly effects our family and we are better off for having them.  I also think that in the USA everyone should have health insurance.  We give so much money to other nations why in the heck can't we take care of our own people????!!!  I was talking with a friend from England earlier this year and he asked me what is the deal with the Americans and why are so many people against health care coverage for our fellow citizens.  I had no answer for him because I wonder the exact same thing.  I also find it ironic the the Republicans who want to rollback health care reform are the first to say they are Pro Life.  I don't understand how you can be pro life and then not want to take care of those very same people when they are alive.  How you want to take away coverage for children and adults with disabilities - oh, you wouldn't say that's what you want to do.  Around here all we hear about are illegal immigrants and lazy people getting the benefits while it is left out that the majority of people that receive services are the elderly poor and the disabled.  News flash to everyone who is not walking our path in life - private insurance will do you little good if you have a child like Emma.  You will find out quickly that all insurances are not created equal and that although they say they cover X, Y, and Z...it is often not covered if you have a chronic condition.  And your plan could exclude certain classes of coverage as not medically necessary.  For example, our insurance doesn't think hearing is medically necessary and does not cover any hearing services for Emma.  You will spend thousands dollars each year for insurance that denies your child some of the services she needs.  You will thank heaven that your child has state health care because after paying all the money you do for primary insurance (that doesn't meet all your child's needs) you don't have another blessed cent left in your budget for health care.  And you will feel like your representatives have abandoned your child when they tell you that it's not enough that you pay thousands and thousands of dollars in health care to your primary insurance company and that you now have to pay thousands of dollars more for the state health care coverage (our state did just that and then decided to reconsider and are in the process of deciding how to proceed) your child needs to have an acceptable quality of life.  I consider this a tax on the disabled and the families of those with disabled children.  And I want no part of it.  
  2. Women's rights.  Come on it's 2012 and employers can pay men higher wages than women for the same job?  Seriously?  Obama signed the Lilly Ledbedder Act.  Romney opposed this act before it was signed.  Also, I like having Planned Parenthood so ladies can have easy access to mammograms, birth control and other services.     
  3. His outlook.  I like that he wants to grow the middle class from the middle out.  I don't want to go back to the financial situation and collapse we had during the Bush years.  Obama signed the Financial Regulation Bill and I'm all for the tighter regulations based on my first-hand experience in business.  
Next up Emma's care.
  • I'm thankful that we have easy access to world-class hospitals, doctors and service providers in the area where we live.  There are 3 different hospitals with great reputations within a 45 minute drive from our house.  
With such easy access to health care it is sometimes difficult to determine which place we should go for her care.  I feel that other than us, there isn't one go-to person looking at Emma as a whole girl.  People see her for specific areas - hips, eyes, ears, brain, etc.  Her new pediatrician doesn't seem to have a lot of experience with children similar to Emma and so she doesn't seem to be coordinating most of her care.  Perhaps we need to consider changing pediatricians or adding a Physiatrist or Developmental Pediatrician to her doctor list.  Not I'm looking for more doctor appointments but I sometimes feel like she would do well to have someone looking at her as a whole who can make suggestions.  

Monday, November 5, 2012

Thankful Day 5

Today I'm thankful for:

  • Technology.  First thing this morning I spent 25 minutes trying to get Emma to say something on Evie - well, I was going for "want" "go" "walk".  She said "want" and that's when I lost her because I turned on my video camera on the phone.   I was trying to get a video of her talking with it since she's been doing so good.  She only wanted to see what was going on with my phone and wouldn't look at Evie.  I was frustrated at the end because I really wanted to take Emma and Finnegan for a walk before she headed off to school.  And I know Emma is great at saying "go" "walk" since she does it almost every morning as part of our routine before her school bus arrives.  Me = 10000% frustrated.  Emma = 98% giggly and smiling with 2% annoyed with me.  I clearly need to take my lead from Emma more and just go with the flow sometimes!
  • Easy bedtimes.  Busy day = tired children = easy bedtime = very thankful Me!
  • Nights out.  Chris is at a basketball game tonight.  I like when he gets out because he doesn't seem to go out nearly as much as me.  More nights out for him will make me feel less guilty when I have nights out for me :-)  He and a friend have a 10 game package for the basketball games.  That means more nights out = good thing in my book!
  • Our comfortable place to live.  I feel terrible for all the people left homeless or in bad shape from Hurricane Sandy.  So thankful we were spared and thankful for the American Red Cross and other support that so many of us are signing up to help.
Phew!  It's day 5 and I still have no shortage of things for which I'm thankful.  I hope everyone reading this is as blessed!

Until tomorrow.....when I'm sure I'll be thankful the election commercials are gone from tv!!!!!!!!  Please remember to vote.  I'm taking Emma in the morning.  We're voting for Obama for a 2nd term.  We support him for soooooo many reasons.  Hope the rest of the country agrees we need a second term of Obama.  We'll know soon enough!

Sunday, November 4, 2012

Thankful Day 4

Today I'm thankful for:

  • My very supportive husband
  • An extra hour
  • Warm baths
  • Shopping with gift cards
  • Warm drinks
  • Our dog 

Saturday, November 3, 2012

Thankful Day 3

This will be a short post.  Today I'm thankful for:

  • Our family
  • Shrinkwrap for windows in the winter
  • Little children in footie, cuddly pajamas
  • Cars that run
  • Neighborhood get-togethers - no driving required
  • Electric power

Friday, November 2, 2012

Thankful Day 2

Today both girls were off from school and we had such a fun day together.  Today, I'm thankful for:

  • Waking up without alarm clocks
  • Hot drinks.  Especially the Pumpkin Coffee from Dunkin Donuts I purchased today with my gift card
  • Grilled cheese sandwiches with soup dinners.  Everyone eats without complaints so we are able to have conversations that don't include "how many more bites do I have to eat????????" and "can I be done now?  how about now?  what if I eat a banana instead??"
  • Family movie nights - and inviting a neighbor over to join in the fun
  • Fun afternoons with friends.  Today we met friends at Chuck E Cheese for lunch and games.  Julia is always such a trooper tagging along to all Emma's therapy appointments on her days off from school that this was just the special treat she deserved! 
  • Giggly girls during physical therapy and a PT that is so great with both my children - not just the one getting therapy!





Thursday, November 1, 2012

Thankful Day 1

Last year during the month of November I shared things I was thankful for and I'm going to do it again this year.  I believe thankfulness is a muscle that we need to exercise - the more we stop and allow ourselves to really think about all we have to be thankful for, the more blessed and happy we feel.

Today I feel overwhelmed with how many wonderful things happened to us today.  I am especially thankful for:

  • A package received in the mail from a stranger.  It's a part we use to troubleshoot and control Emma's CI and somehow I had lost hers and a replacement unit is very expensive and not at all in our budget.  I've been looking around the house for this part everyday for weeks because I feel something is "up" with the CIs and I wanted to use the part to do a bit of troubleshooting before the CI warranty is up next month!  Last week someone posted on an internet CI group that they had this part and were offering to give it away for free to anyone that needed it.  Someone else had requested the part before me, but they were going to use it as a spare and the person wanted Emma to have it since it would be her primary (not spare) unit.  The part arrived today in the mail along with a lovely note.  Tonight I feel so thankful that a stranger took the time to help make our life a bit easier.  Once again I'm reminded of how amazing it feels to be blessed by the kindness of strangers!
  • Caring teachers and finding a school that is the perfect environment for my child to learn.  We attended the parent teacher conference for Julia today and I really appreciated all the time and energy her teachers put into communicating with us and helping our daughter learn in such a warm, nurturing environment.  Julia's school fits her personality to a T and we are so blessed to have the opportunity to send her there.  
  • Spontaneous comments.  Emma's teachers told me today that Emma used her talker 4 times during craft time without being prompted.  She asked for glue, scissors twice (my girl LOVES using the one-handed scissors), and crayons.  Emma has never used her talker spontaneously at school and only used spontaneously a couple of times at home.  This is a major goal we are working on with her IEP and it's wonderful to see that Emma is starting to connect well with Evie and to use it appropriately without prompting.  
  • A beautiful card and note in the mail today for our anniversary.  Along with a generous gift.  Thanks so much to the person who sent it (you know who you are - I don't want to call you out here because I'm not sure if it would embarrass you!).  

Wishing everyone days filled with much to be thankful for.

Wednesday, October 31, 2012

Happy Halloween

Halloween is a pretty big deal for my little girls.  The talk about what to "go as" is a pretty serious discussion in our house.  Julia usually narrows it down between two different possibilities early on and flip flops from one to the other for a long time.  This year Julia chose Cinderella and we just so happened to have Cinderella's Wedding Gown from our trip to Disney in 2011 and it still fit.  Lucky me ;-)  Then we went to the mall and she fell in love with some butterfly wings and decided she would go as Cinderella with wings.  She looked adorable!  I know, I know, I'm not the most unbiased person.


Emma usually goes with the flow.  She likes to dress up but hasn't really shown much interest in choosing her own costume so it's pretty much been whatever we have in the house but not this year.  In August we were shopping at TJ Maxx for who knows what and she spotted a rack of Halloween costumes and did her happy wheelchair dance and squeal until I took her over to check them out.  That is once I figured out what was making her so happy!  She wanted this candy corn fairy costume and was over the moon with it and so I bought it for her.  Of course.  It was the first time Emma has pretty much ever asked for something when we weren't giving her a choice between two items.  She spotted it, got me to take notice and then smiled all the way to the register.

The children from our block went trick or treating as a group like they did last year.  The ladies went with the children and the guys stayed to give out treats.  Our one neighbor had a bonfire and everyone met there to give out candy for the houses.  It's a great way to enjoy the night and the children have SO MUCH FUN!  The adults do, too.  We really love this neighborhood!


This year we recorded Julia's voice saying Trick or Treat onto a Big Mac type program on the iPad and   Emma was then able to just touch the screen to say Trick or Treat. It was a big hit with the children - they were happy to hear Emma say trick or treat - and the people at the houses we visited.  I think Emma liked having her button.  The only thing that wasn't ideal is her external speaker stopped working and we had to rely on the built-in speaker, which isn't very loud :-(  I think we'll use her birthday money to buy a better external speaker - if anyone has one they like, please let me know in the comments section.  She had a logitech and it stopped working after only about 20 uses!


Julia's favorite treats are the lollipops.  She did not get that from me or Chris.  Emma was all smiles when she received chocolate.  She had not met a piece of chocolate she didn't love.  She does get that from me.  One house was giving out sodas.  The children were running to that house and yelling to each other they were getting soda.  It was so funny!

Hurricane Sandy came through town but, thankfully, our neighborhood was mostly unaffected so we had Halloween as usual.  During the storm we did put on the Halloween music we borrowed from the library and carved a pumpkin.   It was the first time Chris and the girls ever carved a pumpkin.  Yikes!  How did it come about that I'm the only one in the family that ever carved a pumpkin?  Emma loved how messy it was, Julia loved tracing the stencil onto the pumpkin and helping me toast the pumpkin seeds for our snack, and Chris was surprised at how hard, yet satisfying, it was to carve.  We all agreed it was a lot of fun and will do another one or maybe two next year.


We wish everyone a Happy Halloween!