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.  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 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


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.