What we've been up to

There are some major updates for Emma.  First off, we received her Eco2 with EcoPoint today!  I may or may not have looked out the window and paced the sidewalk in front of our house waiting for the FedEx guy.  We are so excited that Emma now has a voice that can't be taken away from her.  It's her very own personal talker - her voice.  I think something this important may need a name instead of her talker.  Maybe we'll call her EV (Evie) for Emma's voice.  When Emma saw what I unpacked from the box she giggled and giggled and crawled over to it.  She reached out her hand and touched it and made noises to me that I interpreted to mean she is so happy to have it back.  This is amazing for so many reasons, but the most important one is that Emma actually likes to use this talker to communicate.  We tried so many different methods and Emma remained indifferent.  Her speech therapist really got it right when she told me that it is the child that actually selects the device they want to use as their voice.  Emma sure did!

The other update is we finalized Emma's IEP!  The main change is we moved her from the morning pre-school classroom to the afternoon pre-school classroom.  This class is a bit faster pace and more academically challenging for her.  Also, this class is only held 4 days/week instead of 5 days so we will get some time back to devote to our field trip adventures.  Going from 5 days to 4 is a big deal for her therapists since her IEP has a lot of therapy time scheduled and they are worried about her missing too much of the typical classroom time.  One option we are exploring is me taking Emma to school on her day off for some therapy appointments only.  I'm confident we'll have it all worked out soon.  I'm thrilled she will be challenged a bit more academically while working with her same aide, teacher and team of therapists.  It takes Emma months to warm up to new therapists - she tries to skate through sessions until they catch on that she knows more than she is showing them.  None of that will be happening this year because they know more about her strengths and weaknesses.  Already she has been demonstrating how much she knows by answering correctly 100% of the time in her last three speech sessions.  Way to go, Emma!

Julia loves school and has settled into the new routine of 1st grade.  When Chris drops her off in the morning she wants him to move along on his way and doesn't want him to hang around for 5-10 minutes like the parents do in kindergarten.  She started taking the school bus home from school a few days a week and getting home about an hour earlier than she comes home with Chris.  The bus picks her up at school and takes her to the high school where she boards a different bus to her stop near our house.  I was a bit worried about the transfer of busses but she seems to be an old pro at it by now.  Another first grader in her school takes the same first bus and they like to sit together.  It's fantastic she has a friend to ride the bus with considering she goes to a private school quite a bit out of our school district.  The whole bus adventure is working out quite well.  Julia also stared religious education classes and she really loves it.  When I asked her what about it she loved the best she told me it's when she gets stickers.  Aha...it's so easy to please a first grader!  Our neighbor is teaching the class and I'm the aide so she also thinks that is lots of fun to have us in there with her.

We went away this past weekend to a wedding.  It was lots of fun!  The girls came to the service with us and loved looking at all the girls in their dresses.  My niece joined us on the trip and she watched the girls while we went to the reception.  They loved hanging out with their cousin and we really enjoyed the night out.  I think we'll have to do it more often!

Cut

While looking at Emma at church last week the idea that she needed a new look popped into my head.  Haircuts aren't usually the inspiration I take away from Mass but from that day on I kept thinking about a new haircut for Emma that would let her wear her hair down instead of always in a ponytail.  Not that she didn't look ridiculously adorable with the ponytail on her head.  Oh, no, it's just that with her about to turn 5 years old it was time to check out a new hairdo.  Plus, she has only ever had about 1/2" of hair cut from her head.  Makes me wonder what is going on with her hair???  Is her body so focused on trying to move that it decided to completely forgo hair growing?  Hmm....

For the new "do" I knew it would have to be easy to maintain (Emma HATES having her hair fussed with) and out of her face.  It also had to have enough substance to clip her CI barrette onto because losing them would cost us pretty much the equivalent of a down payment on a big house!  I also wanted to be able to go back to a bit of a pony on the head if I started getting nostalgic ;-)  A haircut like this should be easy peasy, right?

After thinking about it for a while the sun came out and the weather is picture perfect and I decided TODAY, I have to cut her hair today!  So I took out my hairdresser scissors and brushed Emma's hair and gave her a mirror to look into all the while holding my breath because I'm really not all that good with hair.  I mean, I don't even own any hairspray and my most used hair product is an elastic ponytail (it only just now, as I'm typing this, occurred to me that this could this be the reason Emma sported a ponytail for the past 4 years!).  

I started snipping all the while telling myself I could cut her hair as good as anyone since Emma refuses to keep her head still - and besides, if I messed up a bit it wouldn't matter since her cute smile and sunny disposition could easily detract from a bad haircut.  Emma thought the whole process was hysterical and laughed and laughed and laughed and then laughed some more.  She moved her head back and forth and all around and tried her best to make her haircut as uneven as possible.  Seriously - her sense of humor is a off center like that.  And when I started cutting her hair she burst out into hysterics and caused the dog to come over and add a bit more action to the head banging.  Which was exactly what I didn't need.  But I couldn't be swayed off course and I'm happy to say that I prevailed.  Emma laughed continuously and when we were done and she looked in the mirror she was all giggles and smiles.  I tried to see if the top would still go into a ponytail but she would have none of it.  It seems my girl was ready to let her hair down and ditch the ponytail.  Who knew?

And before you ask - yes, it looks just as adorable with a cute little clip holding her hair off her eyes as it does leaving it down.  

First Grade

Dear Julia,

As you start first grade your Daddy and I wanted to take a moment to talk with you and let you know how special you are to us.  We are so blessed to have you as part of our family!  I often refer to you as my sweet, sweet Julia because you are as nice and caring as it gets.  But you are so much more than a sweet little girl.

You are strong.  You do not like mean people and your feelings are easily hurt when people are mean.  You do not hesitate to stick up or yourself or for others that you feel are being mistreated.  This makes me so proud.

You are a leader.  People look to you on how to handle situations yet you have a quiet peace about you and do not need to be the center of attention.  But you don't mind if you are the center of attention either.  This makes you a great leader.

You contribute a lot to our family.   You help make the house run a bit better by cleaning your room, making your bed, and cleaning up your toys all without ever being asked.  I'm not sure how or why you started to do these things but I sure am glad that you do them!  Sometimes you like to surprise Mommy and go out of your way to make Emma's and Mommy's beds when all your work is done.  It is always a wonderful surprise and always makes me smile.

You are funny.  There are so many little things you do throughout the day that makes me laugh.  All these little things and silly faces really make my day brighter.  Thank you for sharing your silly side with us.

You are serious.  Sometimes so very serious.  This will serve you well as you navigate through life and I'm so glad you have such a funny, silly side that balances this out.

You are a natural born traveller.  You make yourself at home in planes, trains, buses, hotels, foreign cities and towns and roll with all the "things" that come with travel much better than most adults I know.  You have a bit of wanderlust that I think you got from your Mommy and we know that one day you will want to venture off on your own.  We will support you when that happens.

We continue to be amazed at how each year you develop and mature way beyond our expectations.  We have no doubt that this year will be any different.  We know you will learn new things, make new friends, and have fun-filled adventures.  And we look forward to supporting you every step of the way.

Love, 

Mommy

Here is what you had to say on your 1st day of 1st grade.  You wanted me to take a video and it was such a great idea I think we'll have to do this every year!  Maybe we'll add this to our back to school traditions along with our traditional Mommy/Daughter date night before school starts.

World Cerebral Palsy Awareness Day

Today is the first ever World Cerebral Palsy Awareness Day!  I'm so happy that worldwide people are coming together to talk about CP because there are over 17 million people worldwide effected with CP and a further 350 million people closely connected to a child or adult with CP.  To put that number into perspective there are just under 315 million people in the USA so there are more people in the world connected to a child or adult with CP than there are people in the entire US!

Emma and our entire family are included in these figures.

Emma has CP and she works it well!  Even though it effects all her motor skills from sitting, standing, walking, talking, eating, it DOES NOT effect her smiling or laughing skills.  Boy, can this girl smile and laugh like no other!  Having a moderate to severe form of CP means that Emma is usually going through life with a partner by her side to help her with mostly all daily activities and this works well for her because she does not like to be left alone at all.

CP has brought so many amazing people into our lives, allowed me to love deeper than I ever imagined  and seeing Emma work to achieve milestones so many take for granted has inspired me to work harder and be a better person.  Today I ask people to look a bit beyond the disability and see how Emma and others like her are changing the world for the better!

The theme for this year is "Change my world in 1 minute."  So, I'll take my minute to say all offers to babysit both girls so we can get a few hours off for a date will be immediately accepted :-)

Dear Mrs. Obama

A year ago the head of the Brendan B McGinnis cCMV foundation asked parents to write letters to Mrs. Obama to raise awareness of CMV. The letters were compiled but not delivered until today.  Today the letters from ~100 families were hand delivered to President Obama by Tracy McGinnis where she met the President and gave him an overview of CMV with her sons - including Brendan who is severely affected by cCMV.  President Obama said he will read each letter and I'm so proud my letter and a photo of Emma was included in the information Tracy gave our President.  

In case you are wondering what I said, here is my letter with a couple of items edited out for the web because some information is still best left off a public blog ;-)

Dear Mrs. Obama,

Today I am writing to tell you about how a seemingly insignificant virus has changed my life.  Cytomegalovirus, or CMV, is a very common virus and many times the symptoms are similar to the common cold.  However, when a woman who is pregnant gets effected by CMV it can cause a variety of problems with the unborn child.  I had never heard of CMV, was not counseled on it during my prenatal visits (where I was advised about toxoplasmosis and other obscure viruses), and did not even know I had contracted CMV until my baby was 3 months old. 

Emma had an uneventful birth.  She was a planned pregnancy and I attended all my prenatal visits.  I did not drink, smoke or do anything that could harm my baby.  I had gone to college, worked several years, completed a graduate school program, met and married the man of my dreams, had my first child and was very excited about my second baby.  I was so excited to find out she would be a girl - I would have two girls - sisters!  I love the bond that sisters have and was so happy to finally meet my little baby Emma.  So when we found out she was deaf when she was 6 weeks old we thought it must be due to genetics.  Upon going through the process of determining the cause of her hearing loss we found out the cause was from CMV.  We found it out on Dec. 31, 2007 and promptly went home and googled CMV and baby and I can tell you it was a horrible way to ring in the new year.  There were no positive messages about the impacts of CMV on babies and many references to death and severe disabilities.  I sobbed for hours and kept looking at my baby who I thought was perfect in every way and thought it must all be a big mistake, that the virus CMV was not the cause of her hearing loss.

Fast forward to today.  Emma is now 4 years old.  She has a loving supportive family.  She also is deaf and has cerebral palsy that effects every part of her body.  She cannot sit independently, hold her head up for prolonged periods of time, crawl, walk, talk, feed herself, give herself her own bottle.  She can smile, giggle heartily, and melt your heart.  She is a smart little girl who knows her colors, animals and many other things.  We are working hard to give her a communication system so that she can tell us more of what she knows! 

I don't know what the future holds, but I sure do know that she is one loved little girl.  Her father, her sister and I include her in all our activities.  But, her direct care needs are high.  I no longer work and it is very hard financially.  I worry constantly about all the political discussions about health care and cutting back on Medicaid funding.  We pay about $X/month for health insurance and it does not cover therapy for chronic conditions (cerebral palsy is, not surprisingly, considered a chronic condition) and it excludes all hearing coverage including cochlear implants.  Emma has bilateral implants that she uses to hear and they require maintenance and auditory therapy.  Emma is making a lot of progress with physical movement, but it is a constant battle with insurance to obtain the equipment she needs to lead a better quality of life.  While I love my daughter with all my heart, I would love to prevent other families from having to see the effects of CMV on their child and from the sleepless nights worrying about their well being and how to pay for their care.

I imagine that when you were going through prenatal visits you had not heard of CMV and it is by the grace of God that you did not find out about it when your baby was 3 months old and not meeting her milestones.  I know we can do a better job of educating women about CMV and how they can prevent the leading cause of non-genetic hearing loss and cerebral palsy.  More children are affected by CMV than spina bifida, fetal alcohol syndrome, or downs syndrome but yet people are still relatively unaware of the effect CMV can cause on their unborn baby.

Please help us spread awareness of CMV.  Please continue to fight to keep Medicaid available for our disabled children. 

Thank you for your time and consideration.  I'm attaching a photo of Emma for you.  She is my hero.  If you are ever in the Philadelphia area I would love for you to meet her.  I know she will forever touch your heart.  You can reach me at:   My email is

Best Regards,

Kristina , Mom to two beautiful girls, one severely impacted by CMV