Earth Day

Happy Earth Day!  I have my B.S. in Environmental Science and it is very important to me that we try and tread lightly on our planet.  Our family likely has a large carbon footprint but we are working to bring it down. We recycle almost everything we can, buy items with minimal packaging, reuse bags and are trying to adopt new habits that are more environmentally friendly such as: buying from farmer's markets, walking/biking more instead of driving to local places, and hanging our clothes to dry in nice weather.

I was happy to hear that Julia is learning about Earth Day in school and she was very surprised to find out that she did not have off from school for this holiday.  That gave me a bit of a chuckle.  I know her school marked the day with Earth Day friendly activities and think Emma's class unit on spring will cover Earth Day topics like growing gardens.  I'm thinking it would be a good time to ask Emma about her school activities and see what activities Julia and Emma had in common.  Fun idea, right?  Let's see how much Emma wants to tell us...she is the nosy, silent type.

I'm not the best green thumb but can usually manage to grow some vegetables in the summer.  I already have some lettuce and hope to plant a bit of cucumber, tomato and peppers.  Maybe a few other veggies, too, depending on when I get around to the planting.  I've asked Chris to make us a raised vegetable garden container that is height adjusted so we can roll Emma's wheelchair under it and she can help with the garden.  I think getting her hands dirty and helping to pull off the fruit will appeal to her.  It also addresses my desire to use clean soil for the garden and having it as a raised bed will eliminate any ground contamination that might occur.

The past year I've been working hard to minimize the amount of packaged food we purchase, opting  instead to use most of the food budget for whole foods and organic food when possible.  This has resulted in slightly more cooking and food preparation time but overall more satisfaction with our meals and snacks.  I believe this change will make a difference in our family's health long term and think that eating mostly whole, fresh foods makes me feel less guilty when we do indulge in the packaged food variety.  Don't get me wrong - we still use packaged food, especially crackers and some snacks.  We just use less of it and are trying to cut out even more and our garden will help with that effort.  If you are trying to do the same, a good site for ideas on how to achieve this is 100 Days of Real Food.

We are members of our local zoo and they have an ongoing conservation effort to educate the public on the environmental impact of some food ingredients.  Long story short, we learned that Emma's beloved Nutella uses palm oil and the way it is harvested is endangering the orangutan habitat and the species.  For more information on this you can visit:  www.rspo.org.   Since we love the orangutan we ceased all purchased of Nutella after that and started looking at the list of ingredients we buy to determine what includes palm oil.  Turns out a lot of items contain it!  Yikes!  So, we are trying to patronize companies that use sustainable palm oil.  Today I purchased Justin's Chocolate Hazelnut Butter and it is a nice alternative to Nutella.  It's more expensive but we don't use much and since it is a food that motivates Emma to eat on days when eating just seems like too much effort for her it was a good purchase for our family.

These are a few things we are doing everyday to try and minimize our impact on Earth.  If you have some actions you are taking please consider putting them in the comments section as we are open to more ideas.

CMV Legislation

There is some FANTASTIC news on the CMV awareness front.  The grassroots effort to raise awareness of CMV for everyone - and especially women of childbearing age - was in the national spotlight!

On June 23, 2011 the United States Senate unanimously passed Senate Resolution #215.  To say that a lot of hard work went into this is an understatement and I'd love to thank the ladies of StopCMV.org and everyone else who made this happen.  I'd also like to thank Sen. Barbara Mikulski [D-MD] for sponsoring and Lisa Murkowski [R-AK] for co-sponsoring this resolution all our members of our 112th Congress who took the time to understand the effects of CMV, ask questions, read the citations and pass the resolution.

Senate Resolution #215 calls attention to CMV in a more public way and specifically calls out two actions:

1.)  Designates the month of June as National Cytomegalovirus (CMV) Awareness Month in order to raise awareness to the dangers of CMV and reduce the occurrence of congenital CMV infection; and

2.)  Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.

The hope of so many families effected by CMV is that we can raise awareness on CMV so that others can prevent CMV from changing their lives.  Having S. Res. 215 takes us one step closer to that reality!

Power Chair Testing

Emma is one lucky girl!  Besides the obvious reasons......she now has a TDX Spree power wheelchair on loan to her so we can give her a lot of hands-on time learning to drive a power chair.  For better or worse, it seems that this is what we need to do to convince our wheelchair clinic and the insurance company that she is ready to get one of her own.

The chair came with a left handle control, but I spent a couple of hours this week moving the control to the right so that she can drive it better since she is right side dominant.  We also spent time loading and unloading the chair from the car using a suitcase ramp (loaned to us with the chair!) and it became VERY clear to us why most people would want to retrofit their car once they are set on using a power chair.  I'll just say that we're going to take ample advantage of any nice weather outside to give Emma a chance to learn driving in our driveway rather than doing all the lessons at the local mall!

True to form, Emma did not disappoint us with her desire to get moving.  I'm pretty sure she has made the connection that the chair moves when she moves the joystick.  Getting her to control the movement of the chair - especially going forward which requires her to push the joystick up, a movement that is difficult for Emma - will likely take some time.  Then there is the learning of not to knock into things, people, drive down stairs, etc.  

I'm super excited about the possibilities available to Emma with power mobility!  

Here is a video I took of Emma yesterday.  It is the first time she was in the chair since I moved the control to her right side and I think she did an excellent job.  You can see the chair is a pretty good fit, but I'm trying to make an apt. with our wheelchair clinic to get it fitted for Emma and hope that will allow her to be even more successful at driving.  Way to go, Emma!

And now for some more Cerebral Palsy facts:

Cerebral Palsy is one of the most common congenital (existing before birth or at birth) disorders of childhood.  About 500,000 children and adults of all ages in the United States have the condition.

There are 3 types of CP:  

1.)  Spastic - causes stiffness and movement difficulties (this is the type Emma has)

2.)  Athetoid - leads to involuntary and uncontrolled movements

3.)  Ataxic - causes a disturbed sense of balance and depth perception

March Occasions

  

March is Cerebral Palsy awareness month.  I didn't know much about CP before I had Emma other than I had heard of it and knew of at least one person with CP although I didn't really have a relationship with that person.  When I tell people about Emma her CP sometimes comes up and when it does I often get questions about her birth and if she had a lack of oxygen when she was born.  I finally realized I got this question because birth accidents are what most people associate with CP mostly due to the commercials on television offering legal representation.  Emma had a seamless, beautiful birth and we found out later that her CP was caused by a CMV infection I must have picked up during my first trimester of pregnancy.  I later found out that CMV is considered once of the leading causes of CP in children.

I had very little awareness of CP before it touched our lives.  I know that many people still have little awareness of CP so during my March blog posts I plan to include information on CP to help spread awareness and understanding of this condition.

Today I will start with a broad definition of cerebral palsy.

Cerebral palsy includes a variety of conditions, and is not an illness or a disease itself.

Instead, it is the description of a physical impairment that affects muscle tone and movement.

No two people with CP are the same, and the degree to which it affects people varies from barely noticeable to extremely severe.

There is no cure for CP, but therapy, special equipment, and sometimes surgery can help a person who is living with this condition.

March is also the month where we honor St. Patrick's Day - an important holiday for the Irish.  I love that CP awareness uses the color green and occurs the same month as St. Patrick's Day.  For some reason that makes me happy :-)

March 2nd, today, is also Spread the Word to End the Word day.  The word being the R-Word.  Find out more information on this movement at http://www.r-word.org/.  Ellen at Love That Max did a great post on this today.  You can read her post by clicking here.