Cerebral Palsy Awareness

Here are some things you might not know about Cerebral Palsy:

• Cerebral means "relating to the brain" and Palsy means " muscle weakness"
• Cerebral palsy is a brain injury.  It is not contagious and it is not progressive - i.e., the injury is what it is and won't get worse over time.
• Cerebral palsy can span the spectrum of slight weakness in one hand to being unable to voluntarily move most of your body.
• Cerebral palsy is usually the result of an injury before or at birth.

How Cerebral Palsy effects our everyday life:

• CP is expensive.  It requires lots of therapy and specialized equipment.  Couple that with the fact that it's very hard to have both of us working full-time and still ensure Emma is getting all the support she needs makes us get "creative" in our finances.
• Having CP requires countless hours on the phone with insurance companies to get therapies and specialized equipment paid for.  This is a thankless job.  And it seems never ending.  It can be exhausting and insurance companies seem to want to make the process exhausting so you will give up and pay for the items out of pocket but I'm not a quitter!  I am, however, thankful for a speakerphone so I can do other things while on a perpetual hold loop.
• We think about places before we visit.  
• For friends and family:  Does so and so's house have a lot of steps to get in?  Is it big enough to bring in Emma's chair or should we plan something else for her while there?  Would it be better to meet out somewhere rather than at a house?  
• For pubic places:  Is there a wheelchair entrance?  An elevator?  Will it be too crowded to roll through the people?  We pre-plan our excursions when we are going to unfamiliar places.  
• We also have memberships to easily accessible places like museums and zoos and use them often.  Seriously, I know of few 7 and 5 year olds that have been to the local museums and zoo so many times that they ask do they have to go there again????!!!!  Mine do.  One day they will appreciate all the culture they are soaking in at such a young age.
• It gets easier and harder over time.  Easier because we are better at knowing what we need and ask for it.  We also have friendships with others that are living a similar life and that is priceless.  Harder because Emma is getting bigger every day and that makes it a bit harder physically.  
• Making adjustments to everything are just part of our everyday.  It takes time, but it's so worth it. 
• Some people say "I just don't know how you do it."  That gets old.  I hate that.  I usually hear "thank goodness it's not me who has to do it."  I would rather people say "I love that you are doing x, y,z.  Can you tell me how I can help with it?"  Usually the only people who say this are others who are living a life similar to ours.  
• I have to ask for help quite often.  I hate asking for help.  I'm getting better at it, though.  But, if I don't ask and you see me struggling....please offer some help.  It will make my day!

Stay tuned for more CP Awareness through the month of March.

Everyday

Yesterday I gave Emma a kiss and she gave me one back.  I caught it in a photo because I needed to cheer her up and she loves getting her photo taken.  I think it's one of my favorite sets of photos of me and Emma.  

I pulled out the PhotoBooth on the computer because Emma was cranky and nothing changes her mood quicker than looking at herself.  She is such a little ham for the camera!  Here is a brief video I shot of a cranky Emma about 15 minutes before Chris came home from work.  Emma was anxiously awaiting Chris' arrival home....just watch.

March is Cerebral Palsy Awareness Month

March is is a busy month for our family.  It's Cerebral Palsy Awareness Month, Spread the Word to End the Word day is on March 6th, Saint Patrick's Day happens, we'll celebrate several family birthdays and this year Easter falls in March.  That means we are busy around here.

It also means we are likely having LOTS of fun.  Fun is what we tend to do best ;-)

Now, back to Cerebral Palsy Awareness.  As you can imagine, we are pretty aware of it around here.  But there are quite a few things I've found out this month thanks to this post on Reaching for the Stars.

• Did you know over 800,000 Americans and over 17,000,000 people world-wide have Cerebral Palsy, the most common motor disability in children, with higher prevalence than muscular dystrophy, Parkinson’s disease, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome or cystic fibrosis.  Source: CDC,  National Institute of Neurological Disorders & Stroke (NINDS/NIH)
• For example, did you know that Cerebral Palsy receives no dedicated, line-item federal funding for Cerebral Palsy research at the CDC or NIH??  Zero. Zip. Nada.  Does this cause to gasp and shake your head in disbelief?  It should!!  Can we change this?  Yes we can, but it’s going to take families and individuals with CP standing together and raising our voices effectively.

I'm excited to delve deep into Cerebral Palsy Awareness this month and I plan to share more information on it here.  

Wordless Wednesday - Bedtime

Emma loves hanging out in the clean laundry.  Chris dons silly headwear to hear the girls giggle!

Braces on and ready for pillow propping so she can sleep on her side

In big bed surrounded by pillows = happy little girl

Finnegan picture by her side, puppy in her arms, night light on, Delilah paying on radio = ready for sleep!

Julia's view from her pillow

Cuddle position = bee pillow pet snug on one side and a blanket on the other (under the comforter)

This and that

I saw a mantra on Facebook and it made me laugh.  I think I'll make a print and post it on my bedroom mirror because we all need a reminder once in a while....

Things are getting better around here.  It's not the same without Finnegan and Julia is still carrying her photo around with her and has us all kiss the photo of Finnegan before she goes to bed and she is still making up Finney songs but we are thinking of all the fun we had with Finney instead of how sad we are that she isn't here.

I even took a look at a Lab Rescue website and looked at the labs up for adoption.  There are some dogs that sound wonderful and I'm sure a great family will come along and adopt them.  We aren't ready yet to add another dog to our family - I would just expect the dog to behave and act like Finney and I don't think another dog in the universe is wired like she was ;-)  

I also looked closer at the application for a companion dog for Emma.  It takes 3-6 months to complete the application process and another 6-18 months to have a dog placed in our home.  That would put Emma at 7 years old and sounds like a good age to us so we will likely think about beginning the process of applying soon.  I spoke with the group at the Abilites Expo the last couple of years and it seems like they are a good fit for us because of their philosophy and location.  And the cost, too, because some companion and service dogs are way out of our price range.  I think a companion dog that can do up to 40 tasks will be a big benefit to Emma for both her independence and her social life.  Just the thought of Emma having her own service dog gets me excited!