Cerebral Palsy Awareness Day...not just a day!

     I hope you have on GREEN!  Today is World Cerebral Palsy Awareness Day!  What does that mean?   Awareness to those that don't fully understand Cerebral Palsy.  Awareness to let the world know that more and more people are both with Cerebral Palsy and countless others are diagnosed with it every day.  What do you know about Cerebral Palsy?  

     Don't worry, Cerebral Palsy is not contagious!  Cerebral is of or pertaining to the cerebrum of the brain.  Palsy or palsies are muscular conditions that are defined by tremors of the body parts.  There are three types of cerebral palsy:  spastic, which causes muscle stiffness and difficulty with movements;  athethoid, causes involuntary movements and ataxic causes problems with depth perception and balance.  So, there is no catching any of those. 

Cerebral Palsy info

      For so many families, mine included, Cerebral Palsy is not just a term, awareness day is not just like any another day, it's life.  We live and battle each day.  These battles include those stiff muscles, seizures, wheelchairs, countless doctors, therapists, specialists, medicines, hospital stays, surgeries and many sleepless nights.  I haven't met a parent of a child with special needs that don't understand what I am dealing with and they have faced some of the same battles or they are about to.  Connections are so important. 

     Along with the struggles and the battles, there are immeasurable joys that come along with raising a child with special needs.  I know that raising Kerstin has changed my life in ways I will never be able to fully explain.  I am more patient, having to speak up for her has bought out the advocate in my...that voice that will speak for those that cannot do it for themselves.  I will type/write too!!  I am not only Kerstin's mom, I'm her advocate too!  She has forced me to grow and become a better person. 

My reason!

     So, as the world is made aware of Cerebral Palsy, I encourage you to follow some of the links in this blog post.  Read up on Cerebral Palsy and gain a better understanding of our loved ones living with it each day! 

Cerebral Palsy: Kids Health

World Cerebral Palsy Awareness

My first blog post:  Life!

More to come...

Busy day!

     Monday, October 14, 2013 was a very busy day!  I still haven't recovered, it seems.  The day started out very early, we had 123 miles ahead of us and in order to get to Birmingham, AL by 8:30 a.m. for the first of many appointments.  So,we had to leave home pretty early.  Time for updated x-rays, and there we a lot of images taken. They were taken on her back, on her side, best bend to the right, best bend to the left.  Once those were done, we had to leave that hospital and head over to Children's were we would spend the rest of the day, really we did.  We were there at 9:30 a.m. and did not walk out until 4:50 p.m.  We had a jammed packed schedule.  Originally it would go like this, CT scan of her spine ( Thoracic/ lumbar), appointment with  pulmonologist, appointment with neurologist and an appointment to see APASS once she received an okay from the specialist.  We ended up having to have a chest x-ray done for the pulmonologist.  We started out on the second floor for CT scan, down to first to see pulmonary doctor, back to second for chest x-rays, down to one to finish up pulmonology appointment, across the hall to neurologist and finally back upstairs for APASS appointment.  Roller coaster day!

     I was not expecting any results from the x-rays at the doctor's office or from the CT scan,  Kerstin's orthopedic specialist because he was in surgery, and I knew he will need to look at them in order to give me results.  Which I'm anxiously awaiting.  Being a mom, and a worried one at that, I've been examining the x-rays and comparing them.  It seems as if my little lady's curve has increased since July.

On the left is the image taken July 23 and on the right October 14.

     After chest x-rays were done for the pulmonary appointment, the doctor came in and informed me that my daughter's lungs are in fact, being affected by the scoliosis.  She informed me that it is best that the surgery takes place soon.  Now we have another diagnosis added to her list of medical concerns, Atelectasis. This refers to collapse of part of the lung.  Along with this new found diagnosis, comes new meds and therapy.  Kerstin will have to have breathing treatments twice a day followed by chest percussion therapy (CPT).  The treatments will either be from the nebulizer or Proair puffs. I had to have in office training on how to cup my hand and how to perform the CPT.  The treatments and CPT were started on Tuesday.  My princess is not a fan of the percussions.  She smiled at first, I think she thought we were playing a game of some sort.  Wednesday, she cried a little when I started.  Today the same.  I talk to her before I start, as a warning of what's to come.  When the percussions start, she looks at me like, "Why are you doing this?"  I don't like doing them, it is uncomfortable to me, so I can only imagine it's the same for her.  Having her mom, seemingly beat her in the chest, sides and back can be very confusing to a child.

Getting a breathing treatment to be followed by CPT. 

     We are 18 days away from surgery.  Kerstin only has four days of school before she is out until possibly January.  Tomorrow we will go to Red Cross to make directed blood donations for her procedure.
She is always surrounded by love and adored by many.

Kerstin and her cousin listening to music as we wait...

More to come...