Not Our Friend!

   

     First, the story behind the Wordless Wednesday 11/05/2014 picture.  When we are home I usually sit on a stability ball to give Kerstin her boluses.  This smile happened when I was about to sit, the ball started to roll and I made a sound that apparently had her "tickled pink"!  What a smile?!?

      Now, I can think of a few people and things that fit the category; "Not Our Friend!"  When raising a child with "special needs" you encounter things along the way that just are not friendly or ideal.  When these happen, we push forward.  I am especially amazed by my daughter's strength and courage.  I often say that I wish I had just an ounce of it.  

     It was this time last November that we found out that Kerstin would not be going home after her spinal fusion as originally thought.  She hadn't been able to take a small amount of her bolus without abdominal distention, not just a little bit either. So, for that unexpected illness, Pancreatitis comes to mind a year later.  Definitely not our friend!  She was diagnosed until a few days and many tests later but, she had it.  My child had been diagnosed with something the doctors and nurses said is rarely seen in children.  

Spinal Fusion had gone well.  She was dealing with something else.  Receiving TPN and Lipids for almost 3 weeks because of Pancreatitis.  It didn't steal her smile.

     Epilepsy/Seizures, I don't think I really need to explain why they are not our friend.  For me, as Kerstin's mom, they seem to come without warning.  I am very thankful for the Facebook pages that I have found.  They are filled with links and information on how seizures come on and what the person feels before, during and after and episode.  I've never had a seizure but, Kerstin has had quite a few.  They are hard to watch.  As a parent seeing your child seemingly looking at you but her eyes are so void it's like she is looking through you!  Not even a gentle rub can stop them.  They don't leave until they are ready or Diastat is administered.  Even then, as we saw earlier this year, did not immediately work.  Seizures can be vicious!

     Spasms and spasticity are not out friend either!  We have muscles all over our bodies, that means that spasms can happen anywhere.  Kerstin usually has spasms in her legs that causes her to at times violently kick.  At times, gently rubbing them can sooth her and others required a pain med to cease.  Spastic Quadriparesis is the medical terminology or diagnosis given as types of Cerebral Palsy. 

     Sleepless nights, are not our friend.  Kerstin goes through these phases of having very sleepless nights.  Some nights, she will wake up at midnight and not fall asleep until the next morning...6 a.m.  That isn't good for anyone. 

     Medicines that do not work and cause other issues, not our friend.  That recently happened with the scopolamine patch.  The first patch, used to help with drooling, was used September 6.  A few weeks in, I knew it didn't seem to be helping, I decided to give it until November 6.  Had to discontinue them as of November 3, causing a rash behind both her ears.        

Right ear

Left ear..upside down

     I could go on and on about the things that are "Not Our Friend", on this journey, I can only imagine there are plenty of things that aren't friendly, that require more energy than others.  As the saying goes, we have to "role with the punches".

More to come...Neurology appointment today.  Hopefully we will have an update on the recent seizure activity. 

Access for everyone!

     While working on a class assignment, I came across somewhat of a challenge for everyone.  I will include it later in the post.  This challenge made me think about what I have experienced in the past week.  After Kerstin's therapy appointment last week, I had to go to the Sears Repair store to pick up some things for the lawn mower.  This was my first time going to this location.  I must say it was an eye opening experience.

     The experience was so touching, I had to tweet Sears about it and I've sent an email to Americans with Disabilities Act (ADA) about this and the need for better changing tables/stations in public family restrooms.  We, my daughter, my 10 year old and 4 year old nieces pull into the parking lot.  There are faint lines for accessible parking, Great.  No one was unnecessarily parked there, even better!  The store has steps/stairs to the entrance door and NO ramped access!  NOT GOOD at all!  I had to leave my daughter and nieces in the vehicle, running so that they could have air.  I had to ask the 10 year to lock all the doors until I returned.

Access for everyone!

     A few days later, I mentioned the experience to my sister.  She said something so critical yet, something I know many people do each and everyday.  When you have the ability and use of all limbs and can climb stairs without incident you don't think of those among us who cannot do the same.  

     So, I will challenge you to try this.  I think it's worth it. I even posted it to Facebook/Growing With Kerstin. 

Worth the experiment! Please take notes and share if you don't mind.

Many of us take for granted our ability to come and go as we please. With the exception of a few buildings, which are off-limits to the general public, we are free to enter any building we wish, whenever
we wish. During the next week, keep track of the buildings you enter, the streets you cross, and the activities in which you participate.

* How accessible are these to persons who are in wheelchairs, blind, or hearing impaired?
* Are the room numbers in your building labeled in Braille?
* Are the steps ramped or is there an accessible lift or an elevator?
* What areas have not been made accessible to these individuals?
* How does accessibility limit their participation in the activities in which you regularly participate?
* How could these areas be made more accessible to individuals with disabilities?

No Parking!!!

     How many times have you gone to Walmart, the mall, the movies or even your child's school and someone was parked in accessible parking and you felt they shouldn't park there?  It has been too many times to count for us!  Feelings and counts aside...they have no tag or placard acknowledging the need to use accessible parking.  Let's keep in mind, not all disabilities are visible!  The person may have asthma or COPD, Epilepsy or some other type of medical need that causes them to need to park close to where they are going. 

     We also need to "keep it real" and be honest!  People are abusing the tags, the placards and overly abusing accessible parking.  It is NOT convenience parking!  That parking is there, close to the buildings and spacious enough for individuals and families that really need them.  We have people and wheelchairs to unload and it CANNOT be done so easy in the usual aisle parking. 

     I know that every single time I have gone to Walmart, I am guaranteed to see people pulling up withe placards swinging from the rear-view mirror, when they clearly state to remove before driving. 











 The part that really bugs me is when there is a vehicle parked on the striped lines in accessible! 

That is very inconsiderate when, like I stated earlier, families are unloading people and wheelchairs.  People are parking in ramp vans which need the extra space, 8 feet is printed on most vehicles with ramps! 

     Vistaprint just might be getting business!  Whenever I see a vehicle parked on the lines, they will come out and see something similar to one of the pictures and a little message saying "Think before you park!"

Be mindful, the spaces are not a luxury!  They are a necessity!