Wednesday, December 17, 2014

December 17, 2001

     Kerstin was on her way to change my life in more ways than I could ever imagine. I don't know what I can say that hasn't already been said about my love for this little girl that has done amazing things in her now, 13 years of life!  Kerstin has and continues to touch so many hearts with that big, bright smile of hers.  I've told my family on several occasions that Kerstin has this ability to make people love and want to be around her,

     Last year, I wrote the post "We Met!" I was excited to meet this person that was growing and moving inside me.  I was  happy to see the person that I would be "mom' to.  December 17 is a day that this momma cannot forget.  I couldn't believe that I was to be someone's mom and now, I cannot believe that she is a teenager!!! 

     Kerstin knows that she is loved and cared for by so many people.  She has a big day coming up!  Glad she is feeling better, we are skipping school and going out, then she has to go to her cousins school for their Christmas program.  Friday, she is going to see "Annie" on it's opening day.  Saturday; a big day is planned...an awareness party, celebrating KERSTIN!   Pictures will come later. 

   So, to Miss Kerstin, just an ever so gentle reminder, using the words of Bruno Mars:  "When I see your face, there's not a thing that I would change, cause you're amazing just the way you are..."
You are amazing girl...this is your day.  Happy Birthday, I love you so much my princess. 
Happy Birthday Kerstin!

Thursday, November 27, 2014

Happy Thanksgiving!


Enjoy you family and friends!




Tuesday, November 11, 2014

Happy Veteran's Day

     To all the men and women that are serving, have served and the deceased, Thank you for your service!  If you have served, and suffered or are suffering from post traumatic stress disorder, hopefully you are getting the help you need and have a great support system!  






Monday, November 10, 2014

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.