Ever Growing Vocabulary.

     I must say it again, having a child with "special needs" causes the parent to learn so much and learn it quickly!  You would be surprised at the amount of information that is giving to a family in a single doctors visit, an IEP meeting or at a therapy appointment.  The things and information I used to take for granted, I can no longer.  

It's been a long week, she hasn't been feeling well.  So, seeing this smile return made my night!

     In the not so distant past I had heard of Baclofen (BAK-loe-fen) and Scopolamine (which I keep wanting to pronounce sco-lop-a-meen instead of skoe-POL-a meen).  Never knew that one day, Kerstin would actually be recommended for them both.  That's where we are on this journey now!

Baclofen:  Used to treat children and adults with severe spasticity, and to help with the treatment of physical and occupational therapies.   Kerstin's PT suggested we see her newest doctor, who is a doctor of physical development and a long background with Cerebral Palsy.  Both her OT and PT sent separate letters to Dr. Law suggesting Baclofen to aid in their treatment.  

     Kerstin can be very rigid at times, making it difficult to dress her as well as perform various therapies.  Also, she becomes so spastic, that her kicking becomes so hard.  It is hard to see your child go through things like that!

     The second medicine; Scopolamine patches. The little patch that was featured in the Wordless Wednesday 09/10/14 post. These little patches are often used to prevent nausea and vomiting even motion sickness.  So why this patch for drooling?  Scopolamine or "transdermal patches" have been found to be very effective with controlling the drooling in patients that have traumatic brain injuries. 

     No medicine comes without side effects.  Both may cause dizziness and drowsiness.  The Baclofen causes frequent urination while the Scopolamine causes dry mouth and throat, as well as dry skin (it dries liquids) and we were told to make sure that Kerstin does NOT get too hot and has plenty of liquids!  Needless to say, you won't find us out and about too much in these final days of warm weather!

Lets not forget what happened on this day 13 years ago!

Name change...new things

I decided to change the name of this blog from "Life: Just a mom raising a child with "special needs"" to "Growing with Kerstin: Raising a child with "special needs".  Why?  I am doing just that, I am growing every single day.  I am growing as Kerstin grows.  Growing in my faith.  Growing in knowledge.  Growing in awareness.   Growing in and with respect.  

All of this growing that is taking place within and around me is happening while I watch my daughter grow each and everyday.  She is growing to be a young lady that is loved more than the day before.  That love is not only from me, her mom but, it is from so many people around her. 

Kerstin is a trailblazer!!! I am blessed to be on this trailblazing journey with my daughter.  The things I fight for for her will benefit so many other children and adults with special needs and their families.  

So, we are growing and I am so excited.  I cannot wait to continue to share our journey and impressions left because I am no longer silent or afraid to advocate for Kerstin!

More to come...after all, we are GROWING,