Side lying.

     Once again, it has been some time since I've made a post with updates on Miss Kerstin.  Well, she has been doing well.  Since the last post she has had another round of Botox for her wrists.  Just in the past two weeks or so, her occupational therapist has mentioned talking with Kerstin's doctor about possibly doing tendon lengthening surgery to help with relaxing her wrists.  That part of this journey will be closely monitored.  For now, we will talk about dear old side lying.  As I am writing the boss, is wanting to be a bit fussy about side lying and she's only been down for about 5 minutes so far.  She has a few more to go. 

     Last month at her PT visit, therapist suggested "side lying" to help with another cumbersome place...the tightness of the right side of her neck. Hence, the neck support and her always tilting her head down and to the right.  Sometimes Kerstin is okay with it and others. like right now, she grumbles about it.  However, she stops long enough to watch tv for a bit and starts right back.  It is suggested to keep her in this position as long as she tolerates it.  One day toleration was well over an hour.  We will see about today.  

     A little about side lying.  Most probably equate this position with pregnancy however, side lying can be very beneficial in some forms of sleep apnea, it can help with some clients/ patients with dysphagia and numerous other conditions.  Case and point, miss Kerstin, diagnosed with Cerebral Palsy and now needs side lying to hopefully help strengthen and lengthen muscles in her neck, further helping with her head control.  More information on side lying can be found here and here.  

     Kerstin is to be positioned onto her left side, with her head and spine aligned, eventually lowering her head in order to stretch and lengthen the muscles in the right side of her neck. Check her out in these pictures.  

Side lying.  She's ready sometimes and others not so much.

     

Where the Journey has taken us...

     It has been a few months since I've posted last but, needless to say, we are still on a journey, new things to explore each day.  Since Kerstin's hospital stay for the video seizure study, she has continued to have at least one episode per month, which is better than the point she had gotten to.  Her neurologists have advised in the past that as long each of these seizures were not like a video of one of her seizures shared with them, they would not be too alarmed by her activity.  It seems as though seizures will be a part of our journey.  They don't want her too medicated that she is not very alert or aware; I don't want that for her either.  I will have you know that those days that she was in the EMU, there was no seizure activity of any kind, as soon as the two hour trip home was complete and she was all relaxed...seizure!  

     So, after that seizure study, came the end of the school year and Kerstin's time in middle school.  Off to high school!  After many years of ups and downs and hard fights of advocacy for inclusion, accessibility and much more with the local school system, I decided to start a private home-school for Kerstin!  Yes, we are on the journey of homeschooling.  The lessons are modified and truly catered to her, we are on her schedule.  After talking with a friend about homeschooling this past Spring, she made me realize that Kerstin's education didn't have to take place all day long in a classroom, especially not a "self-contained" setting.  We are about a month in and it has been fun for me to find great resources on Youtube and various other forms.  Kerstin has been enjoying the lessons except that one day, I decided to take Science outside...not a good idea in late August.  It was still way too hot!

     Kerstin has been getting much needed PT and OT, and on a regular basis, unlike services in the school setting.  We have been working on some neck exercises with physical therapy and wrist tightness with occupational therapy.  The wrist tightness and contracture lead us to Kerstin's neuro-motor/ physical development doctor to discuss Botox as an option.  Well, she got her first round and weeks later her OT is happy with some of the flexibility she is gaining and specially made some hand splints to further help with the wrists.   We are still working on neck support and strengthening.  PT suggested we look into a product that helps with those things, Dynamic Cervical Orthosis.  Information is being requested on the product as it is something new for us all. 

     It may not be well known but, I am grateful to be in a position as a Family Resource Specialist with Family Voices of Alabama.  The mission of Family Voices is to ensure that there is family-centered care for children and youth with special health care needs.  The information center that I am a part of is staffed by parents of children/youth with special health care needs.  I have been with Family Voices a little over two years now and it has been a wonderful step in this journey of education and advocacy.  We have this booklet titled "Transition to Adult Health Care Guide".  I have had them in my supplies and have handed them out at conferences and workshops and have said to myself countless times that, "I have a while before I need to go through one for Kerstin".  No...it came sooner that I thought.  I got a letter from insurance and social security with information on how to prepare as "the minor child approaches adulthood"!  WHOA!  This is happening too fast.  Kerstin was just starting school, now she's in high school and I have to think about "adulthood".  I pulled out a copy of the transition guide and started combing through it realizing that  my baby is no longer a baby. 

     We are always on a journey and a lot of times they lead us to Target and Starbucks...Growing With Kerstin.  

More to come,

Wordless Wednesday- May 28, 2014

:))