Thursday, June 22, 2017

Coming from the heart!

     We've all seen what has been in the news as it pertains to healthcare.  The United State House passed their version of a healthcare bill back in May that will take away the healthcare of millions of Americans. The bill would drastically cut Medicaid, which is the sole form of health insurance for so many.  In other cases, it is a secondary insurance for many families that receive their health insurance through work and other forms. Now, we had the Senate republicans release what they are calling the Better Care Reconciliation Act that will be just as devastating to so many people and not just those relying on Medicaid.

     Everytime I think about the potential cuts to Medicaid and the affects it could have on not only my child but others as well, I'm reminded of what Jim Carnes of Alabama Arise said as it relates to Alabama.  He said that the state itself can be considered to be on Medicaid; if you have doctors leaving the state because of cuts.  When that happens, my child isn't the only one affected by that pediatrician that has left but, the one that is on Blue Cross is as it may be the same doctor. Lets look beyond the doctors and look deeply at the overall affects.

     As you all may already know, Kerstin has a feeding tube, and it is the only way she gets nutrition, and her medicines to live.  All of her medicines, feeding tube(s), extensions, syringes, nutritional formula, gloves, diapers, wheelchair, bath chair, hand splints, neck support(s), AFOs, therapists, specialists, glasses, dentist, ophthalmologist,nutritionist and so much more is covered by Medicaid.  Completely covered!  If it was not for Medicaid, these costs would be devastating on our family.

     Recently, I had to do some paperwork after changing medical suppliers for Kerstin and the forms I needed to sign came with a complete breakdown of the cost of her feeding supplies.  Per nutritionist, Kerstin is to have 3- 8 ounce boluses of her nutrition and 1- 6 ounce bolus; the formula comes in 8 ounce containers that cost $9.33 per container or about $224. 00 per case (she gets 5 cases per month), her bolus syringes cost $650 per month, the feeding extension costs $100.00 and the 'button' (feeding tube) costs $300.00.  These costs DO NOT include any of Kerstin's medicines.

     Now, as titled "Coming from the heart!", I am coming from my heart with this entire post.  We've all heard and some may have even said things like "Medicaid shouldn't be given to the lazy", "these people need jobs" and so much more.  Well, I'm not lazy, I can't be, I have a daughter that is completely dependent upon me for her daily living care, even on days when to quote a line from "The Color Purple Musical", 'I wanna sit and do nothing', I can't.  I can't take on a full time job outside of our home because of her needs and care.  I have a part-time job and I am also continuing my education online.  Kerstin is a minor child on Medicaid...know any jobs for her?

     Kerstin's life depends on Medicaid.  Without it, she would not have had the medically necessary surgeries she's had, including the g-tube surgery that I fought against, out of my own fears.  Kerstin is thriving and surviving because she gets the much needed care provided through Medicaid.

     It's not too late to make your voice heard about healthcare!  Call, text, write, tweet and do it again!


Tuesday, March 14, 2017

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.