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 well...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!


#IAmMedicaid

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.
     




Sunday, October 30, 2016

Medicaid in Alabama!

     Medicaid in Alabama!  Cuts to medicaid.  Lawmakers in the state saying it is too costly, they're not the only ones saying that, some citizens of the state say the same as the lawmakers that represent them.  Back in the Spring of this year, I was asked by my program director if I would attend a press conference at the state house on Medicaid.  She told me to prepare a 2 minute statement on how Kerstin has benefited from medicaid and how possible cuts would impact her life.  My first thought was 2 minutes to tell how a lifetime of much needed insurance has helped save my daughter's life and secondly, me, her mom, saying sharing some of our life story in front of a room full of reporters, law makers, advocates and strangers!  

     How was I going to do this?  As always, with Kerstin by my side and my older sister being our personal photographer.  I shared just some of what potential cuts could mean for Kerstin.  In order to get there, you'd have to know her story.  Kerstin has had 4 surgeries, 3 in one year, just a few years ago, she's had a few hospital stays, thankfully the last one back in May was not from an illness at the time but for a seizure study.  Aside from hospital stays, Kerstin requires numerous medicines and medical supplies to live...survive!  There are medicines for seizures, spasticity, along with her nutritional and feeding needs.  Without medicaid, it would be extremely difficult and near impossible to supply all of these needs for Kerstin on a part-time income.  
     I reported that the Pediasure Kerstin was on at the time cost about $11 per six pack, if you bought them in Walmart, that was just for the regular Pediasure not the specialized kind that she needs because of stomach sensitivities.  Pricing this on a site like Amazon, the cost is significantly higher, for a 24 pack, it is priced at $136.78.  That case would not last her a week!!   Because Kerstin is a growing child and her nutritional needs have changed, the new therapeutic nutrition she requires has changed as well, it is much higher in cost, $209.97 for a 24 count case.  Imagine having to pay those costs out of pocket and on a weekly basis just so that she could eat.  These costs do not even touch her medicines, or things like her feeding tubes, extension sets, syringes and diapers (wipes aren't even covered by medicaid).  Medicaid, makes all of this possible for Kerstin's survival.
     Along with all of her medicines and nutritional needs, Kerstin has a number of therapists, doctors and specialists.  These necessities are paid through medicaid.  Kerstin and patients on medicaid go to the same doctors, therapists, drug stores and use the same medical suppliers as patients with private insurances.  The thing that seems to be left unsaid is that, if medicaid is severely cut, that means that these same agencies, organizations and medical professionals may make cuts or leave the state altogether.  If that happens, my child is and people on medicaid are not the only ones without needed medical suppliers and providers.  These cuts could have negative and potentially harmful impacts throughout.  
     There are so many misconceptions out there about medicaid.  Some being that, the program is misused and that many people on it actually do not need the services.  I beg to differ, especially when it comes to my daughter.  As I said, in an earlier interview, she is a constituent of this state and needs all of the benefits because of her medical needs.  I am a part-time worker, part-time student, full-time mom and now a home school educator to Kerstin.  
     Just this month, Kerstin and I were interviewed again for continued input on medicaid in our state and it's potential cuts.  It is my hope that humanity is at the forefront of this story.  She was filmed at therapy, a much needed resource paid for by medicaid, then she was filmed at 'therapy'...her routine after therapy trip to Target (not paid by medicaid, lol).  

That portion has not been aired, dates to be announced. 

Reports:

WSFA :I am Medicaid' campaign aims to show lawmakers the humanity of what's at stake




Monday, September 19, 2016

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,

Tuesday, May 17, 2016

Epilepsy Monitoring Unit (EMU): Day 1

     I am going to try and make a post at the end of day each day of our stay here at the Children's Hospital EMU.  As I prepare to post about the busy day, I can't help but think about my mom.  I listened to a recording of a conversation I had with her on May 17, 2015 at around 9:50 am.  Yes, one year ago, Kerstin had had a seizure and was restless the night before (May 16, 2015), my mom was concerned as always and as we talked, she told me that she hoped Kerstin's doctors could find out what was going on with her.  Well mom, it's been a journey and many appointments later, we are here to go through another series of tests and studies to see what's going on.  
People watching at admitting office

Welcome screen on the telly!


     Today, we checked in at noon.  Then it was on to the 10th floor of the Russell building; a very familiar floor.  We've even seen familiar faces.  All too surreal.  I am very thankful that Kerstin is not here because of unexpected surgeries or illnesses.  However, we are here because of the increase in seizure activity Kerstin has been experiencing.  Tonight is the first night of monitoring, she's been placed in her "mummy head-wrap", leads and wiring everywhere.  She is content, comfortable and seems to be relaxed.  Though, for whatever reason, her temp tried to spike a bit, no worries, it has already gone down.  
Lead placement. 





     Not sure what the night will include but an update is on the way tomorrow.  


All wrapped...monitoring in progress. 



More to come...






Wednesday, February 17, 2016

Seizures Suck!

 

   "Seizures Suck!"  If you have a family member or if you know someone who has a seizure disorder or is diagnosed, you have probably heard them say those words or have seen them around.  They are so true.  Seizures suck the life out of a party so to speak.  The day or night may be going along smoothly, then out of nowhere...SEIZURES happen and literally suck the joy from the moment. 

     Kerstin's first seizure (first visible one anyway) was April 15, 2004.  That is a night I won't forget for some time.  Since then I can't even begin to count the number of seizures she has had.  However, it is a fact that the older my daughter has gotten, the more frequent her seizures have been happening.  At first, they were spaced by days, weeks even months, not anymore.  I can tell you that we are blessed enough to say that she is not having them on a daily basis like so many with the diagnosis.  

     On Monday, February 15 we were once again at Children's Hospital for another neurological appointment.  My oldest sister went along with us to this seemingly routine appointment and I jokingly told her that I hadn't been on the other wing of the hospital since Kerstin had been discharged after that month long stay.  Right off the elevator we even bumped into a former nurse practitioner that worked with Kerstin's orthopedic specialist, chatted with her for a minute and rushed off to the appointment.  

     Once in the back, Kerstin and I snapped a few pics, she's always camera ready :))  Nurse comes in first and we share seizure activity since the last appointment, talked about sleep pattern and routine question and answer.  Later, the doctor comes in and routine checks are done, we go into detail about seizure activities and how long they last.   Kerstin is a growing young lady, Dr.  talked all about hormonal changes, progesterone, Depo-Provera, ovulation, cycles and the numerous common female changes that can in fact increase seizure activity.  




     Also, noted was the need to have an updated MRI study done as well as the need for a sleep and seizure study.  Okay.  "I need to have all of these done before we consider the Depo shots and to rule out the need for any epilepsy surgery." says the doctor.  The stunned mommy in me, couldn't even ask details on "epilepsy surgery".  There will be no need for that.  Yet, in my mind I am still thinking that the sleep study, seizure study and MRI would be an overnight process...NO!  We are now mentally preparing for a week long stay in our former apartment building called- Children's Hospital of Alabama-Birmingham!  


The journey continues...grow with us!

More to come... and yeah,



Tuesday, February 16, 2016

Movies!

     "Inside Out"!  We really enjoyed the feelings and emotions of "Riley".  Really cute movie!