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

Raycom News Network

Anniston Star

The Bullseye effect...

     So, I think all of our family and friends know that Kerstin is a huge Target fan!  No kidding!  The child LOVES Target!  You may have seen the pic I posted a few days ago of her looking at the store with dreamy eyes like "I love this place!"  I have been wondering what is it about the store!  The Bullseye?  The red letters?  The lights?  Store signage? The conversations that Kerstin eavesdrop on when we're walking aimlessly through the store?  What is it?  Whatever it is, she loves that place.

     This past Saturday, I decided to go in with her as an escape and a treat!  It was crowded, more crowded than on our weekday trips to the store yet, Kerstin was still very happy being in the crowd, in Target.  Shopping alone with a child in a wheelchair can be a task.  Try pulling a shopping cart while pushing the wheelchair, and add in a crowded store.  Sometimes the customers can be understanding and happily allow room, other times some can be assholes!  

     This crowded Saturday, the checkout lanes were busy and crowded, there were workers stocking items around the lanes.  One in particular stopped what she was doing, came over and spoke to Kerstin.  She asked her name, seeing that she was nonverbal, she looked to me to tell her Kerstin's name.  When I did, she proceeded to talk directly to Kerstin.  That made me smile!  A kind act like that meant so much.  It didn't end there, she took the shopping cart and put all of our items on the counter!  I thanked her, she assured me that it wasn't a problem.  

     Our encounter with this store associate didn't end after she placed our items on the counter, she went back over to Kerstin and told her that she would probably have to be reminded of her name a couple more times but, she would get and that she looked forward to seeing her next time!  This lady we met Saturday wasn't the only employee in this store location that remembered us on our visits.  We were once again, walking around one day when another associate seem to have come out of nowhere to speak and ask how we were that particular.  This lady told me that she sees us in there a lot and that Kerstin always looks happy.  Yeah, happy because it's one of her happy spots!  

     Target, if you happen to read this, she will happily model for your ads, LOL!  

A Disability does NOT equal clueless!

On Monday, April 21, Kerstin had a follow up appointment with her neurologist.  His office is at Children's Hospital.  I am the kind of mom that always talk to and explain to her what her appointments are all about and where we're going for the appointment. 

So, needless to say, Kerstin knew all weekend that she was going to Children's Hospital!  Monday morning comes and she had much attitude!  No good morning smile, she barely looked at me.  The whole time, I'm talking to her, telling her that we have to get ready to hit the road for her appointment.  She just looked at me!!!  PLEASE do NOT think that just because a person has a disability  they do not have feelings or understand what is going on around them!!!

I had to slow down and talk to my little lady about her visit to Children's... I promised her that it was only an appointment and that she WOULD be coming back home.  Her mood lightened almost immediately!

So, a few hours later when we arrived at the hospital parking garage...she became startled.  I guess the fact that we were actually there, again.  This was our first return since we left Thanksgiving Day 2013.  Kerstin knew exactly where she was, and her mood changed once again.  

APPOINTMENT:

Kerstin has been having seizures, more than her usual.  These "breakthrough seizures" were happening without fevers or sickness.  They are called so because they can happen at anytime, for any reason even when on an anti-epileptic drug.  Missy is getting bigger, she's in a growth sprut and the lower dose had become ineffective for her.  We have an increase in seizure.  


Also, Kerstin's mommy, is about to be in contact with some people about a "Seizure study". (More info later)

Leaving the hospital...Kerstin was a very happy little girl!!!  She got to go to Target and come back HOME!!!

Kerstin with some of her cousins!  Easter 2014

Her cousin's hat..she said Kerstin would look "cute" with it on!

The day was long but, FUN!  Easter 2014

ALWAYS remember!!!

More info: Kid's Health 

Weight...among other things!

Happy New Year!! This is the time of the year when we start seeing all the commercials promoting diet plans, exercise equipment,  quick weight loss pills, shakes, sprinkles, etc...  We've all seen them, and most of us adults are tempted to try them because we need to or just from the mere popularity of them.  Some of our children could even benefit from a form of weight loss that is healthy and for life not fad.

My little one is the complete opposite, and on a mostly liquid, soft or puree diet; we've been on a battle with weight for some time now! God knows I'm doing my best and will continue to do so.  It just seems so frustrating when it seems as if my best isn't close to being enough.  In my eyes and mind!  In all of this, I can say that she has gained 1 pound from her December check to the January weight check.  I am so thankful to God for that, it just doesn't seem like it's enough for me though.

 It seems that way because we've had to deal with the development of a pressure area on her rear.  Due in part to the weight loss and a bony prominence! You don't know the tears I've shed in light of this. We've had to go get the cushion in her wheelchair "feathered" and cut to have a softer spot.  Her position is changed every so often, she's kept dry...things I was doing and it still happened.  OT doesn't want her seated on a "doughnut cushion" because of the risk of pulling and causing even more irritation.

Through all of this, we're still prayerful and very trusting that tings will continue to work in our favor.  Kerstin WILL continue to gain weight, the pressure area will clear!  I am so proud of my daughter and love her dearly!  She is making great strides at work on her Dynavox...had to treat her to something from her fave store, Target!

Pulling mommy's leg!!!

Tomorrow should be another interesting day of therapy!  Last week my little princess had therapy, but my sister went along with us to do some back to school shopping!  What would you know...the princess got to therapy and decided she was NOT having it and 'pretended' to be so sleepy and totally not in the mood for her session! Therapist came back out with her and told me that she seemed so groggy and not up to therapy that particular day...she was looking the part!!!

About an hour later, after lunch, we arrived at Target...ALL SMILES!!!  She was literally in her "happy place"!!  We were in there longer than usual because of back to school shopping for her and not once did she have to be re-positioned in her chair or anything...cool, calm, and collected!  :-)

Gotta love MY PRINCESS!!!

More to come...