Friday, April 29, 2016

The Magic of Crayon Crunch

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A while ago I found a really unique book that allows you to personalize the character to look like a depiction of your own child.  Sure there are lots of books that offer personalization there days - but very few that have the option to incorporate a child's special needs into the book.   I wasn't sure one even existed.  I stumbled on Crayon Crunch really by accident.  I thought initially it was a really sweet idea.  A child as the main character of a book, so that a child could visualize themselves as a character in the story on an adventure.  Noah has always loved social stories that we'd use for sensory and therapeutic purposes, but he never had a book that was all about him in by the way of fiction child's book.    I wasn't even sure if the makers of Crayon Crunch could turn Noah into a character.  But with a little communication back and forth, Noah's custom character in a wheelchair was created.  And it was precious. 

The book is easy to make, you first chose how you'd like your child character to look like.  Hair color, hair styles, eye color, eye shape, skin color, clothing choices, accessories such as glasses and shoes.  And then you give your character a name.   It's really a fun process to go through and make your child's character online.  Then you have the option of drafting a personalized note to your child that appears in the back of the book.  Something that makes even extra special.  You submit it and wait to hear back on the creation of your child's book.

Noah's Character


Luke's Character
For Noah's character we had a brief correspondence about what his character would look like because we needed a wheelchair for his character.  I wanted something that depicted his special needs and use of equipment but also made him feel like a little boy at the same time.  So Noah's character is using a standard wheelchair frame, which makes him look perhaps a bit more independent than he is in real life, but also gives Noah when he reads it a sense of understanding it's a fantasy version of himself.  

We made books for Noah and Luke, so that they'd each have their own adventure book.  The stories are the same each with their own character and special message in the back of the book.  Noah was thrilled when he seen it.  He squealed with excitement and still does every time we read that book to him.  There is something really magical about a story that features your child as a character.   The only thing I likely wish is that the book could combine characters so that Noah and his little brother could be in the same book together.  That would be really fun for them to interact in a story together with multiple children. 

These books would make a fantastic gift for a family that has both children with special needs and typical children.  It's a great suggestion for a grandparent, aunt or uncle wishing to give a special heartfelt gift for a birthday or holiday.  Crayon Crunch has great customer service and is prompt with their correspondence and completion of the book.  The softcover books retail at $34.99 and the hard cover books retail for $44.99.  Both of our books are softcovers although I do with they were hardcovers as they will be a keepsake book that they will have for a life time that will eventually wind up in a hope chest for them as they get older. 


To explore your custom personalized crayon Crunch character book you can find them here:

By far Noah and Luke's Crayon Crunch books are a favorite go-to book in our house.  They don't seem to grow bored with the story and it maintains their interest.  I hope that Crayon Crunch expands and does additional stories and adds other characters to the same story in the future.  It's a really fun and playful concept for children - especially children with special needs who have limited mobility but who are still very cognitively aware and wishing for the same childhood experiences and adventures as their peers. 



Happy Reading Adventures!

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, April 21, 2016

Shedding Stress

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Day 11 of Noah being sick.  The last five nights have been really hard on him with minimal sleep.  I can hear his stomach grumbling and growling causing him to arch and whine throughout the night.  Only finally giving in when the sun is nearly up.  Sleeping for sometimes what was 2-3 hours at best.  Three doctor's visits total with this illness and probably at least five more phone calls on top of that trouble shooting for advice.  With the vomit and diaherra stopped, Noah had this gurgle sound to his voice and extra secretions that he just couldn't process.  His doctor giving a best guess that Noah had a stomach bile acid problem secondary to illness.  Noah had tried a few medications for acid reflux in the past that failed, for a variety of reasons.  Some due to taste, oral texture, effectiveness etc.  His doctor decided to prescribe Priolsec which is time released. 

I was relieved because I felt like Noah would have some relief soon.  My local pharmacy didn't have it in stock, but I told Noah's nurse I'd drive as far as I needed to in order to get it if she located a pharmacy that had it.  She found one that was about a twenty-minute drive for me.  Not bad.  I lined up respite care for Noah so I could make the drive.   On my way there, Chris called to let me know Noah's doctor's office called with bad news; Medicaid was requiring pre-authorization for the medication.  I didn't really know what that meant.  This was the first time ever Noah ever needed pre-authorization for a medication for Noah.  I assumed it was simple - a signed form from a doctor explaining the need.  I kept driving assuming by the time I reached my destination all would be sorted out. 

Yet when I arrived at the pharmacy the pharmacist informed me that Medicaid could take up to seven days to decide to approve it or deny it.  That this wasn't going to be an immediate yes.  I said I didn't have time and was willing to pay for it out of pocket until she told me the price for the medication was $450.  While I was at the pharmacist Noah's nurse called and left me a message indicating that Medicaid did make a decision quickly and denied pre-authorization.  And refused to cover Noah's medication until he first tried two other medications - even though he already had many months ago.  Medicaid felt that his attempts at those medications were not "recent" enough and demanded that he try them again.

I'm not even sure I can express to you how incredibly backwards this logic is.  You force a child - or anyone for that matter to try two other drugs (which are costing the insurance company money) only to know they won't work and then forcing them to pay for a third.  And what makes Medicaid think that they know what a patient needs when they've never examined or seen that individual?  It was five o'clock and that I stood knowing all offices government and the doctor's  had closed.  It was game over for me.   The pharmacist feeling badly for my situation told me I could buy a generic medication and attempt to open it up and sort the beads - in a best attempt to divide the dosage by eye-balling it and then trying to find a way to get Noah to orally accept it in order not to gag and swallow it.   I tried to split one open to give Noah relief - those little grain of sand-like beads went everywhere - including shooting into one of my eyes at one in the morning.  I tried to sort what looked like equal amounts to come up with what might be around 10mg.  Nervous of course because these things should be pre-measured for him.  He did gag on it, and it was hard to get him to swallow the beads, they collected on his teeth as I did my best to force a swallow with a spoonful of juice.  I knew that this wasn't going to work. 

I wasted no time making phone calls this morning.  Medicaid customer service sent me to the Medicaid doctor's line - and they sent me back to Medicaid customer service . I got bounced around for a good half hour with no one willing to talk to me about the situation.  They claim it was illegal to do so, even though I was Noah's mother.   Noah's doctor wasn't sure really what to do either.  Their hands are tied.  It certainly isn't their fault that any insurance company denies a medication that is prescribed to a patient.  I was referred to the main campus to assist with filing an appeal of the medication.  They filed an expedited request to appeal but warned me it could take up to 72 hours to hear back.  Non-expedited responses from a prescription Medicaid appeal apparently can take up to seven days. 

This was my first prescription denial for Noah - he's used to denials of all kinds - so I guess it's no surprise that a prescription denial came his way too.  The very same day Medicaid denied a $104 part for his wheelchair.   Two hours later I received a call that the denial had been lifted and that the medication Noah needed was not only approved but waiting on him at his normal pharmacy pick-up across the street.  Certainly the fastest appeal process to date.   I still don't know how something so complicated turned out well in the end.  It certainly was a very big mess.   I am hoping that this brings Noah the relief he needs to get his stomach back on track and finally be able to rid himself of the complications this illness brought him.   I want my awesome little dude back to his happy self. 

He sucked down six pouches of organic yogurt, the first real attempt at food since he has been sick.  And kept it all down.   He was able to self-soothe himself today for small periods of time, although this evening he seems to be struggling a bit - a gag and cough reflex has presented itself and he is complaining and whining again.  I am hoping from being over-tired.  I can't tell if he's in pain, stomach ache, head ache, I have no idea.  I feel so helpless in not knowing or having the answers.   Deep down I'm so worried that I'll be up again all night long - difficult for both Chris and I who are tag teaming Noah in the night to try to get him through whatever is bothering him.

And I want to shed some stress.  I can't even begin to tell you what these last eleven days have done to me.  The panic and fear, the sleep deprivation followed by nightmares from being overly tired when I dozed for even five minutes - the worry, the laundry that wouldn't stop, two weeks of therapies and appointments that were cancelled.  Appointments I flat out missed or failed to reschedule timely - which is so uncharacteristic of me as I was knee deep in trying to get Noah well.  I felt like I was treading water at best and not doing a good job of it.   My mother did her best to take the load from me during the day offering me reprieves and help the best she could.   My soul feels worn out.  Each morning I just hope he's going to be back to his normal self.   So I can put this chapter behind me and say we made it through something really terrible and it's over and we conquered it.

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sunday, April 17, 2016

Hit The Target: The T-Max Shower/Toilet Chair

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After numerous communications and documentations submitted to USA customs, they finally decided to release the customs hold and allow entry and delivery of Noah's T-Max Shower/Toilet Chair from the UK. It did cost us some extra fees in duties and taxes that we were unprepared for and are eternally grateful to everyone who came to Noah's rescue to assist with those customs fees.  For a while there, I was quite worried that the T-Max may not ever show up on the doorstep.   But it arrived.  Shortly before Noah became ill.  In a massive box on a crate there it sat in our garage.   Another a dream that took a lot of time, work and effort to turn it into a reality.



We unwrapped that box quickly.  And sat Noah in it only to find that his bum slid through the potty hole of the shower/toilet chair and that the only thing holding him up was the bucket underneath.  For a moment I kind of panicked.  I knew he couldn't use it like that.  I wracked my brain for an insert that would help take up some of the space in the bottom.  Noah just has a really little bum.  He's a super tiny guy and and his bone structure and body frame is small.  Because of the foam material I knew that many products we had here in the US wouldn't work as they'd dig into the material and ruin it, and other inflatable options that they use for people who have hemorrhoids or women who have recently delivered babies were too big.  The abductor in the center made it even more challenging.  I was worried that I had just worked so hard for something Noah wouldn't be able to use after all.


I contacted SOS (Specialised Orthotic Services) in the UK who is the manufacturer of the product, to let them know my difficulties.  They asked me to send in some pictures of Noah in the chair so they could see the difficulties.  Within 24 hours they informed me that they had a technician who was making an insert to correct not only the problem of Noah going through the bottom of the base because his bum was so little, but also to help him from tilting to one side - something I didn't even mention.  They just noticed it on their own in pictures.  I am not used to this kind of incredible business practices and customer service here in the USA.  Here the philosophy feels like you ordered it, sorry it didn't meet your needs or expectations and game over.  But SOS from day one with all the products Noah has from them have been exceptional.  They are extraordinary how they care, in how they respond, and how they will go above and beyond to help.


I was expecting something you know kind of make-shift - like a DIY project out of pool noodles and inflatable swim devices or something to put in the center.  They said it wouldn't look attractive and I didn't care, I am always after functional.  I was just so appreciative that they were helping me trouble shoot it being a pinch too big for his bum.  I've been so occupied with getting Noah well that I wasn't able to really track it's arrival.  

But SOS was so sweet and would send me updates on where it was as they were tracking it for me, and I was relieved when I got word it cleared entry in New York.  We were at a doctor's appointment with Noah when it arrived, but thankfully Noah's grandmother was here with his little brother and able to sign for it. I hear the carrier who delivered it was curious about the contents of the big box because it was light as a feather.  Inside the box was a black and a really beautiful insert.   And I do mean beautiful. It was the most perfect fix you could ever think of.    It is the very best shower and toilet chair in that exists anywhere.  And it now fits Noah like a glove.  I am in awe of how they could do this just from a picture of seeing Noah in it.  And I wish I could just hop a plane and give them all the biggest hug in real life.

I wish that every child like Noah had one.  It's magnificent and so well made.  I have been beyond impressed with every single product that SOS sells.  The quality of their products, the durability, the safety features and accessories, and how sensory soft and plush everything is.   You can tell that so much thought and craftsmanship went into making these products.






The next thing I have my eye on is the Sleep Pod by SOS.  During this illness with Noah it has been really hard to have him in another room away from us, we really need something that we could have in our master bedroom with us to watch him much closer when he's not feeling well or a sleeping option for him in the living room during the day where he can lay down on something other than the floor.   Special needs adaptive equipment is expensive no matter who makes it or where it comes from.  And the Sleep Pod carries a price tag starting at $1,200.  Which mind you likely doesn't include carriage/shipping fees or if customs were to flag it as they "sometimes" do and attach a duties and tax to it.   The Sleep Pod carries no insurance code and Noah's Waiver has decided to site SSA Section 6505 and not allow any products to be purchased with waiver funding  at the moment.  It always feels like the impossible mission to get the things I know would make a difference for Noah's quality of life.  His only hope would be a fundraiser and I'm not sure how fast we'd be able to reach a goal like that.  It would be a completely out of pocket cost for us - short of me maybe trying to hunt a loving foundation to help me.

I held Noah on the couch sitting upright both him and me last night for the entire night.  We have a basic cheap tiny couch.  Nothing fancy, no comfortable ottoman.  Just a couch with two throw pillows I found at Costco.  He couldn't lay down flat on his tummy in his bed.  He just kept collecting in oral secretions and waking up in a panic.  I haven't held Noah all night long like that since he was a baby.  Brought back a flood of memories of those early days when I fought so hard to keep him here.  Just as precious as he was years ago, simply longer legs and arms, but his sweet scent forever familiar.  Moments like that fuel this fierce fighting drive in me to do whatever it takes to make his life easier, better and comfortable. 

He is precious in every way, the sunshine in my day, the joy in my soul, the love of my life.


Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, April 12, 2016

When I Feel Less Than Brave

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Noah is really sick.  And by really sick I mean he's the sickest he's ever been in his entire seven years of life.  It's not something that it an easy fix this time.  Not a simple ear infection.  Not a head cold that moves to his chest.  A really violent vomit bug hit his little brother 2 days before his 5th birthday.  Likely something he picked up on the playground while Noah was at therapy, or at swim school where lots of parents think it's acceptable to bring in their sick children or siblings for class, or at the hair cut salon that parents take their kids too when they are out of school ill, so he'd look so sweet for his 5th birthday pictures.  My anger for parents who take their children out in public places on purpose when they are sick is heavy.  They have no concept of what that potential danger is for my sweet fragile Noah who is at home, in a bubble of sorts trying to stay well.  Parents casually do it all the time, without a second thought.  And each time it happens I wish I had the courage to tell each parent how crappy of a decision that really is.  But I'd be starting confrontation with strangers daily.  They will never understand why it's not acceptable not to keep their children or themselves for that matter home when they're sick.


Luke's illness came on strong and heavy.  Without warning I turned my back to realize our tan carpet was bright red from a Little Me Tea Drink.  I thought perhaps maybe the drink upset his stomach since he reached for it before breakfast.   I had to take skills exams that morning to stay current on my CNA license to care for Noah.  I had hoped to return to a well child, only to find that his vomiting had increased ten fold and that he was now unable to control it, stomach bile and acid flowed from a tiny body that had a stomach with no contents, and Luke lay lethargic and unwilling to verbally communicate other than using his head to shake yes or no on the bathroom rug.  I sat and prayed for the child who was sick and for the child that I prayed would not be afflicted by this illness.  Deep down I already knew my fears would come to light. 



Luke showed some improvement 48 hours later, so I assumed we had turned the corner.  I felt a sense of relief for the typical child that was strong, healthy and able to fight this germ quickly.   My relief quickly turned into me running fast to the bathroom vomiting uncontrollably for six solid hours.  Severe morning sickness pales in comparison.  Followed by Luke and I shedding any bodily fluids our bodies contained.  I lost seven pounds in 24 hours, Luke lost 9 pounds in 48 hours.  My joints ached.  Each of my toes felt like pins when I walked, my knees felt locked and I just wanted to huddle in a corner and not move.  Chris had to stay home from work to assist all of us. 



It was 11pm on the button, I had finally stopped heaving into the toilet and had just put my head on the pillow when I heard Noah's monitor alert me to the fact he was throwing up violently in bed and struggling to breathe.  I rushed to him, but he was face down in a massive puddle of vomit.  His eyes and eyelashes caked, his head soaked, he was scared, disoriented and frightened.  I heard him gasp multiple times.  I knew what it meant.  I knew what was happening.  He was aspirating in his own vomit.  It kept coming - every 15 minutes until 9am the next day, each time he cried and inhaled more.  Yet, I tried to keep focused thinking perhaps since he was coughing he was able to protect his airway.  



I thought maybe he was improving as the following morning he was able to keep liquids and food down, but it was apparent that he wasn't just going to recover easily this time.  His fever climbed to 102.  His right lung sounded questionable and x-rays were ordered.  No easy feat for doing x-rays for a child like Noah who can't hold their arms above their heads or sit independently or lacks in head, neck and trunk control.  It takes two people including myself to attempt to position him just for a 10 second x-ray. 



Noah came home with an aspiration pneumonia diagnosis, antibiotics to try to fight the infection.  Noah is so weak that I dug out the baby bottles again, to make it easier for him to keep hydrated well without having to work as hard, his every whimper and whine tugging pushing every panic and fear button that I have.  The combination of alternating ibuprofen and acetaminophen broke the fever, but he still is very floppy, tired and irritable.  His breathing sounds cloudy and slightly distressed.  Saliva collecting creating a white tongue likely in an effort to soothe his raw throat.  Laying down his oxygen saturation drops so I have to keep holding him in my arms.  Noah has likely 18 hours or less to show improvement or he's likely facing a hospital stay.  His doctor seemed confident in my ability to get Noah to turn the corner, I'm still frightened if I can do it this time.  Vomit aspiration is really serious.



And then there is this huge rush of feelings; no one understands.  No one could possibly understand what a special needs parent experiences when they have a child that could die as a result of a common illness.  The gravity of the emotions are so intense.  I put on this brave face... but I'm not at all brave.  I feel so scrambled in the inside.  Mechanically I function like a well oiled machine - doing what needs to be done.  Checking on him every 10 minutes in the night, checking oxygen saturation levels, his heart rate, his difficulty of breathing, monitoring secretions, re-positioning, trying to find a way to make him stop crying and whining in agony.  I'm not sleeping.  I don't dare sleep during this.  Keeping up on laundry is simply impossible.  I have one child who cannot voluntarily stop bowel movements or his vomit, and another child who can't throw up in a toilet or a bucket and only has the floor and us holding him for any kind of assistance. I lacked spare sheets and and Noah's sensory issues shoot him to the moon to have plastic backed chux anywhere near his face.  Making him comfortable a challenging effort. 



And then I read Glennon Doyle Melton's blog post from Momastry today, and felt like it was acknowledgment from what I'm feeling and experiencing at this very moment.  That reassurance that someone out there "gets it."  There are times when I feel like I'm on so isolated from the rest of the world and that no one would ever give this side of a very sick special needs child a second thought.  That my heartbreak goes unnoticed, my fears disregarded, my fight for my child at all costs minimized.  I'm pouring every ounce of human effort into Noah.  When he's sick or not sick.  I eat and breathe and sleep the care-giving needs of this child.  I am nothing without my role in his life.
Photo Credit: Glennon Doyle Melton: Momastery
 
The acknowledgment that Glennon Doyle Melton gives to parents like me makes me feel like sometimes it is possible for someone who isn't walking this journey can try to understand and give us credit for our relentless and ferocious love and complete dedication to our children no matter the cost to ourselves.  And reminds me that someone out there salutes the warrior I get up every morning trying to be.  You can read Melton's post here



I am trying to be brave...



Prayers for Noah's speedy recovery from this illness is welcomed. 



Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, April 5, 2016

Benefiting a Bureaucracy: Front Page News

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After a really difficult night trying to troubleshoot Noah's difficulties and sleep problems all I wanted was an endless cup of coffee with almond-vanilla creamer and the hottest shower I could find to tranquilize my raw emotions and my soothe my tired body.  I just was hoping to get through the day, as I anticipated having to quickly draft and file my response to Noah's CCB who filed an Exception to Initial Decision in an attempt to override a Judge's Order to provide adapted sensory clothing to Noah. I couldn't shut off all the wandering thoughts in my mind.  Trying to troubleshoot and figure out how to fix things that are so much bigger than I am.  And of course when you're focused on other thoughts you quickly forget you already washed your hair once, so you wind up coming out of a shower extra squeaky clean. 

Chris rushed into the bedroom waiving a paper at the shower door.  "Did you know you are front page news?" he said.  I thought he was kidding.  I wiped the water from my face that camoflaughed frustrated tears and took my hands to clear the condensation on the glass door to see that he wasn't at all kidding.  I was aware that a story was being published in the paper but I had no idea we were making front page news.  Or even had an additional 2 page full spread on pages 10 and 11...



My soul felt this sense of relief.  Not because the storm or fight was over.  Not because this publication somehow erased all the difficulties, problems and denials coming Noah's way or solved the fact that government agencies are making money off of Noah and children like him and that there is no CCB transparency.  But because finally people would be made aware of what is happening not only to our family but so many other families as well.  This article is a conversation starter... the first piece of giving validation to our voices, our pleas for help, and our continued fight for justice for our children with disabilities.  I am so thankful to the reporter who wrote this article and who gave us an outlet for our voices to be heard.

I almost withdrew from speaking to the press on several occasions.  I already knew Noah had been targeted as a result of me advocating for him and for other families.  And I knew that speaking out would make it a million times worse.   Our advocacy parent team needed a family to come forward and deep down I knew staying silent wasn't an option. There are so many parents in the background that are fearful of speaking up, and someone needed to find bravery and courage, so I reconsidered and made the decision to speak to the media and The Denver Post journalist.  I always encourage other parents to come forward.  So many families share their difficulties with me, seeking guidance, support and help knowing that I'd go to bat for all their children because I care more than most people would.   There are power in numbers and I think with time - especially now that the story has gone so public that families will start to feel more comfortable and confident about coming out from the shadows and speaking and telling their stories too.  I've already seen it happening in the last forty-eight hours. 

And those who don't have children with disabilities are asking real and valid questions:  Where are our tax payer dollars going?  And why aren't these programs helping those they're designed to assist?  And who is looking after the safety and well being of our disabled community?  The public has a right to know.  And parents advocating for their children have a right to know.

I of course was already infuriated over the filing of an Exception to Initial Decision.  The State doesn't have to file these things, it's discretionary on their part and simply a method they have to overturn a Judge's ruling.  It's a disgrace that this is even legally allowed.  I also don't buy the State's rationale that denials are necessary because their own rules are vague and that they need a Judge to clarify "cloudy" guidelines.  If that were in any way true then there would be no reason that an Exception to Initial Decision filing should even ever exist.  I also find it unacceptable that the State thinks that appeals are justified just to make a family clarify their own rules.  Most families won't even pursue a denial into the appeals process.  It is a confusing process for most of them, they lack the time to pursue it, and they feel defeated knowing even if they do, the State will just overturn whatever a Judge rules anyway.  In their minds it's a waste of time.  Which is exactly how the State likes it.  They much prefer easy wins and denials without a parental fight.  Means more money in their pockets... and less they have to pay out to help those with disabilities.

And Community Centered Boards and the State talk a good game - but none of them means it.  I'd love to see them put the money where their mouth is.  Of course I flooded multiple email boxes over the weekend with Motions, Replies, Orders, and Responses to the current denial issue for Noah.  The State doesn't even have the courtesy to respond... not with even something simple like we are in receipt of your email, we'll look into it... nothing.  Not a peep.  A tad rude, but expected.  I'm sure I rocked their world with a headline article and Monday morning they were working on damage control.

SB-38 (The proposed transparency bill) made it out of the Senate and is now in the House.  This is fantastic news.  We are one step closer to forcing CCB's to undergo a mandatory financial audit of how they are spending $325 Million dollars annually.  I suspect they are certainly hiding something if they are paying lobbyists and a DC attorney.  And one has to wonder how many thousands of dollars they are shelling out to fight transparency.  Remember those who have nothing to hide... hide nothing at all.

The State didn't give me a whole lot of time to file a Response to their Exception to Initial Decision which forced me to write it in a day and mail it certified mail overnight to make sure I beat their deadline.  I find it so unbelievable that I have to fight this hard for benefits that are outlined within Noah's Waiver as a covered benefit.  Deep down feels like a futile fight.  But at this point it's about documenting the true nature of what is really going on.  I'm not about to roll over and play dead and make this easy for any of them.

The Denver Post article can be found here:
http://www.denverpost.com/investigations/ci_29713883/overhead-costs-too-high-families-disabled-coloradans-say

Love, 



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, March 22, 2016

As Good As It Gets

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I think I've been in a doldrum lately.  As likely evidenced by my lack of motivation to blog or talk about anything.  I know there are several contributing factors to this.  And it seems like I can't shake this feeling of having an unbalance of more problems than to the solutions and options.  There are days I wake up and don't even know where to start.  
So, City Council had their study session on the cell tower that is about to be built in less than 500 feet from our home.  It's predictability and tone was anticipated months ago.  Although the public cannot make comments at these study sessions, they hired an independent expert, and had speakers from Verizon give presentations. When I read their hired experts CV, I knew immediately that he wasn't a neutral party.  Having had a background working for a cell carrier and antenna engineer I knew what he was going to say before I even went.  My legal experience has served me well and I can easily sniff out which side someone is on.  He was simply hired because they wanted do find someone who would support their decision to build this tower.   He got up there and made these analogies comparing broad band widths to dogs that stay in fenced yards, and rarely if ever... do these dogs bark and cause problems.  Essentially he was intending to say that EMI (Electromagnetic Interference) doesn't exist, because broad bands don't interfere with each other.  

Verizon's testimony even more disturbing as they explain to City Council their desires are to have cell towers and antenna as close as every 1/4 mile.  That's crazy.  And that is just one cell phone carrier's goals.  They hone in on projecting the technology for the future... such as smart cars and headgear video games citing their need to act now for something that hasn't even happened yet.  I observed body language of others, the rolling of eyes, their posture, their crossed arms, shaking of their heads at any suggestion that they should think twice about denying any application related to cell towers for any reason.  It was a room divided but the majority is ruling these decisions.  There was even suggestions that the height minimum be raised.  So instead of a 50 feet tower maximum (even though a variance was given to the tower I'm going to receive which will be taller than 50 feet), they want to make the limits higher.   (Higher the tower, higher the intensity and impact to neighboring residents.) Really the goal of this study session in essence felt like how can we make it as easy as possible to overpopulate residential areas with cell towers with complete disregard for the human safety and well being of others or even allow have homeowner objections to the loss of property values and aesthetics. The County Attorney made a suggestion that since there was a health issue or concern (which was Noah) that they couldn't take into consideration all my other neighbors who were upset about the decline in property values as a result of a tower and aesthetics.   And then I was reading Noah's instruction manual on his power wheelchair that warns against the effects of EMI...

"The interference (from radio wave sources) can cause the powered wheelchair to release its parking brakes, move by iteself, or move unintended directions.  It can also permanently damage the powered wheelchair's control system."  This is such an extensive warning they actually dedicate two full pages in full detail of EMI warnings.
 

Yet, City Council remains in denial.  Short of the tower being built and me saying told you so... and/or pursing legal action against everyone... I'm not sure how to get them to admit they have a significant problem with a medically fragile child in the neighborhood in which they want to build cell tower.  They don't have a fenced in dog... they have a dog that is about to maul the neighborhood and specifically my little Noah.  But they care not one bit.

And now we transition into other problems on my horizon:  I submitted my 3rd revised request for a flooring modification for Noah after it went from a "firm denial", to a "soft approval" pending State's final review.   I'm obviously frustrated about it, and I know in many ways what I'm experiencing is purposeful in nature.  I also filed two more appeals because I feel like procedures are being violated that are resulting in denials for items Noah didn't even have a chance to formally ask for, unique in that even a Judge can't adequately reverse a denial or make a determination if the denial was appropriate in any fashion because there is no supporting documentation for review.  I still think Section (6505) of the Social Security Act's intentions was designed to prohibit prescriptions or medical treatment outside of the US and described therein as (benefits).  I do not think that rule's intentions were to bar adaptive equipment purchases outside of the USA.  But I don't much get the feeling that the State really wants to dig into that matter, especially because if they use it as they are - it prevents hundreds of families from accessing things they need and thereby saving the State thousands of dollars they don't have to pay out to assist those in the special needs community.

There are miscellaneous things too that I need to deal with.  I given most of Noah's equipment away, which leave him with nothing to replace it, as many were out of pocket purchases and he has outgrown everything - not skill wise, but size wise.  He needs it all replaced which is an impossibility financially, but there are lots of things that I need to obtain for Noah and can't financially.  There is no MNRI camp for 8K-9K, no Dolphin Therapy, no ABM Intensives... can't find a way to fund getting to California for two weeks to obtain a service dog.. the list feels endless and if I rattled it all off it would take up three paragraphs just in itself.

I've been asking his speech therapist since September to do an evaluation for a smaller device so we can mount it to Noah's wheelchairs and he'd have access to it more frequently.  And I keep getting excuses, a teaching schedule stands in the way, or Noah has to trial three other devices even though he already knows what model is successful for him... or that they have to find another rep to order it from because they don't like the vendor... (which they can't do).  I'm so tired of excuses.  I don't get to hide behind excuses.  I can't say you know what I don't feel like dealing with 101 problems and issues in my day.  I have to suck it up and get it done because Noah depends on me not to drop the ball.  I don't know how to light people's fires sometimes.  They drag their heals until I feel like I could scream.  We're not talking days or weeks - we're talking now 8 months later...

Noah's DME accidentally broke his Mygo Leckey Chair when we were trying to fit knee guards on it. It was an accident, but that's a minimum of two more weeks we have to wait to have something fixed.  In the meantime he knows it is broken and swing his leg over it, so there isn't much I can do with it, and it's terrible for his hip positioning problems.  Yet, I'm quietly biting the bullet, because his DME has been making a valid and successful attempt at better and prompt customer service for Noah and I happen to really like his new assigned representative and she's giving a 100 percent effort right now.

Noah's entered in a bike contest to win an adaptive bike... for the third year in a row.  Yes I know what you're thinking.  A contest?  I enter lots of them for Noah as that is the only chance he has at many pieces of adaptive equipment.  We know the chances are slim - yet like a moth to a flame we can't help but convince ourselves our children have a chance at being a winner.  And in the back of your mind you always wonder is this as good as it gets?  Am I forever destined to have to think outside of the box to get anything Noah needs?  If you happen to want to swing over and give Noah a vote this is the link to do so. https://www.friendshipcircle.org/bikes/2016/02/noah-w-2/
He's 1 of 600 children entered in the contest.  The hopes were they'd get enough donations to fund all 600 bikes - but my gut instinct thinks that was likely a lofty goal.  I am amazed though at the number of votes Noah has received.  Last year he only scored around a 100... so I'm very appreciative of the support people are giving him. 

Noah's T-Max Shower/Toilet chair that was funded by the county's emergency funds is also being held up by customs.  I'm not surprised, there isn't anything in our lives that actually is easy.   I know they can't hold it up forever as there is a medical provision that they have to allow it through customs because I've gone down this road before with some of Noah's other equipment that has had to be ordered from Canada and the UK.  It's just getting them to realize what it is, and then they will likely assess me a fee an additional customs delivery fee.  But this means I may not see it this week, while I communicate back and forth with them.  I have to essentially convince them not to return it to the UK by the 29th of this month.  One more extra added event in my day. 

And we're going from a great 72 degree day to tomorrow's predicted blizzard snow conditions.  I'd be lying if I said I was looking forward to trying to keep up with shoveling blowing snow all the while checking on my disabled son that has to stay indoors laying on the floor while I shovel... and if you think I have neighbors who will help - think again.   Kindness costs money.  Let's just be real - and how does one budget to hire a snow removal company when the majority of them charge you based on the inches of snowfall they have to remove?  I cannot predict mother nature's furry and she could screw me with one hell of a bill if I gamble on business contracts based on snowfall totals. 

That's it in a nutshell...

Love, 



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, March 3, 2016

Battle Fields, Blessings & Backaches

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Monday I received an email from Noah's CCB notifying me that Noah now has a new caseworker and that implied that I had a requested caseworker reassignment, with the words "I’m sorry that working with Victoria did not work out for you and Noah."  They would have been better off to say something like they were rotating caseworkers, or just doing a basic reassignment.  To insinuate that there was a problem that I wasn't aware or that I somehow was the reason for the change was a bit unprofessional.  So now Noah has a new caseworker and bless her heart they probably have painted me to be a complete nightmare and she's losing sleep over managing Noah's case.  I have to laugh because I'm not sure really what else to do.  So, Noah has a new caseworker and who knows really why.  He's on his third one now.  And I don't have the over excited warm and fuzzy feelings because it feels like they're are all on the same "deny Noah" team.

Speaking of denials... I guess the State decided they wouldn't stop with the PPod accessories.  I had verbally asked if they'd consider funding a dietitian who would prepare specialized food for Noah. Again, I never had the chance to put in a formal OT request for it or obtain a doctor's letter of medical neessity for it.  And received a denial under 10CCR 2505-10 8.503 That is a really broad 55 page set of published guidelines and rules under the HCBS (CES) Waiver.  Finding what they are referencing will be a needle in a haystack under those guidelines.  And yet again, because I didn't formally request this in writing and they issued a denial I don't have much of a leg to stand on in an appeal and they know it.  But that's fine if they want to change the rules and issue denials without having any written request before them, then I'm no longer going to verbally throw anything out there.   I will make sure my communication is limited and any request will be only in writing I will never verbally ask if something "can" be asked for on Noah's behalf.  As they say there is more than one way to skin a cat and I'm not into playing these kinds of games.  Can you imagine what a big waste of time would be if each caseworker was forced to issue a denial letter each time a parent asked if their child's waiver "might" consider covering an item or service?  Or wait.. perhaps they're doing this to just me?

Family Voices assisted in the coordination of a meeting between us and the Department’s Medicaid Director who oversees the Health Programs Office which administers Medicaid and Child Health Plan Plus (CHP+) health program benefits, delivery systems and provider relations and the Director of the Office of Community Living.  If you are like what does that mean?  It's really the top of the food chain so to speak within the State's Medicaid structure - the Executive Team.  Obviously, I had some reservations because my last meeting with the State resulted in Noah receiving even more denials, and me filing even more appeals.  And you walk into these things knowing that the very real possibility exists that you're either about to shoot your self in the only remaining foot you had left, or you'll be able to effectively demonstrate there is a problem and difficulties that require someone's interests and attention.  And you never really know when you become an advocate for your child or the special needs community how the information will be absorbed and digested and if it will spark anyone to implement change. 

 
When you take it to this level there is no longer any way to keep your anonymity.   But given that I've been speaking with the press and news reporters, and publicly blog about all our difficulties keeping your name on the down low isn't really realistic.  I am remaining optimistic until I have reason not to be.  I am hopeful that I was able to lay a foundation for wide trail of problems that I hope they didn't find any of this the "norm" for parents who have children under the CES Waiver.  Although some things left me still concerned.  The notation that the appeals process is in some way beneficial or necessary to establish and clarify cloudy rules.  I'd like to believe that the State wouldn't purposely force any family into appeals simply for clarifying their own rules.  And even if that were the case then there would be no need for them to file Exceptions to Initial Decisions to override a Judge's ruling.   And sure does the State need "restructuring?"  Absolutely.  But that isn't a simple fix.  That takes legislation - if it even has a chance of passing, I think the State prefers to be intentionally vague on interpretations of written guidelines so that they have flexibility in how they chose to conduct business.

I'd like to believe that things will take a turn for the better for Noah, but I'm just not sure yet.  I think only time will tell. 


We did receive Noah's new Vitamix which I wasn't sure we'd see.  And I'm so relieved as Noah's first Vitamix from 2010 had finally had enough of blending three times daily.  It was emitting a bad smell and not blending smoothly anymore and stalling periodically entirely.  For the first time in probably over six months Noah's food was the perfect consistency.  


And I have been passing on Noah's equipment and devices that have grown too small and seen a picture today of a little boy in California, Thomas, using Noah's old things.  And it gave me such a feeling of of peace and happiness.  There are days when I sit here trying to find the purpose for it all - the meaning behind the struggle, my fierce drive to fight on for justice and fairness for the medically underserved, and always at the heart of it Noah who is the center of my universe.   I dream of a world that makes it so much easier for those with disabilities.   I want society to care about them more than they do.  We live in world with such potential and a host of possibilities.   I just can't accept this is as good as it gets for those with disabilities or for their families who love and fight for them every day of their lives. We can do better than this. 


I've been lifting and carrying Noah around a lot more lately.  He just wants to be a part of everything.  Wants me to take him outside so he can be with his little brother, wants me to carry him to watch TV in the master bedroom, to lift him up to look into the refrigerator.  To open the door to after it rings so he an see that his incontinence supplies have arrived.  I am his legs, and considering our house is primarily carpet Noah doesn't have adapted equipment that really works well or propels on carpet.  He is stranded without me.  He knows it, and I know it.  My back is sore, and my right shoulder feels like it's on fire.   It's been like that for three days.  I keep thinking it will get better.  But so far no luck.  I rested for an hour today while Noah had pool therapy on a padded bench and it felt so good, just to sit down, and take a mini time out.  The heat of the pool making me sleepy and content.  And I knew Noah was safe with his therapist in his special needs life jacket so I didn't feel like I had to be on guard worried if his face would dunk in the water or if he'd be in any danger.  Of course lifting him back into his wheelchair after he had rinsed off in the shower only reminded me that my relief was to be short lived. 


Tomorrow is another day.  And I can and will do this.


Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.