Monday, May 16, 2016

Blue Light Protection Glasses for the Special Needs Child

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Awhile ago I had the chance to trial cell phone radiation deflectors by a company called I Am Cell Aware.  I was really impressed with the results of that product, but as equally impressed with one of their other products: Blue Light Protection Glasses.  If you are like me this is probably the first time you have ever heard of Blue Light Protection Glasses.  Although, after researching the benefits they really make a lot of sense for the world of technology that we live in.  Technology however, does not come without its consequences.  Computers, Tablets, and Smartphones harm our eyes, sleep and overall health, which many of us never give a second thought to.  All devices put out blue light and the absorption of blue light increases your risk of going blind from developing age-related macular degeneration (AMD).  This is incurable and irreversible.

But that's not the only consequence to blue light absorption.  Blue light exposure also stops the body's natural protection of melatonin.  This is huge for children who have special needs many of whom already struggle with melatonin levels. In fact so much so, that melatonin is now sold as an over the counter supplement.   Studies show that lack of melatonin is related to the disruption of the circadian rhythm synchronization resulting in sleep deprivation.  Studies also demonstrate that melatonin contains anti-oxidant and anti-inflammatory effects that help to prevent heart disease.  Furthermore melatonin may assist wit the lowering of blood pressure levels and improving cholesterol profiles.

Studies have also demonstrated the cancer-fighting ability of melatonin against a wide array of cancers.

Blue light indeed has a dark side.  Self-luminous electronic devices emit optical radiation at short wavelengths, close to the peak sensitivity of melatonin suppression. Melatonin suppression resulting from exposure to blue light can cause a host of health complications, especially further complicating any diagnosis that a child with special needs has.  Neuroscientists even go as far as recommending no blue light exposure for at least two hours before sleeping.  Are people inclined to give up their computers, tablets and electronic devices all in the name of preserving their health?  Sadly the answer is no.  But there are ways that we can take measures to protect ourselves while using electronic devices. 

Many non-verbal children like, my son Noah, must turn to forms of augmentative and alternative communication, otherwise known as AAC.  There sole and often only way of communication is by using a computer or tablet device.  This puts them at even greater risk for melatonin depletion and health harm.  Something that isn't even considered or discussed widely in the special needs community or with treating therapists or physicians.  So how well do blue light glasses work with AAC devices you might ask?  The answer is surprisingly well!   I played around with I Am Cell Aware's Chicago Unisex Clear Blue Light Protection Glasses with Noah's Tobii Eye Gaze Device.  It tracked my eyes using the blue light glasses the entire time.  This is huge!  This means if you have a child that relies on AAC device for long periods of time through the day that blue light glasses will assist in protecting their eyes and preserving their melatonin levels.

Blue light is extremely dangerous for children.  Children's pupils are larger thereby letting in more UV and blue-violet light than adults and their crystalline lenses are more transparent meaning it is less efficient in filtering out UV.

We are excited to have Noah try blue light glasses and as soon as we can find a special needs eyeglass frame that works well for him, we will have the glue light lenses put in so that he can use his AAC device safely for his eyes and overall health.  I Am Cell Aware has a variety of different eye glass options... eventually I hope to obtain the San Francisco Women's pair that have purple frames as a spare, and they have six styles for children that come in styles that will appeal to both genders.  The adult versions retail for $124.95 and the child versions retail for $109.95.   They are well worth the investment.  And if you purchase soon and use the code "Noah,20 percent of the sale goes to assist children with special needs, like Noah. 

There are lots of blue light glasses on the market, but not all blue light glasses are created equal.  I Am Cell Aware produces a product that is scratch resistant, with sturdy frames and lenses.  I Am Cell Aware also uses Crizal® Prevencia™ No-Glare lenses with Light Scan™ represent the first application of new patent-pending technology that enables selective attenuation of harmful light – both UV and blue-violet – while allowing beneficial light to pass through and maintaining exceptional transparency.   I am able to see clearly through these glasses as if I weren't wearing any at all.  I also do not have difficulties with my eyesight and my vision is not distorted while wearing them. I Am Cell Aware offers a 1 year warranty on both frames and lenses and they can accommodate far-sighted and need magnification numbers.

After using them for approximately six weeks I can definitely tell a difference in my eye strain and in my ability to fall asleep faster.  I wish I had known about the relationship to blue light with devices sooner.  Since Noah is heavily reliant upon AAC communication, being aware of blue light exposure is really important.    I Am Cell Aware is a company with exceptional customer service and could accommodate your choice of special needs eye glass frames and fit them with their blue light lenses.  I am thankful that this is an option for children with special needs who are reliant on technology for their daily living needs.


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

Sunday, May 8, 2016

Mother's Day 2016: We're Getting Older

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I watched a video few days ago from Nichole Nordeman called "Slow Down" and you know it was one of those moments where you're just flooded with a ton of emotions.  I ache for the child that never will run away from me, and also ache for the growing child that is finding his independence faster than I ever wanted.  I'm torn.  I'm in between two spaces.  Forever frozen in time with Noah, and propelling way to fast with a fleeting childhood with Luke.  I became a mom over seven years ago.  And, as my journey would have it, I can't just be a mom.  I'm so many other things just to help my severely disabled child and also do my best to balance my other son's needs.  I get up each day and live in two different worlds that collide like a crashing thunder in my heart.  The majesty of it all often leaves me without words.  

Yet, I fully embrace and celebrate the season that I am in.  The here and the now.  A beautiful blue eyed precious by that melts me with his happy squeals and communicable laughter, and his five year old sidekick who likes to pretend I'm a seed and he's the bird and pretends to gobble me up on my arm.  I need not a fancy token of my children's love or a memento to stash a way in a box.  I know that I am valued, loved and needed by the both of them.  As moms we're all in the middle of something;  pain, joy, difficulties, shifting through feelings of self-worth, pride, disappointment - and fear... gosh fear and worry that's a big one if you're a mom.  We're in the biggest balancing act of our lives.  Yet through it all here are these little tender faces staring up at us with such admiration as if we are the greatest superhero to ever exist in their lives.

On Mother's Day it doesn't matter if  life blessed you with healthy children, or if your children were gifted with life but are living life with a multitude of physical or mental challenges, or if you adopted, or if you created life that was taken much too soon from your loving motherly arms.  We're all to be honored, cherished and adored on this day to remember all of us.  We flourish knowing that we've done the best we can do at the end of the day, no matter how wrong or right that we put our best foot forward to shape, love and grow tiny people into the best people that we can to leave the world behind with.  My greatest legacy will be who I taught them to be, (whether they remember it or not or chose to act upon it) I know I will make them good people capable of choosing extraordinary paths for themselves.

In a world where materialism is blooming more than any Mother's Day bouquet, I can't offer my children the latest in technologies or toys, because we're too busy trying to keep our heads above water with Noah's basic out of pocket medical, therapy and equipment needs.   I can offer them cotton ball bunnies, endless kisses, pet rocks, lady bug catching, card board houses and endless use of imagination.  And I am hoping and praying they'll be better people because of it all.  Despite the hardships, the habitual storms (evidenced in Mother Nature's yearly reminders in the form of Colorado snow and hail storms)... that you can come out of the end of it as a beautiful rainbow.

Please remember to disable Noah's music on his blog page to watch the video :)

Happy Mother's Day

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

Wednesday, May 4, 2016

Pick One

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We've been working on trying to get Noah a speech evaluation completed for many months now - nearly a year.  After pushing his speech therapist for 8 months, I gave up and decided it wasn't working out, and that I had been more than patient, but failed to be able to light her fire to complete and submit the evaluation for a new speech device to Medicaid on Noah's behalf.  I stayed with the situation longer than I should have.  I should have told the agency we were experiencing difficulties, but I was worried if I did that would leave Noah without a speech therapist.  Finding an experienced AAC speech therapist isn't easy.  It isn't easy at all - especially one that does in-home therapy.  

Thankfully, the agency Noah works with was very understanding and assigned someone to Noah in the interim just to get the new AAC device evaluation completed. Noah of course fell ill during this time, and we had to reschedule twice to my dismay after waiting all those months.  Noah wasn't his best as he was just starting to recover from being sick the previous week, and the evaluator was so kind to come back again this week to give Noah the best chance at success so we really could decide what device we should approach Medicaid with funding with.  Noah has a Tobii eye gaze device right now, and for the most part I do really like the device.  However, it's huge and there is no way that we can mount it to Noah's power wheelchair - he can't see anything past it when he drives, and it also blocks his view from seeing anything if we were to mount it to a manual wheelchair that he has.  Our only option was to pursue a smaller device.  Noah also needs something he has access to all day long - right now because his current Tobii device is so big he can only use it at the kitchen table on a stand - maybe one or twice if we're lucky daily.  Which isn't enough time to get him to expand on sentence building from one word choices.  He needs something he sees and works with frequently. 

We trialed three devices, the Accent, the WinSlate and the smaller Tobii.  Noah did not do well on the Accent, it did not calibrate to his eyes well and he didn't find the same success he did with the WinSlate and Tobii.  There are pros and cons to both devices.  Obviously Noah has the Tobii now and I'm familiar to a degree with it.  It does have good calibration for his eyes and is windows based.  The WinSlate is lightweight compared to the Tobii.  The smaller Tobii weights about 8 pounds, the Winslate weighs 3 pounds. A significant difference.  Both are about IPad size, so Noah could see to drive and navigate his power wheelchair and also see around it in a manual wheelchair. The WinSlate comes with a talker lanyard, so Noah can hang a small voice box around his neck so when he talks it would sound like it was coming directly from him and not directly from a computer.  Both tracked Noah's eyes well.  I really liked the graphics on the WinSlate.  They are crisp and clear as if you were watching a 3D Disney video on television.  The WinSlate seemed user friendly and easy to navigate, I hear that it also has excellent customer service, where Tobii customer service in the USA has been declining rapidly.  I do have access however to the Tobii creators in the UK, and have clung to them as my source for help all these years.  The WinSlate ironically offered Noah an easier time of getting to the right hand corner of the screen, something that has been his weakness - an area where he much doesn't look at often and was wiling to do on the WinSlate.  Over all I'd say the WinSlate and smaller Tobii were almost a close tie.  We ultimately gave Noah the choice of what he wanted.  We asked him to pick and he picked the WinSlate multiple times.   The speech evaluator also held out his wrists giving two options for Noah to pick and he'd pick the Winslate doing that too visually. 

It was quite funny as Luke witnessed Noah being given choices by visually picking a closed fist, so he walked over to Noah with two closed fists and told him one was Arby's and one was Chick-Fil-A and to pick which one he wanted for lunch!  Clever little Luke - using his brother to get take out for lunch.  Noah picked Arby's.  Surprisingly too because he adores Chick-Fil-A.  But it was quite obvious that Noah and Luke have found yet another way of communicating.   Choice by fists.  Luke is now doing that to get Noah to pick videos and toys.  And I'm just letting them do their thing because they are indeed communicating rather well together using the fist method at the moment.  And Noah has been getting much stronger daily since his illness.  His spastic athetoid movements have even returned.  And I never thought I'd say how awesome it is to see athetoid movements in Noah!  But, I'm so glad to see him returning to the child I've always known him to be after being so sick.

The catch to all this is Medicaid only allows a new speech device every 5 years.  Noah has had his almost 3 years.  However, Medicaid does make provisions on a case by case basis depending on need.  And this is a need - he can't see around such a big device and it's a safety risk certainly with his power wheelchair.  It would be the equivalent of putting up a sunshade in the windshield of a car and saying good luck go drive the car now when you can't see around it.   I don't know that I really feel confident about what Medicaid will do.  Honestly, I'm feeling really crappy at the moment about Noah's Medicaid benefits and CES waiver benefits.  Three weeks ago the Director from the State Department of Health Care, Policy and Financing personally called me shortly after our story made front page news to inform me that I should be expecting a letter with "mixed news."  News from the grapevine is that it's a three page letter, yet no one is sharing or disclosing the nature of the letter to me.  Supposedly, I was to expect this letter in the mail Monday or yesterday, and I'm still waiting... I was also told the same thing three weeks ago.  I anticipate it's filled with news that will trigger an anger response from me - I hope I'm wrong.  God how I hope I'm wrong.  But the way everyone is behaving it's like I'm waiting for a doomsday letter. 

So what could the letter contain?  Anyone's best guess.  I'm sure it will address outstanding requests for Noah.  There is a flooring modification that has been pending since the beginning of the year with Noah's Waiver.  Our home is primarily carpet which strands Noah.  He can't propel any of his equipment on it, and when Noah does have an accident on the carpet whether that be when he's sick, or well and we need to spot treat the carpet, he can't lay on it for twenty-four hours minimum because wet carpet can put him at risk for contracting Kawasaki disease.   His waiver denied it the very day I was giving Fox news an interview after they were contacted for comment, but then changed their mind within 1/2 hour and approved it pending clarification of the request.  Yet, it still had to be sent to the State for their final seal of approval.  While Noah's home has decent square footage, his waiver only permits for certain sections of the house to be revised.  Meaning we can't change the flooring in every room of the house - we have to ask for the spaces Noah uses most.   And this isn't something where the state gives you really nice hardwood floors.  We are asking for cheap basic tile.  I think sometimes public perception is that families like ours get really nice benefits or things for our children, when in actuality we are just after functional.  The state uses the word luxury rather loosely and even happens to think that porcelain tile over ceramic tile is a luxury even though the cost comparison is equal.   They will nit pick a request to death and make you jump through a thousand hoops, and then you sit and wait for usually a big giant no for all that they required of you.  I really hope this letter contains an approval for the flooring.  Noah really needs this for some personal freedom safety and health concerns in his home. 

The letter may or may not also address the pending fight over adaptive clothing, will those two things take up three pages?  I don't know.  I guess they could.  I'm not sure what to expect from this letter.  But I know that things are still getting denied - Noah needed a part for his wheelchair that was only $104 and that was denied.  So what will the state do with a request for a new communication device that probably retails somewhere between $16,000-$18,000 depending also on accessories and software?  I don't know.  I don't know what they'll do.  I suppose I'm preparing myself for the perpetual fight - because I always feel like they are backing me in a corner when it comes to helping Noah.  Maybe the letter will address SSA Section 6505, which I still think the State is misinterpreting to block equipment that isn't manufactured in the USA from being purchased, it will be something that I'm pursuing in an appeal before an Administrative Law Judge in a few weeks, and something that I'm working discussing with vendors who are now being blocked from allowing their products to be funded and purchased.

I'd like to believe the State wants to build a bridge to work with families and not torch and bomb the bridge continuously.  Part of me wants to be optimistic - but part of me being realistic with the probability of this letter being any type of good news.  I am quite used to bad news bombs dropping on me frequently.  There is no one at the State that I feel has made genuine efforts to build trust with me.  It's hard for me not to perceive them as the enemy, because it always feels like I have to wage war and fight them over Noah's benefits.  And I'm certainly not alone in my feelings.  Lots of families feel the same way.  Some are very open about it, some a bit quieter but nonetheless share the same intensity of feelings.  I hope I'm pleasantly surprised.  I'd love nothing more than to blog about some superior news.  Truly I would.  I'd love to say guess what everyone the State is making efforts to redeem themselves.  Only time shall tell. 

The things that Noah needs are of course mounting by the day.  I'm not sure what to do, I'm exhausted from trying to hunt foundations;

Noah needs a New Tomato Floor Sitter (he's outgrown his size 2) that is around $1,000
A Flexi 3 IPad case to mount to his wheelchair as an activity retailing for around $120
I have to pay for his wheelchair piece that was denied $104
Noah didn't win a bike after his third year entered into the Great Bike Giveaway Contest  - that's about $7,500 (good luck I know right!) This child will never ride a bike at that price.
A sleep pod which will cost about $1,800 including shipping
We have to pursue another travel car seat for Noah - the purchase price on that is about $4,000
Noah needs a new molded wheelchair seat for his power wheelchair - he's need it for a long time now, but his DME had told us to hold off because all of them are currently being denied by Medicaid
I need a 8 inch threshold ramp to get Noah out into his own backyard - that will vary anywhere from $400-$600 depending on style
He needs a new swing set he outgrew his that will be a few thousand for a folding swing frame, plus accessories
He needs a power wheelchair canopy to keep him out of the sun
The list is endless - I could keep going but it's so discouraging for me.

I of course see things other children are getting and benefiting from, wishing that Noah was afforded the same opportunities, yet knowing very well if I put in an identical request, the same rules don't apply for Noah and he'd be denied.  Which of course is hard, I certainly am celebrating other children and families getting what they need and what their children need, but at the same time of course saddened that it doesn't work that way for Noah.

So everyone pick a fist, the first fist says good news is coming... the second fist says bad news is coming...


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

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!


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.


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.


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. 


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