The Broadmoor: The Golden Bee - Home of the Sticky Bees

The Broadmoor took note of Noah's favorite meals.  Pot pies and pastas being among some of his favorites.  They found two perfect dinner dinning spots for Noah while we were there.  The first night being The Golden Bee.  While in walking distance from the Cottages, we chose to take an accessible shuttle.  The Broadmoor has their very own shuttle service which is complimentary with your stay.  They have a shuttle that has a Braun Ability lift that worked nicely with getting Noah around the hotel grounds.  And they were super fast.  You call for a shuttle and it's waiting on you within less than five minutes.  Perfect for a child that isn't a fan of patiently waiting on rides to get to his destinations...

The shuttle drivers were so knowledgeable about the hotel property, and could answer all the questions I had about the hotel's history.  I was most interested in the new property that the Broadmoor acquired directly across the street from the Cottages.  A mansion that was built in 1930 went into foreclosure and was purchased by the Broadmoor in December of 2015 for 1.9 million dollars.  A mansion that guests would have to enjoy all to themselves.  It is reported that the Broadmoor invested approximately 7 million dollars in restoration of the home, and that it will feature 5 master suites, a kitchen, a formal dining room, a full library and a parlors that could accommodate meetings and large cocktail parties.  I was in awe of it.  I couldn't stop looking at that property every time I passed it.  In fact I haven't been able to get it off my mind.  There was something about that mansion that was full of glory, wonder and amazement of it's beauty, and enormous size.  It sits on 1.7 acres of property and the landscape was just receiving finishing touches awaiting it's first booked guests later this fall.

Picture @ The Denver Post

I found myself dreaming.  Which I hate to do.  When you have a child with special needs you hate to dream because you know that nothing is within reach any longer.  I imagined what it might look like, the shuttle guides describing how incredible it looks in the inside when they were allowed a tour.  It will rent for $8,500 a night.   That mansion certainly will be the ultimate Broadmoor experience when it opens.   I hope that I'll get to see pictures of it in a magazine or by way of a video when it opens.  It is such a beautiful piece of property and I'm glad that the Broadmoor acquired it, as the property will be well cared for and will no longer sit vacant.

Even though our ride to the Golden Bee was short I learned so much in those few minutes about The Broadmoor.  I didn't have a chance to research the cuisine that was served at The Golden Bee, but was very excited when I realized it was a English/Irish Pub!  I adore authentic Irish food... and finally a restaurant that knows what true mushy peas are all about! 

The best part really is that your server throws sticky fabric bees at you which land all over your clothes.  Children adore this part of the dinning experience there.  What is better than a flying sticky bee coming your way when you are five and seven years old?  Everyone knows when you've been to The Golden Bee because you are decorated in bees when you leave.  Luke in fact transferred his bees to every outfit until we left.  Noah's bees collected and lined up on the sunhood of his Convaid Trekker wheelchair.

It was so hard to decide what to order because I wanted to order the entire menu.  I did try the most wonderful honey lemonade and hope to find a way to closely replicate it at home.  A hint of tartness from freshly squeezed lemons combined with the delicate blend of honey that married in such a perfect way.  I highly recommend it as a must try drink at The Golden Bee.  The atmosphere felt cozy, warm and welcoming.  The chef making a personal appearance to make sure that he had Noah's order and asked how he could blend it so it would be a perfect consistency for him.  At seven years old this is the first time a restaurant has ever been willing to blend Noah a meal.  We typically pack baby food for Noah when we dine out.  Noah generally isn't very patient waiting on food when we arrive at restaurants demanding to eat before the rest of the family even has a chance to order making his desert typically his entree.  However, Noah understood exactly what the chef was saying and doing and waited patiently for his specially made meal and was content eating spoonfuls of cheddar spread which was a restaurant table top appetizer.

That chef likely has no idea that magnitude of what he did for Noah and how it touched our hearts that he cared so deeply about making Noah's meal special.  I will never forget the care that went into preparing Noah's meal.  He had a pureed chicken pot pie and they pureed a cheesecake into a delicate pudding for his desert.   Everyone at The Golden Bee was as sweet as honey, and I only wish that they were closer to home so that we could dine with them again.  A really fun experience and a must try restaurant if you are in the area.

We decided to walk home but the shuttle driver seen us and did a U-turn to ask if we wanted a ride.  Was nice that they were keeping an eye out for us, it was certainly something I didn't expect, yet everyone on the grounds seemed well aware that we were in the area and were looking out to help us in any way that we needed them to.  We arrived back early evening to find that housekeeping had turned down our beds, left wrapped chocolates bedside and had lowered the curtains.  We sat out on the veranda watching the sunset, feeling the gentle breeze and watching ducks swim past us in the creek.  Noah cuddled in his daddy's arm in one of the outdoor chairs watching golf carts in the distance.   It was a beautiful ending to a perfect day.

Love,

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

Welcome to the Broadmoor

It's no secret that Christmas and Santa are a very important piece to Noah's happiness.  We had an opportunity to visit the North Pole and see Santa however we knew that it would be hard for Noah to travel the distance and then turn right around again to drive home the same day.  Our only hope was to find hotel accommodations so that we could spend time visiting Santa and break up our travel time to make it easier for Noah.

Traveling with Noah, even locally, is challenging.  A lot of thought has to go into finding something that will work for a child like him.  He sleeps in a hospital bed at home; he needs support for bathing, he needs blenders to make his meals, he needs room so that he can lay on the floor and rest, or larger areas to maneuver his wheelchair.  It is so complicated that it kept us homebound for the first five years of Noah's life, because we never thought it would be possible to leave home with a child like him and that we could find a way to make it work.

I reached out to the only hotel that I really knew that would be close to the North Pole - The Broadmoor, a historic five star premiere resort.  I simply inquired about any options we might have and if they might have what Noah needed in order to be comfortable while we traveled.  I didn't expect to receive the warm and kind correspondence and communication that I did.  Our lives are so challenging that it's rare when you make a connection that instantly welcomes you with open arms and without hesitation or reservations about our situation.

Not only was the Broadmoor open to us staying with them so Noah could visit Santa and the Cheyenne Zoo while traveling, but they wanted to learn more about him, and how they could make his stay enjoyable, comfortable and memorable for the entire family.  They reached out in an email that felt like a giant hug.  They inquired about Noah's likes and dislikes and what he need in sleeping accommodations, took note of his favorite foods, drinks, and even asked about his little brother and and us as a family.  The Broadmoor spared no small detail.  They were meticulous in planning and working with us for many months as we prepared for our stay.   I felt such a sincere offering of love from all the staff working behind the scenes to make Noah's stay special.

The Broadmoor booked our stay in the Cottages.  Each Cottage features parlors with high beamed ceilings, beautiful hardwood floors, five fixture baths with heated tiled bathroom flooring, with breathtaking Colorado views of the golf course and Cheyenne Mountain.  Our Cottage had two bedrooms each with 450 square feet, and three bathrooms with 150 square feet, A little creek quietly flowed behind a lovely verandas in the back of the cottages with wicker chairs and rockers so that when you walked out the back door of the Cottage you felt as if the world had slowed down, and a sense of peace and tranquility could easily be found.

The Cottages at the Broadmoor are simply magnificent.  Every detail throughout the entire floor plan made you feel like royalty.  The decor a balance of eloquence, mixed with a hint of history and timelessness enriched the feeling of pure luxury.

We were greeted by Ms. Alamia, the Special Services Concierge who assisted us with remote entry into the gated Cottages upon arrival.  She was just as warm and as welcoming as she was over the phone.  She felt like a familiar friend and had coordinated every detail of our arrival and stay.  We were walked to our assigned Cottage named the Dickinson Cottage, on the very end of the row close to the outdoor fireplace and lawn bowling area.  Our Cottage was just receiving some final housekeeping touches when we arrived.  Even housekeeping was exceptionally warm and friendly.  I enjoyed conversations with all of them, and loved how involved they were in our stay.

We took a quick tour of our Cottage, but I remained in awe of how much thought and effort went into Noah's bed.  His padded guard rails matched the decor and theme of the Cottage, making sure that all 3 rails with the headrest had no gaps and really nice oversized chuxs under the sheets, a plush sensory soft Broadmoor teddy bear nestled sweetly on lined up pillows with a complimentary hat and t-shirt.  Upon looking at the very care and detail that went into making Noah's bed a special place for him to sleep I knew that our stay would be nothing less than extraordinary.

The Cottages also have a partial kitchen lounge that they stocked with a blender so I could puree Noah's foods if we needed, and they purchased his favorite apple juice and breakfast yogurts for him which were waiting in the refrigerator him.

The Broadmoor had coordinated a private bird showing for Noah shortly after we arrived.  A falcon named Popcorn came with his handler to meet Noah.  An incredibly gorgeous young bird, that followed every command and direction flawlessly.  Feeding on chick legs as treats he flew majestically to and from Noah.  Noah's face lit up with delight and awe.  The first time he's ever been able to experience something so close to him - which was a really an enriching experience for a child that has no physical mobility.  He cannot run and chase animals or explore them in a way that typical children or people do.  So having a falcon essentially come to him was incredible.  Noah's little brother was a tad bit in more awe of the greatness of the Cottage, eager to make himself cozy in a red leather upholstered rocking chair and coordinating ottoman than focusing completely on Popcorn's grand flight in air.

Popcorn seemed to ruffle the feathers so to speak of nearby nesting black birds who harassed him as he flew in an attempt to keep him away from their nearby families.  Popcorn tolerated their incessant dive bombing as if he knew that he had only one mission - impressing Noah.

After we had said our goodbyes to Popcorn we had a chance to meet Ms. Alba the Resident Manager of the Broadmoor.  It was exceptionally nice to meet her as she was the person I initially contacted to inquire about the possibly of seeing if the Broadmoor would be an option for Noah's stay while visiting the North Pole.  She equally as warm and loving offering a hug.  It felt so much more than just a simple hotel stay - it felt like we were among family.

I needed that feeling.  For months I have felt my joy being slowly extinguished from all the daily challenges that come along with special needs parenting.  It's exhausting to fight for services, for help, insurance denials, attend therapies, coordinate countless appointments on Noah's behalf, manage meetings, figure out how to fund all of Noah's out pocket medical, therapy and equipment expenses all the while trying to assist other families in the special needs community so that they don't feel as if they have no one to turn to.  We at times are just existing... not living.  Our normal is not normal.  I wish it was.  The Broadmoor for two days made us feel normal.  Completely and entirely normal.  It was as if Noah didn't have the challenges he has, he was valued, respected, and well cared for - an equal member of society for two wonderful days. 

Sitting in a moment of awe in this grand living area in the Cottage the doorbell rang and it was a lovely welcoming gift of cheeses, chocolates and fruits with a bottle of Moscato, a special occasion favorite of mine that the Broadmoor had taken note of.  It was overwhelming in a sense as special needs parenting has a tendency to knock you down that you often feel undeserving of such kindness.  One should never grow accustomed to the harshness and cruelty the world can often deliver upon you if you have a child with special needs - but in a way it does.  It seeps into your soul and makes you feel unworthy.  I had only anticipated that it would be a lovely stay for Noah, but the Broadmoor had coordinated efforts to make each family member feel welcomed and special.

Hospitality is love in action.



Love,

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

Special Needs Parents Have Their Eyes on Taga 2.0

Adaptive bikes are sought by countless parents seeking to give their children with special needs a typical childhood experience of riding a bike.  However, the price tags associated with adaptive bikes are in the thousands of dollars, making them an impossibility for families to obtain.  When our son Noah outgrew typical toddler bikes that we adapted with headrests and lateral supports, and pillows behind his head... I knew I had to find another option so that we could ride bikes as a family.  Noah's little brother was a pinch under a year old, and I searched until I found something that could accommodate both children.  My search led me to the Taga Bike.  I had only one big problem... at the time you couldn't purchase it in the USA.   I found a gentleman in Taichung, Taiwan named Jack, who was willing to ship one to me.  And as you can imagine an out of country purchase on top of shipping wasn't cheap.  But I had this dream... this beautiful dream of riding bikes with both of my children regardless of Noah's severe disability.  It arrived in November of 2011.  A bright beautiful Taga Bike with two seats, and a sunshade for Noah's sensitivities to sunlight, and a rain and bug guard.  It was a really beautiful bike and gave us many years of enjoyment.  But Noah got taller, and now is much too big for the original Taga Bike.   That beautiful red dream sits quietly in our basement now and my dream feels once again on hold.

Because I am always hunting adaptive equipment that can better Noah's life and bring him enjoyment I stumbled on an advertisement for the new Taga 2.0.  I was instantly intrigued.  It captured my attention immediately as it did for so many other special needs parents in the community.  We liked the idea that it could accommodate older children, it had a chair that had recline capabilities, it even had an electric feature, sunshade and even additional accessories for your child's desire to play.   And this is the very best part, it's affordable - or I guess I should say within a more reasonable reach for special needs families than most all other adaptive bikes are.  


Taga 2.0 was launched into a Kickstarter Crowdfunding Campaign.  Within the first two weeks Taga 2.0 reached their 100K goal within the first eight minutes the campaign going active with nearly 1,500 backers who pledged a purchase. This has pledge amount has now exceed $1.55 million dollars.   Figures like these tell you just how much families have been waiting for a bike like the Taga 2.0.  Of course by pledging for a Taga 2.0 in the next 44 days you will be saving hundreds of dollars in a discount from retail price. 

And here's an even better part... for all of Noah's followers the first ten who pledge for the Taga 2.0 during Kickstarter will get a free universal click-on adapter!  All you need to do is send an email to [info@tagabikes.com] info@tagabikes.com saying that you were referred by Noah's Miracle! 

 

And because Taga is a company that cares... as we speak they are working behind the scenes to give even better seating opportunities to children with special needs that will be compatible with the Taga 2.0.

The Taga 2.0 would allow me to keep that dream alive for Noah and to get him back into family bike participation opportunities, we hope that we'll be able to find funding during the Kickstarter campaign to be able to gift him with a Taga at Christmas (anticipated estimated delivery for many of the pledge options).  It has an extra comfort seat, recline seating, sunshade, and toy accessories that we could mount that would give Noah such a sense of fun as he rode a bike with his family.  A perfect match for so many children with special needs!

Don't forget to check out the Kickstarter Campagin and video at the link!  Taga 2.0 is a perfect bike for children of all abilities. https://www.kickstarter.com/projects/taga2/taga-20-the-ultimate-most-affordable-family-bike

Love,




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

Blue Light Protection Glasses for the Special Needs Child

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.

Love,





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

Mother's Day 2016: We're Getting Older

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
Love,



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

Pick One

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...

Love,


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