Monday, April 28, 2014

Restaurant Blues

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After our tour looking at Bentley Baths, Chris and I decided we'd stop off for lunch before returning home.  Since returning from Ireland, I have been craving that same warmth and love in a meal that I experienced there.   A few weeks ago during our last snow storm, I had Chris do take out so we could try some Irish Stew.  I really loved the food and wanted an opportunity to dine-in, so I asked Chris if we could please go to the Exchange Tavern.   Being the sweet husband and daddy that he was he agreed even though I know he likely preferred something familiar like Chili's.

The parking was a little frustrating as there were only two handicapped spots, both filled on each side and a parking way that wasn't a lot but really side-street parking, but we found a spot and were able to maneuver Noah's wheelchair okay in the parking spot we had.  It was a chilly day so we shuffled inside quickly, while noticing the sign on the front of the door "Irish Hospitality."   A Guiness sign hung in the entrance of the restaurant and I was excited to be there.  Excited that is until it all fell apart...

We arrived really late after lunch.  It was a few minutes shy of 1:45pm, and the restaurant was calm and quiet.  The host disgustedly looked at Noah then stood in place looking around and said she had no room for us. I asked her how could that be, there were at least 10-15 tables and booths that I could openly see, she said those were reserved for a larger party. She said that the wait was going to be over an hour as she filled all the tables 35 minutes ago, had a maximum of a 40 person capacity and recommended we go elsewhere. I couldn't believe she was turning us away because of Noah and his wheelchair, the sign on the door says "Irish Hospitality." I've experienced Irish Hospitality in its truest form and they would have never done that to us in Ireland anywhere!

Chris and I looked at each other in disbelief.  Noah was starting to grow agitated because he knows where he is and expected to be seated, and we were the only ones waiting for a table.   We knew that pushing almost 2pm Noah needed to eat, we didn't have time to battle and when these types of things happen you really feel like the walking wounded.   So we turned around and walked out, Noah's cries started.  He wanted to eat, and he didn't understand why we were leaving.  We walked to the closest thing we could find which was Ted's Montana Grill. We were seated promptly, the hostess recognizing Noah as a child giving him a child's menu and verbally said table for three.  Ted's did everything right, making compliments about how cute and sweet Noah was, talking to him, even though he wasn't verbally responding back, and even offering him a really large chunky brown crayon that they found to allow us to help him use it to write on the paper tabletop.  

Even the family next to us did a great job when their two year little girl, much too little to even have a concept of disabilities and differences pointed to Noah and said "look momma it's a baby."  The mother smiled at me and "no, honey don't be silly, that's not a baby that's a little boy."  It would not have bothered me if the mother hadn't corrected her little one.  It was nice that she did, but I understand to other little children that Noah's ATNR reflexes do make him mimic much of the same movements that a baby does.   Calling him a baby is so much kinder than what he's been referred to by others.  I'll take baby over cripple or retard any day.   And I recognize you have to pick and chose your battles and valid complaints.

Chris and I sat in silence most of lunch, both stunned from being turned away, and although we were thankful for Ted's welcoming us with open arms, it's not where we wanted to be, so were experiencing some heavy disappointment.  I think it rather set the tone for the rest of our day.  We rather sulked around the house, cleaning, putting about, and looking at each other as we both knew what the other was feeling even if we weren't talking about it.

I wanted the Exchange Tavern to be a place where we frequented and loved - especially being a hop skip and a jump from home.  But it turns out they didn't want to spread the love back.   I did try to reach out to Exchange Tavern to inform them of my experience but haven't yet heard back.  My only hope is that they don't do that to any other family with a disabled family member ever again.


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

Bentley Baths

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We were invited to look at a home modification showroom today to look at handicapped accessible bathroom products.   We are starting to have challenges for Noah's bath time, so it was nice to see what options exist out there for those with disabilities.    Noah really lacks an adequate bath chair that works for him.   I've never liked his Manatee by Snug Seat because it raises Noah really far out of the tub, and he can't be submerged like other children his age.  He gets goosebumps because all he can experience is water being poured over him.  Noah also isn't a big fan of it, compared to the baby tubs and high chair I rigged for him, but he's just out grown all other options.  There is a bath seat I've had my eye on for some time from Specialized Orthotic Services, but they are based in the UK and unwilling to ship the product or even discuss price with a US resident.  

Bentley Bath with outward facing door
We looked at Bentley Baths today, more specifically hydrotherapy tubs.  I learned a lot more today than I ever realized about handicapped accessible bath tubs.  The most important part being the health benefits that they provide for those with disabilities.  Hydrotherapy has really been around for thousands of years and has medical benefits for the lymphatic system.  Ancient cultures in China, Japan and Greece were among the first to develop hydrotherapy.   During the 18th and 19th centuries European physicians  studied the science of water therapy for "cures."  Hydrotherapy was a common treatment at the time for a host of illnesses, including pneumonia, anxiety and back pain.  Since that time Hydrotherapy has expanded to assist with the relieving of toxins that cause pain and inflammation, relaxation of muscles, relieving pressure of joints and bones, cleanses organs and detoxifies body tissues.    These are just some of the benefits to Hydrotherapy tubs:

  • Insomnia and Stress: The National Sleep Foundation recommends taking a warm bath a few hours before bedtime to enhance sleep quality.  Hydrotherapy is an effective natural sleep aid that helps the body relax and unwind, leading to a higher quality of sleep.
  • Circulatory System: The heat and massage action of hydrotherapy help blood flow more easily, thus relieving tension headaches and soothing stress-prone areas like the neck, shoulders and lower back.
  • Muscular and Skeletal Systems: Sore muscles, lower back pain, aching joints – all stand to benefit from the heated water massage of hydrotherapy.
  • Respiratory System: The moist heat associated with hydrotherapy is often beneficial to those suffering from respiratory ailments such as bronchitis, congestion and asthma.
  • Digestive and Immune Systems: Improved circulation results in a more effective digestive progress. Wastes and other toxins are more easily eliminated, and lymph is moved more efficiently through the body, strengthening the immune system.
Full Door Opening Tub

Now if you have a child with special needs this all sounds like an in-home dream come true.  And it really kind of is - except for the price tag.  Most hydrotherapy walk-in tubs start around $7-8,000.  Now if you haven't fainted yet, there is some hope for funding.  Some Medicaid waivers in various states will assist with the costs of a handicapped accessible bathroom, there are also some local foundations that will step in to assist based on need, and then sometimes there is the good old hard way of fundraising.    Of course funding of any kind will need to be accompanied with a doctor's recommendation and an Occupational Therapist Evaluation.   

We looked at a model for Noah that we are interested in, with a full door that would swing open towards us, not inward, and would have spots for a Hoyer Lift System to slide underneath it for transfers when Noah got older and too heavy for us to lift.  (Yes as special needs parents you have to kind of plan into the future knowing that with each growing year it will get harder and harder to lift Noah).   We also are exploring some custom options like whether it's possible to have a built in abductor, railings, and five-point harness, and headrest all attached to the tub itself - really a completely custom tub for Noah.    I'm sure that customizing a tub will only skyrocket the potential costs.  I didn't want to even go there yet.
Door that opens inwards with seated grove

We were able to see the jets in action to determine if sensory wise it would be something Noah liked.  And he was delighted by it squealing, laughing and watching this big ducky swim in the simulated tub.  He even loved it when the jets were clearing the line, something all the hydrotherapy tubs do about 30 minutes after they are drained (Note: It could freak you out a bit if you weren't expecting it).  And you'd think it would take forever to fill a tub like this, but it both fills and drains in 3-5 minutes.   Some of the tub designs have a grove in the seat.  I should have known what it was for being a certified CNA, but I asked anyway.  It is designed to clean the undercarriage of those who need assistance doing so without having to lift them up from a seated position.  A feature I don't think Noah would need at this age, but something I am glad to know exists for others who need it.
Simulated Tub with Duckie

I'm trying not to get too excited about the idea, as I'm quite familiar with things just not working out, and we haven't even yet secured funding or confirmed yet if it's going to really be possible to customize this tub so it has a built in harness.  So I hate to put the horse before the wagon and dream too big and then be let down when I can't obtain it for Noah.

But I can tell you that I was very impressed with the design of Bentley Baths, and with the customer service from the representatives from In-Power who invited us.   Now if you're shocked about the price of the tub, then maybe I should wait to tell you the total cost of a handicapped accessible bathroom.  It just might keep you up at night and give you nightmares.   If only these things could be cheaper and there were more resources than there is.   But I have faith that where there is a will there is a way.  So we continue to march forward with the belief that what feels impossible can be made possible.


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

Friday, April 25, 2014

From Emotion to Advocacy

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I seem to be stuck in what feels like this endless fight with Medicaid for a piece of durable medical equipment, the Krabat Pilot Crawling Device.  A device that was endorsed both by Noah's primary care provider and therapist.   Yet Medicaid has waged this war under the heading "medical necessity."   Forcing me to pursue a appeals trial with an Administrative Judge, with a successful win, only to have The State Department appeal Noah's win and file an Exception to Initial Decision.  Which required them ordering a copy of the transcript of the hearing in order to try to convince the Judge to change his mind and again deny Noah the Krabat Pilot Crawling Device.  

I received The State Department of Health Care Policy and Financing's Exception to Initial Decision in the mail a few days ago.   There are so many aspects of having to fight for Noah that stir up so many emotions.   I go from mad to sad and back to mad again all in less than sixty seconds.  I have moments where I fantasize about opening my front door and screaming at the top of my lungs to see if anyone will hear me.  My mind then wanders and I ask myself over and over how I can stop this madness.  How I can change this so that no other parent ever has to experience what I am going through?  The State Department expects me to raise the white flag.  Surrender and just give up.  I know many who would have done so long ago.  I know no one would blame me for walking away.

But then I realize that I have to push my emotions, my anger, my sadness, my tremendous frustration, and my exhaustion down to the depths of my soul so that I can move forward to advocate.  I know that I am not an effective advocate if I allow my emotions to take over the goal.  And the goal is providing for all of Noah's needs.  So I separated my anger in order to draft a Response to the Exception to Initial Decision that  was factual, direct and to the point, leaving out the all the feelings that swirl feverishly in my mind and heart.   I spent two hours away from my boys in order to draft a response for the child who has no voice.   It's hard for me not to view the State Department as an enemy.   They have forced me to fight since October of 2013 for something my child needs.  Even with a successful win,  waiting on a durable medical order could take months and push this entire process from start to finish to a full year.  One full year that Noah had to do without something because I had to fight for him.   A lost year that he could have made progress learning to crawl.   I lost a full year.  That is what hurts the most.  That I lost time for Noah because an agency forced my hand to fight.

This was my response to The State Department of Health Care Policy and Financing's Exception to Initial Decision: 

Appellant, Noah Warden represented by mother Stacy Warden, hereby submits the following response to The State Department of Health Care Policy and Financing’s Exception to Initial Decision:

Appellant finds the State Department’s assessment of Exhibits admitted is inaccurate. The State Department filed and admitted Exhibits A-E. Exhibit E was given to the State Department by the Appellant and contained two documents. One was a recommendation from XXXXXXXXXXX (the Appellant’s Therapist) and a recommendation from Dr. XXXXXXXXXXX MD, (the Appellant’s Primary Care Provider/Doctor). Exhibits F, G and H were tendered to The Court by the Appellant and copies to all parties were attached to the Notice of Hearing in this case. Furthermore, there were no objections from the State Department to admitting Exhibits F, G and H.   Appellant likely should have numbered Exhibits rather than using alphabetic identification, but understood that the Court was streamlining Exhibits for easier reference.

Although the Appellant did not have the opportunity to review the requested transcript in order to file a Response to the Exception to Initial Decision, Appellant disagrees with the assessment and contradiction to Findings of Fact #2, and #4. While testimony from Appellant’s mother seems to be accurately explained, the Appellant’s physician recommended the Krabat Pilot Crawling Device would be suitable for the child both Exhibits D and E. In Exhibit D: “The following equipment is medically necessary for Noah.” And in Exhibit E: “Noah Warden has cerebral palsy and is unable to crawl. He would benefit from the use of a crawl assist device. This device will help his gross motor development and upper body strength and development.” If the Appellant’s physician felt the piece of equipment in question was inappropriate, a recommendation of medical necessity would not have been provided.

Additionally, the Appellant is disturbed that the State Department offers up testimony that was not given nor made medical fact suggesting to The Court that approval of such device could cause further injury to the Appellant. “The Appellant will be placed in a negative position and can add additional harm to the Appellant with the use of the Crawling System.” There is no documentation to support such an absurd assumption, nor testimony offered in the transcript discussing any potential harm to the Appellant.

The State Department indicates that they do not dispute the information from the Appellant’s physician. If that were the case then there should be no question as to the medically necessity, as it is clearly outlined by the Appellant’s physician in not one, but two admitted Exhibits. The State Department indicates that they do not dispute Ms. Warden’s familiarity of her son’s conditions, yet contradicts that statement in challenging her assessment of her child’s head, neck and trunk control and provides an implication that she is pursuing a less than safe device for her child. 

Appellant further takes issue with the suggestion that the Appellant’s mother has no training, education, knowledge or experience in determining if her own child’s head control is adequate enough for the device. The State Department had the opportunity to cross-examine Ms. Warden as to her qualifications and failed to do so. The State Department has no knowledge to represent to The Court what the scope of her qualifications may or may not be. To imply to a Court of Law that a parent of a child with special needs requires formal training, education, knowledge and experience in recognizing appropriate durable medical equipment is a bold move. That statement goes way beyond the scope of determining medical necessity. Additionally, The State Department did not question whether or not the equipment trailed shared similarities or differences to the Krabat Pilot Crawling Device and is attempting to create a record that doesn’t exist. 

Appellant strongly disagrees that the State Department has sought out the most straightforward approach to establishing medical necessity and in fact feels the State has deliberately drawn out approval for this request, incurring unnecessary costs, now including a transcript of proceedings. 

Based on the information presented, Appellant requests The Court deny the State Department's request to overturn the Court's decision and that the Court's original decision to grant the Appellant the Krabat Pilot Crawler Device stand.  

And now I just sit back and wait for the Judge's decision while wishing that there was a better way to pursue help for my child.  I dream of a day when special needs parents don't need to fight so hard. 


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

Thursday, April 24, 2014

Toilet Paper Roses

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We recently made the decision to try housekeeping services, a covered benefit through Noah's Medicaid Waiver.  I struggled with the decision and in fact wasn't entirely certain I was going to even blog about it.  The thing is I think I felt really guilty about it.  Guilty that I'd have to admit that I don't have enough time to adequately do everything in a day.  Guilty that I'd be asking someone to help me pick up the mess me and my family created.  And especially guilty knowing that not all Medicaid programs are created equal that it's not common for many special families to be offered this service at all.   I didn't feel like I deserved it.   I after all am a Special Needs Mom,  I should be able accomplish everything on any given day.  I wasn't even sure what to expect.  I only had a home that I lived in cleaned once and it was during a transition to a new home.  So, it was rather cleaning up someone else's mess left behind and not my own. 

I figured if I didn't use the service then Noah's allotted Medicaid dollars would simply go to waste, and that wasn't a good feeling.  Especially since  we struggle to find resources and work so hard to get anything for Noah and I didn't like the idea that it would be a use it or lose it kind of deal.   So we made the decision to give it a try, we could always cancel if we didn't like it or if we still felt uncomfortable with the idea.    Today was the first day cleaning services came to assist.  I didn't know what to expect.  Toilets?  Floors?  Linens?   I just kind of felt my way through it, and they sent a really sweet person who I really liked, and she put me at ease, even though I still felt badly there was someone there to pick up our mess. 

My maternal grandmother was a maid for the Holiday Inn, and then refusing to retire, later went on to clean a local bowling alley.  I remembered how hard she worked, and I always worried her crippled hand was a result from wringing out rags day end and day out,  when it may have even been a combination of arthritis - I'll likely never really know.   She did a good job always.  She loved what she did.  And I think I learned the art of being a really detailed cleaner from her and my mother.   They took pride in cleaning, so naturally so did I.  She seemed happy and she loved the connection she had with others while doing it.   It was never beneath her to clean for others. 

My aunt is on another round of chemotherapy fighting cancer again and communicated that she had to hire a cleaning service to help her as she couldn't keep up while sick.  She swore by the help and said it was wonderful to have.  Yet again I battled the guilt... but I am not sick.  But then there is Noah and all of his needs.  I'm trying to balance all things in a day.  Feeding, clothing, activities, therapies, making him happy and tending to his little brother, returning phone calls, running to appointments, advocating, fighting insurance battles, and making sure dinner is ready and everyone is fed and taken care of.  And I do usually a decent job of cleaning, but I am so utterly exhausted.  To the point where you are just tired of being tired.   My aunt's advice was that I'd likely really love the help.

And she was right.  I could start to smell the fresh aroma of a clean bathroom looming in the hallway.  And I felt a tremendous sense of relief.  I sat on the couch holding Luke, then switching to the floor to lay with Noah.   A moment to just relax.   A moment I didn't have to be using to clean and tidy the house.   And I was amazed at the detail.  Sometimes you think well is someone going to be as detailed as I try to be?  Will they clean the all the corners and do a thorough job?  And I was so impressed, right down to the help with the baseboards.   I was so thankful for the help.  So very thankful. 

Then after our cleaning lady left, I noticed the delicate rose she made in all three bathrooms with the roll of toilet paper.  I've seen many times the folded peaked edges, and have been known a time or two to do that myself after cleaning a bathroom but I've never seen a toilet paper rose until today.  It felt like such a gift.  I loved it.  It made me feel cared for.   It is so amazing on how something so simple - a roll of toilet paper with a tender rose upon cleaning left me with such a special feeling - like I was deserving of help.

I know that there are so many families that would hope and pray for the same covered benefits, and I genuinely wish across the board all services were equal and universal nationwide.  But if you happen to have that available resource and were a bit hesitant like me, I'd encourage at least trying it.   I was pleasantly surprised by how much I enjoyed having an extra set of hands to help.  And am learning accepting help is not the equivalent to admitting defeat. 


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

Monday, April 21, 2014

A Definition of Determined

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I've been struggling lately with trying to understand why some people are so willing to help, while others will do anything to avoid such a thing.  You'd think I'd have this all figured with a Major in Sociology.   Deep down I think I already know the answers, but don't want to believe it.  I just want to deny knowing that many do not have the desire to be conducive to being part of the solution or have zero intentions of truly wanting to help you or your child with special needs.  Not everyone wants to be helpful... unless well there's something in it for them.    My head doesn't want to embrace the realization that the self-interest norm trumps simply doing the right thing by others.

It goes without saying that well-known motivations behind helping others is usually a  personal connection, which triggers empathy.  That's why special needs parents typically have a soft-spot for each other and tend to come to each others aid even though they're all in the same boat and sharing the same struggles.   Diffusion of responsibility or as some may refer to it as the bystander effect, is one of the most frustrating, not to mention time consuming aspects of special needs parenting. 

We stumble upon this on a regular basis.   It comes in several forms.  One example is fundraising when you have a child with special needs.  People have what is referred to as futility thinking.  I am just one person so how is my tiny contribution of five dollars really going to make a difference in the long-run.  We fail to remember as human beings that it often only takes one person to make a difference in the life of another.    A few months ago, we attempted a t-shirt fundraiser for Noah.  The kind where you have to have to reach so many pledges to even see a penny from your efforts.  The goal was 50 shirts or no pledged orders would be fulfilled and no monies to Noah would be given.  We had four pledged shirts.    Yes, we failed.  Pretty big at that.   But it wasn't necessarily because no one cared or that Noah wasn't loved.   People sit back often thinking wow, only at four pledged shirts, don't see them getting to 50, so not going to put my hat in the ring, knowing the likelihood of failure of the fundraiser is high.

As special needs parents we also experience the lack of help at times from various providers that are involved in our child's life.   Caseworkers, therapists, doctors, care providers, teachers, insurance companies, durable medical providers, and government agencies ready to stand up without notice and say bummer for you.   Too often we wind up feeling like many simply want to be a part of the problem and not a part of our solution.   We spend our days finding other resources, avenues to pursue, leads to follow all because someone makes the decision they don't want to go the extra mile and think it's funny to throw down tack strips on your journey to slow you down.  Sometimes you think some intentionally find it a sport and make a habit out of it. Makes my head spin and wonder how they can sleep at night and exist alongside their conscience, but they somehow do much to my amazement.

So what can you do from the undue stress and anxiety this all can cause?   You step back take a deep breath, realize your child is worth so much more than he is receiving.   And as frustrating as it all is, you keep going knowing that you're doing a good job, even if others make the decision not to.  We keep our eyes on the goal, we know which way we still need to head.  It might take us longer to get there, but we'll get there.   Without question we know we cannot fail today, tomorrow, not ever.   Someday you just might see the words "Special Needs Parent"  next to the definition of determined in Webster's Dictionary.


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

Sunday, April 13, 2014

Talking About the Miracle

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Last night was the Sharing Beautiful Photography Gallery by Steve Stanton at Two Rivers Craft Coffee Company, where Noah was one of the many children photographed for a book collection and photography gallery.   I went by myself, leaving the boys at home due to one still eating dinner and the other recovering from a minor cold.   I am sure it would have been so much more fun to have Noah there with me.   It is always different when you talk about the miracle of his survival, without seeing him in real life.   It's almost like this speech that is burned on my tongue... thirteen minutes without breathing or a heartbeat... global brain damage (the part that makes everyone's heart sink and their facial expressions cringe)...  the discussion of taking him from life support, being talked into that DNR against our better judgment and then later doctors trying to convince us to starve him to death... and his will to fight.  
Sharing Beautiful the Book

That was Noah's start, but not his present and not his ending.   I delicately dance around the questions of how hard things are now for Noah and even us as a family.  Carefully choosing my words so that I put all the wonderful things ahead of the hardships.  In fact, I rarely if ever discuss the hardships when first meeting someone new.  Or if I do, I attempt to make them sound like they really aren't that bad.  (Even if some days things are exceptionally rough). 
Small Feet Leave the Biggest Footprints in Your Heart

Gallery Pictures
Why not you might wonder?  Well it's all too much for strangers to absorb in the first initial introduction to Noah's story.  In the end people want a happy ending, and the happy ending for us is that Noah lived.  And we treasure his life more than the physical abilities that were stolen from him at birth.   Being overly forthcoming about all that goes along with life with a special needs child is a bit mind blowing for most.   And I know that I have the power to inspire and encourage hope and faith in all things possible.  People need that.  And they need to feel, understand and see the miracle of life before all that other complicated stuff like therapies, equipment, financial strain, the medical malpractice lawsuit, court judgments and appeals for all these various things, Medicaid, SSI, equipment vendors, and all the other circumstances that sit before me each day.  

People need to know the value of Noah's life means more than all that other stuff that I have to deal with.  It's often uncommon when strangers learning of Noah's story become personally invested or involved with our family long-term, but the very few that do, learn along the way about all the other hard stuff... or those curious usually seek out and read his blog and learn about many of the challenges we face as a family with a child who has special needs.  And all the others, well I hope they walk away with a memory of a little boy that they either seen or heard about and remember Everyday Holds the Possibility of a Miracle.

I never grow tired of sharing Noah's story.  His Miracle Story.  He lived.   That's the best part of the journey.  The most important part. 

If you get a chance to check out Noah and all these other amazing children at Two Rivers Craft Coffee Company, in Arvada, Colorado,  the portraits will be up for two months. 

As I sipped on a vanilla latte decorated with a blooming cream heart I thought how wonderful it was to connect with others, and share the story behind the child with piercing beautiful eyes in black and white photos.  It was such a honor for Noah to be included in such a diverse and beautifully done project. 


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

Monday, April 7, 2014

An Open Letter to Medicaid

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Upon arriving home I had the pleasure of opening a letter from Medicaid indicating they had obtained a Court Order for an extension of time as they decided to appeal the Judge's decision allowing Noah to have the Krabat Pilot Crawling device, along with an a request for continuance to obtain the Court transcript of the first hearing that resulted in a Judge granting Noah the crawler.   Mad is an understatement.   A Judge awards Noah a crawler device and they're so spiteful they continue to fight me.   Unbelievable.  They now have a continuance until April 21st to obtain the transcript, then I assume another hearing which will likely take place in another one-two months.  By the time this is resolved we'll be at this over a year - not to mention the ordering time involved from the DME (Durable Medical Equipment Provider) if I can finally see my way clear of Medicaid.

For those who may not be up to speed about our fight for the crawler since October of 2013, you can read about it here

Should I be surprised?  Probably not, after all they are spending so much money fighting me in order to block me from obtaining this for Noah that in then end they could have funded two or three of them.  Really that's how you chose to use tax payer dollars?  Truly.   Yep, Truly.    So Medicaid this is my open letter to you! 

Dear Medicaid,

Blast you to hell! 
May the gates of paradise never open to you.
May the lamb of God stir his hoof through the roof of heaven and kick you in the arse down to hell.
The crows' curse on you.
May you be eaten by an awful itch!
Pissmires and spiders be in your bed.
Curse of the seven snotty orphans on you.
May you find the bees but miss the honey!
May the curse of Mary Malone and her nine blind illegitimate children chase you so far over the Hills of Damnation that the Lord himself can't find you with a telescope.
May you leave without returning.
May you melt off the earth like snow off the ditch!

(Thank you Ireland for all you taught me) 

Noah's Mom

Bring it on Medicaid I'm ready for round two. 

On the other complicated homefront,  our van was rear-ended at a drive-thru.   The lady behind us said she was digging for money in her purse and got confused and hit the gas instead of the break.   To say the least the family is okay, the van has a crushed rear end and some scrapes and scratches.   She couldn't produce an insurance card, but gave us her name and address and the name of who she said insures her, and we took down her license plate number just in case.  We made the decision to go through our insurance and have them pursue a refund on our deductible in subrogation to cut down on the process, the need for an appraiser and to streamline things if we need a rental while it's being fixed.  We rather blindly picked an auto body shop that was the closest to home that had the best reviews online.  And when I spoke to them today they were so kind and reassuring, so I'm hopeful this will all work out with time.

Ideally, we know our van is on limited days but we will likely need it for trade in value someday to get Noah a handicapped accessible van.  They start as many know, used for around $35,000.   Even with a trade in, it's something we can't do at this time, so we continue to limp along with the van we have.  

And I was reminded we weren't in the land of kindness anymore when I went to order Luke's birthday cake at a local bakery and was confronted by a lady who tried to move Noah's wheelchair because she felt he was in the way,  and then we realized not only was she rude in person but also in courtesy as she blocked my van so I couldn't load Noah's wheelchair. 

We also were notified that Noah's hippotherapist is leaving the riding center and they have no plans on replacing her.  Which leaves Noah without a Saturday spot.  Noah has been offered a spot to do hippotherapy at this therapist's home, but we are worried it will be a longer drive, and no indoor arena.  We also have concerns if there would be enough volunteers to assist Noah with hippotherapy at a private residence.  We hope to take a tour to see if it would work at her home, but it's all just complicated timing for us to make a decision so fast on what to do next.  In fact I feel a bit overwhelmed just thinking about it. 

Praying for a better week ahead, was a rough first week back home.


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

Our Goodbye to Ireland: Carrickfergus Castle

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Carrickfergus Castle
We only had less than 24 hours left in Ireland, and you can't travel all that way and not see a castle.  Ironically the day we went it was a FREE day!   But we arrived a half an hour before closing.  Which gave us just enough time to quickly tour.  The gift shop had already closed!  Which was probably a good thing so there was no temptation.

Carrickfergus is everything you'd expect a castle to be.  It was majestic and full of glory.  Propped on the hillside and at the water's edge.  It gave you that kind of feeling as if you were entering a magic kingdom, through arched doors.   The interior of the castle was different than I expected it to be.  From the exterior it looks like this cold hard fortress.  The inside felt like you walked into a little village with different buildings within it.  Amazingly it was very handicapped friendly, a large steep ramp allowed us to get Noah to the top both ways.   That was really magnificent that he could experience everything with us on this trip.  Noah was not left out of anything.   The wind was a bit chilly up there, and against the water's edge you could see ships in the distance.   It was rather neat picturing yourself in a spot that contained so much history.  

We toured quickly so that we could see the entire castle before it closed, had we have had more time I certainly would have lingered and soaked up the ambiance.  It felt like we were clicking off pictures wildly trying to see everything in record time.  They were excavating when we were there.  The Centre for Archaeological Fieldwork, QUB have been uncovering some of the 19th century military aspects of the castle.  In particular they've traced the length of tunnel where ordnance was off-loaded from ships and taken into the castle for storage.  It was rather fascinating to watch the excavation and the unearthing of history.   Sure beats anything you'll learn about in a text book!   What a wonderful moment in time for us as a family.  I never dreamed we'd have a chance to experience anything remotely close to this after Noah's diagnosis.  I never thought any of this would have been in our future.

I think that's what makes the entire experience so much more important and appreciated.  I know the value of what we did, I know how significant it was to venture so far from home, on a wing and a prayer - literally.   We blindly trusted this was meant to be and jumped in with both feet.   And there we were, at a castle in Ireland. 

I reached out touching a wall, as if I was leaving my fingerprints to say I was once here.  Remember me, I begged.  Remember how much courage we had to find our way so far from home.  We were writing our own beautiful history.   Noah loved the castle.  Luke likewise was rather attached to the idea after watching Mike the Knight on CBeebies at the hotel.

Noah seemed fascinated with the water,  and in awe of the large cannons that lined the perimeter of the water's edge. He also really loved that the sun peaked out just over the top of the castle's edge as the sun was going down.  That was rather a beautiful moment.  The sun felt so close as if you could just reach out and touch it.  I'm so glad we had an opportunity to see Carrickfergus Castle.  It made the journey feel complete.  The grand finale.

We left the castle to pack our bags and get ready for the early morning flight home.   Our beautiful adventure had come to a close.   We left the hotel at 6am in the following morning, with a last breakfast of delightful pastries.  Noah did amazing on all flights and only had some difficulties on the plane home from London to Denver.  It was a bumpy ride, with a very nerve-wracking landing that caused the plane to tip both directions.  Noah in true sensory style threw up four times.   Can't say I didn't feel like joining him.   But we were on the ground and home.  Noah's wheelchair suffered some damage to the handles on the final flight home, but so far British Airways have been amazing about that too.   And now we have so many good memories that will last a life time.

The last wonderful goodies from Ireland

We all had a little trouble adjusting to being home.  The boys were on Ireland time for an entire week, and Luke caught a cold the morning we left for home, which he later shared with Noah.   And we kind of felt like we left pieces of our heart back in Ireland.  But we gained and grew so much as a family and feel so very blessed.


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

Sunday, April 6, 2014

Titanic Belfast

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We were able to visit the Titanic Museum in Belfast while we were there.  The Museum was within walking distance from the hotel but the weather was rainy that morning so a taxi was arranged to help us.

The Musesum has nine galleries:
Gallery 1: Boomtown Belfast
Where you walk through the Harland & Wolff shipyard gates and learn about why Belfast was the perfect location to build the biggest ship in the world
Gallery 2: The Arrol Gantry & Shipyard Ride
You get to immerse yourself in the construction of the Titanic as you take your seat and fly through the busy shipyard.  (Yes we held Noah and he was able to experience this ride!)
Gallery 3: The Launch
Brought to life by innovative gazing you get to see the Titanic as the ship would have looked sitting on the slipways waiting to hit the water for the first time.
Gallery 4: The Fit-Out
You get to experience life on the ship from first class rooms to the engine room
Gallery 5:  The Maiden Voyage
You get to view the stories of the crew and passengers; learn about their stories and their lives on board the Titanic.
Gallery 6:  The Sinking
Reliving those final hours of the tragic sinking of Titanic's story through a dramatic sensory experience.
Gallery 7:  The Aftermath
You get to experience how the world reacted to the news of the Titanic sinking through interactive exhibits to investigate what happened to those on board.
Gallery 8:  Myths and Legends:
You get to discover fact from fiction with interactive touch screen galleries
Gallery 9:  The Titanic Beneath
Take a journey to the bottom of the ocean and experience where Professor Ballard famously discovered the Titanic in 1985.

And you can even see the cranes as they existed then named Samson and Goliath.  They have been repainted through the years but they are still standing tall and proud.
Samson & Goliath

The day we went to the museum they had a police conference there, so there was a lot of Belfast security.  Kind of made you feel like you were coming on an extra special day.  We even were introduced to a politician while we were there, (terrible the name escapes me); but she was lovely and everyone told me she was very high up, so I know it was a privilege that we met her and that she took the time to speak to us.

I've always had a fascination with the Titanic, which I largely contributed to what I learned in school and the Molly Brown House  Museum in Denver, Colorado.  I loved Molly's story.   And so it was neat to actually be where it all started.  I loved how handicapped friendly the museum was, spacious elevators, wide exhibits, and even a ride that Noah could do, we just had to sit him next to his daddy while a bar went over his legs.  Chris just put his arm around Noah for support and off we went.  Was a neat ride.  Made you kind of feel like you were literally flying through time.   Noah certainly enjoyed it.  That ride definitely gets high points for children who especially crave vestibular motion.

Noah also was really in love with this exhibit that took you through all the levels and rooms of the Titanic in a 3D like room.  It gave you the sensation like you were really moving and experiencing a real life event.   Interesting how the brain can pull tricks like that on you.  But I can understand why Noah loved it because it gave you the sensation of movement, and he likely felt like he was moving just while sitting in his wheelchair.

They also had a screen where you could see the Titanic leaving the dock with all its passengers.  All those joyous souls that had no idea the fate that lay ahead.  But that's true for so many of us.  Noah's birth felt a lot like that.  The excitement of waiting and preparing for a baby.  The showers, the decorating of the nursery, the picking of a name... then you go into a hospital expecting to bring home this bundle of joy and live happily ever after.   I certainly didn't see the iceberg ahead for Noah and I either.

We got to see what different cabins looked like and granted first class looked like a dream come true, even to this day - I thought to myself that if I had to I could have bunked in lower class, but I suppose I've learned you don't have to have the best of everything to be happy.

We even took one of those souvenir photos, with Chris as the Captain of our family.  We figured what the heck, why not have a one of those staged little photographs to bring back. 

They have a large theater there, much like the IMAX experience that we have here in the States.  Noah liked watching things on a large screen and it took you through the discovery of the Titanic at the bottom of the ocean.  You rather picture it still lying there on the ocean floor, quiet and still. We really enjoyed the Titanic Museum as a family and I'd highly recommend it as a must see place if you visit Belfast.

After our tour of the Titanic Museum we met one of our new friends for lunch called Pizza Express They have really wonderful pizza and pastas.  I really liked the pizza in Ireland, it has a very thin crust, but so much more scrumptious varieties and combinations than we have here at your traditional pizza chains.  Chris I think much prefers the greasy kind of pizza, which these were not.  But I think Belfast pizza is way more friendly for most waistlines.  I had a pasta dish, with added sausage which was a bit spicy but very good.   Luke had garlic cheese noodles, and Noah he was all about his chocolate sundae.  And of course I couldn't resist indulging in a little coffee and treat after lunch a little dolcetti with a lemon meringue torta.  If only they'd deliver all the way to the States I'd like to order a Piadinas right this moment!

The Pizza  Express Menu
Noah enjoying lunch at Pizza Express
Luke with a temporary change of hats at Pizza Express

After lunch we headed to our last adventure of Ireland -Carrickfergus Castle!


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

Noah's Ark: The Petting Zoo in Ireland

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After our conference and meetings at Leckey it was time for play!   We picked up the children from the hotels and made the short journey to The Ark (Open Farm)!  Yes, imagine how excited I was when I realized that Noah was going to get to visit The Ark - and not only visit The Ark, but walk at The Ark for the first time - especially given his namesake.  
Noah & Family at The Ark Petting Zoo, Ireland

We arrived and looked around briefly.  Luke latched on to a little John Deer child's tractor.  He loved it and wasn't about to get off for well, anything except for a playground.  We suited Noah up in the Upsee so he could walk around and experience animals at his level.   Noah was up and ready to go in less than five minutes and we walked through the barns, seeing pigs, sheep, chickens...  they let Noah have bread to feed sheep, a bottle to feed a pigmy goat, pellets to feed other animals.  Noah for the first time in his life got to stand and feed animals. 

Noah feeding a baby goat a bottle at The Ark Petting Zoo

They even brought out a white rabbit and Noah opened his little hands to reach out and pet the rabbit all while standing in his Upsee.  Luke brought up the rear in his John Deer, having way too much fun to get off and explore animals.  He left that all up to his big brother to enjoy his Ark.   It is a lovely petting zoo, tops anything I've ever seen here in the States.  It is so well done, and so pretty.   I wish it were closer to home we'd be regular visitors. 
Noah Petting a Rabbit for the first time
Noah standing to touch sheep
Noah was all smiles, he was having the time of his life.  We walked around and socialized with all the animals.  I think I seen the biggest pig of my life.  And I mean big - like horse big.   They have a really beautiful playground and on just the edge of it there were a patch of daffodils.  They picked a handful and let Noah hold them.  He put them in his hands and held on tight as we walked on together.   He beamed with pride.  He was so proud of himself I could feel it with his small steps that we took together.   I tried not to get teary, after all pictures were being taken and the last thing needed was a weepy mom, but the daffodils well that was about the part that put me into a waterfall, so I tried to refocus on Luke who was running happily up and down the playground to get my mind off the swelling joy that causes those mommy tears.
Noah at

We watched his little brother come down a slide - rather fast and plop on his bum only to get up and do it all over again, and play on the swing.  There was such freedom in that moment.  No wheelchair to move, no playground that wasn't handicapped accessible that we couldn't wheel Noah up to.  We were side by side.  

After Noah had his fun in the Upsee at The Ark, we took a brief break so I could do an interview about our experiences in the Upsee.  None of us knew that recorded interviews were in the plan, so looking back on the videos you kind of kick yourself like why didn't I bother to do my hair and make up that day and care about what I was wearing?  But in hindsight I guess it doesn't matter in the larger picture because what was recorded was real and raw, and that's all any of us can really hope to be.   Unscripted and allowing your heart to speak in the moment.   There is so much worth in just being honest and genuine, and maybe other parents could relate to me on a simple level - so much more so than if I had been groomed and dolled up for the event.  I am what I am, just as Noah is who he is.  And I keep telling my children you don't have to be perfect to radiate something beautiful.

And I have a lot of respect for Leckey for doing everything the way that they did.  No one was paid, no one was coached, no one was made promises, nothing was staged.  We all just existed as we were experiencing these wonderful things together.  At the heart of it all Leckey knew what mattered - family participation and being able to provide this gift to so many around the world.   The media attention came as a surprise to all of us, none of us had any idea that the Upsee would draw in such an audience.  At best I thought well maybe 500 people might check it out total when it first went up for sale.  I never thought we'd all find ourselves attached to news articles and news stories on television.   I expected it to be a lot like the GoTo Seat, a really amazing product that is so needed in our special needs community that would simply spread by word of mouth slowly.  And even with all the attention, the entire Leckey team, and even Debby Elnatan herself, remain so humble.  I admire their unwavering focus which is on bettering the lives of others.  Firefly products are going to make so many dreams come true.   Leckey really deserves all this publicity, they are moving mountains for children with special needs. 

Although I can honestly tell you there was no way to top The Ark, we did come close to celebrating all the joy at a restaurant called Deane's  Now you all know I loved Flame, but Deane's I think was my ultimate favorite!   Maybe it was the two French Martini's with Raspberry and Pinneapple... or the Crab with celeric mayo on toast... or the Royal Fish Pie... or Vanilla Panna Cotta with Pistaciso Caramel... or the after dinner coffee with cute biscuit...
French Martini

The best coffee I have ever tasted!  With a Biscuit!

Crab with celeric mayo on toast
Luke asleep after dinner

Noah was as equally in love with Deane's, and Luke well he had his fish and chips with mushy peas and fell asleep right there at dinner.   We kept ordering Noah scoop after scoop of ice cream - five total scoops that child ate after dinner! And our hosts were so lovely they indulged Noah in all his scoops.   I get all teary just writing this because they loved my Noah. And not just a fake, I tolerate you, special needs disability kind of thing.  Like they really loved my Noah.  They really loved all the children who were there.  They meant every bit of kindness, every loving gesture, every beautiful word.   And it felt so good.  We were so overdue for some unconditional love from strangers.  You all know I write about how rough our lives can be.  And for a moment as a family, we were as close to heaven on earth as you can get.  The inventor of the Upsee held and lifted a sleepy Luke for me,  held Noah's hand, spoke to him like a real person who understood everything.  I was living a dream.   It all felt like we had found family.   We may not have been able to buy a lot of souvenirs, but what we did bring back with us was the love we experienced.  And that feeling is something money can't buy.

I found unconditional love in Ireland and new friendships that mean the world to me. 


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

Thursday, April 3, 2014

The Firefly Garden: Where Good Things Are Growing!

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You may have heard tid bits about something coming called the Firefly Garden.  What is the Firefly Garden you ask?  It's a place were love and hope grows.  The Firefly Garden is opening in about thirty days and will provide an amazing resource for parents who have children of special needs.   A platform designed to give you a voice, to provide you with inspiration, and a place to come when you need just a little help.

Top Secret things are currently growing in the garden.   But rest assured you will be just as excited to see them all sprout in the upcoming months as you are the GoTo Seat and Upsee.   The Firefly Team and those at Leckey have some amazing ideas to light up family participation on a whole new level than has ever existed before!

We spent a morning meeting with the creative minds behind the scenes, those who work tirelessly each day to bring new ideas that will be life changing to children with special needs.  We were able to see how an idea grew into a concept design, and how a concept design was modified, changed and improved upon in order to produce a final product. 

Where do the ideas start you might wonder?  Well they start with parents who need something for everyday life that doesn't yet exist for their child with special needs.  Leckey is there listening, creating demo products and conducting valuable research on how to bring ideas to life!

Our meetings took place in a room that was beautifully designed as the most beautiful garden you could imagine.  Lights, trees, little bears, little make believe fireflies in jars... butterflies on the ceiling and lots of green leaves.  And the most beautiful Firefly background logo, with the gentle sound of crickets and outdoor life.   You could feel the magic.   Most importantly it was sensory heaven for the children who attended.  All the children were so content and happy.  Face painting, balloons, laughter, warmth, love and hope in a room full of blossoming ideas. 
Firefly Screen

Firefly Meeting Room
Noah's balloons painted on his hand.  He enjoyed getting his first painting!

We had delicate sandwiches for lunch, hot teas and coffee, and pastries that beat anything you could ever find in the US.   The elevator to the building broke the day of our firefly fun.   The Leckey team was mortified hosting families with children in wheelchairs.  But there was lots of help there to carry wheelchairs up and down the stairs.  And they likely didn't realize that those types of challenges we have to deal with on a daily basis here in the States... stairs, no ramps, elevators that quit working, handicapped buttons that no longer work to open doors.  One time I remember having to go up the escalator with a wheelchair.  So, in the larger scheme of things, it wasn't terrible in our eyes at all.  At least we had a whole ton of loving hands to help us out, something we don't have back home.  We're on our own unless a stranger passing by takes pity on us and offers to lend us a helping hand!   And besides it is kind of like any big event, there has to be something that doesn't go as expected to add some extra fun and give you something you can look back at and laugh about later!   Remember when as the story follows...

I didn't want to leave the garden.  Felt so wonderful there.  Good memories happened in that garden that we'll carry with us forever as a family and Noah was so happy.

One of the most delightful things about a garden is the anticipation it provides

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