Monday, October 12, 2015

The NEW GoTo Seat Floor Sitter by Firefly‏

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Noah has been playing around with the new GoTo Seat Floor Sitter by Firefly.   It's given me a chance to test it out and see what this product is really all about.  Certainly, the world has been waiting for news of a new design after the first two models, and were anxiously awaiting new options and supports.   The new model has really three obvious new features.  Bigger and stronger lateral supports,  the option of two different headrests, and last but not least, an optional floor sitter base.   The question on everyone's mind is how does it stack up against the first two designs versions by Firefly?  And does it really have the supports required for children with low, to fluctuating tone, to extreme high tone, and will it suit children who are lacking in head, neck and overall trunk control? 
The Evolution of the GoTo Seat by Firefly
Noah, as many know, is a severely disabled child.  At just two months shy of his seventh birthday he is unable to sit, walk, talk, crawl or self-feed.  And without postural support and help can only lay and roll on the floor.   Noah also lacks independent head, neck and trunk control and requires generally the most extensive supports possible.   His tone has a tendency to fluctuate where he can be floppy to carry or hold, but is very strong when he gets excited, mad, or is attempting to accomplish a task you'll see such high tone that it often makes holding him very hard, as he can make his body hard, rigid and incredibly stiff which can throw a caregiver off balance if they aren't aware that he has such high tone tendencies.  
So is the new GoTo Seat Floor Sitter suitable for a child like Noah?  And the answer is hands down, yes.   The new GoTo Seat ranges in ages 1-3 for a size 1 and ages 3-8 for the size 2.  The size 1 can accommodate children in weight to about 33lbs (15kg) and the size 2 can accommodate children up to about 66lbs (30kg).  It has two headrest options.  One is a more "advanced" accessory which is a contoured design that cradles a child's head that has the need for more head support, and a "standard" headrest that is still supportive but is a little bit less plush.  The most noticeably new feature is the floor sitter base.  It is an additional optional accessory that can be ordered alongside the New GoTo Seat.   The sitter base retails for $100.  And the seat regardless of the headrest that you desire retails for $375 for the size 1 and $469 for the size 2.   Still making it a low to moderate priced piece of adaptive equipment and staying with Firefly's price point mission to be able to provide these products to families without insurance codes and eliminating third party distributors and DME's.  Shipping also continues to be FREE! And it comes with a 1 year warranty, and a 42 day return policy which makes the product really risk-free should it for any reason not be an excellent match for your child's needs. 
You can see a video of Noah in the New GoTo Seat Floor Sitter here:  (You can also watch a full frame on Youtube by clicking on the title of the video.)

The New GoTo Seat is a bit like the other two designs in which it can be mounted to a chair, to a child's wagon, play car, or any other seated flat surface.  It does have some new elements such as thicker and more supportive side laterals that I think offer a child a higher level of comfort.   The headrest designs have certainly improved and are more suited for a wide range of children and needs.  Even with Noah's lack of head control, I do not need to correct his head when he's using it.  Turn knobs allow for easy adjustments in the back.  I only had minor difficulty with a turn knob and that was the lateral knob.  If you turn it too far it has a short screw which causes you to fish for the connector which is in the seam of center of the fabric.  It's easy to get to, but you do have to work at it a little bit to get it back into place.  Something that isn't a significant problem, but something to be aware of in case you unscrew it too far and need to put it back together again like I did. 
I'm not big on instruction booklets.  I'm not big on instructions on general.  They stress me out.  Build-it-yourself furniture even makes my head want to explode.  But thankfully the GoTo Seat manual is easy to follow and has great pictures to follow along with for set up steps since I'm a person who likes to bypass reading and just likes visual demonstrations.  For those of you unlike me who love to read instructions, they are written clear and detailed.  The floor sitter piece looks a bit more intimidating on first glance than it really is.  And someone without an instruction booklet I'm confident could set it up fairly fast. 

Of course in true Firefly style it arrives in a really pretty box, which makes you feel like you just gifted your child with something super fun and playful.  A lot of people are probably going to ask me what do you wish that was different about the New GoTo Seat or how could it be better.  I'd say I am kind of missing a carry bag or storage bag for it.  I'd like to take it to Grandma's house but I'd have to find a bag or a trash bag to carry it in to keep it clean while traveling in the car or to and from various places.  A really minor wish, and I just happen to love bags that have the Firefly logo on it for transporting and storing equipment to keep it clean.  I'm still trying to decide if I'd ever want more of a recline than a 10 or 20 percent option, I think the two it has will work well for most children.

Originally I thought I'd be disappointed with the advanced headrest, but I'm pleasantly surprised for it not being a headrest that is aggressive like the i2i headrest I think the advanced headrest does incredibly well.  I haven't had to correct Noah's head position not once when he's used it.   I love the room for growth.  Noah is smaller as some children with neurological conditions can sometimes be, but it has great growth potential for children that are older and larger than Noah.  I'm not so certain that the size 2 would be a great match for a traditional grocery cart, the size 1 would fit well and easily.   Really the problem would be getting long legs of an older child into a grocery cart more than anything. 
I like how the bottom material is really durable, it's a strong vinyl type of black material that makes sure the product does not slip.  I am not sure how well it will hold up in the washer, but I think providing it didn't hit the dryer it may do just fine.  And honestly I'm not even a bit worried as Firefly makes durable products and everything I have laundered so far has done really well.
Noah hanging out watching TV
Most importantly Noah seems to love it and thoroughly enjoys being in it.  We often leave it on the floor sitter base in the living room and he'll roll to it signaling he wishes to be put into it.  And that's really the most important part.  Us parents can sit back and sometimes review a piece of equipment but in the end how does our child really do in it?  And are they happy, comfortable and enjoying it.  And all of those factors get good check marks from Noah.  Overall, I think families and children will be pleased with the product.  Out of all three GoTo designs this one is my favorite.

I can still see a many children benefiting from this new design and I think it will make so many children with special needs incredibly happy this holiday season.  So make sure you tell family and friends this one should be on your wishlist. I have a feeling this new design will promote even more family participation opportunities and I can't wait for new fun floor activities to continue in the days ahead for Noah.   To learn more about the NEW GoTo Seat by Firefly click here.

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

Wednesday, September 30, 2015

How It Should Have Been

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Most times I'm able to live in the present - meaning I get up and see Noah and our lives with him for what it is, and how it is.  I breathe in the beauty of it, and exhale the pain all at the same time.  Nearly seven years later after Noah's catastrophic birth injury, I cope and manage in all the same ways that most parents do when they have been dealt this type of life altering hand.  But occasionally, there is that moment when you see something that triggers a that glimpse into how your live would have been... how it could have been, how it should have been with better labor and delivery care.   That's the hard part, because Noah's life had the chance to be very different.  This didn't have to happen to him.  And like thousands of other babies who suffer the same outcome, it didn't have to happen to them either.  

I was in a store parking lot, on the phone but put on hold dealing with the bank because they reported my card as stolen by mistake which left me with no form of payment for my purchase until they reversed and corrected their error.  While on hold, clearly annoyed that the bank left me in a pickle when by reporting my card stolen when I was holding it my hands I seen a family walking across the parking lot.  Hand in hand, and two boys that resembled the ages of Noah and Luke.  I think it was the walking holding hands part that got me the most - no, I know it was that part.  Sure I can hold Noah's hand in his wheelchair, but not side by side walking, I'm pushing from behind.   It isn't how this was supposed to go, we should be just like that family holding hands walking side by side into a store - together.   Noah should be talking and running, playing and learning to ride a bike without training wheels.  All these things.  All these precious things that were stolen from him. 

Suddenly the bank reporting my card stolen didn't matter so much - although someone did come back on the on the line and did indeed fix it.  Perhaps maybe it was God's way of putting things in perspective so I shifted my focus from being so annoyed.  In recent times I've been going back to that place in time a lot - Noah's birth and the events that proceeded afterwards in relation to assisting with future news and video publications surrounding the issues of what families face when it comes to pursuing the causation and root of an underlying medical injury.  I always go back to it on my own anyway periodically even when I'm not openly discussing everything with others -  it's just been necessary to do it a bit more frequently than usual I suppose. 

And I recognize to a large degree I will never in my lifetime possess the truth about Noah's birth.  Haunting still that I have no memory of the moment he was born.  And I do try.  I try often, to fight remembrance despite anesthesia.  And I have no one to tell me even, since Noah's daddy was barred by the hospital from being with me during delivery.  All I have is this dream of those two children in Eskimo hooded snowsuits making snow angels side by side.  Just a dream.  The only thing I can remember about being asleep. My soul feels like I'm missing time.  I don't know if that's how everyone feels or not that has undergone surgery, or if it's just me because I associate a traumatic experience along with it.  But, it's is a sad thing not to have a memory of the moment your first child was born, you can't help but want to remember.   I wish that something could recover that lost time, I'd likely even try hypnotism if I thought it could work.  I want to know so badly.

A journalist recently asked me the question "where do you go from here."  I don't know that I even gave the best answer to that.  In some ways you're a bit stuck in this place of not knowing.  I'd like to believe that there will always be a greater purpose for my pain, and that the only thing left now is to help others so they don't have to follow in my footsteps.  To make things better for those who inevitably will come after me, new babies, new moms and dads, new tragedies unfolding.  Some of the best advocates I've ever known have risen from a place of great despair and crushing heartache and grief, and I really should be no exception to that.   Strong mentors and spiritual guides have also learned lessons to pass onto others by the roads and paths life has given them.  Exposure of the truth has the potential to open doors to change with this discussion and exposing how families are treated when there is an adverse medical outcome.  Noah's story deserves to be told.  And I'm so grateful that someone wants to acknowledge and shed light on what happened to us and what we underwent was real. 

Will it all ever stop me from every now and again seeing a picture of how it should have been?  Probably not.  But, maybe my voice will someday help another mom from ever having to sit in a parking lot staring at a picture of what she believed her family's life would be like.


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

Tuesday, September 22, 2015

Your Wings Were Ready, But My Heart Was Not...

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In the early morning of September 18, 2015, my dearest Aunt Rhonda was called home to heaven.  Although she had been fighting an fierce battle with cancer for some time, it certainly never feels quite real.  I think it may be a tendency to be a coping mechanism that many of us do - that it just can't be that bad, that things will turn around and get better.  But it didn't get better, and in the end without a question of a doubt there was a sad suffering that can only be released with being called home to Heaven.   Our Auntie Rhonda was quite special. I don't think she had a wicked bone in her body.  In fact I often questioned and admired how she found ways to offer instant forgiveness for those who would trespass against her, and had one of the biggest hearts I know. 

More than anything I adored how she related to my sweet Noah.  Never once did she ever look at him as if he were less, or a child with a disability. Her eyes only  seen a child that needed just a little bit of extra love and care.  She never was shy about holding him, as awkward as his movements were, and how flopping and rigid he could make his body at any given moment, or his tendency to change his attitude from minute to minute early on in his babyhood, never once did she have an unfavorable thought or feeling in her heart when it came to Noah.  A true testament to her incredible character. 

She also was an incredible shopper with great taste.  Next to my Nana she could find some of the cutest cocktail dresses with no place to go.  She'd scoop them up on clearance and invent a place to wear them to.  The life of the party, with a touch of sparkle and glitter. 

Today her funeral services are being held. It was it was a bit hard to realize that being in attendance for her visitation and services would be an impossibility.   Planning a trip out of state takes weeks sometimes months with Noah, and we come with lots of travel complications; a handicapped accessible van which can be upwards of $200 daily to rent, airfare for four, a place to stay that has adequate sleeping accommodations and safety features that mimic his hospital bed that he has at home, food - and a way to blend Noah's meals.  Not an easy feat at all in three days.  I know that she'd understand, she always did.  But, in the end you always wish and hope that you're able to be there for those who loved you in life to honor their memory. 

I am comforted that her funeral arrangements are everything she would have hoped and dreamed them to be.  Pictures of her casket are exactly what she would have wanted and I'm thankful that her life insurance policy can assist her with such a proper service.  She talked about this day often in recent times, knowing that eventually this time would come.  Although sometimes uncomfortable for those around her and speaking to her, she was quite comfortable with making it known what her wishes were.

However, it did feel inadequate that all I could do is provide a simple blue flower arrangement.  There are so many parts to special needs parenting that are really difficult, one of which is your ability to fulfill what is in your heart, because financially it's all you can do just to try to keep up with out of pocket medical, therapy and equipment costs which can sink the strongest of ships.  Special needs life tends to just complicate a lot of things. Yet, I find solace in that there isn't a more loving person to help watch over Noah from up above.

When my cousin passed away in a tragic car accident years ago and she called and left me with a message with that crying scream of pain I knew her heart would always have a wound that wouldn't heal.  I sent her this plaque of a poem called the Broken Chain to comfort her during that time.  It read:

"We little knew that morning that God was going to call your name. In life we loved you dearly. In death we do the same. It broke our hearts to lose you, you did not go alone; for part of us went with you, the day God called you home. You left us peaceful memories, your love is still our guide; and though we cannot see you, you are always at our side. Our family chain is broken and nothing seems the same, but as God calls us one by one, the chain will link again."
The chain will link again.  My soul feels certain of it. 
In loving memory of Rhonda Koster


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

Wednesday, September 16, 2015

Birdies & Butterflies 2015

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I always feel so honored when people that have become a big part of Noah's life invite us to events.  And I am so grateful for the opportunity to give those who gave so much love to him and our family a hug in real life.  I was especially excited to meet the Sterner family at their sponsored charity event this year called Birdies and Butterflies.  The Butterfly Fund is not only a foundation that has welcomed Noah with loving and open arms, but their mission is one that is close to my heart as they embrace so many children to help in the special needs community .  It takes a very special person to see a child with a really scary diagnosis, with severe disabilities, and many children that are critically ill and fighting the biggest fight of their lives each day and say I'm going to go the distance for that sweet child and make a big impact in their life.  And that's exactly what The Butterfly Fund does.   But these foundations can't do it alone, it takes a collection of loving hearts and gifts of kindness to financially fuel the lives that The Butterfly Fund can touch and reach. 

Birdies and Butterflies is a yearly golf tournament with a dinner party, awards, silent auction, prizes, putting competition hosted by Madison & Company Properties at the Blackstone Country Club.  Although a tad bit of a drive from home, it was worth every single mile to get there.  You come to the Country Club really at the end of E-470, it sits on a hill overlooking waves of land and newly built homes in the distance.  It's certainly a majestic Club House with lots of fine touches and features.   Noah found a sense of calm as we all sat together enjoying each other's company out on the massive patio deck.  The weather was perfect, a light breeze with a comfortable warmth.  It was the perfect weather for soothing one's soul.  Peaceful and to be in the presence of others - parents and children on the special needs journey and the special family who brought all of us together.  

You always feel this instant amazing connection with other families who know what this feels like to worry about a child that is as medically fragile as a Butterfly.  You can see it in their eyes, you feel it in their smile, and the way they hug to embrace you in an unspoken blanket of comfort and understanding.  It doesn't even matter that our children have a differing diagnosis because we share that universal understanding of just how hard and beautiful this all is. 

The Sterner family - they are remarkable - all of them - right down to little Mia their granddaughter.  She is pure heaven and magic.  A child that is so incredibly tender and loving, I just wanted to bring her home with me.  A family that has devoted so much of their time, talents, love and kindness to move mountains for children and families whom they've never even had a chance to meet.  They are so rare that when you find someone like that on the special needs journey they are like this bright shiny diamond that glitters in all things golden.  Their hearts and intentions are so pure and true.  They are remarkable people.  I could only hope one day to be able to touch lives in the way that they do.  

Noah had the very best time, especially during the auction when he really wanted to participate and raise his hands increasing the bid.  Silly boy - had they honestly counted his waves we would have needed to take out out a second mortgage to bring home all that he was bidding on!  It was truly a funny moment.  Noah clearly has an agenda.  The only thing he declined to bid on was a Manning Bronco's Jersey, which was surprising given he typically loves football.  He must have overheard his dad's big desires at the silent auction items as he drooled past every Avalanche item that was there, as that seemed to be what most interested Noah in the bidding wars. 

A very special surprise and gift however came at the end of the dinner party when Noah's daddy was gifted in the auction with a hockey stick signed by Adam Foote from the Avalanche and a signed hockey puck from
Gabriel Landeskog with opening day tickets.   I haven't seen Noah's daddy be that happy in a very long time.   It was such a beautiful moment, and something so incredibly special and unexpected.  Christmas came early for Noah's daddy.  I don't think he'll ever ask Santa for anything ever again!  

The most rewarding moment of the evening though was spending time with other families and children.  Even though my life is better because Noah is in it, I still feel this huge blessing each time I get to meet another little child with special needs.   The Butterfly Fund does an amazing job of bringing awareness to a disease called Epidermolysis Bullosa - also known
as EB.  I first learned of EB some years ago when my life was touched by the story of a little boy with EB named Tripp.  He was the one who led me to find the work The Butterfly Fund was doing for children with special needs.   Before learning of Tripp's story I had very little knowledge of EB.  It is a lot like Cerebral Palsy in that it comes in different forms and degrees of severity.  However, all of it scary and has the potential to be life-threatening with infections and often secondary conditions that accompany EB's primary diagnosis. 

But it's the spirit in these little bodies.  Have you ever met someone that your soul feels so drawn to?  Someone that you can feel radiates this beautiful energy just by sharing a room with them? I had the pleasure of meeting William who has a very aggressive form of EB.  The event was held in his honor and he is such a precious little boy.  He's very smart and wise beyond his young years.  Having a conversation with him felt like I was opening a gift of wisdom.  He was teaching me, as I'm sure he teaches so many that are blessed enough to have the pleasure to meet him.  A child that has every right to complain about his pain and bodily challenges yet smiles brightly.  And out there on the green you could see him putting and golfing with delight.  He also has the most amazing family.  In fact I adored them.  A tight knit family sticking together and there for each other doing all they can for this little boy.  I wish Noah had that kind of extended family support and care.  It's a really necessary thing when you have a child that is so medically fragile to have as many loving hands and hearts on deck at all times.   William lives in San Antonio, so I'm really hoping that someday that if we can make it back there to visit Morgan's Wonderland which is our big goal and dream that I'll be able to see William and his family again.  You can watch a video about William by clicking here

William painted a very special painting of a "Special Needs Elephant" to be auctioned off.  It made it to a $2,000 bid, but in my mind it was really a priceless piece.  I loved William's explanation of what made his Elephant Special.  You see it was a painting of an African Elephant typically known to be very aggressive in nature, but this Elephant had a demeanor much like that of a kind Asian Elephant which was easy going.  So that is what made it special.   

Please if you have a moment to spare, I wish that you'd pray for a cure for EB, and if you have a chance please show The Butterfly Fund your support.  They are working to help from a great place of love and donations assist them in helping so many children.  To learn more about the The Butterfly Fund and to donate click here.


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

Wednesday, September 9, 2015

Failure to Appear

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Last Wednesday was Noah's appeal hearing regarding his anti-suffocation pillowcases for his anti-suffocation pillows (which the State approved).  I called in when scheduled only to be told that the Court was having difficulties trying to reach someone at the State to participate in the hearing.  They certainly were aware of it, as they received written notification by mail, a notice from the Court and we had a verbal discussion about it in August during a meeting with the State on various issues and concerns.  So, I was rather surprised that they didn't make an effort to participate in the hearing.  I was worried the Judge would postpone since they could not be reached and failed to appear for the hearing.  But he took my testimony and asked me a handful of questions for clarification on the issue. 

One might think maybe that will be in my favor since the State decided not to even appear, much less file anything to explain their denial, but the Judge was still very clear that if the State provided a reasonable explanation for their failure to appear he could potentially entertain hearing their side.  Part of me wonders if the State didn't even bother because they figure they'll just file an Exception to Initial Decision - just like they did with Noah's Krabat Pilot win last year and overturn anything a Judge does anyway.  Maybe this is their way of snubbing their nose at the system because they know they have the final say regardless of what a Judge thinks.  It's really hard to second guess their intentions. 

It's an exhausting dance that I do with them.  And just when you think you've seen it all they do something else that blows my mind - like not even bothering to show up for a Court issued hearing.  Yet, there I was on time and ready to do battle, even with a very sick Noah that I was trying to care for at the same time, while attending a Court hearing by phone on his behalf.  Without complaint I managed to juggle all things at the same time - behind the scenes without anyone even knowing the heavy load of my day. 

And I've been really worried about Noah's health.  He's been sick frequently since May, with this last time being the worst.  And it doesn't take him long to get to a bad place - it's totally different than when his little brother gets sick.  So I'm sure I wasn't as sharp I as I could have been for the Judge had my mind not been racing about Noah and his dangerous sounding cough.  Still I think, I offered the clearest picture I could, and had a decent detailed strong Motion behind me, with exhibits that I think painted a good picture of the issue, something the Judge admitted he wasn't used to seeing.  But, with my legal background it's the only way I know to present an issue to a Court of Law.   I'm sure most parents just write letters - which works too.  Do whatever it takes just don't let the State steamroll over your child's rights.

The State is forcing my hand to continually appeal just about everything these days.  Yet they aren't penalized not one bit for brushing these things off like it's nothing.  I received Noah's formal denial for sensory clothing - or at least that's what we'll call it.  I suppose categorically it could be labeled adaptive clothing - in my mind it's the same thing.  Although it would have sensory benefit, it also would help with Noah's skin condition, which is easy to document in pictures and in his letter of medically necessity (which the State reminded me means nothing.)  I think still what unnerves me the most is that I had approval for many months with simply with unreasonable discussions on how the State wanted to go about that approval (i.e. me send them a check for my unspecified portion and a 50/50 proposal) when I knew for a fact that wasn't in the guidelines, and then when I spoke up and challenged them on that issue, the TRUTH struck a nerve with them and they decided to deny it as a penalty to me. 

And you just can't do that.  You can't approve something for months and then turn around and deny it.  That is a tremendous abuse of power.  Yet, I still need to work on filing an appeal for that too - something I'm dreading knowing the time it takes me to accomplish.

Today I learned that families that were being able to utilize benefits that Noah was denied, were terminated from those services.  Likely because I brought it to the State's attention that what they were doing was unfair if they weren't equally offering benefits to all like Noah across the board.  I still take issue with it, as they are still allowing some parents to utilize certain benefits but only if they are LESS physically disabled than Noah is.  Children with Autism and Aspergers for instance have often greater access to other benefits where children like Noah who are severely handicapped are denied under the exact same waiver.  A waiver that is currently designed to be universal across the board regardless of diagnosis. 

It feels very much like your hands are tied behind your back though - I see the problems - I can tell everyone about them, shout it from the rooftops in fact yet I lack any ability to change it, fix it or make it fair for all children on the CES waiver.  Some parents are blind to them - some don't care, and some much like me don't know what to do.   I can't even do a good job for Noah anymore since I've become so outspoken Noah is now suffering the consequences of me being a strong advocate.  A fear that many parents have so they hesitate to ever participate in questionnaires that could lead to their identity, or speak up publicly about problems, or even write about issues or orally discuss problems.  Because they know if they do their child could easily be targeted for even more denials than they already are.   I'm proof of that. 

Someone asked me if I wished that I had just stayed quietly on the sidelines and sucked it up, and not made waves with the State.  But I think if you don't stand for what is right then what is the purpose of all the
"Be sure you put your feet in the right place, then stand firm."


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

Tuesday, August 25, 2015

Love From Amy's Kitchen

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Years ago when we realized that Noah would have a continual struggle with being  able to eat solid foods we searched out ways that we could make his diet the healthiest that we could to give his brain all the best we could to aid in his continued recovery.  Doctors, dietitians and nutritionists recommended we avoid foods that had artificial dyes, colors, preservatives and ingredients and focus on whole foods that were organic and minimally processed, rich in high naturally occurring fats like whole coconut milk and avocados.  Noah's diet isn't cheap.  His dietary supplements and foods range from Great Lakes Unflavored Gelatin, Nutritional Yeast, Whole Fat Coconut Milk, organic drinks like Organic Valley Fuel, Orgain and Enu - and products insurance won't fund like Real Food Blend's Coconut Calorie Booster.  And these are in addition to the organic baby food pouches that we're still forced to buy when we don't have access to Noah's Vitamix blender - when traveling or at a outdoor summer event during the day - like the zoo.

But we have benefited greatly from a organic line called Amy's Kitchen.  In a pinch if I didn't have time to cook Noah an organic, wholesome meal - I could rely on a frozen Amy's meal or product to blend for Noah.  It's what we blend for him if we are dinning out at a restaurant as a family because restaurants don't blend foods for Noah.  So we have to blend them from home and take his food in a thermos to our destination.  When we heard that Amy's opened up the very first organic drive thru restaurant in California this summer we were so excited because we have great hopes that Amy's will spread like wildfire and that we'll have them here in Colorado soon too.  I'm rather dependent on drive thrus - especially during winter months when unloading a wheelchair in bad weather isn't favorable, and Noah if he gets out of the car at any food establishment he expects to eat - I can't just go in pick it up and load him back up - he'd pitch a huge screaming fit.  So a organic drive thru sounds like music to my ears.

I had inquired with Amy's on the intent for their drive thru restaurant plans in our state, and explained Noah's great love of Amy's, and they sent him the sweetest little food care package in the mail.  Goodies of all kinds, a shirt that is so adorable, candy bars (that I didn't even know they had!), cute magnets and pins, and some canned soups which will be wonderful for fall and winter meals for him, and some coupons for frozen meals - which will be so super as he could eat the Pesto Tortillini all day long and never get bored.  And Luke always must have a stock of Amy's Cheese Pizza Snacks (his primary lunch request.)  And Amy's makes the very best macaroni and cheese! It was the sweetest gift for Noah ever.  And he's been enjoying all his goodies.

I was even lucky enough to run into a representative at Vitamin Cottage who gave Luke a magnet and said they hope to put in an Amy's drive thru in a few years.  Unfortunately it sounds like they'll build it in Boulder first, which would be a 25-30 minute drive from us one way, but I still have my fingers and toes crossed that Amy's will be everywhere with a little time.  I have a feeling it's going to gain in popularity by leaps and bounds. 

Amy's is such a lovely company that is really true to their values and commitment to customers.  We got to sample some new products in Noah's gift basket - they have the very best Biscotti I have ever tasted.  Sometimes Biscotti can be super hard and crunchy.  So much so it requires a cup of coffee to dip it in just to even chew it.  But Amy's is flaky and light and has just the right amount of orange in it and is perfectly paired with a nice cup of tea and will be great for the cool fall days ahead.  They also make a chocolate version which I can't wait to find.  And bonus they are also gluten free!  Which we are experimenting with for Noah and have found reducing gluten for Noah has made a little bit of difference with skin rashes and overall moods.  Metabolizing peptides found in gluten can cause problems for medically fragile children and those with Autism because these proteins fail to break down properly for their particular brain chemistry. 

Amy's also is now making a line of organic non-dairy frozen deserts using coconut milks.  Which I hope to also be able to find in stores soon for Noah.  He is a child that certainly enjoys his sweet treats several times a day.  You'd think the child would be overweight with the volume he eats, but he moves so frequently he burns it off faster than he can pack it on.  We hope to put grocery store gift cards on Noah's wishlist so he can stock up on Amy's for the winter!

There are lots of children like Noah that are forced to be on specialized diets to give their brain the optimum potential to thrive, recover and build new pathways.  Diet is a big neurological consideration and component when you have a child with special needs.  And everything about Amy's is simply a superb recipe for good health and good food.  A big thanks to Amy's for caring so much, and sending Noah love.  


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

Monday, August 24, 2015

The Noah Mobile

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A year ago we were forced to find a way to take on a very large and difficult loan to obtain a handicapped accessible vehicle for Noah.  We were unable to find any help - donations and fundraisers were unsuccessful. But we were at a point where we couldn't get any of Noah's equipment in a vehicle and he is almost 7 and getting heavy to lift in and out of a car seat.  We were falling with him getting out of the car injuring him and ourselves, and maneuvering spastic stiff legs and arms out of a small car seat, and trying to get Noah to duck his head in and out each time was just proving to be too much for us.   It's just a fact of life that all families face when you have a child or family in a wheelchair.  You only have a little window of time to figure out transportation difficulties.

We purchased a used Dodge Grand Caravan with a manual ramp, and a jumper seat since Luke is still in a car seat.  The manual ramp and high miles knocked down the price a tad, but not enough to get it under $40,000.  It was the best we could do under the circumstances.  We decided to work through a car broker to assist us with the process as dealing with car dealerships directly is its own challenging process.  And I found myself with little patience for the sticker price tag game.  And dealerships are great about showing you things and making you fall in love with them and then slamming you with a purchase price that you can't reach.  Using a broker was just easier for me to negotiate the terms - and in helping us find a lender which was no easy feat.   When you have a child like Noah your debt to income ratio - is a joke.   But these are our truths, and I'm not ashamed to talk about them.   It's as honest, and real as I can be about it.  This is the reality for most families in the same position we are.   There were far more lenders that turned us down and only one that was willing to extend us a loan - and in which case there are conditions like higher interest rates and long-term loans.  And our monthly payment is like paying half of a mortgage.

But by the grace of God, we found a way to drive it home.  A year later the ripple effects of such a financial purchase still is proving to be difficult.  It has meant at times that we've had to seek help with groceries and necessities and that we've had to quit many of Noah's out of pocket therapies that we can no longer financially afford.  When you are between a rock and a hard place you just do what you have to do.  It's not a perfect solution by any means.  But we just keep putting one foot in front of the other.

I had a sweet lady at a store tell me the other day that she feels that she's become a better person for knowing me and me sharing Noah's story a little bit each time that I come in.  That I've changed her and that I've given her inspiration through my positivity in light of the continual hardships that this journey throws my way.  And that in itself was a gift, to know that you can shine this bright light for others and be as happy as one can be despite the struggles.  I suppose that's all that I can hope for is that I can be an example of how to keep on going - no matter what life throws my way.   My mother must feel the same way as she shares the story of Job with me often likely as a reminder for me not to lose my faith during this hard journey.

For those of you who aren't familiar with Job in the Bible:
"Job is presented as a good and prosperous family man who is beset with horrendous disasters that take away all that he holds dear, including his offspring, his health, and his property. He struggles to understand his situation and begins a search for the answers to his difficulties. Despite his difficult circumstances, he did not curse God, but rather cursed the day of his birth. And although he anguished over his plight, he stopped short of accusing God of injustice."

We decided it was time to fully celebrate Noah's ride.  We had a lovely lady named Melissa that we met this summer who made magnets for Noah's vehicle, and the back has two magnet signs so first responders can recognize that we have a child with special needs in the vehicle in the event of an emergency.  We are grateful and humbly blessed that we were able to be able to obtain this vehicle for Noah - no matter how difficult it is.

He performs wonders that cannot be fathomed
, miracles that cannot be counted. Job 5:9


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