Thursday, February 27, 2014

Celebrating Koala

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After many months of anticipation, a cancelled appointment due to weather conditions and a rescheduled appointment, Noah finally had his independent wheelchair evaluation the first week in February.  I admit I had butterflies in the pit of my stomach for the early morning hours.  This journey often feels like it's always an uphill battle no matter what aspect you are facing.  And in many respects I often feel like I am always waiting for the other shoe to drop.  Another hurdle, another roadblock, a challenge I have to find a way to overcome. 

I guarded my feelings, hoping for the best but quite honestly expecting the worst.  And I don't mean that to sound pessimistic.  We've been through so much as a family and continue to face tremendous challenges when it comes to helping Noah, that you try to protect yourself from the utter disappointment that sends you spiraling into a ball of heaping tears when no one wants to help your child or believe in all things possible.

In a lot of ways I think we've been really unlucky with some people that have come our way - and part of it is a learning experience and getting your footing with the system, with the people within that system, and finding a team of people who have an interest in your child's success and life - just beyond a paycheck.  

When we arrived, I was so relieved to see Noah's speech therapist, who out of the kindness of her heart attended the appointment with us to offer great feedback and suggestions on Noah's needs and to explore the possibility of mounting options for Noah's Tobii eye gaze communication device.   We were quickly met by the equipment vendor representative, and the independent evaluator.  

As soon as questions like "what do you hope to accomplish today" was asked, I thought well expect to be told that Noah isn't going to get a recommendation for a power wheelchair...

But to the contrary, I found that the independent evaluator was simply being a very detailed listener, feeling me out as a parent, and Noah as a child.  Understandably, I think there are some parents that are so desperate for their child to meet milestones and find progress and recovery that they can often times push a child beyond their limits, while other parents, like myself adopt the philosophy that all things are possible... but in what we call "Noah time" - it's when he's ready and not a moment before.  We are simply just the vehicle to allow Noah opportunities when he decides he's ready to accomplish something new in his life.   Neither approaches are wrong, but simply a matter of different parenting styles, which exist within both the special needs community and those parenting typical children.   In any event, I felt the evaluator wanted to know which style we more closely adopted  in order to know how to pursue the best independent power wheelchair options for Noah. 

I was rather distracted at this power wheelchair evaluation which left me feeling a little uneasy because I couldn't properly focus on Noah's performance and how he was doing opposed to the other trial attempts he did previously with a different agency that resulted in a rude therapist denial.  There was an elderly lady in a power wheelchair rather desperate to have a conversation with me about her twin grandchildren who were born with severe disabilities, and she wanted to compare Noah's age relative to his disabilities in hopes it would give her an indication of what to expect with her own grandchildren.   But cerebral palsy is a tricky thing like that.  It comes with a wide range of outcomes and prognosis.  And then there was Luke - into everything he could be and chasing him around here and there.   I had to just hope that Noah was demonstrating what I knew he was capable of doing and what he had seen him do many times before.  

I held my breath, still rather waiting for the tremendous let-down.  We've suffered so many negative blows that you come to expect poor news before the good news.  I don't think I believed it until the speech therapist repeated the recommendation the independent evaluator gave and they brought in the model of power wheelchair that Noah would be receiving.   It was one of those please pinch me I'm dreaming moments.  I knew Noah deserved this chance, I know he is capable of driving - it was just a matter of getting someone to see that. 

For the first time I think maybe ever, this evaluator confirmed what I always knew to be true.  Noah is cognitively very bright, that he craves to learn as he understands his surroundings and has the concept of cause and effect - that he is simply locked in a body that has many challenges. 

Noah will likely stop and go by using the sides of his heads, and at this time it looks like he will turn left and right by using his knees.  This of course could change with Noah's continued progress with all of his therapies and with age.  He has althetoid movements which he may learn to gain better control of as he gets a little older with more help.  And then he very well may be capable of driving with hand controls, turning or stopping with another method. 

Noah will be getting the Koala Power Wheelchair and it will be used in conjunction with his Custom Aspen Seating System.   Although Noah now has the therapist and doctor recommendation needed to move forward, we now await the Medicaid funding approval process, which unfortunately and inevitably takes time.  Our hopes are that Noah will have a power wheelchair by late summer early fall at the latest.  And we must also pray that there are no elements to the request that will result in a Medicaid denial and appeal.  

I couldn't be more proud of Noah and more glad that we sought a second opinion.  And, I think we really found someone who genuinely took an interest in Noah's needs.  I look forward to having this evaluator help us in the future with Noah.  Her expertise and knowledge are tremendous and I'm thankful that prayers were answered.


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

Tuesday, February 18, 2014

Menu of Love

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When you have a child with special needs you find yourself celebrating date-night events like Valentine's Day in the comfort of your own home.  Long gone are the days of reservations, fighting crowds, and late evening meals.   You learn to accept that it is just part of your "new normal." Our Valentine's Day now is simply exchanging a handful of chocolates and a card.  This year however, we received an extra romantic treat - an unexpected blessing of kindness.

Zolo's Southwestern Grill, the restaurant that provided special needs families like ours with Thanksgiving dinners periodically posts new menus that they are featuring.  This year they posted a Valentine's Menu a Four Course Meal, that looked like a dream come true for your taste buds.  I imagined ourselves dinning on that menu, and thought well it's nice to dream. 

Much to our surprise, Zolo's made their four course Valentine's meal and delivered it to our door - knowing that we couldn't dine out with Noah on Valentine's Day.   Carefully packaged boxes and detailed labeled containers arrived in a bag from one of the sweet managers of Zolo's.   On each course there was instructions on how to cook, serve and combine all the elements to make this five star meal in the comfort of our own home. 

It was the best Valentine's Dinner I have ever had in my life.   My husband and two little loves at the dinner table.  And our very special meal - a menu full of love.   Our first course was Jumbo Lump Crab and Black Bean Cakes with chipolte aioli, avocado, and sprout salad.  I carefully seared each crab cake and served it with it's garnish, it looked almost too beautiful to eat.   The crab meat was so delicate and tender, and the sauce was just enough to compliment this bed of super greens.

The second course was Roasted Acorn Squash & Cascabel Chile Bisque with crispy pork belly, grilled meyer lemon creama and pepita dust.  I carefully poured it into two bowls, I expected a big splash of spice, but the soup was smooth with a the crunch from the crispy pork belly, with this light lemon cream and a dash of seasoning.  Likely a contender for the most delectable soup I have ever tasted.

Our third course was Red Chili Braised Lamb Shank with creamy blue corn grits, grilled broccoli raba, and horseradish gremolata.  The lamb shank was truly a beautiful work of art.  I hadn't had lamb likely since before Noah's birth, so I was anxious to try the lamb.  The braising sauce was a magnificent compliment to the grilled broccoli raba. The meat was so tender and fall of the bone and only needed a brief heating in the oven, This was likely my most favorite course of all.  I almost didn't want to share with my Valentine!   Usually I've found grits to be a bit boring, but these grits were heavenly.  In fact I was so bummed when they ran out.  I would have gone for seconds!  We also were treated to chicken enchiladas with red and green sauce with a salsa and sour cream topping.  We shared that with little Luke who quickly gobbled up one entire enchilada!

Our fourth and final course was New Mexican Chile Cheesecake with kumquat marmalade and white chocolate crunch.   The cheesecake was meltable soft, with slices of kumquat offering a sweet-like syrup with each bite.  The white chocolate crunch offering the texture of a light crust.   The perfect desert to compliment the end of the meal.

I cannot begin to even remember the last time that we ate something so fancy.  Zolo's offered us such a little slice of heaven in our own home, and helped us carve some special memories this Valentine's Day.   One person's kindness and love is really a powerful thing.   They made our Valentine's Day extra special.  Gratitude, like love, lives and grows in our hearts.  Zolo's Southwestern Grill brought joy to our day, warmth to our lives, and happiness to our hearts. 


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

Sunday, February 16, 2014

Noah's Squeeze Station

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Noah has always loved food.  I had anticipated that like most babies, Noah would have learned to graduate from soft foods to solids, however that transition hasn't yet happened.  Which is common for many children with special needs.  I've noticed lately Noah getting a little bored with commercial baby food lines.  Some of the combinations are odd, and if you taste them you often wonder why babies even eat it!   Noah loves his meals pureed in the Vitamix, but three times daily is a lot of work.  So I have started making his meals each weekend in a new little gadget called the Infantino Fresh Squeezed Squeeze Station.  It retails for $24.99 and although the bags are not refillable, the pouches run $16 for a pack of 50.   I'm able to freeze them or store them in the refrigerator.  It's really simple to use, washes easily, and is fast and convenient. 

Infantino Fresh Squeezed Squeeze Station

Noah's Chicken Pot Pie

Noah's Sweet Potato, Corn & Apple

Noah's Banana, Mango, Blood Orange & Sweet Potato

I love that I can taste his meals to make sure they have the right amount of everything that his taste buds will enjoy.  At age 5 Noah, like most children has developed flavor preferences.  He's not a big fan of beef.  Chick-Fil-A is his favorite fast food, and pears are terrible.  You give him a cheesecake he'll be your best friend for life.  He won't drink chocolate drinks, but adores chocolate pudding. He thinks anything with red sauce is disgusting but will inhale pastas with alfredo sauce.   His favorite Pediasure is banana flavored.  How do I know all this when I have a non-verbal child?  Well, all you have to do is watch his facial expressions and he'll tell you if something is just nasty or if it's the best thing he's put in his mouth... he'll also spit out what he doesn't like or hold his lips shut in protest.  He is very good at telling you what he likes to eat and what he hates to eat. 

The really great thing about making your own food pouches is that you get to control the calories.  For children like Noah they burn a lot of calories because of their constant movement.  Most commercial baby food pouches range from 60-100 calories per every 4 ounce pouch/container.  You could easily add some extra things to these pouches to increase calories.   And the really fun part is you can make your own desert line!  You will rarely find deserts in baby food pouches at the store.  But you feel like make puddings, or making a chocolate cake puree!  You can do it!

They also make these really cool toppers for baby food pouches that teach a child to suck a baby food pouch by the same method that a child would use to drink from a bottle.  Something we are also working on with Noah.  They are called Pouchpop Toppers.  They screw on to the top of a baby food pouch and it allows the child to learn to suck through it like they would a bottle.   We didn't have a lot of success with the typical honey bear straw, but this just might work as I can hear Noah sucking air sometimes through a straw.  And he's able to close his mouth to do so, with anything it just takes time and patience - but we'll get there.  Slowly but surely. 
PouchPop Toppers

The Two Most Powerful Warriors are Patience & Time


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

Thursday, February 13, 2014

Just Because It's FREE!

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I seen this news article that is circulating today regarding this over-the-top special needs ramp that was given to a Scottish family that was ten stories high at the cost of $70,000.  Most in the special needs community would look at that and say - what crap!  Really a ten story high ramp?  That not only is it quite ugly in front your home, and likely can't add value to your home or neighborhood, but you have to literally navigate your child like a bad game of pinball through this maze in all weather conditions.  Gives new meaning to just wanting a "straight shot" to your doorway.

But then you have those that are saying - You don't have the right to complain because it was free!

There is a huge misconception that if you complain about something that was a gift or given to you free of charge that if you dare to complain that you are kicking the gift horse in the mouth.
That couldn't be further from the truth.  Respectfully, just because you are a family with a special needs child doesn't mean that you don't have a voice in the matter or that you should be easily silenced by someone not charging you for a particular service or home modification.  After all, someone somewhere had to pick up the tab!  Just because it was free to you those costs trickled down to someone else.  Was it a non-profit?  Tax payers?  That $70,000 came from somewhere... were those costs justified in building this monstrosity?  Is even practical? 

It is presumed that your response should automatically be who cares if it's a piece of crap?  It was FREE!  And those who say otherwise well they simply lack the ability to look on the bright side.  But if you take that position what you are doing is taking the voice out of a person... and making them feel like they have no right to dislike or like something.  Everyone wants the right to make decisions and choices.  Just because you didn't pay for something does not mean you lose the right to have an opinion or feelings about something.

We recently had a home modification ramp installed that was provided to us by a foundation.   We met with representatives a couple of times who outlined a plan for us - a plan we felt comfortable with and agreed would be a good choice for our home and Noah's needs.   But when it came time for the project to be completed I was heartbroken to learn that the project started while we were sleeping and they had taken a sledge hammer to the brick retaining wall, ripped out my entire garden, all of the plants, one of which was very special to me and had personal significance, exposed sprinkler lines were everywhere.  None of that was in the plan.  

It gave me a huge sensation of feeling powerless.  Powerless because the damage was already done and I hadn't been consulted or advised that there was a change in plans.  No one asked me if I was okay with something different than originally planned.  That was the most difficult part.  I was forced into acceptance, whether it was truly something we wanted or not.   Am I thankful that we now have a ramp?  Absolutely, it is a gift and a big help with Noah.  But there are still some elements to it that are problematic and that I wish were different.  Do I have a right to complain because it was "free" well most would feel that I don't.

I still wish it had railing, as I have safety concerns for Noah's little brother and without railing Noah will lack the ability to ever use the ramp if he learns to walk with assistance and needs help from side rails.   The material used is very slick in the winter, and we're still tracking in sand (even when we were promised we wouldn't be).  The plants - well they were re-located and their fate is yet to be determined come spring.  After 3 days uprooted it remains to be seen if they'll make a proper recovery.  Of course along the way we were promised some features to try to rectify my concerns, but for the stability of the foundation they had to renege on those promises... the retaining bench/wall didn't happen, and we simply wound up with just edging along all sides of the ramp and new pathway.  It isn't at all how I pictured it, but yes the ramp is something that Noah really needed. 
Noah's Ramp

Noah's Ramp (He goes in between the posts)

So you figure well I have to accept this is how it's going to be, as good as it gets, after all because it wasn't your personal dollars invested, and you signed a form saying you really waive your rights... then you MUST learn to love it.

The Scottish family with the ten story ramp are wishing something different had been built too, but feel like now all they can do is wish for a gate to keep juveniles from playing on this huge ramp and causing havoc so close to their property.  They are likely too feeling a bit the same way... you MUST learn to love it... whether it is what you wanted or not - because after all it's FREE!


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

The Fight for the Pilot

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Sometimes you just don't know where to start... the consequence to not properly writing a sequence of events as they occur.   This means I have to give you a brief history first before I get to tell you about today's events:

October 29th, 2013:  Noah was denied for an adaptive crawler device called the Krabat Pilot Crawling System.  A request that we had made to better assist Noah learning to crawl, bear weight through his arms and legs, and continue strengthening his arms, and legs, while giving his hips the proper assistance they need.  Noah has tried a product called the Creepster Crawler, and while it comes with a considerably less price tag, the Creepster Crawler suspended Noah from a cage-like frame with a harness offering him really little support for his hips and legs, and didn't really offer Noah the momentum that he needed to propel forward.  The Pilot's design if very different in nature allowing the trunk of child to rest on a platform.

Krabat Pilot Crawling Device

November 15, 2013:  After receiving the Medicaid denial notice in the mail and after speaking with the Durable Medical Equipment provider (DME), I filed my appeals letter and request for a court telephone hearing.  I knew I would likely need to provide an Administrative Judge with additional information to give consideration to forcing Medicaid to fund this for Noah, so I researched information online, obtained a secondary recommendation letter from his primary care provider and therapist, to demonstrate medical necessity.

December 17, 2013:  I receive a Notice of Hearing from the Court indicating a scheduled telephone hearing and and Notice indicating that a Evidence Packet must be mailed no later than five days prior to the hearing.

January 6, 2014:  I receive a call from an individual representing themselves as a officer of the Court, and coordinated a date with me for a telephone conference.

January 13, 2014:  Telephone conference occurred, but it was not with the Court or an officer of the Court, but a Medicaid caseworker, who attempted to coax and encourage me not to follow the Court's Notice of Hearing outlining if I had any additional documentation to support the appeal that I email it or mail it to her immediately so that she had sufficient time to get it to her doctors and experts to refute my information and position.

February 1, 2014:  I mailed my additional information to the Court, ignoring the representative who lied about being a Court employee and tried to coax me into providing her information not in accordance with the Notice of Hearing. (Why on earth would I help them find a stronger way to deny my child something he needs?)

February 11, 2014: I receive the Appellee's Evidence Packet in the mail (certificate of mailing indicating 2-7-14).  Containing Exhibits A-E, including a CV from an expert who had no experience in pediatric medicine, rehabilitation medicine, or neurology; who resides in Oklahoma and is contracted/employed with a company called APS HealthCare.  This company contracts with Colorado Medicaid providers to offer expert services at hearings to support why a child should be denied something requested through Medicaid funding.  Other Exhibits contained an Aggregate Episode summary, which in short is a series of notes between a nurse, and a doctor for Medicaid, offering their reasoning for a denial, a price guide for the item requested, the letter of medical necessity and recommendation from Noah's doctor submitted by the DME, and my additional letters from his doctor and therapist.

And that brings me to today (February 13, 2014)  The Telephone Hearing:
Hopefully I haven't lost you yet, but I think it's only fair to give you a perspective of the timeline of events on this kind of thing. 

The telephone call was right on time, although there was a few minutes to set up the conference call between a third-way party.  If you have ever experienced a typical judicial hearing, then you can imagine what this was really like.  It's very typical where the Judge asks all parties to introduce themselves into the record, the party testifying is sworn in,  the Appellee puts on their case first, then you have a chance to cross-examine, the Judge asks his own set of questions, and then you basically call yourself to testify representing your child... etc.  (if you decide not to fill out the cute little Non-Attorney Authorization form which indicates no one is assisting you through this process).   Given our current legal bills regarding Noah's case and appeals for his medical malpractice, we know that we are really on our own for things like this - however I wouldn't discourage anyone from finding legal counsel to assist you through something like this.  In fact, think it would be highly beneficial to have an advocate/legal counsel on your side assisting with this process.

This was Medicaid's basis for Noah's denial:
1) Product is recommended by the equipment vendor as "Up to Age 5" (denied that Noah was 2 months away from age 5 at the time of the request)
2) Because they did not have knowledge if Noah had tried the product with success.
3) Because they did not have information if Noah possessed head/trunk control.
4) No knowledge of other products trialed or considered.
(NOTE the denial was denied for NON-MEDICAL NECESSITY).

The cliff notes of the hearing:  The expert admits he has no experience in anything pediatric or rehabilitative medicine and is simply contracted to serve as an expert in this capacity; admits never read Noah's medical files, never met him, knows nothing about him; refuses to answer exactly how much he was paid for his time to review Noah's denial, make a recommendation to the court and testify, just would say only that he is contracted with hourly pay on many cases at the same time and estimated an hour of his time to Noah's denial.  (One can only hope that the cost of his services are less than what it would have been to actually just approve this piece of equipment for Noah).  Personally I take great issue with the fact that you can spend dollars fighting against what a child needs for daily living rather than just granting the request.  Let's talk about wasting tax payer dollars in that direction!

The expert indicates that we had the ability to have Noah's doctor submit additional information after a denial but they failed to do so because the DME (NuMotion) failed to go back to the doctor and request more information.  Which is really typical of most DME's.  They simply lay it back up on the shoulders of the parents to go through the appeals process.  And in fact until today, I didn't even know that they had the ability to go back to a doctor for more information to potentially avoid the necessity of a court hearing.   But between you and me, even if one takes that route and attempts to get further clarification from a doctor after a denial, I'm not sure how successful that avenue would really be - after all when they dig in their heals and decide not to pay for something they stand pretty firm on that unless there is something legally twisting their hand otherwise. The expert even admitted that Noah's doctor's additional letter after the denial didn't change his mind on medical necessity - which is rather proof in the pudding that it wouldn't have mattered if they sought additional information from a doctor prior to us requesting a court hearing.   At least I learned something new for the future - as I anticipate this won't be my last rodeo with fighting for Noah's needs.  The expert tried to use a recent request for an i2i headrest as proof Noah doesn't have adequate head control for the device, although admits in testimony he can't describe the device as he hasn't seen it.  (For those of you who don't know what an i2i headrest is - it's like a U-shaped headrest that goes around the neck and drapes over the child's shoulders.  Helping a child's head stay mid-line.  We are exploring a power wheelchair for Noah and an i2i headrest is needed to aid him driving - which is another blog post I need to catch you all up on, and doesn't necessary reflect the fact that he cannot hold his head up for short periods of time).

I basically offered testimony to the Court explaining Noah's condition, what his head control was like.  That the weight limit for the product is 55lbs which Noah is not close to yet, and that he is smaller than a typical child at age five just due to having Spastic Quad CP, I introduced my articles that I had provided to the Court - admittedly I stumbled through that as I forgot I needed to address and label them as Exhibits, but in my Defense I don't practice law on a daily basis... I did the best I could in the moment.  I tried to offer the Court the best clear picture I could of Noah's capabilities and the potential this product could offer him.  The hearing lasted an hour and a half, the Judge seemed thorough with both sides.  He will issue his written order in twenty days.   Did I do well enough to fight for Noah?  I don't know.  I hope I did.  It's nerve wrecking.  Makes your heart flutter and your palms get all sweaty.  Both from a combination of nerves and agitation that you even have to go through all this for a child with special needs.   In hindsight you always wonder, should I have mentioned this?  Would that information have made any difference?  Did I miss something crucial in cross-examination of the expert while I'm writing down notes feverishly?...

But the point is, whether I won or lost this battle I tried.  I got up today.  And I fought for a little boy named Noah.  And God that's what counts.  I'm not a quitter.  And I'll give my last breath to help this child.  And in the meantime I will wait patiently these twenty days and just say some prayers. 


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

Friday, February 7, 2014

WHEN YOU THOUGHT I WASN'T LOOKING In The Eyes of a Special Needs Sibling

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When you thought I wasn't looking I saw you feeding my
brother patiently spoonful after spoonful, and I instantly
I learned the true meaning of unconditional love.

When you thought I wasn't looking I saw you catch and release
a spider outside, and I learned that every life has value.

When you thought I wasn't looking I saw you lift
my brother's wheelchair, and I learned that everyone
needs a little help.

When you thought I wasn't looking I heard you say a
prayer, and I knew that there is a God I could always
talk to, and I learned to trust in Him to see me through
the hard times in life.

When you thought I wasn't looking I saw you correct an
impolite stranger who called my brother a cripple,
and I learned the meaning of acceptance.

When you thought I wasn't looking I saw you going
to countless therapy sessions for my brother and I
learned the true meaning of hard work.

When you thought I wasn't looking I saw how you
handled challenging situations and set backs and I
learned how to persevere.

When you thought I wasn't looking I saw tears come
from your eyes, and I learned that sometimes things
hurt, but it's all right to cry.

When you thought I wasn't looking I saw you modify
things to make it work for my brother when you were
denied help and I learned ways to adapt and overcome.

When you thought I wasn't looking I learned most of
life's lessons that I needed to know by watching you
be a loving, kind, and unselfish person.

When you thought I wasn't looking I looked at you and
wanted to say,'Thanks for all the things I saw when
you thought I wasn't looking.'

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

Wednesday, February 5, 2014

Snow Day

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We took Noah out in the backyard for the first time to try out his special needs Cerebra Sled.  Noah has never loved the snow, the cold weather, or the glare of bright white surroundings, but as soon as we strapped him in his 5 point harness sled, his face lit up with a big smile and the laughter followed.   This sled was a huge hit with Noah.  His dad just did circles in the yard.   Noah was all bundled up like a giant ball of fabric, having the best time ever.

This sled is amazing!  It glides perfectly through the snow.  It was easy to load Noah into it and buckle him in - even with gloves on.  It has a good center of gravity and didn't tip to either side.   People might think that fundraising for a special needs sled is a waste of time and energy, but to see him be able to participate in a simple winter activity that typical children do, means so much - to him and to us as his parents.  We want Noah to be able to participate in everyday activities the best that he can.  To enjoy life, to find laughter and pleasure in all aspects of play. 

We had hoped to build a snowman, but our temperatures have been too low for long-term exposure outside, so we had our ten minutes of fun and came in.   The perfect snowman still awaits and since we can't seem to catch a break from the snow I'm sure we'll have plenty of more opportunities later on. 

Noah's county services inquired about some of our out of pocket costs last year - when I told them about the purchase of Noah's sled I got a big laugh on the other end of the line, followed by "what for?"   I rarely am able to think of quick comeback for people's off the wall assumptions when it comes to children with special needs and the perception that they can't possibility join their peers in regular activities.  

But after the fact I would have told this caseworker, about all the health benefits that winter play can offer a child:  Things like being outdoors even in winter months, helps reset circadian rhythms (circadian rhythms refer to your unique body rhythms of waking and sleeping in sync with the rising and the setting of the sun, and how the benefits of natural light and fresh air serve to not only improve physical health, but also emotional health.   And bonus it helps Noah with proprioceptive and vestibular sensory input, while also increasing attention , focus, postural stability and gross motor coordination. 

I know that's a lot of therapeutic terms... in short it just means it helps Noah find his center of gravity and improves things like balance, trunk and head control.  And provides Noah the ability to self-calm his spastic tone to aide in more intentional type movements.   So it's not only recreational family play, but yes, built in therapy. 

They of course would disagree and reminded me such items are not worth pursuing or funding.  I'm convinced it's going to take a long time for society as a whole to get up to speed on what truly matters in the day and a life of a child with special needs and the potential of what is possible if they have access to things that make them capable of participation!

Until then, I'll just blog about all of the gains Noah is making as a result of a lot of love and help from others and a parent's mission to find all ways of helping him.

People are kind of like snowflakes. There is no one like us; we all have different skills or designs that make us who we are. P. Eveland

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

Monday, February 3, 2014

Planning to Potty

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Noah has had a flamingo toilet seat for sometime.  Likely over a year in fact, gaining dust in the basement and unable to be used.  I feel there is a large gap for equipment that truly works and that we need for our children in the US.  I see so many amazing products that exist elsewhere and I scratch my head each and everyday wondering why don't we have that here?  There seems to be only a handful of products to chose from and unfortunately you're often forced to pick the lesser of evils when you know your child needs something but it likely isn't going to be the right fit.

The smallest flamingo didn't fit Noah.  He has a very tiny bum.  And he'd just fall through the center, causing him not only pain but marks on his inner thighs.  We, spent countless hours trying to add foam to it and buying typical toddler potty inserts - but to no avail.  Nothing worked and nothing fixed the problem.  When we explored a custom molded seat for Noah's wheelchair late last year, we were told about the option of making a custom insert that would sit inside the flamingo potty seat.  We thought it was worth a try.  Many hours and several appointments later, Noah's custom potty seat was completed.  Medicaid will only provide a 12 month limit on it - which means if Noah outgrows the mold in 13 months we'll have ask Medicaid to fund another mold.   With his custom wheelchair seat we only have to ask Medicaid for permission to fund and replace it every three years, regardless of growth or how many molds he'll need during those three years.

You might be wondering how exactly do you go about potty training a child that cannot sit, walk, talk, crawl or self feed.  It's going to be tricky but not impossible.  Like with any child you give them lots of opportunities to sit on the potty and with time we're hopeful Noah will be able to give us a signal, whether that be tugging on a bracelet that he'll wear or looking at something that will tell us he needs to go.  I'm not going to sugar coat it - it could take me a while.  Maybe a year, maybe more.  But we know Noah is capable we just have to figure out his terms.   I must say that Noah is rather proud to be sporting big boy britches over his diaper.  He's really proud of himself.

I am glad that Noah had the basic foundation frame of the Flamingo sitting in the basement, since learning that many Snugseat products, including the Flamingo have been blocked by the FDA from entering the US.  And it's not what you'd think - it has nothing to do with safety concerns.  It is discouraging as this seems to be happening more frequently, causing children with special needs to be forced to wait months or even up to a year to receive equipment they need for daily living and their quality of life.  Does the FDA care?  Nope not one bit.  It is reported that they hope to lift the block by July, which mind you is still almost 6 months away.   Many families have already sought and obtained insurance coverage for these Snugseat products - but now they have to patiently wait.

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