Noah's Dream House

The Engineering Department at CU Boulder is building the ultimate playhouse for both Noah and his little brother.  Really the first of it's kind - a playhouse that incorporates play features a typical child and a child who has special needs so that they can play alongside each other.  The lower portion will be "Noah's Cave"  the upper portion "Luke's Loft."  I had a chance to see pieces of the project and I'm just in awe of the talent and time that these college students have invested in this project.  I never would have thought about half of what they have done to make this playhouse extra special.  It has always been a dream of mine to have a play area that both boys could enjoy and that would assist them in playing together - this kind of goes beyond the dream. 

The playhouse is rather large - 7 feet wide by 12 feet long and around 7.5 feet tall.  So it will be much like having a shed in our basement.  The dimensions of the the playhouse were really driven from the desire to be able to have Noah's wheelchair be able to fit through all doorways and have an adult attendant with him be able to actually stand comfortably in the playhouse.   The students have broken up the project in several teams.  One teams is handling a rock climing wall and slide for Luke, another the exterior, another for interior painting and decor, sconce lighting, paper rocks that look so real,  an airplane that will fly overhead, LED lights that Noah can control with an adaptive switch, sensory lights that recognize Noah's movement, a mailbox that will sing his favorite song when you open it, a matching shapes game that will offer light rewards if you get choices correct, and a stand for his IPad so that he can pull up and play with it in a wheelchair.  The house will also have soft sensory flooring for Noah to lay on.   We are so excited to see it all put together when it is done and then built in our basement early December.  I think the boys will just love it. 

One wall of the Playhouse

Interior Walls of the playhouse (yet to be decorated w/Jungle Theme)

Future Rock Wall

Flying Airplanes for the top of the playhouse

LED lights activated by adaptive switch

Luke's Loft and Noah's Cave

Noah's sleeping continues to be a challenge.  We still can't seem to find the true root of the additional sleep disturbances that he is experiencing.  He's just restless, but his brother is the same way, so it could just be typical toddler sleep patterning.   We weren't sure if Noah was cold in the night, so we've bumped up the heat quite a bit and are dreading our Xcel electricity bill when it arrives.  I know it's going to blow us away, and we don't qualify for LEAP financial assistance.  Noah may always lack being able to safely sleep with a blanket and he cannot move in sleeps sacks and could be susceptible to pressure sores if he was unable to move himself as much as he currently can - and even then often times we need to reposition him - especially if he gets stuck up against the side of a bed wall.  

The Christmas tree went up yesterday.  Noah is celebrating.  This is definitely his time of year.  We still have to put up his Christmas train, which I sure his little brother will attempt to place off track, before Noah has an opportunity to derail it.  Just hoping this train continues to make it another year.  It sure gets a lot of Noah abuse with Noah rolling into it and swatting it around.  But it is one of his favorite things to do.  It's hard to believe that it's almost December - and soon to be Noah's 5th birthday.  Although time seems to fly, it never travels faster than one day at a time.

Love,



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

Counting Blessings

Yesterday I had the rare treat of getting to go to lunch with two other special needs moms. We had a long lunch spending a couple hours discussing all topics relating to our children - comparing notes about therapies, Medicaid denials, nursing, respite, diets, medications, doctors... lots of topics that most parents don't have to think twice about.  As we spent the afternoon together having lunch and walking the local mall we discussed how unpopular we are as special needs parents with government agencies, public school systems, doctors that don't listen, nurses that steal drugs, respite care providers gone bad, medicaid denials gone both good and bad and the fight that follows, therapists that road block you from pursuing avenues that would improve your child's quality of life.  And the most well seasoned mom out of the three of us, said the most powerful thing today.  Turn your tears into re-directed energy.  Think about how you can make that person or group that is causing you to cry to have a very bad day.  Sweet revenge in a sense with comes finding a way around them.   So what you tell me no... I will find someone that says yes... that says yes to helping my child with open arms.  In our time together I realized that the three of us in our own individual ways are some of the strongest, and most powerful advocates you could ever begin to imagine.  We have fierce drives and incredible profound love, that makes us so powerful even on the hardest of days.  We are like the energizer bunny... we keep going and going and going for our children.   You can try to knock us down, but we'll get up each and every time and figure out how to advocate for the needs of our children.  Inevitably I feel sorry for those who think they'll stand in our way.  Eventually you will lose.  The odds are not in your favor.  We have a fire like no other.  God made us fighters to go the distance. 

Yesterday I drafted the strongest appeals letter I could write for Noah's most recent Medicaid denial, a pediatric crawling device - deemed "Not a medical necessity" even after being recommended by a physician and a therapist.  Now I wait for my telephone hearing before and Administrative Judge to battle it out and attempt to convince them to overturn their decision and fund it.   And this of course won't be the last denial I'll have to fight.  Sadly, it is common - more common that it should be.  I think Medicaid and other agencies are rather relying on the hope that we'll give up, accept the denial, put our tail between our legs and go away.   But we don't know how to turn our backs on helping our children.  So we become soldiers of one.  Battling for every need that they have.  Exhausting at times, but we keep marching forward.

We got a very beautiful invitation for Thanksgiving this year.  We received a flyer in the mail, inviting special needs family in our community to a restaurant for Thanksgiving dinner, for no charge and no tip.  And they were also inviting 12 of your family members to attend with you.  Yes doesn't it sound unreal?  It did to me too.  I think must have read it at least five times, then had to sit down and read it a couple more!   I've never seen or heard anything like it before.  And what a gift.  You can only begin to imagine how challenging the holidays can be with a child who has special needs.  I loved cooking Thanksgiving dinners and had done so pretty much every year since my parents divorced when I was 19.  I remember trying to cook my first Thanksgiving dinner after Noah's birth - it was so difficult.  Noah was tremendously distraught in his early years, he screamed, cried almost twenty-four hours a day.  I bounced him endlessly on exercise balls, turned up every stereo to try to find something that would soothe him even for 30 seconds... I cried more tears that first year than I had done in my whole life.  I was so lost, so tired, so beside myself with grief and trying to accept my new life in the role of a special needs mom.  Thanksgiving to me was a way that I could prove that I was able to juggle both a very challenged child and cooking.  Although many hands were offered for help, I declined wanting to conquer the goal - a turkey dinner with all the trimmings and me serving my family around the table.   I did it.  But it was far from easy, and looking back on it, not sure how I did it, and I wouldn't want to try it again.  It inevitably has grown easier since then, since Noah is now older and able to self-soothe to a large degree.  But it does take extra work, that other households don't necessarily have to balance while preparing a large meal.   So this year, we decided to take up this wonderful offer by Zolo Southwestern Grill and accept their kindness and amazing offer to have them prepare our Thanksgiving dinner this year.  Noah and family will be dinning out.  And I'm excited - thrilled actually to be surrounded by other special needs families - we are a group of people in the community that never fail to count our blessings. 

Love,





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

Paint the Pony

Noah has been doing so well at hippotherapy and continues to make huge strides with his head, neck and trunk control.  He can now look both directions that he's traveling in, and hold his head up for long periods of time.  It is truly amazing how far he has come.  One of the best and likely most expensive therapies that he does.   We were so excited to see pictures of Noah for Colorado Therapeutic Riding Center's Paint the Pony Brochure!  He looks truly sweet on his horse in his pictures.  We are so proud of our little cowboy.  His hippotherapy therapist also made these great shoes for Noah.  They have wooden platforms glued on the bottom of the soles of his shoes.  Noah walks with assistance after he gets off his horse and this helps him firmly plant his feet one foot after another.  The are very effective and what a great fix to help him walk better. 

Noah's shoes with platform wood bottoms for walking

Samson, Noah's service dog left to Utah several weeks ago to finish basic obedience and skilled training.  We received some rather sad news last week that Samson, has failed the program.  Our family grew very attached to Samson through the last year of his life, and as a result Noah's grandmother has decided to adopt Samson into her home so that we'll still be able to visit and see him periodically.  We hope to hear soon about the next plans to replace a service dog for Noah. 

The change of seasons, or maybe even the time change itself continues to present night time challenges for us.  We are always up in the night to assist Noah, but it never fails that either the change of seasons or time changes seems to spark even more late night trips to Noah's room to help him.   It's always a trick to guess what he needs - hungry, too cold, too hot, too restless, getting sick... doesn't like the sheets we put on, the room isn't dark enough... trouble shooting at 1am isn't really a bowl of cherries but we continue to try each and every night.  I really wish that Noah could safely sleep with blankets like other children, but he has so much movement that he wraps himself up in them and they pose the risk of suffocation, he won't sleep in a toddler sleeping bag because it's too bulky and prevents him from flipping over.  They make an anti-suffocation pillow (of course that is also made and shipped from the UK) but as far as I know I haven't been able hunt a anti-suffocation  safe blanket.  Noah's has also experienced difficulties recently his fleece PJ's with footed feet seem to be driving him crazy.  I can't tell if it's the closed in feet, the zipper all the way up, the feel of the fabric, or that they aren't form fitting that is sending him to the moon.  So he's sleeping in day clothes with socks and that seems to be working better.  

Chris and I are also struggling with our aches and pains.  One might think - really how hard can it be to carry an almost five year old child around? - He's still fairly little - but you have to consider we have to carry him everywhere.   Transferring in and out of a bath, to bed, on the floor, to his feeder chair, in and out of car seats, and wheelchairs and strollers, we also run him around because we are his legs and his arms...  Chris has severe back issues, and I seem to be feeling it like a bunch of pinched nerves in my legs, feet, arms and lower back - and of course we're again parents, in our late 30's - things aren't going to get any easier for us as we get older.  We joke that we'll have to hire some young strong person to help us lift Noah place to place someday.  It's the things that most people don't even think much about when they see a family like ours. The physical strain is as real as the emotional and financial strain.  Collectively it all wears you down, little by little.  And we just continue to pray for God to give us lots of strength and good health so we can keep being Noah's ability to be mobile in all ways that he can be.

“You never know how strong you are... until being strong is the only choice you have." Cayla Mills


Love,




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

New Traditions

This is the first year we finally gave in and realized that trick or treating with a wheelchair with all homes having multiple stairs was too challenging for us - and for Noah.  So we decided to start a new tradition of trick-or-treating early at a venue that was indoors, and without stairs and just stay home on Halloween and pass out candy.  This year we chose Wings Over the Rockies Air & Space Museum.   With Noah's love of airplanes it was a great choice.  A quiet Sunday, just the four of us, and it was really nice.   Easy in - and easy out.  Noah went as a cowboy this year with his horse in tow.  And his little brother was a blue puppy.   There wasn't a significant amount of trick or treat traffic and it was a large area, so it was really comfortable for Noah.   And his eyes just lit up when he seen the jets. 

I'm not sure I could even count the ways that our lives have changed in the last five years.  Part of it has come in this unexpected natural way, other changes I have fought against with my entire soul,  some changes I continue to even pray for.   But there comes a time in your life when you have a child like Noah that you just have to accept no matter how hard it is, that life will never ever be the same as you once knew it.  Imagining how your life should have been - well it's too painful to even really go there on a regular basis.  I won't say I haven't gone there - I've certainly had days where I imagine Noah is playing, running, talking and making mud pies runs through my mind - the child he would have been... the child he should have been.   But for the most part I try to focus on where he'll end up and all that he's capable of doing with lots of work and most importantly lots of love. 

Noah received his Tobii Eye Gaze device last week.  It's going to be a learning curve of course for both him and us while we learn all that it can do, and how to get Noah to effectively communicate.  Noah already seems to really like the sensory guru program, which is game oriented to teach him cause and effect with his eyes.  The main problem is that his little brother is also extremely interested in the new eye gaze machine, it's hard to explain to a 2 year old - that this $25,000 gadget is NOT a toy.  It still is a dream that I have that the companion software called Magic Carpet (another incredible UK product) will someday also be funded by medicaid with a price tag of another $25,000 - allowing both him and his little brother to virtually play sports together - Noah using his eyes, and Luke using his body.  It's breathtaking software.  And when you are a mother living in two different worlds - a special needs world, and the typical child world you long for bridges so your children to play better together.  This is a link of the Sensory Guru oftware: https://www.youtube.com/watch?v=OdpioDSZd8g And the Magic Carpet Software: https://www.youtube.com/watch?v=PXL_Qf_bgq4

We are also hoping that Noah's Krabat Pilot Crawler will be approved by Medicaid.  Noah is showing even more ability in wanting to use his trunk and back muscles and we know he so badly would like to crawl.   We've also applied for the opportunity for Noah to trial a UK product.  We are really crossing our fingers and our toes that he is chosen as one of the children to trial the product.   Most of our favorite equipment comes from the UK or is in the UK and we can't yet get our hands on it.  The power wheelchair situation turned rather sour quickly on us.  On the 5th appointment out of 6, it was deemed that Noah was not performing up to the therapist's standards and she told us she would not be recommending Noah to proceed with a power wheelchair.   It's was especially upsetting for Chris, who has taken off each appointment from work without pay to give Noah this opportunity in his life.  And we have been so thankful and blessed that his employer has been accommodating while we tried to work this out for Noah.   But I won't give up, I believe in Noah.  He can drive, we've witnessed him do it several times and he's deserving of this chance.   He just need someone to take a leap of faith and believe in him as well.  And I am going to pray God sends me just that person.

“As long as you have life and breath, believe. Believe for those who cannot. Believe even if you have stopped believing. Believe for the sake of the dead, for love, to keep your heart beating, believe. Never give up, never despair, let no mystery confound you into the conclusion that mystery cannot be yours.” Mark Helprin

Love,





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

Life's Smallest Miracles

As of late, I've been stewing over my frustrations, anger, sadness, and disappointment surrounding the actions or even the lack of actions of others regarding sticky situations that I have no control over.   Today, as God often does, stepped in and gave me a clarifying moment - one of those moments that brings me back to the center of what truly matters - and that is Noah's growth, achievements and the miracles in his life.   The rest is outside noise distracting me from my goal - helping Noah be all that he can be.   I don't have time to right all the wrongs.  I'm busy, that's God's job - and I believe he's good at it.  I trust him and willingly turn it over to him to handle.   And I can take solace in that as a general rule, most people eventually trip at what they simply sweep under the rug. 

For the first time in Noah's life I witnessed something amazing.  While working with his Feldenkrais therapist today during an intensive session, Noah was in a 4-point crawl pose and pushed through his knees using his back muscles in an attempt to extend almost if one were going to try to get up or stand.  His head control was flawless, in one breath-taking moment I was in awe.   My emotions became centered, positivity flowed through every fiber of my being.  That's what matters - Noah and his progress.  His miracle.  He had an amazing day from start to finish.  Beamed at warm water therapy,  giggles in the grocery store, and showing me how strong he was at Feldenkrais therapy.   Today was one of his days to shine.  And little does he know he helped bring me back to my center of gravity.   This child is truly inspiring and I'm not just saying that because he's mine.  If someone really spent time with him - more than just a passing at a park or a store - they'd see that this little blue eyed boy is holding some heavenly secrets and qualities within him.   Children with Special needs are like that.  They light up the dark corners of the world.  Some people see it - while others can't.  But it is real.  The light that shines within them is so bright, so pure, so perfect.  

Noah is also making wonderful progress at his therapy school.  Although we missed several weeks due to illnesses within our family, he is remembering his positive experiences.  Since the fall class has started I haven't seen one gag reflex yet.  The feeling of the class is the right fit for Noah.  He seems to have made connections and feels comfortable.  A lot of work has gone into this improvement, from home visits with his teachers, to us creating a social story to read to Noah daily so he understand his daily routine and events, to planning comfortable spaces within the room, to his own place to just observe and watch children until he himself tells us he's ready and comfortable enough to participate with others.  Before we couldn't even park in the parking lot without the gag and vomiting starting.  We've come such a long way in a short amount of time.

Little miracles continue to happen at home today too, as I was writing this in fact I looked up to see that Noah's little brother Luke found a very small hackey sack basketball in the toy box he picked up and walked it back to Noah, sat down carefully beside him, and gently pried his stiff fingers open to place the hackey sack in his hands then assisted Noah's arm at the elbow to help him lift his arm in order to mimic throwing it.  Noah's hand naturally released it and Luke continued to fetch the hackey sack and repeat the steps.  We've never played in this way with Noah, Luke was not copying something he had seen a parent or even a therapist do.  He naturally knew this is how he'd have to help Noah play.   God sent me such a special soul in Luke - the perfect companion for Noah.  He loves and cares about his big brother so deeply.  They are able to communicate without words.  And to be a mother just watching the innocence and pure love of this interaction is just so overwhelming.  I never take for granted the little things, behind the little things means only greater things are to follow.

Love,



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

Expect Anything

This year it seems has been one difficulty and trial after another.  I seem to catch my breath only to wait for the next disaster in our lives.  I keep telling myself that God must want me to learn lessons in all this, but all I feel that I'm learning is to trust no one and stay away from anyone I come in contact with.   I love openly, I try to find the good in people - maybe in doing so I ignore the warning signs - maybe it makes me more vulnerable and blind to people with less than the best of intentions.  And once again if filters down and affects Noah's life.

Today I discovered that a fundraising organization that helped Noah earlier this year, spent Noah's fundrasing money. I don't know the exact total since there were 3 days of fundraising involved and an online auction.  My guess is the total was around somewhere around $3,000.  The organizer of the fundraiser indicated to me today that it was taken out of her account due to child support issues and it was gone.  I had my suspicions for a while that the money was not there as I asked for therapy equipment to be purchased with unresponsive replies.  While she made the offer to send me payments weekly, until Noah's donations were re-paid, I know in my heart I'll never see that money reimbursed.  I've contacted the organizations directors, and I'm not sure they really know what to do about the situation either and have simply encouraged me to pursue "real world avenues" regarding the situation.  Which to me means exploring legal action as a remedy.  And I'm thinking that should not have to be my responsibility to right every wrong.  So God, I look up and say what is the lesson now.  What exactly are you trying to teach me.  What is the message that I am not hearing?  Because I am tired and worn out.  And if you think you're using me as a tool for others to learn from... well God I'm not sure anyone is listening.

Noah's service dog situation is also less than ideal.  Samson left home earlier this week to be sent to Utah to finish both his puppy training and his skills training.  Our assumption was he was going to a person skilled in training service dogs, but so far it seems he's just been sent from one home to another and is going to a person that has no experience in training service dogs, but that will simply be followed by a trainer.  And I'm feeling like this isn't at all what we signed up for either.  I had thought we'd be getting a highly trained service dog, and instead it feels like we're destined for a house pet.  And I sit here extremely troubled as I continue to hear about multiple clients seeking and winning judgments against the very same agency that Samson is from.

And the thing is I'm doing my research.  I'm doing my best to explore valid organizations and foundations to deal with.  I'm not making any decisions quickly or in haste.  Yet, somehow I wind up realizing that I'm dealing with nothing but wolves in sheep's clothing.  I feel like I have sucker written all over my forehead.  In my quest to search out all the help I can provide Noah with and avenues to make his life better - I seem to be drawing all the negative people to me - like a heat sinking missile.   If I do find red flag I do question it, but seem to buy into everyone's explanation which is just a way of pulling wool over my eyes.  Maybe my radar is off when it comes to judgment in people's character.  Or am I just so desperate for help that I'm easy pray?  I want to believe the world cares about Noah.  I want to believe that no one would want to cause pain or hurt to him or his family.  But that is not the case.  The world is not good and pure.   It feels like the statistics are that out of 10 people only 2 have good intentions and the other 8 well watch out they'll give your life a wild ride.

By the end of all this I'll be able to write a book titled: How Not to be Hoodwinked When You're a Special Needs Parent.  But for right now I feel like I want to bury my head in sand and have a big cry. 




Love,




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

Rising Waters

We survived Colorado's Historic Flood this year.  I had a few days that left me a little worried as the yard started to collect a small pond and water started to seep through a window well.  But then I remembered that God gifted me with a child named Noah and we were going to be just fine.   His little brother thoughtfully brought out the Noah's Ark toy, gave the top half to Noah and then drove or floated the bottom half on the kitchen floor.  It's amazing what children know without an adult speaking of what Noah's Ark was -  they knew it was raining and that meant they needed to play with the Ark.  It's the little things that kind of leave you in awe.  Like they can hear God so much more clearly than I can. 

Noah received his custom Aspen Seat and he loves it - we love it.  Finally for the first time in Noah's life something designed to fit him - perfectly.  It positions him wonderfully and he's so comfortable in it.   It took several appointments to have it molded and fitted correctly, but it was worth all the time invested.  Our hopes are that an Aspen seat will also be made for Noah for a toilet, since he has been unsuccessful in a comfortable fit with the flamingo toilet seat product. 

Noah has also been going to power wheelchair trial appointments.  The first two appointments were a huge success.  Noah drove and understood that he was in control of his actions.   The third appointment was during the 2nd day of our massive rain storm and Noah just really wasn't in to it.  We'll likely have two or three more appointments to make sure we completely know what is the easiest controls for Noah to navigate a power wheelchair and then hopefully one will be ordered for him.  

Noah in trying out a power wheelchair!

The seasons have changed and I've been struggling to get my footing and prepare for fall and the winter ahead.  Noah is now too big for onesies, which is great that he's healthy and growing, but this year I was faced having to buy both children all new clothes.   Noah looks more grown up with just shirts and pants, and seems to be navigating rolling just fine without having his shirt tucked in.  Each day that child gets faster and faster at rolling.  One day I actually lost him and he rolled all the way to the front door, quietly watching me, amused as I panicked thinking someone came into the house and stole him.   He very much likes to hide and thinks it's funny when we cannot locate him immediately. 

Typical change of season style, we've been battling some in-house germs.  This time I was the one to start the domino effect.  So we've been trying hard to get the family well.   It's always extra frustrating when I'm the one who brings home the germ.  I work so hard to give Noah a germ-free environment.   Even harder when the germ spreads to the only outside help we have - Noah's maternal grandmother.   That really complicates getting Noah to his therapy appointments as that means there is no help with Luke.  I imagined it would get easier the older that Luke got, but it's actually proven to be a bit more challenging.  He's a very active, typical toddler and it was so much easier when he was little and I could buckle him in a stroller or carry him in a car seat for all our appointments. 

We are trying an online fundraiser to help with Noah's needs.  If you are in the market for an upcoming holiday gift, consider purchasing a candle to help Noah, 25 percent of sales will go towards helping him with out of pocket costs.

Just go to http://www.bymonique.mygc.com/. Go ahead and take a few minutes to check out Gold Canyon's huge selection of fragrances and other products. Gold Canyon has some amazing NEW products out this season plus some new fragrances I am sure you're going to love! Some customer favorites for this season are Pumpkin Patch, Mulled Cider, Autumn Walk, Holiday Wreath, and Cinnamon Pinecones just to name a few. The Woodland Pod Warmer is one my favorites! Click the SHOP bottom next to Noah's Fundraiser under Parties in the middle of the page. 25% of all sales will go to support Noah! Please submit your orders no later than October 31st. Your online order will ship directly to you! Candles make great gifts for friends, family, coworkers, and teachers, so why not give them the very best!!!

Love,




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