Tuesday, April 23, 2013

Text-To-Donate Day

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Last week we went to Children's Hospital, Colorado for a car seat evaluation for Noah. We wanted to make sure that we knew what model was the right fit for Noah before we pursued finding funding for a specific product. Upon arriving we was surprised to learn that I was actually recruited as a guest speaker as a special needs parent to speak to various car seat products, what I liked, what I didn't, and some of the car seat challenges the special needs community faces. It was an Automotive Safety Program put on by Riley Hospital for Children, Indiana University School of Medicine. There were equipment makers, doctors and therapists present. We sat Noah in several models, some of which I had never heard of before, like the Roosevelt, who's maker was present and in the room.  I was very impressed that the Roosevelt has the potential to be customized to each child.  It's very rare when you find a product line that customizes.  Most offer one standard model, which isn't a great benefit to all children with special needs.  Each child will likely need various different features depending on their tone, head control, trunk control, recline needs, and sensory challenges. 
Ultimately due to Noah's size, weight and personal characteristics and needs we decided to try the Recaro Sport. We will be trialing it for about two weeks, and then deciding if we need to trial another or if this is the right car seat for Noah. I gained a lot of knowledge today about accessories, features and special needs car seat models. And received a lovely thank you card for my surprise appearance "Thank you so much for agreeing to participate in our class. You are truly an invaluable part to help others learn about safety transporting children with special needs. Staff at the National Riley Hospital, Indianapolis." Even though I was surprised about being a guest speaker and wasn't really prepared, I left feeling like somehow maybe my participation opened the door to some really positive learning about children with special needs and the products we need.  I feel more purpose in the special needs journey if I in someway feel like Noah's story is making a difference in the lives of others. 
Noah also got to try the Dynavox communication eye-gaze device this week. It's only a two week trial, which means he only gets to try it two times this week and next week before it goes back for a period of 45 minutes.  Which to me isn't enough time to really tell if a product is going to be the right match.  We also want to explore a trial with the Tobii Communication eye gaze and proximity switch, but his therapist reports that it will cost $400 monthly to trial each device.  There's simply no way, and I'm hoping to advocate a way around that.  And I have to know which device is the right match for Noah, as I only have one shot at asking Medicaid to fund it.  And who knows if they'd approve the request, or deny it based on the price.  I don't know. I suppose I'll cross that bridge when we get there.  Noah was able to track a ball using the Dynavox briefly, Monday.  So that's great, but I still think he's also capable of a proximity switch, he's gaining a bit more control over his arms. 

Circumstances for us have grown more difficult and we are struggling to pay for Noah's out-of-pocket therapy and equipment needs.   We applied for Wish Upon a Hero to attempt to locate help for Noah and they have given him a text-do-donate day.  April 24th, 2013 if you text "WISH" to 80077, you'll be donating $5 to Noah's Miracle.  I don't expect it to be a huge success, but we have to try.  Please consider donating $5 by way of text for Noah on April 24th (tomorrow).

Our friends at 501st Legion - Mountain Garrison also stepped in again to help Noah this year, after hearing about some of our current struggles.  We were invited to dinner, and met Deep Roy, the actor who played the Oompa-Loompa in Charlie and the Chocolate Factory, he also played in many movies including The Neverending Story, the Star Wars series, The Corpse Bride, Big Fish, the Pink Panther and many more.  He was so kind, loving and full of great humor.  It was truly a privilege to meet him.  And it made for a wonderful evening.  It's been a difficult year, and the love we felt means so much to us.  
Noah & Deep Roy

We took Samson, Noah's service dog in training (SDIT),  to Starfest to meet his 501st friends, and he did great.  There were a lot of people in costume loaded with distractions and he did great.  Samson was such the star that he even had his picture taken with the Gi-Joe Team!  He's on lesson three and we hope to move onto lesson four soon, he's learned so much and has a total of 10 lessons before he leaves home for extensive skill training and certification/licensing. 
Samson & The GI-Joe Team

Thank you all for your continued prayers for Noah.
Great Acts of Love are done by those who are habitually performing small acts of kindness.


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

Wednesday, April 10, 2013

The Littlest Team Member

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Today is National Sibling Day.  In the land of special needs sometimes people forget the entire family... mostly that special needs journey impacts us all right down to our littlest member Luke.  Luke turns two tomorrow.   A very fast two years filled with more challenges than our family should ever had to face.  Luke has become my sidekick in care, Noah's best friend and playmate, and without complaint learned more patience than any other two year old I know.   He willingly places his needs secondary, knowing just by watching that Noah has needs that require extra time and care. 

He is both accommodating and kind, side-stepping and playing with a brother that lays on the ground and cannot sit up, allows Noah each day to pick the DVD's of his choice even if it wouldn't be Luke's first pick, forfeits going outside to swing in the sun because he knows I only have two hands, not four...

Yet he doesn't harbor resentment or jealousy.  His tender innocence, unconditional love, and his caring ways shine like the same beacon of light that his brother shines with.  Hope.  Faith.  Love.

Outsiders looking in might say that it's an unfair design.  I suppose you could say that what has happened to us is unfair to the entire family, but most of all Noah.   But we willingly do all that we can as a family, even Luke, to do the best we can with our circumstances.  It's not easy on any of us.   We just are doing all we can for each other. 

The bond between Noah and Luke if you watch is a beautiful thing.  It knows no limits, no boundaries.  Just pure love.  The purest love you could ever know.   I have no doubt that Luke will do the best he can to include Noah in all things in life.   And Luke I know someday you'll be all grown going from age two to twenty-two in a blink of an eye.  And someday you might read this, and know how very proud I am of you.  You are such an amazing child and you are so loved and treasured.   You're a great little brother and Noah couldn't have asked for God to send anyone better to help him on his journey. 


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

Thursday, April 4, 2013

I See You

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I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful.

I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous.

I see at the therapy office programming your child’s speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button, I hear the computer’s voice say, “I farted.” You are funny.

I see you at the support group. New parents are visiting with their baby, they seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won’t always be easy, but it will be good. You are compassionate.

I see you walking into the school for the third time this school year. A binder full of notes, lists, and goals. Your don’t feel your child’s team is following the IEP, and you won’t give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.

I see you at the hospital, a place you are too familiar with. Tubes, machines, tests, and specialists. Your child’s feeding tube is the least of your concerns. You are brave.

I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible.

I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are after a baby comes home. You are generous.

I see you at social gatherings where well meaning people ask ignorant questions about your child or her disability, they make hurtful comments, or fail to recognize that your child is a child first. You don’t get angry, you don’t yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner and thank them for their concerns. You are gracious.

I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable.

These qualities you display are precious gifts you give to your child and to those around you, they don’t go unnoticed…I see you.
By:  Ellen Stumbo

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

Monday, April 1, 2013

The Easter Egg

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Noah didn't have the easiest of Easter holidays.  He was irritable and moody throughout the day.  Holidays are extra hard naturally when you have a child with special needs.  They tend to represent all the traditions you wish your child could participate in, but can't.  Things like dying Easter eggs, joining in an Easter egg hunt, or even attending a Easter morning service.   There was no basket of endless Easter candy, chocolate bunnies, no discovery of the pastel Easter eggs that Noah's little brother dyed.  Noah's basket instead was filled with DVD movies and clothes. 

We used to have this childhood tradition of cracking eggs on Easter, two people would pick and egg and one chooses who hits the other, leaving one egg the perfect condition who celebrates victory, where the other egg participant clearly is defeated into cracks.  This year all of my eggs were defeated and cracked.  Not one could I win, yet I kept trying.  Much like Noah keeps trying.  I don't know how to give up.  And it's not because I am strong, not because I'm not a quitter, it's because I see this little boy before me, who fights harder than anyone I have ever witnessed fight in my life to do the simplest things.  To touch his face, to kick his legs, to roll to get to a toy.  But he keeps going until he does it.  And if he can do it, then I can do it.  I have to.  Giving up is not an option for either of us.

Noah's determination is endless.  And because of him I get up each morning and continue to fight for him in all the way I know how.  I have so many unanswered prayers.  And sometimes all of those unanswered prayers have caused me to question why I'm not worthy of God hearing my pleas for help for Noah.  I don't question His existence, I don't question the power of prayer, I don't question hope and faith in all things possible.  But I keep waiting, patiently for things to turn the corner and asking myself why He isn't listening?  Sometimes I wonder if He is providing gentle reminders -  sending people into our lives to to lift us up to show us we're not as alone as we feel.  We'll receive a tender card in the mail addressed to Noah telling him just how much he's loved and cared about, formula will arrive in the mail knowing that Medicaid temporarily denied him, and even today Noah received a very special package that someone registered a star in the universe named after him.  In all the darkness I cling to that love like a beacon of light, encouragement, hope and faith that if we keep going... if we can just keep going that the Noah's Miracle will get there.  That somehow, someway, we'll be able to help him. 

On the equipment front, It was determined that nothing further could be done to modify Noah's Mygo Leckey Hi/Lo Base Feeder Chair.  We've tried all the modifications we could to make it fit without success.  Thankfully, the equipment vendor is exchanging the chair for the smaller version, the Leckey Squiggles.  Noah will likely outgrow it sooner than later, but we need a chair that fits now, and I'm relieved and hopeful that the right chair is on its way.   I was also very excited to learn that after six months of trying to get a product trial of an adapted chair manufactured in the UK, that it is on its way for him to trial.  But as excited as I am, and as hopeful as I am that this chair will be a great fit for Noah, it's still deemed as alternative seating and most likely will face yet another Medicaid denial.  The basic price without accessories that Noah will likely need is $5,300.  These price tags are so hard to think about.  And that's just one item, there is a list of items I keep of things that Noah either needs or that would allow him to participate in the world with his family.  It's such a fallacy that the government picks up the tab for children like Noah.  It isn't at all like that.  The out-of-pocket costs are astronomical. 

It makes my head spin, my heart ache with sadness and keeps our account permanently in a negative balance.  And yet the dreams of providing for Noah continue...


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