Change Challenge

To say that Noah's hi/lo base feeding chair has been a huge challenge this week feels like an understatement.  I called the equipment vendor Monday to arrange for help in fixing Noah's broken harness.  The secretary was incredibly rude and short with me, and abruptly told me to go out and buy an industrial size sewing machine and hunt the part myself; in addition she further recommended that I tie up Noah with a t-shirt for support in the meantime - after all she said that's what she tells everyone to do.  I told her that wasn't an acceptable solution for a chair that was only a few months old that should be covered under a warranty of some kind, nonetheless a huge safety issue for a child like Noah, and asked to speak to her supervisor.  I was transferred to a technician who assists and he eventually came out and replaced the piece on the harness and made some modifications to the chair (as it was ordered in a size that was too big for Noah).  Which meant that they needed to raise the foot rests, and find a way to pad the back to make it smaller so Noah's body wouldn't side forwarded from the extra space that was there.   A new hood came into play, they cut the foot rests shorter, and added a very hard foam block behind his back.  Noah was also self-injuring his arms on the rests due to his high tone so I ordered these really cute dog arm chair rest covers in a desperate attempt to make them softer for him.  And now to say the least Noah absolutely HATES his chair.  Hates it.  Something that was working now has become a nightmare, and I have to figure out how to piece it back together the way it was.  I'm sad and frustrated.  This chair only a month ago was a dream come true, and now that it's been tinkered with and broken, it's now become a huge headache.  The soonest that they can come out again to try to put it back the way it was is in a couple of weeks.  So in the meantime all I can think to do is try to dismantle it myself and put it back together again the best I can.  I'm not a pro, but I'll have to try. 

Noah's Chair Before

Noah's Chair After

Sometimes I really wish that it was a per-requisite to any place of employment that assists anyone disabled or with special needs to actually shadow a family like ours for a week.  To truly understand our trials, how hard just one day can be for us, to have a better understanding of how just one kind word can help us, one ounce of help and we're forever grateful.  I admit I was hurt when I spoke to that secretary on Monday.  We just needed a little understanding, compassion and help.  But the world isn't like that - especially when it comes to having a special needs child.  I don't expect that we'd be given preferential treatment, but love, care and kindness can go a very long way.

Noah's sleeping hasn't improved and we're on week two now of his new sleeping schedule.  And I keep thinking maybe our only saving grace will be the time change next month.  We're still at a loss for why he's suddenly fallen back into an odd sleeping pattern.  And even with what feels like lots of lack of sleep he's still very chipper through the day, with only the handful of typical meltdowns because he wants to play with his train or watch a different movie. 

Today is my birthday, (a really unimportant detail in the circumstances of our lives) - the only great thing about it is I get this wonderful yearly chance to make the biggest wishes I can for Noah.  They will always and forever be for him for the rest of my life.  I have nothing else to ever wish for.  And Noah really does love it when people sing happy birthday.  He loves birthdays. 

Love,




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

Talk to Me

Noah has had a long period of really sleeping rather well through the night, but the last few weeks have been very difficult.  He wakes multiple times at night, squealing and demanding we get out of bed to tend to him.  We of course offer him a bottle, even though we know he doesn't want it, but gets more upset if you don't offer it.  You'd think he'd be very tired from being up many times in the night, but he's even starting to wake up earlier and earlier.  We go through a thousand things in our minds to try to trouble shoot things; is he sick? tummy ache? muscle aches? too cold? toddler bad dream?  And you find yourself lying there in bed just praying to God please just let him talk and tell me what is wrong.  You feel like somehow you should be equipped with some sort of telepathy and brilliant insight as his parents to figure it all out, but we just can't.  I know that Noah does have a tendency to change sleeping patterns seasonally, and maybe he's better than any groundhog out there and is simply telling us Spring is on it's way.  Whatever the cause, we're exhausted and hoping that Noah will again resume a great sleeping pattern soon.

Noah & Samson

We also recently learned of new complication to Noah's cerebral palsy.   An x-ray of his hips shows that his right hip is starting to migrate out of socket.  While his left is doing okay.  It's still early to know what this all will eventually mean for Noah.  It sounds like we have some time, to see if the hip situation will improve or at the very least not get any worse.  We're going to try a swatch brace, which we hope Noah tolerates well and work on positioning him better with his legs.  We are happy to report that his spine looks great.  In addition to the news of Noah's hip we also learned that Noah was given the label failure to thrive.  Which means he's not on growth charts for weight.  Something that also is common which children who have althetoid cerebral palsy movements who aren't able to really keep their bodies still.  So we're hoping with the assistance of a nutritionist that we'll be able to find some ways of adding additional calories to Noah's diet.  

On the equipment front, all was going beautifully with Noah's hi/lo base chair until the equipment vendor came to make some modifications because it was still "too big" for Noah.  They shortened the leg rests, which was great, however the headrest still wasn't what Noah needed, and I had to take out the extra padding that was added so Noah's neck didn't fall backwards.  As a result the side laterals are too far apart and he's now self-injuring his poor little wrists under the arm chair rests and getting his arms stuck at his sides.  And the icing on the cake was during dinner when his harness strap just flat out broke out of the blue leaving his head leaning to one side tonight.  I'm praying for a quick fix and that the equipment vendor having spare parts of some sort because the idea of having to wait for Medicaid approval for a replacement is terrifying... nothing moves fast in the world of waiting approval on parts.  Everyday is filled with tons of challenges when you have a child with special needs. 

Noah's Broken Hi/Lo Base Chair Harness

Noah's little brother has been wanting to give me an extra set of hands lately, something that is rather bittersweet.  Such a tender young age to recognize that your older brother has significant needs, and lacks the ability to do things that can.  Luke wants to bring him toys to play with him on the floor, wants to help me hold his bottle and even try to assist me with taking his diaper to the trash.  And while I love his beautiful and loving attention to Noah, a part of me can't help but be sad that this is our family dynamic - that his little brother has to bring him toys so they can play together.  I read this quote the other day about brothers I seen in a magazine.  I cried for a long time, there are just certain things that tug at my heart always: 

"My brother is my friend, he is my heart, he is my world.  He has my heart.  We run, we cry, we play, we laugh, but at the end of the day he will always be my friend but mostly my big brother is here to stay." Allyjah Cutts

Every bit of it is true.  Noah is the center of our universe, he is the very heart of our family.  He means everything to all of us. 

Love,




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

Noah's Personal Victory

After many weeks of illness and two rounds of antibiotics we're hoping we are all finally traveling towards the road to wellness.  We have a little ways to go, but are getting there.  This germ certainly didn't discriminate as it went from family member to family member.   We're very ready for spring, warmer weather and a break from germs.   Spring fever probably started the day after Christmas was over. 

Noah got a Personal Victory Award from hippotherapy.  It was such an awesome surprise to receive in the mail.  Noah's very first award actually - next to his medal that he got for his bike race last August.  This is a really big achievement for Noah.  When we started at hippotherapy his head and trunk control was limited - and now he's just soaring with improvements.  And it's so nice that others recognize Noah for all of his hard work and how far he's come.  He's such a little superstar.  He never gets discouraged he just keeps trucking right along.  Noah just becomes more engaged, focused and determined by the day.  We can't wait to frame his new accomplishment. 

You are tapping independently for "walk on" and you are working on "woah" (Verbally) Your ability to hold your head up up has improved with ease each session. You participate in every activity looking at what you have done and using your hands .

Noah's Service Dog in Training, Samson, made his first debut in public last week.  He did really well.  He's following his lesson plans and we hope that he'll be able to pass lesson one soon and move onto the second lesson out of ten lessons he must pass before leaving home to obtain master skills and certification.  It's more work that I originally had thought it would be, but at the same time I'm glad that we're trying to go through the program as a puppy to allow Noah a chance at bonding earlier.  It certainly is like having three small children in the house, none of which are completely potty trained yet.   Samson already has fallen into helping the family as he alerted us to a teeth infection that one of our other dogs had that required oral surgery. So he's very observant and most of all a very patient puppy.   And most of all he's very eager to please which is a beautiful quality when you know this dog will one day play a very big role in Noah's help and care.

"Everyone has their own special gift.  In some it's speech, in some, silence.  The world has need of small perfection as well as great achievements."

Love,



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

The 4th Year of Noah's Miracle

The end of 2012 has been a little bumpy. And in addition Noah has indeed caught his brother's croup. But no matter what lies before us or behind us we are blessed because we have Noah in our lives. Thank you to all that have continue to pray so hard for Noah. Wishing you all a New Year filled with lots of love, memories and blessings.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Love,



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

Nana Goes to Heaven

Noah's great-grandmother passed away yesterday.  The loss of a family member is especially difficult as we don't really have a lot of family and friends who love us enough to be able to cope with our circumstances.  She had a short battle with an illness that she got right before the holidays and she just couldn't fight it.  I had really thought she'd be okay so it was rather sudden as death sometimes is.   You always want that one last goodbye.  That one last chance to say I love you.  That one last Christmas card to each of the boys that didn't come this year because she was ill... she was a good great-grandma.  She was just as proud of Noah as if he had been born without a disability.  She even braved the butterfly pavilion with us when she visited last.  Something that I'm sure was hard for her to do because she had such a big phobia about moths and bugs that fly.  But she did it anyway and was a really good sport about it to be with Noah and doing something that he loved to do. 

Noah meets his great-grandmother for the 1st time

Butterfly Pavilion Bliss

Grandchild, please don’t mourn me I’m still here,
though you don’t see.
I’m right by your side each night and day
And within your heart I long to stay.
My body is gone but I’m always near,
I’m everything you feel, see or hear.
My spirit is free, but I’ll never depart.
As long as you keep me alive in your heart.
I’ll never wander out of your sight,
I’m the brightest star on a summer night.
I’ll never be beyond your reach,
I’m the warm moist sand when you’re at the beach.
I’m the colorful leaves when Autumn’s around,
And the pure white snow that blankets the ground.
I’m the beautiful flowers of which you’re so fond,
The clear cool water in a quiet pond.
I’m the first bright blossom you’ll see in the spring,
The first warm raindrop that April will bring.
I’m the first ray of light when the sun starts to shine,
And you’ll see that the face in the moon is mine.
When you start thinking there’s no one to love you,
You can talk to Grandma through the Lord above you.
I’ll whisper my answer through the leaves on the trees,
And you’ll feel my presence in the soft summer breeze.
I’m the hot salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I’m the smile you see on a baby’s face.
Just look for me, Grandchild, I’m every place!

Love,
Nana

Nana, you'll forever be in our hearts, and please look out for Noah; he needs all the angels he can get.

Love,



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

Noah's Big Gift

Noah's 4th birthday was just as beautiful as his first.  He had a Shrek Birthday themed cheesecake and his Service Dog in training arrived.  Meet Samson!

Samson - Noah's Service Dog in Training

A Happy Birthday Boy

Noah's Shrek Cheesecake

Samson immediately responded well to Noah - it is truly a perfect match.  Samson is very easy going, gentle, loving and wants to be where Noah is.  They are off to a beautiful start.   We weren't sure how our other two dogs would adjust but we're so happy to report that within less than 24 hours everyone are best friends.  Samson has a lot of training ahead of him in the first year and then he'll leave home after a year old for extensive skill training, which I am sure will be hard on the entire family - especially Noah when he leaves home for a while.  But in the end the reward will be so great.  Noah had a really great day.  He loved his balloons and loved his cheesecake.  It was a day full of lots of love, laughter and smiles.  We remain so thankful for all the help and kindness that made Noah's Service Dog possible - and it couldn't have been more perfect for him to arrive on his birthday.

We were so touched by all the birthday cards Noah received.  Especially from Cole's Foundation.  They are the most loving group of people ever.  They continuously lift us up in love and prayer in lots of caringbridge guestbook posts, and they love our Noah tremendously.  He received the most precious birthday cards from other little children from the Cole's Foundation and they are so sweet that they bring tears to your eyes.  I save each one in a hope chest for Noah.  So he knows someday how many people love him and cheer him on everyday of the year!  They are so special to us.  It's tiny things like a card that we hold so dear to us, just to know that he's loved and that we're not alone.  We're so thankful for our friends at Cole's Foundation!

Noah had an equally wonderful Christmas.  He loved alternating sitting in his daddy and grandmother's lap to open presents.  He was full of excitement and joy. And he finally was able to open all those presents he had been trying to get to for several weeks.  I don't know that Noah has a favorite present.  He seems to be enjoying looking at everything that is so new to him.  I think he had grown bored of his toys all year so it was nice to be able to pack away his older ones to make room for newer ones for him to play with.  And his interests are changing.  He's no longer a baby so some baby toys just bore him.  That's the tough balance you find when you have a special needs child is finding somewhat age appropriate gifts but gifts that Noah can also find a way to play with at the same time.   But it's great that they make so many neat toys these days like cars that drive themselves.  Noah loves that kind of thing - any 4 year old would.

Excited that Santa Came!

Noah also dodged the Christmas Croup that his little brother contracted shortly before Christmas.  Thankfully Noah remained healthy, although I worked very hard to keep the two boys apart for many days.  Something that wasn't easy since they have become like peanut butter and jelly to each other. 

And now we look forward to another year full of lots of blessings and continued miracles in Noah's life.  He continues to do great things and we are so proud of him.  We have a feeling the new year will bring even more amazing things!

Love,



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

Happy 4th Birthday Noah!

Dear Sweet Noah,

4 Years have gone so quickly.  You continue to be one of the biggest blessings we've ever received in life.  Your laughter warms my heart and makes me smile.  Wishing you the best and most beautiful birthday a child could ever have.  We love you to the moon and back.  May all your dreams and wishes come true.

Love, 



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