Friday, December 31, 2010

The Second Year of Noah's Miracle

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"A new year is unfolding—like a blossom with petals curled tightly concealing the beauty within.

Lord, let this year be filled with the things that are truly good—with the comfort of warmth in our relationships, with the strength to help those who need our help and the humility and openness to accept help from others.

As we make our resolutions for the year ahead, let us go forward with great hope that all things can be possible—with Your help and guidance."

A New Year’s Prayer
May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.
Anonymous

Love,

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

Tuesday, December 28, 2010

Noah's 3rd Christmas

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Noah had a really good Christmas. It was especially magical this year with all of help from Santa's Elves that came from all different places to make sure Noah had a wonderful Christmas. Noah still was fussy over opening presents, maybe it's the noise or the crunch of the paper or the frustration knowing he can't do it. Some of his gifts were an automatic hit, while his daddy and I are trying to slowly get him used to the original Tickle Me Elmo. As soon as that Elmo hits the ground he screams with fear. Sometimes it is just so hard to know what Noah can handle sensory wise and what just blows his senses to pieces. We're still hopeful that it all will get better with time. But it's hard sometimes to watch your child be frightened of certain toys or not be able to play with the majority of them without your help. Sometimes you just want to cry because you just can't fix any of it for your child. Balancing that feeling of helplessness and hopefulness is tricky.

Noah spent the morning watching Christmas paper be tossed around and his new DVD's. Hopefully with each passing year he'll be able to participate more and more. I fixed just a tiny little dinner for us, and we had Noah's giant cake that we'll probably be eating the rest of the week. We're looking forward to the new year. There is something always interesting about the idea of the new year being able to bring about wonderful things. I have no resolutions, only a million wishes. But I don't think it's customary to get wishes granted upon New Years. Yet I'll toast to my sparkling pear juice probably around 9pm since I drop early, and still cross all my fingers and toes that we'll find a way to make it through the new year, provide for Noah's therapies, and that the year will be filled with new beginnings for Noah. Maybe this is the year he will learn to sit, or even army crawl or say a first word... wishes. But it's all up to Noah and I just have to follow his lead. We will open a book. All of the pages will be blank. We are going to put words on them ourselves. The book is called "Hope" and its first chapter is New Year's Day.
"And I said to the man who stood at the gate of the year: Give me a light that I may tread safely into the unknown. And he replied: Go out into the darkness and put your hand into the hand of God. That shall be to you better than light, and safer than a known way." Minnie Haskins
Love,

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

Friday, December 24, 2010

Noah's 2nd Birthday

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Noah had a wonderful Birthday. I think he kind of knew in someway that the day was about him. I dressed him up in an Elmo shirt that a friend had sent us in a care box of clothes to match his themed birthday. We went to Das Meyer and picked up his cakes, his baby cake for his birthday, customized with chocolate mouse filling and whipped cream topping, and natural dyes so he'd be able to eat some parts of it. And a Christmas cake for his 3rd Christmas. It was so wonderful because the bakery remembers Noah from last year and his first birthday cake. I got a big hug from the girl who helped me to the car with his cakes. Along the way you just get really attached to those who have these amazing hearts. They become like extended family. I got Noah three little Elmo balloons for his birthday. Elmo items can be quite costly so he didn't get the great big ones they had, but I know he was totally thrilled with even one Elmo balloon. He watches them sway back and forth.

We sang happy birthday twice for Noah (because you could see he wanted an encore performance). And then just when we told Noah to blow out his candle it went out on it's own. Just like that. Maybe an angel blew it out for him because he couldn't do it himself. It was one of those moments where you just wonder did I really just see that happen? Noah smiled as he put one hand in his cake and smeared it. His daddy trying to show him that his hand was yummy and putting it to his mouth. Noah still doesn't quite understand the relationship to hand in mouth, even with whipped cream on it. But that's okay, we're still here to help him.

We all shared in some of Noah's itty bitty cake. We opened presents for him, I thought maybe the wrapping paper would keep his interest but it didn't. He may have been frustrated too that he couldn't do it himself. It's hard to tell. But as soon as the presents were out and about he was thrilled.

Noah's buddy Bill and his wife Marge stopped by too to wish him a happy birthday. It always feels complete when they come to visit little Noah. And it's always so nice to visit with them. Noah always smiles at Bill, those two will always have a connection. Overall it was a blessed, calm day. Thank you to everyone who sent him well wishes & birthday cards, we keep everything for him in special little keepsake boxes so he can know one day how much people around the world have been cheering him on. All that positive energy bundled up I'm sure will make the biggest difference in his life one day.

Tonight Noah gets to sleep in his Elmo Christmas pajamas and wait on Santa's arrival. I think he's been an extra good boy this year. God bless and to all a good night.

Love,


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

Thursday, December 23, 2010

Happy 2nd Birthday Noah

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My Sweet Dear Noah,

Happy Birthday Noah, you are two years old today.

Two years ago today, you entered the world and blessed our lives. As you turn two, you still cannot sit, crawl, walk or talk. I have yet to hear a first word, watch you clap your hands, or take your first steps. You still cannot hold a bottle or eat foods other than purees. All those milestones that parents look forward to, we have yet to experience. But we’ve traded them for something far more precious. Something that many would never understand. We are gifted with your life. You are still present and here with us, what a treasure. The world would be dull and my days would be so dark without you in it.

Your smile and laughter brings a special kind of love to all that know you. You’re teaching us so much about life, about what hope and faith really means. How you can’t give up. I watch each movement you make and the struggle it is for you. The simplest things that we all take for granted. It is something I cannot give you. Something that I cannot teach you. You have become my teacher. Teaching me patience and faith in all things yet to come. Yet despite all your challenges sweet Noah you don’t seem to dwell on your physical situation. There is not sadness in your eyes, you are happy. I know you realize now that you are limited, but you keep trying I see you thinking of ways to get around your physical limitations.

We celebrate you today and get ready to also celebrate your 3rd Christmas. We celebrate how far we’ve come. We recognize and give thanks for all the days, minutes and seconds we’ve been gifted with you in our lives. A little boy that no one thought would make it, a little boy that would have no quality of life, a little boy that fought against all odds with the help of the power of prayer. A team of angels gathered for you, I still suspect you see them. I simply cannot. But I know you tell me something is watching over us. I see it with your eyes. Those precious blue eyes that are as crystal clear as your daddy’s.

Your daddy and you continue to bond into this beautiful father-son relationship, and I’m so privileged to witness it. He loves you beyond all measure, he never waivers not one second in the possibilities that lay ahead for you. He tells me all the time he wouldn’t trade you for anything. He comforts me on the days I have fears for your future, telling me all will be okay because we’re a family and we’ll always be together.

We only can take things a day at a time, but I’m so glad that my days are spent with you. I don’t mind if we go to a thousand therapies, or if I still have to hold a bottle for you, or snuggle you tight to comfort you. I’d do anything for you. This love knows no limits and has no end. We’re so blessed to be your parents. I couldn’t ask for a sweeter little boy. A precious little soul, with so much love to give the entire world.

Happy 2nd birthday, we love you so very much.

Love,
Mommy


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

Sunday, December 19, 2010

Draw Strength from Heaven

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Noah has had a pretty decent weekend. You can't really tell anything happened, although I've been guarding him like a mother hawk. I have yet to get my center of gravity back and although he seems to be doing fine I feel like I simply am not. Maybe I was overly confident that any types of emergencies would skip Noah. I can't seem to shake those terrifying moments, and I keep seeing him gasp for air and making these sounds in my mind. Replaying it over and over to figure out the cause. I'm hoping it was a one time fluke, something that won't repeat itself. I honestly don't know how parents handle witnessing their children in a medical crisis on a regular basis. My heart aches for all them.

I'm still trying to recapture the Christmas spirit that had come so easily and happily this year and getting ready for Noah's second birthday. We went to a church Christmas play with Noah's buddy Bill, Noah of course did really well, but Noah seems to really like church atmospheres. Chris and I always try to make light that Noah got thirteen more minutes of a conversation with God then we each both got. Sometimes there are just qualities to Noah that are unexplainable, but like my older brother reminds me, it's in Noah's eyes that there is something he's been gifted with. A secret perhaps? I don't know. I hope he's able to tell me one day. He often has a variety of heavenly expressions that make you melt and feel complete peace.

I've spent hours watching Noah sleep in the last few days. I suppose I'm a bit exhausted and worked up. With time I'm sure that will get better, the scare is just so fresh, and it had this ripple effect - this painful reminder and feeling of those seventeen days in the NICU. The smells of hospitals come back, the sounds, the people. It's forever haunting. And no less at Christmas time just like it was at Noah's birth. The darn tinsel and garland hanging at nurses stations. The Santa hats here and there. Listening to the still of machines and intercom noises.

These amazing collection of Secret Santas that have gathered for our family this year, have made the world of difference. Sweet messages arriving in cards, a beautiful pocket prayer quilt... tender little gifts of love - they're all coming at the perfect time, words I need to hear just on that particular day. There's nothing really else to explain it - other than it's a God thing. It's one of those life experiences that you just will never forget - that special Christmas when people all over the world cared and prayed. What a comfort it has been the last few weeks.

Thank you for all those that continue to pray for Noah, that he'll continue to grow stronger in the years to come, that he won't have any more scary episodes of any kind.

"I believe in prayer. It's the best way we have to draw strength from heaven." ~Josephine Baker


Love,


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

Thursday, December 16, 2010

Noah's Medical Emergency

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All should have been calm, all should have been right. It was nine minutes until 10pm when I checked on Noah and Daddy who were working on cuddling to get Noah to sleep. I walked into our bedroom, only to hear moments later what sounded like choking. I was only steps from Noah's room and I flipped on the light knowing something was terribly wrong. Chris had Noah cradled in his arms trying to sit up upright as much as possible. Noah was gasping and making this scary sound, he would not focus on me, I could not get his attention he just looked off to the side. I thought seizure although I've never seen one before. We keep a phone in Noah's room and I dialed 911 immediately. Of course in my panic I explained Noah had a head injury - cerebral palsy and I thought he was having a seizure. In my mind I think it still took forever for someone to get to us, but I know they were fast. It was just that time slows in a crisis. I started to panic and cry. I was beyond terrified. I shouted out to God, please don't do this to me, I've tried to be all you want me to be, spare us this pain please. Noah continued not breathing well, and still wouldn't respond to either of us when we got him down the stairs.

There were too many paramedics and fire department people for me to even count. I rushed him into the ambulance with no shoes, no coat, I felt nothing but numbness in my whole body. They attempted to give Noah oxygen, they were of course trying to ask me a million questions when I was pulled away because the dispatcher had misunderstood my call and called the police thinking Noah acquired his brain injury that evening and that we had caused him abuse. So they wanted to speak to Chris and I, thankfully I called Noah's grandmother who stayed with him in the ambulance while Chris and I clarified Noah's condition and what happened to him. When I got back to the ambulance I could hear him crying. A good sound. I wanted to know he was still here with me. They were attempting to find a vein for an IV but were unsuccessful and just gave up attempts but did manage to take blood for blood sugar testing. Although his grandma and I both agreed Noah wasn't paying attention to us at first, paramedics said typical seizure behavior is different. That children usually roll their eyes, or stiffen or jerk and shake. Noah did none of that he remained limp in our arms the entire time. They suctioned out secretions in his mouth and his temperature was low at 96. We chose to go to the nearest hospital we could with the option to transfer to Children's if things worsened. Thankfully the ride was only 6 minutes long as Noah still isn't a great traveler and it often shows. Noah started to improve in those 6 minutes he started to focus on me, I got a smile from him, I seen him react to bumps and his breathing returned to normal.

Paramedics suspect maybe he was choking which caused a lack of proper oxygen which caused Noah's slight disorientation and non-reaction as they said they could still see he was "home" something they say isn't really typical for a child that is seizing. This of course is all so new to Chris and I. We have been so lucky we've dodged an emergency call for nearly two years. Something we both knew could happen at any time given Noah's medical history and problems. Chris tried not to cry, but I could see is face swelling with fear and his eyes filling with tears. We were the most two distraught parents one could probably ever see.

I went back to that place after Noah was born, the moment they tell you your child didn't breath for 13 minutes of have a heartbeat for 13 minutes. That place where you sink, your soul breaks and your mind and heart snap at the same time. You relive it over again in some way. All those feelings rushed back, I've suppressed them all for so long, knowing they'd always be with me. Always worried that something like this could happen.

Noah was still responsive and growing irritated and tired when we arrived at the hospital. They said blood work would likely tell them nothing, but they ran a chest x-ray to make sure that Noah wasn't suffering from silent aspiration a potential cause of his breathing difficulties. We waited for hours for the results only to find out that radiology was so backed up. So they read a preliminary one saying they thought all looked okay, and would release us home and if radiology found something they didn't they'd call us immediately.

Even though it was already the early morning hours when we released Noah woke up from a small sleep to still be happy on the short ride home. Thankfully his grandma and grandpa stayed with us the entire time. I don't know what I would do without them. I simply cannot do this alone. They followed us home because our warning light came on telling us we had a low tire. It's like one little problem after another. Such as the story of life goes. However the car tire is the least of my concerns.

Noah didn't want to co-sleep with us. So Chris slept on the floor close to him. I listened from the baby monitor to both of them. Waking up several times to Chris snoring but I had to make sure which person was making sounds. I had to feel Noah side to make sure he was breathing okay. That's what a scared mommy does. We both are feeling quite emotionally and physically drained this morning I plan to cancel Noah's therapies today and do nothing but watch him. Chris stayed home from work today, as he wouldn't be a safe driver with really no sleep. However, I suspect he has no more time off to take and won't be getting paid for today. I feel bad that life offers us up both these unexpected things all the time.

I pray this never happens again. Chris and I are trying so hard to keep Noah healthy, alive and well. I hate seeing my husband so scared and terrified, I hate feeling like my heart is being torn again from my chest. Noah is everything. I love that child beyond words. I can't lose him. I need him to feel whole. Once you have a child like Noah your entire world changes, how you do things change, how you perceive situations and things change, your sensitivity and emotions are always on your sleeve, you remain raw and exposed to the world.

I'm so thankful Chris was with him and got him upright immediately. He is the very best dad God could have ever sent me for Noah. He is so attentive, so loving, so kind and gentle with Noah. Chris calls often times just to check on Noah and hear him on speaker phone through the day just to know we're both okay. We're never off his mind. There simply isn't a better man out there, and I'm blessed to have an amazing husband and father for Noah. We're both in this together for better for for worse. Sharing the same fears and pain.

Thank you all for thinking of us and praying that little Noah stays well and does not suffer any more medical problems. I want that to be the last time I need to call for help. Hoping that Chris and I can regain a calm center of focus to get us through the holidays and Noah's 2nd birthday. Even though both of us I know will be on guard and a bit of pins and needles for a while since the fear of last night is so fresh to both of us.

Love,


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

Thursday, December 9, 2010

Beary Merry Christmas!

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This week as usual there have been a those occasional bumps in our road, but somehow the Christmas season, the Christmas cards, the special little Secret Santas in the mail, the smell of pine, and a waive from my neighbor that lives at least ten houses down makes everything feel like it's filled with peace, love and joy.



Everyday Chris comes to me and says is there something in that package I can use? And yesterday he got his answer. A cotter pin was at the bottom of a shipped box probably just by mistake and he picked it up thrilled like he had just been shopping in the tools section at Sears. I of course had no idea what a cotter pin was until he explained it to me, but I played with my Christmas towels and Noah's goodies and he walked around with this little cotter pin. It doesn't take much to thrill us, and honestly he really did love finding that cotter pin, and I got a great laugh. A sweet ending to our day.

Noah's on break for a little bit from his sensory class, occasionally we have a few new students that come in just to observe to see if it is a good match for them. Noah does relatively well with new people, he has to observe a lot just because he has no other way of really physically participating on his own with these other children. He tried a jumbo knob puzzle for the first time in class while sitting on my lap and it was the first time I thought that Noah was purposefully trying to pick it up and put it back in a spot. I'll have to look for one maybe for his birthday. I'm hoping it's not a specialty store that I have to order from. It was a 4 piece puzzle set, with an Elephant, Zebra, Giraffe, and I can't remember what the 4th animal was, but the knobs were big like drawer knobs on a child's dresser. I'm hoping that I can find something like it at Wal-mart or Target that is inexpensive. He seemed to be interested in it. And I'm always trying to find things that Noah seems to find fascinating. And it's great practice if he'll do it for his hands since he still cannot hold things or grasp items for more than mere seconds.

After Noah's pool therapy today, he got to meet the real Santa Claus. He was visiting just for a short while and came to watch him work in pool. He had such loving eyes, perfect little glasses, naturally rosy cheeks, that gentle beard, and the ho ho ho that gave you tingles down to your toes. Noah loved him. I loved him. It was like a moment out of a storybook come to life. Of course I had no camera with me, so only Noah and I will be able to hold that memory. But it was sweet. Santa gave him a bag of candy to share with his daddy, and told him how proud he was of him. Noah looked up and smiled as if he understood. It was one of those mommy moments where you get all teary because your child is just plain happy. It didn't matter that Noah couldn't hug, or sit, or walk or say thank you Santa, it didn't matter because their hearts touched and connected. Its the little things that tug at my heart so, all I have are the little things, but to me they are the biggest treasures God could have given me.

I finally finished our family Christmas cards, it took me a bit longer than I had hoped. Wishing you all a very happy and bright holiday season.

Love,


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

Saturday, December 4, 2010

Tri-City Elks Christmas

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Noah in one of the Biker's Hats from Tri-City Elks
Santa Arriving

Santa Greeting All the Children


Tri-City Elks Christmas


Santa


Noah's gifts from Santa


Today Noah got to participate in a very special event hosted by the Tri-City Elks. Santa arrived at his therapy school on his sled that was being towed on a trailer behind a truck with motorcycle escorts. It was reported that Santa was texting and sledding to check on his reindeer and to advise us of his estimated time of arrival. He's got access to some really great technology that he didn't have when I was a little girl! It was quite the event. We all met at the school and did a caravan through town as the Tri-City Elks on motorcycles even stopped traffic for us. It was the only time I think I've ever intentionally ran a red light, with being waived on and it felt so strange! Most traffic was nice about it, but there were some that didn't quite understand what our caravan was about, some I think even thought it was a funeral procession as they pulled over to offer a gesture of condolences.

One of the Tri-City Elks even gave Noah his hat temporarily to keep warm while we were greeting Santa on his sled. You could immediately feel the love and big hearts they had. They are an amazing group of people. Noah loved the action, and the motorcycles. They served all of us hot dogs, sloppy joes, chips, hot chocolate and lemonade for lunch. It felt so neighborly and you felt loved by all when you were there. Santa came in and gave presents to each child in the family that was there, one by one they were called up to receive their special gift from Santa. Noah did pretty well, but was approaching nap hour when he met with Santa today. Maybe he already thought he had told him all he need to tell him the other evening. But he didn't really want much part of Santa today. Just everyone else, as he flirted and smiled to get attention. Santa must have thought Noah was exceptionally great this year, as he got a kissing Elmo, and a toy that lights up and roars.

It was so nice of this organization to do this for for families like ours and our children like Noah. For every mean heart that exists it seems there is a hundred more out there to make up for it. They made a very special day for us and for Noah and so many other families. It really felt like what Christmas was all about. And driving home I just silently thanked God for allowing me this day, allowing me to wake up and breathe this beautiful air, to have the gift of my son's life, no matter how many difficulties we have faced in the past, are currently facing or will continue to face in the future. The feeling of overwhelming love from strangers makes you feel like you are very far from alone.

Noah and I have also been receiving treats in the mail this week from what we can tell is multiple Secret Santas in multiple states. We can't figure out where they are all coming from, as the handwritings are all different and the postage stamps are from multiple states and areas. Nonetheless, to all of you out there that have somehow coordinated this, thank you. These tiny daily treasures mean so much and bring us so much joy you can't imagine. It's like a piece of daily sunshine and it's the first time in two years we've looked forward to opening our mailbox! God bless all of you for your kindness and love.

I wish I could just hug all of you out there on behalf of my family and Noah. These last few weeks have been so uplifting, and so comforting. I hope to bottle up all this joy you all are bringing us to get us through all the tough times that still lay ahead.

Many blessings & love,



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

Thursday, December 2, 2010

Santa Comes on the Fire Truck!

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The Fire Truck
Nice to Meet you Santa

Telling Santa his List
Very Happy to see Santa
Letting Santa Hold me




Santa

Santa came for Noah on the fire truck last night from the City. This year he didn't squeal and cry in fear. He was a little unsure of Santa at first. I think touching his beard by accident may have sent him temporarily to the moon. But once he realized Santa was going to talk to him, and ask him questions he started talking back in his own little language. It was so sweet, and so precious. This Santa took so much time with Noah, and made him comfortable. I know they probably had dozens of kids left to see, but Santa offered Noah all the time he needed. They were such a gift to all of us last night. Santa was the best!

Noah's grandma got to come this time, she was sick last year and couldn't be with Noah for his 1st Santa visit. So it was so nice that she could come for the second. Of course she said it flooded memories of when we were little and Santa came for us all those years. It truly is a wonderful service that they do for the community. They bring so much joy to so many houses. An even bigger blessing for a child that is not mobile and lacks all motor skill abilities.

The firemen, and volunteers, also known as Santa's elves, were beyond kind too. Such an amazing group of people, I wish I could just hug them all season long, they'll probably never know what it means to us. They had the smaller fire truck this year which was neat, the City has so many vehicles I didn't even know they had. It's the only time that you ever want emergency lights to come for your little one, but Noah stared at the lights with joy, we took him outside and got pictures with the truck. Probably every little boy's dream. A fire truck with lights and Santa right next to it.

I've attached some pictures of Noah's visit with Santa, a beautiful night, that Chris and I are so blessed to be able to share with our little Noah. What a gift he's been to us, we're so glad he's here and that he fought so hard to stay. Building memories of the sweet times is what we always hold dear to our hearts. We have to cling to all that is good.

Love,


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