Saturday, August 29, 2009

Noah Is Under Construction

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Noah met with his Friday therapist for the first time, Nickie. He was really fascinated with her and although he was very tired from deciding to skip a morning nap, he did really well. He loved that Nickie would sing to him, he studied her intently. We also measured him for his belly band and I will have to call and order it next week since they aren't open until Monday. I also ordered his Rody pony today. Chris liked the blue Rody pony so that is the color Noah will be getting.

Noah may have a lot of things lacking with his movement, but Noah sure is a smart little guy. He knows when I'm feeding the dogs and gets upset, if he thinks I'm cooking or making something to eat he makes a monkey like sound because he wants to eat it too, if I drink in front of him same thing. He gets upset because he's not getting any. I think the fact that Noah is studying, learning and thinking is a great sign that he is understanding the world around him.

I also went to Babies R Us yesterday to get Noah a step stool for therapy. There were a lot of little babies in the store maybe around three to four months old. They all were like red flashing lights to me that I couldn't help but look at. I tried not to, I knew what I was doing was seeing what they could do. But like a moth to a flame I couldn't help myself. They all were playing with their hands in their mouth. They're skilled with already manipulating their little fingers to get what they desire. I can't wait for the day when Noah learns how to do that. His arms are so stiff that bending his hands in that way is very hard. Side by side you can tell there is a difference between Noah and other babies, but that's okay, I suppose it's going to be even more evident. It can be hidden only so long. But somehow it doesn't matter. I'm very proud of the fact that Noah was granted a chance at life.

This week has been a hard week for Chris and I, and I think that it's only fair that I include ourselves in speaking of Noah's journey. We are a family, all three of us, and we're in this together. In all honesty I'm not sure that I would even know how to censor how I'm feeling or what I write nor should I be asked to. This is a place where I come within myself to say what my heart feels, the thoughts that fill my mind. My hopes, dreams and wishes for Noah's future, for our growth, courage and continued strength as a family. I don't want to sugar coat things, pretend that everything is fine when it's not. That's not reality, and that would give everyone that wants to learn about Noah and what this is like a sense of something it isn't. I want what I say to be real, candid and raw with the truth. The picture isn't always pretty, Chris and I don't wake up smelling roses everyday, yet there are sunshine days where we start to see blossoms forming and the clouds clearing if only for so ever briefly. And I want to talk about all those things and everything in-between. We can be judged at the end of the day for it. But it doesn't change anything. In the morning we will still be the same people, walking up doing the best that we can do each and every day as Noah's parents. I know there are so many people that could never understand, but as another mother told me: I don't think we'd wish you to fully understand because you'd have to be living this and we wouldn't wish that on anyone.

I found this poem in a magazine that was just sent to the house. It reads:

Dear God,
I 'm still under construction,
but even though I'm small,
I know you'll steer me right
and guide me in the long haul...
Help me keep on truckin'
with your power from above,
And with rock-solid values
of faith and hope and love.

It reminded me of Noah and how he's still under construction. God's continues to build him and he remains a work in progress. But I think Noah just might be God's best work yet.

Stacy, Chris & Noah

Wednesday, August 26, 2009

Noah the Little Peanut

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Noah had his first physical therapy session today. It went well, his Wednesday therapist's name is Beth, she's tiny, sweet and full of hope and kindness. There's so much Noah needs to work on. First being his head control, he has none to really balance to be the foundation of sitting. Beth gave me great techniques for therapy at home. There's a lot of little things I need to get for Noah this week, I need to get him a door mirror to put on the floor so he can see himself doing therapy, I have to find a toddler step stool (the smallest I can find) since as Noah's therapist said "he's still a peanut," to serve as a table for Noah to sit at on the floor so we can put toys on top for him to try to reach and grab. Noah will also be fitted for a belly band on Friday to help him with his stomach muscles. I think it's something that will have to be ordered. I have this vision of Noah in his splints and belly band looking at me like how many accessories do you think I need mom?

None of these items of course are reimbursed by Medicaid. Noah's therapist also gave me a paperwork on how they measure success on a scale of 1 to 5 -- 5 being the worst and 1 being the best for progress. She said you can start at a 5, then graduate to a 3. Right now since Noah can't sit and doesn't have head control he's technically at a 5, but they really don't do a range scale until around 2 years of age, so officially he has some time to catch up. She also told me some really encouraging stories about other children that she works with that are doing amazing things when the odds were against them, which gave me hope that Noah will be another amazing story for her to tell in a few years to another mother just like me.

I've also faced some negative comments this week in regards to things I have written in Noah's updates. I've contemplated whether to continue on with Noah's updates and website. After a long discussion with Noah's daddy we both have decided to continue on bringing Noah's story to you. I write for Noah. I write so he knows just how hard we've fought, what our life is genuinely like as a family, so he can look at it someday and know we loved him more than life itself and made every sacrifice on earth for him. I feel bad that there are those that do not support us, who cannot understand, but my primary and only goal is doing what is best for Noah. It doesn't matter how anyone feels about Chris and I, if you think we're good parents, bad parents, doing enough, not doing enough, because at the end of the day, God knows how hard we're trying and the sacrifices we're making for this little boy. God gave him to us for a reason, and I will not fail him. I encourage all of you to continue leaving beautiful messages for Noah on his website. If you are no longer interested in receiving his updates just notify me and I will kindly remove your name from receiving notifications when updates post.

This evening there was a roofing contractor that I told about our little Noah, a person that instantly knew that God had intended something very special for our Noah. That is another reason that Noah's updates must carry on, there are many people that Noah inspires and needs to reach and right now I am his voice. Noah is one of God's miracles. Someday he will be able to share with you his own journey, and I look forward to that day. Again thank you to those who have not left our side, who lift me up when the days are hard, who come to share in this journey with us. Your words of encouragement and support mean so much. So many around the world have fallen in love with Noah, and I know that you love hearing about how we are doing.

Please continue to pray for Noah, I know therapy will prove to be challenging for him, but he WILL do it, he WILL get there, and I know that he WILL walk, and he WILL talk! And we all will rejoice and celebrate together! PRAISE GOD!

I need to ask now for a very special request from all of you. There have been many families that I have connected with that have children like Noah, that have suffered brain injuries. There is a little special boy named Santana and he needs some help. As many of you know therapy equipment is not covered by health care and Santana is need of a very expensive therapy machine. Even if you are unable to contribute to help them please send a very special prayer their way. We are ALL in this together. It's about people helping people, loving one another through the hardest of times. This is his wish upon a hero site and please watch his video:

God bless you all

Stacy, Chris & Noah

Monday, August 24, 2009

Noah's New Gloves

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Noah had his occupational therapy today and was fitted with thumb splints to help him hold his thumbs out so eventually we can teach him how to use his hands. Therapy went well, I really like our therapist, Julie a lot. But my heart is heavy today, and I am sad. This just feels so unfair for Noah and for us. To sit and watch him struggle to hold a toy, to sit, to position his head to reach for anything even his bottle. It makes me twinge with this shooting pain that always takes aim at the very center of my heart and it never misses. They say time heals all wounds, but will my wounds as a mother that has to watch her child try a million times harder than regular children ever heal? Probably not. And I bear the burden of therapy on my own. I know that Chris would gladly be there if he could, if he wasn't slaving away trying to make just enough money for us to get by without a raise in sight. I see it in his face every night when he gets home the worry of trying to provide for the three of us and two very hungry dogs. He has his own weight on his shoulders, just as I have mine.

Sometimes I think there's not a single thing I could write that could even explain the gravity of what I often feel. The sinking feeling, the heartbreak, the laughter behind the tears, the hope, the loss, the promise each new day brings along with the pain and often sorrow filled moments. Yet there's Noah who smiles and laughs through it all. He doesn't even recognize that he's different, doesn't yet know that he cannot do what others can. I worry about the day when he does know, will his spirits be able to soar beyond cruel words from others, the hurt of kids teasing. Will the comfort of his mother's arms be enough to make up for what was lost at his birth? I'm sure Chris would say something brilliant like don't worry about things we can't fix today. Noah's daddy has some pretty unbelievable courage and strength set aside especially for him. All the while he allows me my window of worry, sadness, tears and motherly anguish. Yet he makes sure that I also focus on all the "rainbows" in Noah's life. He has no GI tube, he socializes, recognizes people, makes attempts to roll and grab, that he laughs appropriately to things that are funny, that he likes to be kissed on and loved.

There's so many theraputical things we're trying to get Noah. In therapy we played with a little blow up therapy pony named Rody. For those of you that have given your hearts and helped donate money for Noah, I'd like to tell you all the wonderful things that it is going towards. Things like Rody, and therapy equipment and toys. Things that may seem little but mean so much that we can get them for Noah to help him reach his goals. We wouldn't have been able to get Noah these things without your help. I'm sure there is a lot more Noah will need down the road, but as Chris says we'll cross that bridge as we come to it.

To each and everyone one of you thank you from the bottom of my heart. I may never know all your names, some of you I may never get the chance to personally meet and hug, but there's not a day that goes by that I don't think of each and everyone of you that has helped us.
Eventually when I can get Noah in a good place, I'd love to start a non-profit organization in his name to help give back to other children that need help purchasing therapy related items.
These items aren't covered by health insurance and it would mean so much for me to help another family who is facing our same journey.
I've attached a picture of Noah's "boxing gloves" or better known as his therapy splints. He's been a really good sport about wearing them today.
Stacy, Chris & Noah
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Sunday, August 23, 2009

Noah Turns Eight Months Old!

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Noah turned eight months old today. Time is such a strange thing, at times you feel as if it's passed you by. Yet at other times you think it's standing still. It's so still so very fresh those critical first days of Noah's life, yet I look at him and see how it's beyond amazing how far he's come in such a short amount of time. And then I pray with all my heart that time will bring Noah complete healing. I must remain patient, it will come.

Noah went to a bar-b-que today, I think it was his first friend-event of the summer! Bill and Marge had invited us to their home so that those from the healing room could have a chance to meet Noah. Their prayers and love for him continue to mean so much to our family. I know I can't possibly say this enough but I know that God is listening to all of you, he hears your precious pleas for our Noah. None of you have given up on him, still soldiering on for him. We thank you always.

This will be a big week for Noah, his first round of a lot of therapy. Three times a week now we'll be making the drive. I know a lot of hard work lies ahead for Noah. I feel so badly sometimes that he must work harder for what comes naturally for most. But in the end, God may have intended it that way. Noah for whatever reason must know what it's like to fight hard and to feel accomplishments in a different way. And the lessons it's teaching his parents is no less invaluable. I once felt I had the world by the feet, anything was in my reach, my dreams were always obtainable, my goals right at my finger tips. Now life has shifted as it rightfully should. My dreams are no longer my own, they belong to Noah, and it's his goals and achievements that I look forward to. And with every small milestone he is able to accomplish it feels like I've won the lottery each and every day. Yet Noah is the biggest winner, for he's been granted the chance at life.

There's so many things I hope Noah can do before his first birthday, I'd love to rush his timeline along and have him sitting, crawling and walking. I know that may or may not happen. Things are in "Noah time" not mine.

Noah also had a visit from his Grandma Linda today, Noah always loves it when his family is around. And I think the dogs especially enjoyed it because they got their much needed attention! Hollie always knows she'll get to play fetch and Brystal will get her much overdue belly rub.

Noah sends his hellos to all, thank you for never giving up hope, for loving Noah all these hard months, new friends, old friends, family and those I've yet to meet but that I know await us on this road, that have all become a part of our lives.

Stacy, Chris & Noah

Saturday, August 22, 2009

Noah goes to Petsmart

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Today I took Noah to Petsmart and walked the outdoor strip mall with him. He much prefers to be outside than inside a store in a stroller. Noah loved Petsmart. He fell in love with a black kitty named Harvey that was up for adoption. Noah also particularly enjoyed watching the two white doves they had. They fluffed their feathers and flirted with him. He thought they were wonderful. Then we watched all the boarded dogs get their daily exercise and he thought that the great dane that much preferred to watch and nuzzle him through the glass was more fun than watching the other dogs run around in play. So now I have two great spots, Best Buy and the pet store. I wish I could get Noah out to the zoo, but it's just too far for him to tolerate. He still can't go very far in car seats before he gets beyond upset.

Noah's great grandmother is coming again to see Noah in a couple of weeks. She's traveling all by herself this time just to see him. It makes me so happy that there is family that wants to be with him. I ran across this article that I'll attach to the bottom of this post. It made me cry because it reminded me of my own mother who I think would do anything for Noah, even if that meant rebuilding her entire house to accommodate his needs. It takes a special person to look past Noah's limitations to see him for what is beneath his physical limitations. And I've seen her pace my floors with a distraught Noah for hours on end, soothing him without an ounce of frustration, connected as if she knows exactly how his sweet little body must be feeling. It's such an exhausting task to try to make Noah content, and she never once complains she just stares into his eyes and reaches his soul all the while just talking him through it no matter how long it takes to reach him. Not everyone seems to be able to look past Noah's current handicaps, I feel some stay distant because it's not easy to accept. Some are in denial even thinking Noah is like everyone else when he isn't. When I explain his car seat problems they say "He has to learn sometime." But Noah is different, he's not like a baby that needs to learn the ropes, he has sensory problems, movement problems, arching problems, soothing problems - the list could go on and on and on. I pray with time and a lot of work he'll overcome them. But if he doesn't, it does my heart good to know that he'll still be loved and accepted by those who matter the most.

Noah's arching has been especially hard on my left arm this week. I fell down our top flight of stairs in the dark a few days ago, and injured it on top of Noah putting a strain on it. There is no rest for that arm, so I don't know when exactly, if ever, it will recover. I worry terribly about the design of this house. I find myself detaching from my love that had for this home. Once upon a time it was my dream home, now I think I could let go of it if it meant that Noah needed something without stairs.

Noah has also found it very funny to have his daddy pretend to be the cookie monster. Noah's favorite word is now cookie and he laughs every time it's said to him. I'd still love to hear momma or dadda from Noah, but if cookie is going to be his favorite word so be it I guess.

Below is the attached article I mentioned. Keep believing in the power of prayer!

Stacy, Chris & Noah

Children of Special Needs Deserve Special Grandparents
by Judy Winter
Topics: Learning Styles
Grandma Mary is a gem.

Her real name is Mary Jane Pressley Winter, but Grandma suits her well. Although my mother-in-law looks younger than she is, Mary's what a grandma should be. She's kind and gentle and radiates comforting smiles. Grandma Mary proudly boasts seven grandchildren, but she'd never claim a favorite.

Eight years ago when when my son, Eric, was diagnosed with cerebral palsy, Grandma Mary was there for us.

Little has been written about the grief that families of children with special needs endure. Even less is said of the anguish experienced by grandparents eagerly anticipating the renewed joys of parenting, minus its demands.

For special grandparents, joyful family gatherings filled with proud coos over "perfect" newborns are often replaced by neonatal intensive care visits. Instead of cigars, stuffed animals and back slapping, they face the hum of medical intervention, fragile infants and broken dreams.

The experience can prove overwhelming for the grandfather who'd hoped to teach his grandson how to throw a football or share hotdogs at the ball park. Or for the grandmother with visions of frilly dresses, ballet recitals and passing down a cookie recipe in the family for generations.

Grandma's Love
For many family members, the birth of a special child can represent the death of a dream. But not for Grandma Mary.

Since the day of Eric's birth, she's enthusiastically claimed her grandson and created a place in her heart for a love almost too big to hold. She has embraced powerful life lessons from a child teaching volumes about unconditional love. Her grandson makes us all listen when communication goes beyond words.

It was Grandma Mary who lovingly rocked Eric, while life-sustaining tubes connected to his body. She sang silly songs that have become theirs. Her sweet face and gentle voice have offered healing that rivals the best medical treatment, aiding in Eric's recovery and in ours.

Grandma Mary walked the floor for hours, singing sweetly, when it was the only way to soothe a distraught infant and his parents were exhausted.

When people seemed insensitive to the magnitude of our special parenting challenge, there was Grandma Mary, adding a wheelchair ramp to her front porch to ensure Eric's visits. She has forced herself beyond her comfort zone at a time in her life when she could be coasting and she always has enough love left to savor magical moments with each grandchild.

To Grandma Mary, each and every new life is unique, much like the designs on her coveted handmade quilts.

Today, Grandma Mary and Eric play the guitar, read chapter books and cook in the kitchen. She volunteers weekly at Eric's school. Mary and I understand the tears of love that fill each of our eyes when we celebrate Eric's hard-won achievements and we both know that a priceless corner of her heart is forever owned by one special grandson in a wheelchair.

Their powerful human bond blesses us all.

Sunday, August 16, 2009

Noah Enjoys the Stroller

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Noah's been quite content in his stroller all week, so much so I've spent hours driving him around the neighborhood. I don't know if this is going to be a trend or just Noah's good week. I've noticed him trying to gather more stomach muscle strength, we are still very far from being able to sit, but I think with lots of work he'll get there someday. I tried to put him in a grocery cart with one of those pillow like things you put in the center of it, but Noah has no sense of balance of head control, even with padding blankets or a pillow behind him it just wasn't going to work. People passing by just gave me these looks like I was trying to torture Noah or something, they don't understand that he's different, that I have to do odd things to try to support him. Sometimes you want to stop and tell them hey he has brain injury, but then you figure if they probably wouldn't care anyways, not their problem, not their child.

I've had emotions lay heavy on me this week. It's been one of those deep in thought, painful weeks but not necessarily for me and Noah, but for everyone, the world in general. I look at Noah and just hope that God spared him to change this world for the better, I see my generation failing at making the changes that need to come. As I watch the news or watch horrible documentaries, I can't help but think someone has to come on this earth to stop it, to fix our wrongs.

I've also been feeling very heartbroken over other mothers' journals with children that have suffered brain injuries. Some are very much struggling right now. I feel crushed as I read word for word. My tears flow for them in genuine pain. I cannot stop feeling for them, I ache with worry and sadness for children that are not my own. Knowing that I sit helpless clinging on every painful word they say. I want so much to fix everything for all of us. All I can do is pray, I have no other line of defense for my sadness, grief and hope. One mother said this week she wanted God to take her son and relieve his pain. I can't get past that. I know what it's like to feel that way. Pain can become so blurry that you don't know what you should be asking God for. And there are so many parents out there that take all these carefree moments with their children for granted. If they only knew what the other side felt like just for a moment they'd understand our cross is heavy.

Next week Noah starts therapy three times a week for the next eight weeks. We're going to try to be aggressive with therapy and then determine if he can go to twice a week after that. I'm praying so hard that therapy will help guide him to his road to an independent toddler capable of playing and running like everyone else.

Chris and I are so blessed to find help in small ways. And we continue to be very thankful. For those of you that have not forgotten our little Noah and still send him care packages, thank you always and forever; to caring people at Saturn North who gave our car new breaks and are fixing broken coils at no charge. Every little act of kindness matters beyond words. I encourage all that may come across Noah's updates to never stop doing kind things for another. It could be the simplest thing, but it could change someone's day or life forever. We all need to take time to do something special for another, to put ourselves in the backseat rather than the front. To park that ego that says I have to come first. That's what will start to make this world permanently a better place. A place I want to leave Noah to care for when we're no longer here.

Please pray for all those moms this week that are caring for their special needs children. There are millions of us and often times our hearts are heavy and our tears flow endlessly. Never take your children for granted, life is so very fragile.

I'll leave you with Noah's seeking "little lady ad" and yes Noah's hair is just incredible!

My name is Noah and I live on the 2nd floor. I am a capricorn and enjoy long walks down the hallway and strolls at Best Buy. I enjoy eating, pooping, screaming and arching. Looking for a little lady that doesn't mind therapy and long nights. I have attached a profile picture of myself and yes ladies that is my real hair, no extensions here. Must love my mother and reach all my toys for me. If you think you could be the one, please drop me a line.

Love, Stacy, Chris & Noah
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Wednesday, August 12, 2009

Noah's New Therapy

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Noah's arching has just become very frustrating. His strength is almost uncontrollable, and every time he arches my arm literally pops out of socket, that's how strong he is. The therapists keep telling me to break up his arching at his waist, but it's almost impossible once he locks his legs there is nothing you can do to make his hips flex. Carrying him is terrible. Our occupational therapist says that this is very common with brain injury babies and that sometimes they'll come out of it and sometimes they won't. I'm really liking our occupational therapist a lot. She is so nice, and understands the importance of keeping Noah as healthy as possible for his continued recovery, so she's having me call her when I'm in the parking lot because she doesn't want me in the waiting room with other children and we have a private therapy room for Noah. And now that we're coming up on germ season again, we'll have to be careful again who Noah is around should they be sick.

Our occupational therapist is also doing a home visit tomorrow to see if we have a proper high chair, stroller, toys and things for Noah for his therapy. It was so wonderful for her to offer to come to the house to help us. She also recommended a pediatric therapy seat for Noah called a Tumble Form/Position seat. These go from anywhere from $350-$700. Something that Medicaid doesn't pay for. Yesterday Chris and I were watching the news and it said it takes $250,000 to raise one child to the age of eighteen, but we're wondering just how much will it cost us to raise Noah? Millions?

I also have been bombarded with this commercial on television for the storage of cord blood at birth. They have this cute little girl in pigtails playing on the playground and the commercial says she was born with a brain injury at birth but completely recovered due to cord blood therapy. The commercial made me a little bitter. I understand the choice to store cord blood for future possible purposes as an option, but I think that if you know that you have a brain injury at the time of birth that it should be the medical community's obligation to use the cord blood right then and there as a form of treatment. Bill me, I don't care, they billed me hundreds of thousands for brain cooling, so what's a few more thousands for taking our cord blood and giving it to him rather than just throwing it away! And I don't understand the controversy with stem cells. Regardless if you're pro-life or not, the realization is that the medical field throws out hundreds of thousands of embryos from in-vitro practices, if they're being thrown out anyways then why not use them? I think it's outrageous that other mothers are having to travel all the way to Costa Rica for treatment for their children. There is so much about the United States' medical practices that make me fume. And does the government really think they'll cure the "we won't cover pre-existing?" I'd like to see this all happen. In a perfect world really... It's about money, and I don't see that changing and someone needs to lobby for the use of cord blood upon birth for complications like Noah's.

Noah is at least trying to be happy in his stroller, and when I say "trying" I mean just that. It's a work in progress. He much prefers to be strolling outside but hates to be strolled really in shopping establishments unless it's Best Buy and we're staring at a wall of a hundred televisions. Most moms take their kids to the zoo for entertainment, I have to take mine to an electronics store for stimulation. Some days I'm just desperate for anything that will work to entertain him. He still doesn't have good head control or balance so I can't put him in a grocery cart, so I'm forced to hold him the majority of the time which is so hard considering arching is his favorite sport.

I'm dreading the winter because honestly I don't know how I'll keep Noah happy without the outdoors. Chris says I should just open a door and let him watch it snow but I think he'll only find that fascinating for probably about 2 minutes. I keep thinking if he could only learn to sit, or crawl that he'd be far more entertained that I'm able to keep him. But it could be several more months before Noah makes any attempt to sit. I'm praying so very hard with therapy that they'll be able to show him how to do it.

The waiting room at Children's is such an experience, there are so many moms there with little ones, many that are obviously facing bigger challenges currently than Noah is. They appear so brave to me, carrying medical equipment, handling wheelchairs and balancing enough hands to hold two other children. Yet they're finding a way to be super human. That's some amazing skill, it really is. I have trouble balancing Noah's arching body and a diaper bag and locating my keys all at the same time and I thought that was hard. There's just not enough praise for all those moms. They are true heroes in every sense of the word.

We had Noah's physical therapy evaluation today and they think that it would be beneficial to have physical therapy twice a week for the next eight weeks and then re-evaluate how he's doing and see if we should convert to once a week at that time. They have some neat gadgets for him there, a belly band much like that of a smaller post pregnancy band to help him strengthen his belly muscles so he'll be able to eventually sit. So far we're going to wear the band just in therapy but the therapist may recommend we purchase one in which time he'd wear it throughout the day on a schedule. Again something Medicaid will not pay for. I have a feeling we're facing a lot of things Medicaid won't pay for.

There was a little girl who came up to Noah today in the waiting room of Children's. We had to wait today since we didn't know who was doing Noah's evaluation this time. She came up to Noah while I was looking the other direction and held both his feet. At first I was a little taken back by it. Not quite sure where this little girl came from and caught off guard that she was handling Noah. But she was gentle and introduced herself to Noah only, not me. She told him her name was Shelby. She took her hands off of Noah's feet long enough to take her pink baseball cap off which revealed her balding head and a very long scar. Then resumed to wanting to hold and caress Noah's feet. Her mother turned to me and said she has a brain tumor, and her motor skills are affected. You could tell she had trouble speaking and had some braces on her legs. Her mother said she used to arch and be closed fisted too, but since February therapy has made her a completely new child. Noah appeared to love her. He stared at her intently the whole time she was talking just to him. It was like I wasn't even there. I don't know what that experience was all about, but clearly the two of them connected for a brief moment in time. And I will never know what drew her to hold his feet. It instantly brought back memories of Bill holding Noah's feet at the hospital.

Tomorrow Dairy Queen is having their Miracle Blizzard day, and for all those that buy blizzards they will donate all of the proceeds to Children's Hospital to give another child like Noah a chance at a Miracle. Please try to stop by and eat some ice cream for a good cause. Giving helps so many families just like us.

Love, Stacy, Chris & Noah

Saturday, August 8, 2009

Difficult Noah Returns

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After two semi-easy days with Noah he decided to make up for it by being a little harder. It's days like this that make me just a bit envious of mother's with "perfect babies." I try so very hard not to get bitter about it, but darn there are days when you just feel a bit cheated. And then I have to keep reminding myself that not just anybody would have what it takes to handle a Noah. Yet somehow if I would have known that God had intended this for me, I think I would have tried harder to be irresponsible and a little more reckless and maybe he would have thought twice. But the power that be, new that I'd sacrifice everything to look after this soul.

Thank goodness for the support of my mother. I'm not sure what I would do without her. She faithfully comes almost nightly and weekends, she's so devoted to Noah. She's my biggest helper, even when her back is breaking she's holding the "arching Noah" through the grocery store which is a very difficult task. We keep encouraging her just to move in, we want to hold her hostage here. I'm just glad that she loves Noah so very much despite his imperfections. She's proud of him and she always looks past his brain injury and sees his soul. Without my mom, there would be no relief for Chris and I. I used to think that God placed my mother and I together because we were so close, but in reality he knew that Noah would need her more. This darn master designed plan. Oh, how I look back over the years and see how the puzzle all comes together. My sweet Snookie, who was the pretty cafeteria worker at my elementary school saying here "sweetie don't forget your cup of salad," who was one of the first who taught me kindness, compassion, and love and who has remained in my life all these years and gave so graciously to help Noah, to friends that I met at Costco who God sent because he knew I'd need that kind of support and love, to my earthly angels Bill and Ernie, and what Chris and I call our "seers" in Marge and Joanne, to those I worked with over the years who contributed both bad and good to the person I became. Even sending me the only husband there could ever be that would stand by my side and love his little boy to pieces despite how hard he is. I feel like I was groomed. Maybe that sounds quite silly to most, but when I look back on my entire life thus far, it seems so designed. Maybe I had control over the tiny details of it, but clearly my book was written.

So what do I do with the future? Only God knows, for he holds my book in his hands and only slowly reads it to me all the while giving me the time I need to digest it, interpret it, and live it. I'd love to skip chapters and see exactly what life will be like in five years. Will Noah finally outgrow the arching? Will hear learn to walk and pull a wagon? Will he learn to say mom and dad? I want the answers to all these questions now, and that's just not going to happen.

Noah continues to draw attention wherever we go. In a way it makes me feel like Noah is special, even when the days that I struggle that he's not like everyone else's baby. Strangers will tell me they love his hair, or a lady in the store detecting Noah had a handicap just by observation, but saying don't you worry he'll be okay, to my sweet dear friend Joey telling me look he's trying to hold his bottle, he'll get there don't you worry. They too are heaven sent, playing a beautiful part in my book.

I try so hard to be positive on the difficult days, but it is very hard sometimes. I do wear down just like any other mom of a special needs baby, I have my good days and bad days, my sad and my happy. I know it could always be worse, that the alternative is not to have Noah at all, and I try to think I can do this. Noah already has become the little train that could, now if his mom would just get permanently on-board and quit trying to locate the caboose and just realize that it's more fun not knowing where the conductor is taking us.

Here's hoping that the book says tomorrow is an easier day for both Noah and us.

Stacy, Chris & Noah

Noah's Got Therapy!

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Noah's arching during feedings seems to have gone completely away (thank goodness). I however am already bored with this new diet to assist his tummy and seem to be missing pizza and pastas with red sauce a little more than I had expected to. But I'm willing to take one for the team if it makes Noah all better. Yes "TEAM NOAH"

I think we may be on the road to therapy - finally. Noah's PAR approval from Medicaid has gone through, for physical therapy. We had our evaluation for occupational therapy and got to meet Noah's new occupational therapist, Julie. She seems very knowledgeable and has been doing therapy for 16 years. She said some very encouraging things about Noah, and although she recognizes that we have some work ahead of us, she thinks Noah is giving it his all. She said one of Noah's biggest roadblocks is his lack of head control and has control currently of a 2-3 month old. We just need to work on getting those muscles to strengthen. She also thinks that Noah's lack of being able to roll from tummy to back and back to tummy like he was able to do before could be because his body changed and grew and his head was not prepared to carry the extra body weight. We'll be doing occupational therapy once a week and we're not sure how many times we'll be doing physical therapy yet per week until they evaluate him next week.

There are some great things that I see in Noah. He is genuinely giving his movement all his effort and I can tell he's thinking so very hard on how to get his hands to his mouth, how to grab a toy and get it somewhere. He's trying hard, and grunts like it's so much effort and often gets frustrated because I can tell he wants so very badly to do it, but isn't sure how. I have faith that someday he'll do it.

Noah also had a great visit from his special Bill, his wife Marge, and friend Joanne over the last weekend. They brought him toys and had a sweet little visit with him. Noah just loves Bill. They have an unspoken connection that I love to witness. It's so very nice to have those who have prayed and loved Noah from the very start. I know other special needs mothers have started to feel that friends and family withdraw from situations such as these over time. I see how they feel that way. As you settle into your new life, and make adjustments and come to grips with things, I do see how that happens. Maybe some can't handle the reality of it, maybe they don't want to be bothered with the trials of it, or maybe they simply think that you should be handling things differently even though they've never tried walking a mile in our shoes. I think Chris and I have come through it pretty good. No matter the two of us have become our very best support system, and honestly we haven't had the time to dwell on who's hanging in there with us and who isn't. Yet I do feel bad for those other mothers and families that need that support when there simply isn't any.

Noah is also becoming much more verbal - in his own babble, squawking kind of way. He's also become more attached to me which I'm finding even more difficult to even run to the bathroom during the day! He never takes his eyes off me and if I disappear into another room the broken-hearted cry starts. His daddy is also having troubles getting Noah to sleep at night so I've taken back that duty. Noah is just going through a mommy phase right now and I keep telling Chris it will pass. Thank goodness Noah didn't have a twin, he'd never tolerate not being the center of all attention and the ultimate super star. He's even getting jealous of the dogs. If I feed them or give them attention he'll pucker and pout and start to cry. The therapist says that although his level of attachment may be hard on me now, that it's an excellent sign that Noah is comprehending similar to how other babies do and is displaying some really good signs in that area.

Noah has also become very aware of food. If we're eating he squawks and opens his mouth like a little birdie and grunts. Yesterday I mashed up a banana with my fingers and gave it to him. He gummed it really well and was beyond happy that I let him participate in dinner with us. He loves to eat. His therapist also agreed that soft flow is still very perfect for him because he's fast at it, and there's no need to rock his boat, and that we should stick with only baby food for the first year because Noah could face some big challenges converting over to solids and will need to be monitored for that type of transition.

We just remain so very thankful for how far God has taken little Noah. Seven months ago the doctors didn't even think a fragment of this would happen. I like that Noah's OT has faith in him and says we're going to prove to everyone just what Noah can do. The idea of being in therapy for five or more years is an exhausting thought, but I just have to do what I have to do.

Thank you to all of you that still take the time to read and follow up about Noah. It means so much to us that there are those who still care so very much about him. Please continue to pray that God continues to bless Noah in every way everyday. Believe in the power of prayer always.

Stacy, Chris & Noah