Thursday, December 29, 2011

Tuesday, December 27, 2011

Noah's 4th Christmas

Good Morning Christmas



Happy About Santa



Noah walking to his presents with daddy's help


Noah had a great Christmas. This was the first year that he genuinely seemed interested and sat in his daddy's lap for the opening of gifts without getting upset. We had two little casualties this season, I broke off Joseph's fingers on our nativity, and Chris got overly confident that an excited Noah could not reach his treasured Christmas house that plays Trans-Siberian Orchestra music (which was our first concert together). This was the first year in six years that he took it out of the box, placed on the ground so Noah could see it better, and Noah goes and swats the little snowman in the front yard and flings it across the room. Poor house, thank goodness for superglue. I think next year we'll get the little people's nativity that won't break and put the house back in the safe box... Chris handled the accident rather well, I suppose although he was sad his house got injured he was happy that Noah broke something for the very first time. As for Joseph's fingers - well I've tried to glue them back together twice without success. Joseph remains fingerless, now packed away safely in a box.

Noah however hasn't been doing fantastic with the soft solids like he was a couple of weeks ago. It is almost like he forgot that he could do it. But I think it is temporary, it's all new for him, and we really don't want to force or rush this for him. It's all Noah time. He'll decide when and if he wants to eat soft solids. So I'm trying not to be heartbroken that he seems not to be able to really handle it this week. He did it once, well more than once - so he'll do it again.

The new year is fast approaching. I have no resolutions other than to keep fighting as hard as I can for all that Noah needs. I am hoping that a pediatric wheelchair will be in his future this year. It has been nearly two years since we obtained the kidcart that Noah sincerely hates. We have a Stingray on trial, and Noah seems to really like it. I had originally thought the cuddlebug would be a good match for him, but the cuddlebug is like sitting in a giant pillow, and I think it would limit the movement he already has. The stingray lets him exercise the skills he currently has, while offering him the necessary support. We've been warned that Medicaid will likely deny it. It is a tremendously difficult position to be in knowing Noah needs items that we can't get for him. More than anything we pray that the new year will bring huge healing for Noah. I would love nothing more than if this was the year of talking. We continue to hope, pray and have faith in all things possible.

Love,





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

Noah

Noah had a great Christmas. This was the first year that he genuinely seemed interested and sat in his daddy's lap for the opening of gifts without getting upset. We had two little casualties this season, I broke off Joseph's fingers on our nativity, and Chris got overly confident that an excited Noah could not reach his treasured Christmas house that plays Trans-Siberian Orchestra music (which was our first concert together). This was the first year in six years that he took it out of the box, placed on the ground so Noah could see it better, and Noah goes and swats the little snowman in the front yard and flings it across the room. Poor house, thank goodness for superglue. I think next year we'll get the little people's nativity that won't break and put the house back in the safe box... Chris handled the accident rather well, I suppose although he was sad his house got injured he was happy that Noah broke something for the very first time. As for Joseph's fingers - well I've tried to glue them back together twice without success. Joseph remains fingerless, now packed away safely in a box.

Noah however hasn't been doing fantastic with the soft solids like he was a couple of weeks ago. It is almost like he forgot that he could do it. But I think it is temporary, it's all new for him, and we really don't want to force or rush this for him. It's all Noah time. He'll decide when and if he wants to eat soft solids. So I'm trying not to be heartbroken that he seems not to be able to really handle it this week. He did it once, well more than once - so he'll do it again.

The new year is fast approaching. I have no resolutions other than to keep fighting as hard as I can for all that Noah needs. I am hoping that a pediatric wheelchair will be in his future this year. It has been nearly two years since we obtained the kidcart that Noah sincerely hates. We have a Stingray on trial, and Noah seems to really like it. I had originally thought the cuddlebug would be a good match for him, but the cuddlebug is like sitting in a giant pillow, and I think it would limit the movement he already has. The stingray lets him exercise the skills he currently has, while offering him the necessary support. We've been warned that Medicaid will likely deny it. It is a tremendously difficult position to be in knowing Noah needs items that we can't get for him. More than anything we pray that the new year will bring huge healing for Noah. I would love nothing more than if this was the year of talking. We continue to hope, pray and have faith in all things possible.

Love,
Stacy, Chris, Noah & Luke






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

Saturday, December 24, 2011

Noah's 3rd Birthday Party

Happy Birthday Noah!




Noah's Birthday Smiles




Noah's Balloons




Noah's Sesame Street Wall



Noah's 3rd Birthday Cake






Noah had a beautiful birthday. He squealed with excitement over his balloons and amazing birthday cake. His cake was provided by a foundation called Icing Smiles who bakes cakes for families with children that have medical needs or special needs. A sweet lady named Shannon, made his cake - a Sesame Street theme. It was the most gorgeous cake ever. She delivered it to our home, and it was truly a gift in so many ways. What an amazing loving person it takes to donate their time and talent to touch the heart of another human being. Noah loved his cake. Shannon made it extra special with no artificial dyes in the cake, and gluten free cookies. Noah was able to eat the center because it was a vanilla custard. She thought of everything and it made for the perfect 3rd birthday.

Chris helped Noah unwrap all of his gifts. He made attempts to help, swatting at the paper - so eager to try. Sometime it makes me twinge when I see him trying so hard to do something that he just can't do, but I try to flip that switch in my brain that says, at least he is still here, be thankful... be thankful that you get to even see him try. The day was emotional for me, but in really beautiful ways. My sweet neighbor brought Noah a card, another special needs grandmother that we've connected with over the years made a special delivery and got him the cutest pop-out book that Noah thinks is awesome, tons of birthday wishes poured in for Noah in emails and guestbook entries, each one of them so touching that I probably cried a thousand times over - even a birthday wish from the photographer who took what we thought would be his last pictures when we took him off life support. Tugs at my heartstrings. And I save everything for Noah, documenting it, so one day he'll know how loved and prayed for he is from so many around the world. His hope chest just grows each birthday, with cards and love.

Even though it was just us for Noah's birthday party, you all came in spirit, we couldn't ask for more. We have been blessed. Although this journey is tremendously hard at times, and I ache daily for what Noah cannot do, it is such a gift that we celebrate him three years later when the odds were against him. So many of you have been with us from the beginning, continuing to pray with each passing day for a little boy named Noah.

Love,





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

Friday, December 23, 2011

Noah Turns Three




Sweetest Noah,

Today you turn three. I had hoped that I could tell you that you learned to walk and talk this year - or even sit unassisted, but I can't. But it's okay. You are blossoming in so many other ways and we continue to believe your miracle is not done. We still do some kind of therapy just about everyday. You are the hardest working person I know. I admire your courage, stregnth and continued perserverance. You make an excellent big brother, and although your are limited in what you can do, you always find a way to squeal to alert me if Luke is into something he shouldn't be - primarily your toys. This year you were able to eat spaghetti for the first time, your first un-pureed meal, and you have demonstrated some really great understanding in therapy. Your head and back control is improving, and you are now making an effort to compete for your toys and swat at them. And we remain so ever proud of you.

You have learned to sass back, although we don't know what you are saying, you clearly are passionate about your message. It is my hope that one day you'll be completely understandable and can share with the world all of your amazing experiences. Your daddy has become your entire world. He makes you smile and you light up with just the word "daddy." I am glad that he is your favorite person. He loves you beyond all measure. He calls like clockwork everyday to make sure you are okay, doing well and are happy. You never leave his mind or his heart. He still totes you place to place calling you his little "buddy." You now have a cute game you play before bath time, called diaper soccer, where he wraps up your used diaper and lets you kick it down the hallway while he holds you up. You seem to love it, and sometimes I swear the neighbors can hear your loud giggles and squeals.

Your patience has grown, I am now able to take you to stores without complete meltdowns. Although you still get annoyed occasionally if we are at stop lights, or if I don't pull out of parking spaces quick enough for liking. Your sensory issues seem to be improving yet I recognize there are still things that bother you. Yet I am so impressed that you tolerate Luke pulling your hair or trying to suck your hand. He means well, and just hasn't learned yet that you can't defend yourself from his gushy love attempts. Considering all that upsets you, I am impressed you let Luke get by with that.

Your eyes continue to tell me things words cannot. If I didn't know better I would swear they get more crystal blue with each passing year. They glow - and are simply beautiful. Your eyes bring me such inner peace when I struggle about your physical limitations. They bring me reassurance and comfort. They are the most loving eyes anyone could ever have. You somehow find a way to tell me everything will be okay. My worries and concerns for your future seem to grow with each passing birthday. I want only the best for you, and all the opportunities for continued recovery that I can find. I never give up hope that things will get better for you. I never stop trying, praying and hoping that all things are possible.

As you turn three, I want you to know that you could not be more loved, more treasured, and more prayed for. We love you so much and are so blessed that we are able to celebrate your third year of life.

Love,
Mommy




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

Sunday, December 18, 2011

We Wish You a Merry Christmas

From our family to yours, we wish you a Merry Christmas filled with lots of love, laughter and blessings!

Love,





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


Friday, December 16, 2011

Brought Blessings




Noah for the last month or so has occasionally had these moments of yelling at us - which sounds much like what Charlie Brown would sound like if he was mad and attempting to talk in sentences. We find it funny, because Noah is so serious and in his world he is talking. Last weekend we had lots of these moments, Noah is becoming more communicative - in his own way, we just don't know what he is saying - but he certainly does. Chris and I think this is very encouraging. Noah is making an effort. He wants to talk. He really does.

Speech therapy even reinforces Noah's amazing progress, as we asked him a series of questions for the last two weeks, and he is able to make the correct choices by first looking and then hitting the corresponding big mack button that is the correct answer. Noah is completely accurate and never misses the correct answer, which indicates to us that he understands. He could tell us who was holding him, the name of his speech therapist, identify who his brother was, and even make correct responses to what pieces of clothing a puzzle was missing. This is HUGE! Noah understands, and we have confirmation! This an amazing blessing and a big "inch-stone" for Noah. Now that he understands it is my task to figure out how to open the doorway to further communication between us. I still haven't abandoned hopes with the IPad, although communication apps that I would likely need for Noah are expensive - a few hundred dollars each. His speech therapist hasn't given up hopes that Noah will eventually be verbal, but we are working on both goals - augmentative speech device and verbal speech.

Two big successes in a month- the ability to eat soft solids and confirmation of comprehension and understanding. I can only imagine what the new year will hold for Noah. I keep dreaming of all the endless possibilities for Noah, all the things I still would love to provide for him to further his successes.

We also were gifted with a early Christmas blessing. Four very talented engineering college students built Noah a chair that straps in to other chairs for feeding and activities. They put so much time, love and creativity into making Noah something functional and safe. They have forever touched our hearts with what they have done for Noah. Not many people take the time to care they like did. Their hearts were genuinely in helping Noah. They thought of all the creature comforts for him, an abductor, special padding, 5 point harness, BPA safe plastic, magnetic tray with a lip, Noah's lack of head and trunk control and added extra supports. Young minds with such determination and love for others. They are the type of people who will help shape a better future for little ones like Noah - people who care so deeply sprinkled about out there - angels in waiting. Sometimes there are not enough words to express the gratitude that your heart contains. I am as candid about our hardships as I am about the joys and thankfulness we have for the blessings that come our way. They even made an instruction manual for us and called it "Noah's Miracle Chair."

"Gratitude is the music of the heart, when its chords are swept by the breeze of kindness." ~Author Unknown



Love,




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

Thursday, December 8, 2011

Put a Little Love in Your Heart





I must have left my badge of courage at home today - my armor to guard my heart. I had to go grocery shopping which means just me, two boys and a bulky double stroller. I try to convince myself that I can do all things - after all this is my life - for the rest of my life. Special needs aren't going to exit anytime soon. So I've taken on the attitude that I must find ways to do things that are simple for other people, but complicated for a mom like me.

Noah does possess a handicap parking pass which often causes people to look at me like a lazy mother that just doesn't want to park in the North 40 during the holiday season. People pass judgment quicker than I can blink. When I entered the store a pregnant mother points at me with her husband and says "that's the mom I told you about thinking that she is too good to park far away." I wanted to say something. I wanted to walk up to her and tell her how the cows eat the cabbage, but really I was mostly hurt and heartbroken. So I proceed down another isle trying to shrug it off when I am stopped by a lady who I am sure meant well but bends down to Noah in the stroller looks him up and down briefly and then stands and says "its cerebral palsy." "It's?" Noah is not an it. He is a person, a little boy. That's great she wanted to play diagnosis, but it was rather impolite and it sent a further sword through my heart. Usually I don't mind talking about Noah's special needs, but today was just not my day. I nodded and kept going. I didn't want to engage in explaining Noah. I round the corner to pick up spaghetti sauce only to find my third enounter with another lady who asks why Noah looks so sick. I tell her he isn't sick. And she asks why his cheeks are so red, and his skin tone is flushed and he looks like he is fever stricken. I explained to her Noah's cheeks were merely chapped, and that he wasn't ill, thanked her for her concern and literally bolted to the check-out lanes before I busted out in a thousand tears.

I passed a Starbucks on the way out, thought about trying to find something to comfort my woes, only to feel even worse as I reminded myself that Noah doesn't get to enjoy such luxuries so why should I be able to? So then the tears just flowed, I load Luke in the car who offers me his pacifier if somehow that will make me feel better, and Noah just looks at me with this angelic expression like he's sorry. And that just made it worse, because none of this is Noah's fault. This feels so hugely unfair that this is his life. I am the one who is sorry - sorry that I cannot fix it for him. I feel utterly helpless in making things better for him - making people kinder along his path. I do my best to really have some thick skin when it comes to what people say, the stares the points, the gossip - but it's so exhausting to imagine that I have to face these types of things on a regular basis as the years go by.

I rarely have the opportunity to watch television. However, the television is often on in the kitchen as noise as I go about doing laundry, or cleaning the kitchen and I overheard two shows the other day discussing special needs in an unfavorable light. It is no wonder our world has such a negative view with people who have disabilities when these messages are being sent out to the world - to our children who hear this and think that those with special needs should be discarded members of society. Why isn't anyone ashamed of this? Why does everyone let it happen? Even if you aren't directly affected by someone who has special needs this shouldn't be okay with you - with any of us.

The first show was; The Doctors, discussing the plight of a mom who refused to "pull the plug" on her siamese twins after being coached and convinced that her children would have no quality of life. Her twins did eventually pass away, but she received some heavy criticism from this panel of so called "doctor celebrities" on TV, that she merely caused them prolonged and unnecessary suffering. So as I stewed on that jaded one-sided television commentary, I'm hit with yet another show as I am making Noah's nightly bottle - Harry's Law as I am listening to the comments of character who is a mother to a special needs child who dies as a result of his neck being broken and it is presumed the mother did it as a mercy killing. She of course denies involvement with the killing of her child but does not deny that he is "better off dead," after all he'd be just like a "houseplant." And doctors were very right in that he'd have "no quality of life." In the end it is found that the nurse preformed the "mercy killing" of this small child and not the mother. Does that make any more right? I just can't believe we are sending these types of messages out that are so one-sided. First I really think that doctors and nurses should never ever, ever, ever tell a parent that their child will have no quality of life. They do not have a crystal ball... God is not whispering in their ears. How can they even predict that? I would love nothing more than if the medical profession ceased instilling in parents that there is no hope. There is always hope. I can tell you from first-hand experience that although Noah is very physically challenged, he has a quality of life. He is loved - a thousand times over, he is cared for with everything we have, he is happy, he is healthy and he is living. Every life matters not just those that are viewed as "perfection."

Sometimes I find the things some people think and say to a special needs family simply appalling. Another mother stated that someone called her special needs child a "flushable." Society generally thinks we have come so far in discrimination...not so. We still judge color, we judge gender, we judge age, we judge sexual orientation and we certainly judge people with disabilities. How do we fix it? I don't have the answers I wish I did. Sometimes I think if I write about Noah, write about our family that maybe someone out there may stumble upon it and genuinely think twice about what special needs means, what our family is like, the message behind, hope, love, and faith in all things possible. Yet am I so naive to think that one person or one child like Noah can change the world? Even change just one person's perception? I would rather you turn your back on me, than look me in the face and ever call my child a "flushable."

We are human just like you, we feel we hurt, we crave love and acceptance just as much as the next person does. We want opportunities for our children - we have hopes and dreams for them just like the rest of the world does. We are not that different from the rest.

Love,



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


Tuesday, December 6, 2011

Santa's Fire Truck Arrival

Santa's Arrival on the Fire Truck



Noah trying to tell Santa his list


A Very Happy Noah & Family

Santa's Presents for the Boys


Our much anticipated double Santa day, turned out to be a single Santa day. Unfortuantely, Noah's little brother spoiled his morning fun and was under the weather so we were unable to attend the morning festivities with his therapy school. This evening by far was the best Santa visit to the house for Noah. He watched the fire truck pull up to the house with sirens and lights and watched on with curosity. Noah was eager, happy and he even reached out to touch Santa's hand when Santa offered it to him. He even watched as Santa and all his helpers climbed back onto the fire truck and drove away. His expression was wanting to run after them and ride along - just like any almost three year old might. He's trying. He's trying so hard. He's in there, he understands it all. One of Noah's therapist was so kind and delivered his gifts from Saturday's missed event for him and his brother. We are going to save them for Christmas, so that Santa can leave them under the tree. Being able to provide Christmas gifts or even birthday gifts is a financial challenge. I state that no way in no way complaining about our circumstances, but simply the reality that many special needs family face. It is such a blessing that such places that want to help special needs children have a brighter holiday, also include their siblings. It means the world to families like ours.

Noah continued his amazing eating today. I fixed him organic mac and cheese for lunch - the noodles were a bit thicker but he did it. And he did it with ease. I am of course going so slow and easy that it takes me much longer to feed him. He is so patient with me, as this is new territory for me as well. I don't want to get overly confident or rush Noah with this progress. This is a huge step for him. I am proud and want to still take this new advancement slow for him. We might try maybe some scrambled eggs in the morning - we'll see. He's by no means ready for a sandwhich, or has the abilty required to chew complex solids. But with a lot of time, help and love - we'll get there.


I read an article the other day on the preservation of baby teeth to obtain stem cells to treat cerebral palsy the other day...comes with a price tag almost just as bad as saving sibiling cord blood and tissue stem cells. $800 a tooth - not including the storage fee. Wow. I wonder what the toothfairy would think of that? And they really don't tell you how many baby teeth they would need for treatments. I still believe there is such promise in stem cell therapy, I just don't know if anyone truly knows the best way to administer them just yet. I do feel that stem cells will one day help Noah in his recovery.

So now Chris and I start the hunt for birthday and Christmas goodies for Noah... always a challenge to find age appropriate toys that Noah can engage in. I was thinking maybe I would search out some special needs paint brushes, maybe some inexpensive communication aids like flash cards. He is making appropriate eye gaze choices and attempts to swat and chose correct answers with flash cards during speech therapy, just another indication that Noah is understanding way more than many give him credit for. After Santa left we told Noah that eventhough he didn't tell Santa what he wanted that Santa can read minds and already knows. We got the biggest smile from Noah. I just love him so much. I could hug and squeeze him endlessly.

Love,



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

Friday, December 2, 2011

Let it Be Christmas....

Food can be so fun & messy
Noah's 1st solid meal






Let it Be Christmas...





The house is decorated, the stockings hung with love, angels to look over us during the holdiay season and lights to guide our way. It has become a time where I just don't celebrate Christmas but I celebreate you Noah. I celebrate your life and how far you've come in nearly three years. You will forever and always be the best Christmas gift I have ever received.


We had another little miracle today Noah. You had your very first solid food lunch. I had hoped you were ready and you were. Today you had Chef Boyardee spaghetti and meatballs (minus the meatballs because I am not sure about those just yet). You handled yourself like you've always eaten solid foods. Not a single gag, flawless swallowing. And you even were able to suck back the noodles that hung out of your mouth! - Which leads me to believe straw sucking may be possible for you. Unbelievable, and truly inspiring. This is something you couldn't have done a short few months ago. I of course called your daddy and your grandmother right away to tell them of this amazing accomplishment and took pictures of this special moment. I will probably be on cloud 9 for days... maybe weeks! To think how far you have from where we started. To all whom have ever doubted that you had the potential to ever find any recovery... never count Noah out. He is a fighter. He is a survivor. He is a miracle.

Tomorrow you have a full schedule lined up of Santa... Your therapy school is doing Santa tomorrow and the City of Westminster has Santa scheduled to arrive for you tomorrow evening on the fire truck. What fun. Hopefully this being the third time you have seen Santa, will be all smiles and laughter. I still remember your terrifying screams as you watched Santa get off the fire truck and walk up our driveway. It was funny and sad at the same time. Last year was slightly better, but you still looked at Santa with extreme uncertainty and you certainly didn't want Santa to hold you. So we will see. We are hoping that you have a day of nothing but joy.

Love,




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