Saturday, July 31, 2010

Noah Goes Swimming

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Noah was invited to attend a parent and toddler swim class this week. At first it was a disaster with Noah crying knowing what the pool was from last week and knowing he was going to get wet. It took him around ten minutes to finally adjust and calm down, with me in the pool holding him the entire time. After a while he felt safe and I was even able get him to let go of the tight bear hug he had on me enough to let his legs float freely behind him.

Towards the end he even let the therapist hold him in the water and we practiced trying to loosen his stiff arms, kicking off the side of the pool and even holding his own head above water, which he did for a good minute or more before he started to get tired. I really think that warm water therapy will really benefit Noah. He gets so frustrated in his little body. He wants to do so much but has all these physical limitations. I know that his body is often very uncomfortable for him. It's hard for him to sleep at night because he can't move freely, he gets stuck in positions he can't get out of, often times this leaves him a bit restless.

We're still planning on enrolling Noah in warm water therapy and a five to ten week parent and toddler sensory class starting the beginning of September. I have thirty days to creatively figure out how to fund all of it for the next six months.

In the last week Noah's "swatting" at his bottles and spoons have increased. I genuinely believe it is his attempt at trying to hold his own bottle or spoon. He doesn't know how to flex his stiff arms so that's all he can do is just swat to try to get them. But we are so proud of all his efforts as uncoordinated and ungraceful they may be.

Noah got his special needs Britax Traveler Plus EL car seat yesterday. It is truly one big car seat. Hopefully it's going to fit in my very small SUV. The weight limit goes past a hundred pounds for a special needs child, so it will be a seat he will have for a very long time. Realistically, Chris and I both know that our "little vehicles" will not accommodate all of Noah's gear in the future. But on only one income plus all of Noah's special needs costs, finding a larger vehicle will be another difficult thing for us. But with everything we'll try to cross that bridge when we come to it, unless we find that that this car seat won't fit and then I guess that bridge might be coming sooner than we thought.

I think Noah is also making more of an effort to voice his opinions. Chris and I can't help but laugh every time we turn the vacuum on. He literally is telling off the vacuum, it's the only time we ever get to see Noah mad. But he hates that vacuum and takes every opportunity to yell at it. It's the funniest thing, and Chris and I can't stop laughing at how serious he is. We can't understand any of his words, I'd like to say it's a form of babble and that it may lead to speech later on.

We're also looking into attempting to get Noah and IPad. We've heard so many success stories from so many special needs families that have purchase the IPad for communication assistance. Unfortunately, Medicaid will not cover the cost, and even the basic model at $499.99 for us is currently out of reach. Most applications would only cost us an additional few dollars, but there is one speech application called the Proloquo2go, that would cost us around $200. Chris and I really think Noah would benefit from the IPad, and I'm hoping that we'll find an avenue to pursue that will help us be able to get him one in the near future. You can view this website that discusses the benefits and other children with special needs using the IPad at:

http://www.babieswithipads.blogspot.com/

Our hopes are the Ipad could help Noah with his communication, cognition, play, and his auditory and visual motor skills. Noah because of his physical limitations cannot play like other children his age. He cannot stack toys, put them in strange tight places, hold them or throw them across the room. My mother mentioned the other day all Noah has are baby toys, no toddler boy toys, but how do you get Noah a train set or a big tractor truck when all he can do is look at it? It's a very hard thing for us. We'd love it if he was able to participate like everyone else. In our hearts we still hold the hope that someday he will.

Chris and I put wall art up by our front door to remind us always to continue to believe.
"Everyday holds a possibility of a Miracle"

Love,



Monday, July 26, 2010

Life is Precious

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Today Noah witnessed his first car accident. He's much too little to know what he seen, and I'm thankful for that since it was a bit traumatic. There were two police cars at the light, I remember looking at them both thinking, don't make a driving mistake and don't turn on a caution just in case. Little did I know that those police cars would serve to be the one thing that prevented us from being too close to the car that caused the accident.

Just as I was second guessing my turn, a red car went up and over a huge embankment, headed straight towards us. I had a rush of panic and the car suddenly hit the traffic pole head on which caused the car to turn, avoiding us. I watched as the car drifted past my driver's side with the driver having what seemed to be a seizure, his passenger clearly stunned. I think the driver was having a medical emergency, and lost control, although I'll likely never know for sure. Thankfully those two police officers were there immediately, and hopefully were able to help that driver quicker than if someone had to have been called. I couldn't really stop and stay, knowing I had Noah with me and how difficult that would have been so I left my information if they needed me at a later date. I felt more comfortable knowing that I was leaving with authorities already there to help.

It all could have been so very different for Noah and I had that traffic pole not been there to divert the car. Today angels looked out for us. We were able to come home. We both were okay. It only takes just a blink and your life can change at any moment.

We take our moments here so much for granted. Never fail to remind those around you how much you love them every opportunity you get. Life is fragile and our candle can go out at any time for any reason.

"We only live once. During the down days, if you choose to keep in mind that you probably have more chances than others, more things to be thankful for than others, and more time to live on this Earth than others, you'd be reminded that your life is indeed very precious."
unknown

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, July 23, 2010

Noah Goes to Class

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Yesterday Noah and I were invited to sit in on a mommy and me sensory class. It was a lot of fun for Noah, he enjoyed it tremendously. He laughed and smiled at appropriate times, socialized well, and had an interest in everything that was going on. I really feel he understood he was participating. It was reassuring to me to see how aware he seems to be. All of the children were a bit older than him, all mobile and speaking, but it was wonderful to have him so interested in what everyone was doing.

We also did a pool consult today after the mommy and me class. Much to my surprise Noah did quite well. We have a Water Way Babies in-home tub that was given to Noah as a gift. Unfortunately he's terrified of it, and gets so worked up that he attempts to inhale water as he's splashing for freedom. So I anticipated that his warm water therapy consult would not go well. He was a little apprehensive at first, but the therapist agreed he wasn't terrified, just unsure as it was new and by the end of the consult he was letting me dip him waist up without complaint.

We're hoping to get Noah into the sensory classes and warm water therapy in September at the next enrollment date. However, the therapists indicated that Medicaid will not pay for either therapy. So once again we find ourselves on our own paying out of pocket - a familiar feeling for us these days. I'm not exactly sure how we are going to fund this just yet. The therapists recommended I look for scholarships and foundations to help. I will do my best, but sometimes help is hard to come by.

So for now I'm going to take a deep breath and pray God shows me what door to open, and take it from there. We have to just take things a second at a time. I'll do all that I can, and just continue to hope I don't fall short of being able to get Noah all that he needs.

Noah also had a play date today with a sweet little girl by the name of Julia. She also has special needs and it's always so nice to have the two of them get together. We take walks together and went to the park so Noah could try his hugga bebe' in the bucket swings. He had a really good time. Noah loves to study Julia. He is fascinated with her movements, and tender noises - he especially likes her ride equipped with wind mobiles and beads, all attached for her sensory enjoyment. Two sweet little souls on the special needs road going down the path happily in jogging strollers with their caregivers smiling along the way.

"Friendship needs no words..."
-- Dag Hammarskjold.

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, July 20, 2010

Noah and his Hugga-Bebe'

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I am always hunting products that we can afford that will assist Noah in his continuing development and growth. I was reading a magazine that somehow found it's way to my mailbox for babies and ran across something called the Hugga-Bebe'. It's a cushioned baby support that assists your baby with sitting. It is not marketed as a special needs product, but it is fantastic and would work for any special needs little one. The price is unbelievably reasonable at $29.00. One of the more less expensive purchases we've made to assist Noah.
The seat is designed to be an insert into bucket swings, bouncy chairs, and walkers. However we took Noah to Costco tonight and also used it as seating support in the grocery cart. It is wonderful. Noah even makes attempts to sit up independently occasionally bringing his entire body and head forward. The only gadget I've found that seems to encourage him to do so. Which will only continue to help strengthen his trunk and back.

Noah is quite tall, and it has room to grow with him. Both babies and toddlers can use this. It has an expandable snapping at the bottom and is both machine and dry. I give this product one of the highest ratings I can. Truly it's one of the better things we have for him.

You can find more information on the Hugga-Bebe' at:

On the update front, Noah continues to roll about. He's getting around quite a lot by rolling over. He does occasionally get stuck when he brings both hands up by his head as if he were going to crawl. Yet I can tell he's thinking about what to do next when I give him time to contemplate his next move. He hasn't figured out how to army crawl but I don't count that out just yet. He seems driven to find a solution and hopefully with more time he'll find the answer he's looking for and will take off.

Noah and I are also going to a mommy and me sensory class later this week, and I'm excited that we'll both be doing something new and hopefully he'll enjoy it. I also thought about exploring a mommy and me yoga class, but I'm not sure if Noah would really find it all that relaxing or not - in addition we can't really afford any more extra-circular activities and therapies.

"Smile, it's free therapy."
Doug Horton

Love,


Friday, July 16, 2010

Noah's Christmas in July

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Noah & Bill


Noah got a lot a huge special delivery from his buddy Bill and his wife Marge yesterday. They came and surprised him with bags of goodies; a plush huggable Elmo that he just adores, winter coats, a booster seat, books and new DVD's for him to watch, pretty decorated night lights, and a really special Elmo bike. It was Noah's Christmas in July.

I looked at the picture of the Elmo bike still in the box. For a moment I thought to myself he may never learn to ride it, may never have the trunk and head control needed to do it. But then I remembered Bill's email:

"I can already see him using one of the bigger boy toys...HE WILL!!! Praise God... Just believe with us and you can see him doing it also....how cool is that day going to be!!!"

It actually brings lots of tears to my eyes when I think about all the people in this world, especially Bill that genuinely believe in little Noah. Standing behind him, cheering him on, knowing he will someday do great things. All things are possible - especially with God. I know that, or Noah wouldn't be here. He fought against impossible odds and he's here. So who's to say that he can't accomplish wonderful things in the future. It is quite possible that I'll be posting a picture one day of Noah going down the street in his Elmo bike. I just must believe.

From the very moment that special stranger, now known to us as Bill, touched Noah's foot in the NICU, they have formed this beautiful loving bond. Two souls destined to meet and forever connected over the power of prayer. An important person in Noah's book. Not only do Bill and Marge have such faith in our little Noah but they love us as a family as if we were their very own.

Today, tomorrow and the next day I'm going to imagine Noah riding that Elmo bike, because I too will believe.

"I believe in pink. I believe that laughing is the best calorie burner. I believe in kissing, kissing a lot. I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day and I believe in miracles."
Audrey Hepburn

Love,



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.

Tuesday, July 13, 2010

Noah's First Flame

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Noah's First Driver's License

Serious About my Driving






Honk if you love me!

Noah's Hibachi Ice Cream


Dinning Out

Flaming Onion Volcano


Noah got his first driver's license...

He took his vehicle out for a spin to his grandmother's house. He did very well keeping both hands on the his steering bars most of the time. And there was only one near miss accident which would not have been his fault since a small toddler tried to run him down from behind. Thankfully Noah had us as his back seat drivers and we avoided any possible accident.

I usually keep Noah's window closed at nights to decrease the level of sounds from the street. However we made the decision to keep it open a bit to allow for some cooler air to get into his nursery. We were up many times. Noah was quite restless - more so than usual. Chris and I both got up with Noah at 2:30 in the morning, only to figure out that Noah was awake because there was something outside his window occurring that was "not an act of God."

Three teenagers, two girls and a boy were vandalizing our car that was parked in our driveway. By the time the police were called they were already back in their white Toyota Camry headed down the street. The police indicated they could no longer find the vehicle in the area. And of course under the moonlight we could not obtain a license plate number.

Lately Chris and I have kind of felt like life continues to sucker-punch us, there is always something else for us to deal with, to handle, to overcome. I don't know how much it will cost to repair the car. I know we will likely never see assistance with repayment as that would require apprehension, prosecution and a restitution order, something I don't see happening. If these teenagers only knew what our lives are like, how hard things already are for us, and they just added to it - something so unnecessary and mean.

Noah also had a special dinning out at the Fuji Hibachi Grill this weekend compliments of his grandparents. Noah loved watching everyone and was super interested in his surroundings. He was a bit upset over the flames, but was easy to calm and considering it was the first time he had ever seen fire, it didn't go over that badly. I found it to be a normal reaction for any child.

Noah seemed interested in watching our chef prepare our food and all of his fast movements. There really wasn't anything there I could feed Noah other than ice cream, but he was so very happy to see his desert arrive. The food there is simply fantastic and the service is warm and friendly. It was so wonderful to have an evening together with the family.

"Never drive faster than your guardian angel can fly."
Unknown

Love,


Monday, July 5, 2010

Noah's Second Fourth of July

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Noah in his 4th of July Outfit




Noah's Fourth of July Outfit



Homemade Star-Spangled Triffle

Noah's second Fourth of July was much like his first. We had a low key day, a quiet walk to the lake to watch some rowdy unleashed large dogs frolic in the water, battling over a very large tree branch. It made me a bit uneasy, as you never know a stranger's animals enough to know if they are safe or not around young children so I kept Noah at a distance from the action. Noah loved watching the boats and water skis as the waves gently hit the shoreline. We came home and I made a Star-Spangled triffle, potato salad and homemade creamed corn for our little family bar-b-que.

We had a rough sleeping weekend, as Noah doesn't appreciate the neighbors constantly setting off fireworks. There are days when you wish you could get people to understand how their actions affect others. Days when I wish I could put them in our shoes just for a moment so they knew what it was like to try to calm a screaming upset baby on sensory overload. Sometimes I have that feeling too when I hear parents bragging about how successful their children are, how they'll be president one day, or the next "baby genius." For parents like me our only wish is that our children would just be able to move, talk, live independently. You wish you could just tie them down sometimes and say "hey look, want to trade and be me?"

Human beings by nature are self-absorbed and often times downright selfish. Rarely do others think about how their actions or words affect someone else. I'm sure I could have marched across the street and tried to explain how their fireworks for the last three days for hours on end have created a distraught household for us, only to get the response "so what?" Rarely do people care in that respect, it's not them having to go through it.

I prayed mother nature would just create a downpour to try to curb the action just for even one night. Mother nature listened and brought me a big rainstorm. However it didn't detour the neighbors one bit. Out in the pouring rain they continued to menace little Noah with roaring booms and launching devices. Chris and I took turns trying to soothe little Noah for hours on end, the only thing bringing him comfort was feeing the air conditioning on his feet and listening to K-Love (his favorite radio station). He'd fall asleep only to wake another twenty minutes later and we'd have to start the whole routine over again. Chris of course still being very limited to being able to helping me with Noah could only attempt to soothe him in his crib or on the floor. While I continued to bounce and rock him to the best of my ability.

Noah simply just isn't a fan of the Fourth of July. Although he wore his patriotic colors and cute little Noah's Ark flag outfit to demonstrate he likes Independence Day, just not the fireworks that accompany it. I'd like to believe that our neighbors are out of their firework stock, but I think that's wishful thinking on my part and I suspect I have a few more days of this.

My biggest advice is just take a moment to think about how things you are doing affect someone else. Please keep in mind not to make everything about you. Do something tremendously considerate and remember we all have to share this planet together.

"Behave so the aroma of your actions may enhance the general sweetness of the atmosphere."
Henry David Thoreau

Love,




Saturday, July 3, 2010

Pass it on Baby

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Noah in one of his Pass it on Baby Outfits


Noah received a very special box this week filled with love and help. There is an organization called Pass it on Baby that helps those that need help by finding families to donate gently used clothing to help other families. Most families with special needs children find themselves much like us - struggling financially to obtain all the items that are needed to assist our little ones. When you rub all your pennies together to get equipment or therapy it leaves little room to get the everyday basics.

Noah's little care box arrived with dozens of neatly folded clothing that smelled so fresh and new. The donor had taken a lot care and time wrapping each individual outfit up like a little present before putting it in the box. Noah knew they were for him as I laid each outfit out next to him so he could see.

It is policy that they don't disclose the identity of the donors. We will never know the person who gave such love and assistance, but my hope is they may read about Noah's journey and know how much they've made a difference in our lives by caring so very much about another.

I would encourage anyone who is discarding any children's clothing to contact Pass it on Baby. You too have the potential to brighten up a day, to help another struggling family, to lessen the heavy heart of another mother trying to provide all she can for her children. It is a great reward to know that you've helped give someone a helping hand. Please consider contacting Pass it On Baby today to see how you too can help.
http://passitonbaby.blogspot.com/

Many have come to our rescue over the last year and a half. Lifting us up when we were falling, offering us a helping hand with no expectations in return, loving us as if we were your own. To all of you including Pass it on Baby, thank you from every ounce of our hearts. You have been such a blessing in our lives.

"How beautiful a day can be when kindness touches it!"
~George Elliston

Love,


Thursday, July 1, 2010

Elated Over Elevators

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Noah and I have had to find cooler places to take our dally stroller walks as his legs are quickly turning into little dark hershey kisses. Yesterday we went to the mall, just the two of us. I took him to a store called Forever XXI. The overly flamboyant floor salesman was quick to greet us. Noah smiled as if he had received a personal invitation to the store. The music was booming to the point of being excessively loud - everything Noah enjoys. The large rather grandiose but pretty chandeliers gave a sort of strange ambiance to the store all the while fascinating Noah. The titled floor sparkled with glitter and suddenly Noah giggled in delight like he had found the perfect place to be.

I roamed the store looking at items that I would have worn ten years ago in my dress to impress stage way before motherhood. The days when accessorizing was fun, and looking cute was mandatory. I tried to appear interested holding shirts up to me as if I was pondering them, trying not to disappoint the salesman who still tracked us through the store hoping he could assist with a sale. And I was giving Noah all the time he wanted to soak up the atmosphere.

We headed out of the store to find that there was a small shop in the center of the mall selling toys that fly. Noah again found himself in a sort of heavenly state. He laughed and extended his long body with excitement, trying to move his stiff arms only to give away that he was not an ordinary baby. He gathered attention primarily because of his laughter, and maybe for slight curiosity of his awkward movements. Yet the cashier continued to demonstrate how high this little helicopter could fly just for Noah's amusement.

I loved seeing Noah in a state of pure joy. When I'm privileged to witness his happiness, somehow I feel it takes the focus off his many challenges and redirects them to his spirit. I of course really didn't have the money to be spending on such things, but I couldn't help myself as I said I'll take the red one pointing to the little helicopter in a box. I brought it home to his daddy who is still trying to learn how to fly it without crashing it.

Noah and I also enjoyed the last frapachino from my Starbucks card together, I had the coffee, he had the whip cream and we sat at a little table with him in his stroller, watching people pass us by. Many thinking we were just an ordinary mother and son. Some making comments about how cute Noah was. His sweet looks do attract a lot of attention from walker-bys. And Noah soaks up meeting new people.

The highlight to Noah's mall walk was of course the elevators. He's taking a tremendous liking to them. He giggles with extreme delight when the beep comes indicating a new floor has arrived. We road it four times just for his pleasure. It gives me this tingle in my heart to know I'm making him happy.

I could have sworn we had a conversation in the mall together over the poster of Godiva's new ice cream cones in their window. I was telling him how scrumptious I thought they looked, a word I reminded him had been on Sesame Street that morning. He talked back with various sounds then paused and looked at me for a response. Maybe it was just wishful thinking on my part that we were actually engaging in some sort of conversation, but it felt real.

"Enthusiasm is contagious. Be a carrier."
Susan Rabin

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.