Noah Dines Out!

Noah dinned out for the very first time at eight months, 2 weeks and 2 days! He finally made it out to the Village Inn. At first I wasn't sure that it was going to go well, Noah started to squawk and I figured it was just a matter of time before brunch with his great grandmother would be rudely interrupted. We brought a special high chair for him, since restaurant ones can't really accommodate Noah's lack of balance, head control and arching problems. I was worried that people would be looking and wondering why Noah was acting out, and I told the waitress that I was sorry about Noah being noisy but that Noah was special.

The waitress was so nice and said with a small pause, my child is special too. She is twenty now and has down syndrome. She understood, and told me that she just figured all those years ago that she too was chosen to have a special needs child. She said when her daughter was first born a nurse told her remember she has downs but downs doesn't have her. That's how I need to think of Noah. Noah has a brain injury but his brain injury doesn't have him. He will find a way to beat it.

I asked if she had any applesauce that I could give to Noah. I didn't bring anything with me because I didn't think Noah would be hungry at all, but he definitely wanted to participate in eating. Thank goodness they had some Motts Applesauce in a little container. She totally rescued me. I didn't have a soft baby spoon so I just used my finger to dip and and feed him. He really loved it, I'm sure because it was real applesauce with real sugar. When I was feeding him with my finger I noticed that he has a bottom tooth trying to come up. I could feel it under the gums, on the lower right side. I can't see it yet, but I can feel it so teeth are very much on the horizon.

Noah did some new exercises in therapy today. He was on a giant swing with his therapist. It is the coolest swing, and if I thought I could find a way to rig my house with it, and finance such a critter I'd probably build it. Noah loved it. Two weeks ago Noah had very little head control during therapy. Now his head is so steady he can be in motion and hold it up. It sometimes still wants to fall forward but he's now able to catch his head and re-center it. His therapists think his head control has gotten tremendously better. Noah still can't sit on his own, and his balance is terrible. But he's trying super hard. The determination behind those pretty blue eyes tells me that he will get there, someday.

Noah also got to wear his belly band for the first time today, and no surprise it doesn't fit. It's too small because he's too long, so he was re-measured and I have to re-order it. Of course it's out of pocket costs again. I'm a little frustrated that it doesn't fit, but he needs it so we have to repurchase it. My mother told me a while ago of a wives tale of having a purple bowl. She said if you have a purple bowl sitting out in your house you will never be without money. Maybe I need to shine the bowl? Talk to it? Stroke it gently? Take the rotten fruit out of it so it feels better? The purple bowl is obviously a little mad at me right now. Yet it remains faithfully in the kitchen because one day I have hopes that it will provide.

Noah's also been a great sport about all the contractors and insurance agents that have been in and out of the house to repair the hail damage. In a way I'm very thankful for that horrible storm. Without it the house wouldn't have gotten a fix at all. Although it was noisy Noah did good. He flinched every time he heard a loud noise in his sleep, but never woke up. Just kept flinching. It was cute. Thankfully we're done with almost all the claims repairs, however sadly other things in the house are breaking down. Chris has exhausted all efforts to fix them himself and I keep telling him he can try and try, but it's going to come down to paying that dreaded $125 service fee.

Noah's Rody Pony arrived in the mail today, so hopefully Chris can get it blown up, so we can start therapy on it soon, I can't wait to post pictures of Noah on his new blue pony!

Love,
Stacy, Chris & Noah

Noah Sees Butterflies

Chris and I took Noah to the Butterfly Pavilion for our first family activity. We really wanted to go to the zoo, but we know that Noah wouldn't even make it half way there in a car seat. But the Butterfly Pavilion was wonderful. Noah loved it. He loves to be visually stimulated, he loves to learn and look. He even smiled and laughed as the caretaker of the resident tarantula showed him the giant spider in the palm of his hand. Such a little boy response. But it was wonderful to see Noah reacting in a way similar to how I think other babies might.

And then as we were leaving we had to pass the gift shop and Noah reached out and grabbed a stuffed spider hand puppet with a metallic body and then held it with two hands using all open fingers on both hands in the middle. He held it so tight he wasn't going to give it up. I wanted to almost fall to my knees and cry right there. It's the first time Noah has been able to grasp something on his own without me putting it in his hands, the first time he reached for something he wanted, the first time he clutched with both hands.

Noah wouldn't let go of his sparkly spider so the cashier ripped off the tag to ring us out, all the while Noah continued his firm grip on his new prize. I love that spider. We have to give it a name, it's very special to me, and obviously to Noah. I must never lose it, it's an incredible memory, a first for Noah.

Noah had a doctor's appointment for a re-check on his acid reflux. I really didn't come away from this appointment feeling very positive about it. I had to go over again Noah's diagnosis, his therapy and such, with a doctor that had already seen Noah. I left feeling like he's just another number to everyone. Granted I'm sure there are lots of patients that they see, but I shouldn't have to go over everything like it's the first time I've been there. I explained that Noah's reflux has gotten much better and we did not need medication and she said she wanted to see for herself and asked me to feed Noah in front of her as if to insinuate I was lying. And then said she thought Noah's regular arching was seizures and I said no, Noah arches when he's mad or tired or excited. He has lots of extension. Neurology and his therapists have both seen this type of arching and know that it's not a seizure. I feel like no one really wants to take the time to get to know Noah. To bond with him medically. In a perfect world I know. There's so much I wish I could change but can't.

I'm exhausted physically and emotionally. This can be a very lonely experience. I don't get to participate in the world like average moms do. I have to calculate every trip down to the minute, estimate how long Noah can be in the car seat, figure out how long I can hold him when he's arching without help. I can't go anywhere on a whim.

Noah's therapists also recommended that we set up an appointment for Noah to see a Rehab Specialist at Children's. He has an appointment in October, another opinion to add to our collection. They also thought that it might be beneficial to get Noah evaluated for speech therapy so more therapy is probably on the horizon. We're already up to three times weekly, so it might be something where Noah has therapy every day. I also went out an bought more recommended therapy items for Noah today. Special toys designed to help him. I wish these things were a little less expensive, but I don't even think twice about it. Buy now, figure out how to pay for it later. I have to do whatever Noah needs and if they tell me he needs it, then it is our responsibility to provide it.

Trying to balance money is hard and scary at the same time. You'd think that we'd have all of our medical bills resolved by now, but we don't. I get a new one about once a week, everyone trying to dodge the responsibility of paying this or that. Today I got another one for $680.17, Kaiser is claiming I haven't met my co-pays, but I maxed them out, Children's says they can't bill Medicaid because although I applied February 5th, my interview and acceptance wasn't until February 26th, so the farthest back Medicaid will go is December 26th. Kaiser says that because Noah didn't come home with me after birth that the same co-pays and billing rules don't apply. All these bills are for the very day he was born. There are days where all the bills come in and honestly I just want to sit in the middle of the floor, scream so loud that I force every angel off their cloud to come down and hug me and then just cry it out. I'm frustrated and exhausted by the whole process. It's the continuous cycle. The bills never end.

I'm finding that having a special needs child impacts all families financially. One parent has to stay home because the child's needs are too great creating a one family income, you still have to maintain all your current debts, and house payments, vehicle payments, all the while introducing new expenses like hospital bills, therapy equipment, therapeutic gadgets and toys. I hear other mothers concerned just like me, how to provide for their families while obtaining custom made vans for wheelchairs, and trying to get equipment that cost thousands of dollars. We're all stressed and worry about it. I am no different than they are.

There With Care came today to bring us our groceries and diapers. I don't know what we'd do without them. They have been such a blessing in our lives. Pam, our volunteer coordinator, who brings everything to us is such a sweet, beautiful lady. Her and Noah share the same birthday. Today she brought me the most breathtaking yellow mums in a basket that her and her husband bought for us. She even went out special and got us diapers since the food bank center didn't have any. I just cried. I wanted to just hug her and not let go. It meant so much to me to just know today that someone thought of us, someone cared. One person's kindness lasts a lifetime. Just another one of the many angels that has come to our rescue. Thank goodness this is all typed and not handwritten as my words would be stained with tears.

Angels lift us to our feet when our wings have trouble remembering how to fly.

I've attached some pictures of Noah's Butterfly trip on his website:http://www.noahsmiracle.blogspot.com/

Love, Stacy, Chris & Noah

Noah Sees Butterflies

Mom, Dad & Noah

Noah making a face at the butterfly that just went by

Nothing like a beautiful smile

Showing Noah that he can stand!

Noah observing butterflies

Enjoying the ride

Noah Is Under Construction

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.

Love,
Stacy, Chris & Noah

Noah the Little Peanut

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:
http://www.wishuponahero.com/wishes/?id=349861

God bless you all
Love,

Stacy, Chris & Noah

Noah's New Gloves

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.

Love,

Stacy, Chris & Noah