Yesterday Noah and I went to the post office because we had to sign for a package. I didn't expect the line to be quite as big as it was, and worried that Noah was going to throw a fit with the amount of time it was going to take to get through the line. But, just like Noah's style he loves to pleasantly surprise me, and did nothing but smile and flirt with anyone who'd pay him any attention.
There were some nice ladies that of commented on how cute they thought Noah was and asked how old he was. I always tend to think once I tell someone he's a year old and they take notice and watch his movements that they'll know that something isn't quite right, so I always explain he's a special needs baby. Yet today, I don't think that Noah gave any of those secrets away on his own. He very much presented himself like any other sweet little baby without any type of handicap.
My second grade teacher, Mr. Waddingham was also at the post office in line in front of us. It was so wonderful to talk with him, it had been many years since I last seen him. I have such beautiful memories of all of my grade school teachers. I was so very fortunate to have great people in my life growing up. We briefly reminisced about second grade and all the fun things I remembered. And of course had to tell the nice ladies behind me, that this was my second grade teacher. I mentioned he taught me all that I know, and he replied "all but how to hold a baby." He always had such a great sense of humor. I find comfort in the familiar, especially when my past crosses with my present. Sometimes it gives me a feeling of coming full circle.
Noah's package that awaited us at the post office was quite special. It came all the way from Australia from a sweet lady named Meg and her family. You could tell it was packaged with such love. The package included a little note, a family picture, a birthday card, and christmas card, and the most adorable ornament with a kola bear hugging a candy cane. I loved it, and Noah did too as I read him each card twice. He winked at me at the very end like he completely understood everything and wanted me to continue on. I think he rather loves hearing about himself.
Noah sat today briefly unassisted, maybe only twenty seconds if that, but he had weight on both arms with one leg relaxed and tucked and socialized with the dogs through the baby gate. I think the distraction of the dogs took his mind off the fact that he was working hard and really sitting all on his own. The dogs and Noah have a special connection anyway. They talk to each other and I'd swear that Noah knows dog language. He especially loves it when they kiss his hands. Brystal, who I've always called our little healer besides super sneaky, knows exactly where Noah's weaknesses are and I think she is encouraging him even if it means she looses a fist full of hair when he latches on to her back. Hollie is simply the entertainer. She wants nothing more than for Noah to throw her a frisbee or toss her a ball. She looks to egg Noah on, like if I ram you enough with my nose you'll try.
Noah's hardware for his platform swing arrived today, but the swing itself is on back order according to the invoice. It didn't give an expected estimated arrival date, but we are so excited that it's coming soon.
"Belief is truth held in the mind; faith is a fire in the heart."
Joseph Fort Newton
Love,
Stacy, Chris & Noah
Wednesday, December 30, 2009
Monday, December 28, 2009
Noah's Christmas
Riding My Bike in the Kitchen
Holding On Tight
Noah's Car Racing Toy Box
Noah's Christmas Ride
Wow, He's a Really Big Bear! 
Hanging out in my Jammies with my new toy
The Goodies I left for Santa
Santa's Special Note to Me! 
My Gifts From Santa Christmas morning, I awoke to a Christmas song playing on Noah's baby monitor in the bedroom. It was a song that kept singing the words "just believe" over and over. It appeared to be playing a radio station of some sort, Chris and I couldn't figure out why the baby monitor was picking up any kind of music, nothing was on in the house, and there were no cars outside the house that it could have picked it up from. The monitor has never picked up any music before, and hasn't done it since. Nonetheless, it was a nice way to start Christmas morning with such a great message.
Noah stayed in his Santa's Helper Red Jammies with Reindeer feet all day long. I think he was in awe of all the things Santa left him under the tree. I got his first little bike. He has some balancing issues, and of course still requires a five point harness, he seemed to really enjoy it until I put his helmet on, and then it was all over. I think he's still trying to recover from the birthday hats, maybe he'll feel differently about wearing his helmet next week.
He also got a giant teddy bear to lean up against. He still often has a tendency to arch out of sitting, but the bear is big enough so that when he doesn't do that anymore it might help him just prop sit. It's the cutest bear. He also got his first pair of real shoes from his grandma. A pair of little sketchers. They are precious. His remote control car also seemed to be a big hit, he watches it intently and his tracking is amazing. He'll follow it with his eyes wherever it goes.
Christmas was really nice and relaxed. We all took naps through the day, and I was able to cook a really nice Christmas dinner for all of us. It felt wonderful to be home, to celebrate with Noah.
Noah had a major meltdown in therapy today. Probably the biggest meltdown I've ever seen him have at therapy. I felt so bad for his therapist Julie, he really wasn't going to give her much time to work with. It was really unlike Noah to get that upset, especially when someone is holding him. He has been a little constipated and his nap was cut a bit short for therapy, he still has a lot of teeth that need to come in, so it could be anything I suppose that set him off. But he was not his usual easy going self.
Julie and I talked about Noah's potential to crawl, she says with his level of spasticity that it is unlikely that he'll crawl, but that he'll probably find some way of moving about. I suppose I'd be relieved if he even moves like a little worm across the floor, I'd just love to see him be able to be mobile. She also expressed a little concern that Noah is still having some difficulties swallowing or managing his saliva. Something that Chris and I both have recognized over a period of months. Some days he's great, other days he chokes or coughs a bit to correct himself. But so far we've been very lucky that he hasn't had any aspiration problems or has fallen ill as a result.
I've attached some pictures of Noah on his bike and of Christmas. I think he truly had a wonderful holiday.
Love,
Stacy, Chris & Noah
Thursday, December 24, 2009
Noah's First Birthday
The Birthday Boy!
My Cupcake Hat
Seriously Mom, I can't believe I'm wearing this!
My Fishing Birthday Hat
Happy to be ONE!
Mr. Cute on his Birthday
Lighting the Big Cake
Diving in making a mess
Getting Ready to Destroy the Pretty Cake
Noah's Big Cake
Noah's Little Cake
Noah had a great first birthday. He was all smiles all day long. And I held him so tight at exactly 8:51am. Making up for the fact I couldn't hold him that time last year. Noah would tell you it was a very emotional day for me. But in the most beautiful of ways. There's nothing like celebrating a day you thought at one time would never come. It's better than any hard earned graduation party, any new years eve party filled with a special kiss, it even beats the most beautiful of wedding receptions. Celebrating Noah's life, his one year birthday was amazing.
I had gotten Noah some special hats for his birthday. I don't think he was much interested in the hats, they were mostly for my amusement. But he tolerated them as such to give me at least a few pictures. Noah's cakes from Das Meyer were adorable and just as I had pictured them in my head. His individual cake with a sprayed on teddy bear stencil, with special light blue and light green balloons and curly ribbon. His bigger companion cake was just as cute, and almost identical in decoration.
I think I under-estimated the mess Noah would make with his cake. I had envisioned him having great difficulty even touching it let alone throwing the cake every which direction. But as soon as it was in front of him, it was pretty much over. Both hands dove into the cake. I don't think he recognized it was something yummy until I took one of the icing covered hands and placed it to his mouth. He then realized he had scored something sweet. Noah still required assistance to get his hands to his mouth, but I could tell his arms were quite relaxed as I helped hold it there for him. He threw cake everywhere in the dinning room, even this morning I found it on the walls. Congratulations Noah, you made your first very big mess in the house. Way to go little guy! Your dogs are very much thanking you today as they continue to find dried up frosting to crunch on here and there.
I of course couldn't make it through singing Happy Birthday without being overcome with emotion as the happy tears started to flow. My heart is just overwhelemed with such joy, such thankfulness that I have him, and no matter what - even if Noah isn't "perfect" like other babies might be, he is mine and I love every inch of him.
I of course couldn't make it through singing Happy Birthday without being overcome with emotion as the happy tears started to flow. My heart is just overwhelemed with such joy, such thankfulness that I have him, and no matter what - even if Noah isn't "perfect" like other babies might be, he is mine and I love every inch of him.
Noah was a pretty good sport the entire night eventhough I had pushed his bathtime back to open presents. He got the cutest little Elmo that says "Up, Up" words that Noah very much knows. Because I ask him all the time if he wants me to pick him "up", he got some really fun Elmo and Learning DVD's, a fun Elmo gadget that makes noise and lights up, some stuffed toys, a learning block, Thomas the Train bath toys, a special cuddle therapy swing, and of course I had to get him some new socks because his feet just continue to grow.
Chris I know very much enjoyed the opening presents part as he loves to play with Noah's toys just about as much as Noah does. I love to see the two of them together. They have the most amazing bond. Noah and his daddy are very close.
Chris I know very much enjoyed the opening presents part as he loves to play with Noah's toys just about as much as Noah does. I love to see the two of them together. They have the most amazing bond. Noah and his daddy are very close.
Thank you to everyone for all of your wonderful birthday cards, gifts, wishes, thoughts and prayers for Noah's first birthday. It is a memory I will forever hold in a special place in my heart.
Love,
Stacy, Chris & Noah
Wednesday, December 23, 2009
Happy Birthday My Sweet Noah
My Sweet Dear Noah,
Happy Birthday Noah, you are one year old today.
Your beginning started out as a terrifying struggle for survival. I still remember so very vividly when I first laid my eyes upon you. Your sweet body was covered in tubes and wires and you rested in a little plastic container destined to take you away from me. I was not in that moment frightened for you. I cried tears of joy as I said out loud, “he’s the most beautiful thing I have ever seen”. In that moment I felt no pain, could hear no one else around me, it was just you, me and God. You laid quite still. I watched your stomach move to breathe, looked at all the dark hair with a single curl at the very top. I loved you with every inch of my being. More than I’ve ever loved anything in this world.
Our journey began a year ago today - a life-altering event that we didn’t expect. I didn’t initially realize how serious your condition was. Thankfully, as I look back on it now I was grateful to have had been medicated as heavily as I was, so I didn’t fully comprehend how much you were fighting to be here. Christmas morning came, and we were still apart. Before the sun came up your doctors called us to ask if we would allow a blood transfusion, and told us you had been having seizures all night and they couldn’t get you stable. Your daddy spent the day with you, by your side. I remember trying to watch a parade on the hospital television, but I went in and out of sleep, missing blocks of time. I tried talking to people but could hear myself slurring words, and not making sense. A lady came to me, although I couldn’t tell you today what she looked like, but she kneeled down by my bedside opened my weak and unsteady hand to give me a pink rosary and told me we would be okay. Your daddy came back filled with tears that day, I was worried he didn’t know how to tell me you had gone to heaven.
When I was finally strong enough to be reunited with you I rushed to your side only to find that you were hooked up to so many machines and wires I could barely get to you. Your entire body shook with breathing machines, your head wrapped in what looked like a gob of tin foil, you looked lifeless and swollen. They said I could touch you, I didn’t know how, didn’t know where to even begin to find a way to comfort you. All I could safely get to was your little foot. I picked it up and held it so gently not to disturb the saturation monitor they had on you. I couldn’t talk to you, I just cried inconsolably, with my painful cry echoing every hallway. You moved your foot that I was holding and I told your daddy, “see he’ll be fine he moved his foot.” I felt you come alive, I knew you felt me.
My confidence in your survival was strong until they told us that your test results showed global brain damage and that you would not be able to survive on your own without breathing assistance. Our world crumbled, we didn’t know what to do, we had faith you’d be okay, but all the doctors told us there was no hope. We thought we had gotten the courage to say goodbye if you had wanted to go to heaven. We chose a day to take special pictures of you and take you off all the machines. I knew I wasn’t going to say goodbye that day even if it meant putting you back on machines to stay. I wasn’t ready. But God knew that. He sent for you two very special people, Bill and Ernie who held your foot, prayed for you and helped give you what you needed to stay. Even after they had left I wasn’t sure you would stay with us through the night. I looked at you and you looked at me with the same seriousness that you still do to this day. Do you remember what I asked you? I asked that you not look at the angels, not to listen to them, as I knew they must be pretty, and I felt many of them, but that I wanted you to stay with me, not to go with them.
You came home with us two days after, still not knowing if you would leave us at any time. But as the minutes turned into days and days into weeks and then into months, all the while you continued to get stronger and stronger. You had declared you were here to stay.
You have since made such a difference in this world in such a short amount of time. People who haven’t yet had the wonderful opportunity to meet you have fallen in love with you. We had asked that those you’ve touched send you special letters this year and this is my letter to you:
You have taught me a multitude of things in this short year. I planned my life out for as long as I could remember, calculating every step I made along the way, counting each goal as if it made me a superstar. The first thing you taught me is you can’t plan life. Someone once told me “If you want to make God laugh tell him your plans for your life.” That is so true. Life is unpredictable, we have some control over things, but most is God’s plan for us. Houses, cars, fancy diplomas, big careers, and possessions – none of them matter. Life matters, love matters.
You were meant to be here, meant to have the difficult birth you had, meant to face the challenges that you are. One day I pray that it will all be revealed to me, the purpose behind all of our hardships, our tears, that you will rise above every challenge before you to conquer all the dreams you desire.
When I look into your sweet baby blues, I think you understand that best of all. I feel you chose this, you knew that this is how it would be and you still wanted to be here. For that I am so very thankful. I can’t imagine what this world would be like without you in it. And I’m so glad you had the courage to stay knowing that your road would be harder than most.
You’ve shown me patience to give you the time to accomplish all these milestones that are moving slower for you. The sweetest rewards in life are the ones that you have to work the hardest for. You’ve shown me what things in life are truly worth fighting for, what things are trivial, and taught me to focus every part of positive energy I have in all the best directions.
You’ve taught me so much about people. Before you were born, I was hesitant to be that “social butterfly” that you’ll find your grandmother to be. I cautiously went about choosing friends, always wondering what intentions lay behind each person before including them in my life. You have opened doors to show me the beauty that people have, the love that they have for even those they have never met, you’ve restored my faith in my fellow man. God has brought countless people into our lives, none of them I would have had the pleasure to know had it not been you that had connected us. You have gathered people in love, restored faith, and given us hope.
When I see your smile and hear your laughter it reminds me of everything beautiful that God has created, the miracle that he has given to us, and presented to all. You are living proof that all things are possible, Noah. As time goes on, I see such determination and you’re strong will to succeed. Although there are a lot of things that do not come naturally for you, I see you trying so very hard everyday to find a way around it all to accomplish all that you set your mind to.
I couldn’t be more proud of you, more happy to be your mother. You are amazing in every sense of the word. And we are never alone. There are days when the house smells like fresh cut roses, those are the days I know God comes to check in on you. I wish you could tell me about all of your experiences, all that you know, all that you’ve come to do in this lifetime. There are secrets I see in your tender face, that I hope you’ll be able to share with me someday. You offer me comfort beneath my worries, and always find an unspoken way of reminding me of all the sunshine that surrounds us if I only look hard enough for it.
You will always be the most important part of our lives, we are so blessed to have you, to be able to share this journey with you. There isn’t a day that goes by that I don’t thank God for his December Rainbow and his sweet promise to you. Happy First Birthday my little boy. We love you so very much.
Love,
Mommy
Happy Birthday Noah, you are one year old today.
Your beginning started out as a terrifying struggle for survival. I still remember so very vividly when I first laid my eyes upon you. Your sweet body was covered in tubes and wires and you rested in a little plastic container destined to take you away from me. I was not in that moment frightened for you. I cried tears of joy as I said out loud, “he’s the most beautiful thing I have ever seen”. In that moment I felt no pain, could hear no one else around me, it was just you, me and God. You laid quite still. I watched your stomach move to breathe, looked at all the dark hair with a single curl at the very top. I loved you with every inch of my being. More than I’ve ever loved anything in this world.
Our journey began a year ago today - a life-altering event that we didn’t expect. I didn’t initially realize how serious your condition was. Thankfully, as I look back on it now I was grateful to have had been medicated as heavily as I was, so I didn’t fully comprehend how much you were fighting to be here. Christmas morning came, and we were still apart. Before the sun came up your doctors called us to ask if we would allow a blood transfusion, and told us you had been having seizures all night and they couldn’t get you stable. Your daddy spent the day with you, by your side. I remember trying to watch a parade on the hospital television, but I went in and out of sleep, missing blocks of time. I tried talking to people but could hear myself slurring words, and not making sense. A lady came to me, although I couldn’t tell you today what she looked like, but she kneeled down by my bedside opened my weak and unsteady hand to give me a pink rosary and told me we would be okay. Your daddy came back filled with tears that day, I was worried he didn’t know how to tell me you had gone to heaven.
When I was finally strong enough to be reunited with you I rushed to your side only to find that you were hooked up to so many machines and wires I could barely get to you. Your entire body shook with breathing machines, your head wrapped in what looked like a gob of tin foil, you looked lifeless and swollen. They said I could touch you, I didn’t know how, didn’t know where to even begin to find a way to comfort you. All I could safely get to was your little foot. I picked it up and held it so gently not to disturb the saturation monitor they had on you. I couldn’t talk to you, I just cried inconsolably, with my painful cry echoing every hallway. You moved your foot that I was holding and I told your daddy, “see he’ll be fine he moved his foot.” I felt you come alive, I knew you felt me.
My confidence in your survival was strong until they told us that your test results showed global brain damage and that you would not be able to survive on your own without breathing assistance. Our world crumbled, we didn’t know what to do, we had faith you’d be okay, but all the doctors told us there was no hope. We thought we had gotten the courage to say goodbye if you had wanted to go to heaven. We chose a day to take special pictures of you and take you off all the machines. I knew I wasn’t going to say goodbye that day even if it meant putting you back on machines to stay. I wasn’t ready. But God knew that. He sent for you two very special people, Bill and Ernie who held your foot, prayed for you and helped give you what you needed to stay. Even after they had left I wasn’t sure you would stay with us through the night. I looked at you and you looked at me with the same seriousness that you still do to this day. Do you remember what I asked you? I asked that you not look at the angels, not to listen to them, as I knew they must be pretty, and I felt many of them, but that I wanted you to stay with me, not to go with them.
You came home with us two days after, still not knowing if you would leave us at any time. But as the minutes turned into days and days into weeks and then into months, all the while you continued to get stronger and stronger. You had declared you were here to stay.
You have since made such a difference in this world in such a short amount of time. People who haven’t yet had the wonderful opportunity to meet you have fallen in love with you. We had asked that those you’ve touched send you special letters this year and this is my letter to you:
You have taught me a multitude of things in this short year. I planned my life out for as long as I could remember, calculating every step I made along the way, counting each goal as if it made me a superstar. The first thing you taught me is you can’t plan life. Someone once told me “If you want to make God laugh tell him your plans for your life.” That is so true. Life is unpredictable, we have some control over things, but most is God’s plan for us. Houses, cars, fancy diplomas, big careers, and possessions – none of them matter. Life matters, love matters.
You were meant to be here, meant to have the difficult birth you had, meant to face the challenges that you are. One day I pray that it will all be revealed to me, the purpose behind all of our hardships, our tears, that you will rise above every challenge before you to conquer all the dreams you desire.
When I look into your sweet baby blues, I think you understand that best of all. I feel you chose this, you knew that this is how it would be and you still wanted to be here. For that I am so very thankful. I can’t imagine what this world would be like without you in it. And I’m so glad you had the courage to stay knowing that your road would be harder than most.
You’ve shown me patience to give you the time to accomplish all these milestones that are moving slower for you. The sweetest rewards in life are the ones that you have to work the hardest for. You’ve shown me what things in life are truly worth fighting for, what things are trivial, and taught me to focus every part of positive energy I have in all the best directions.
You’ve taught me so much about people. Before you were born, I was hesitant to be that “social butterfly” that you’ll find your grandmother to be. I cautiously went about choosing friends, always wondering what intentions lay behind each person before including them in my life. You have opened doors to show me the beauty that people have, the love that they have for even those they have never met, you’ve restored my faith in my fellow man. God has brought countless people into our lives, none of them I would have had the pleasure to know had it not been you that had connected us. You have gathered people in love, restored faith, and given us hope.
When I see your smile and hear your laughter it reminds me of everything beautiful that God has created, the miracle that he has given to us, and presented to all. You are living proof that all things are possible, Noah. As time goes on, I see such determination and you’re strong will to succeed. Although there are a lot of things that do not come naturally for you, I see you trying so very hard everyday to find a way around it all to accomplish all that you set your mind to.
I couldn’t be more proud of you, more happy to be your mother. You are amazing in every sense of the word. And we are never alone. There are days when the house smells like fresh cut roses, those are the days I know God comes to check in on you. I wish you could tell me about all of your experiences, all that you know, all that you’ve come to do in this lifetime. There are secrets I see in your tender face, that I hope you’ll be able to share with me someday. You offer me comfort beneath my worries, and always find an unspoken way of reminding me of all the sunshine that surrounds us if I only look hard enough for it.
You will always be the most important part of our lives, we are so blessed to have you, to be able to share this journey with you. There isn’t a day that goes by that I don’t thank God for his December Rainbow and his sweet promise to you. Happy First Birthday my little boy. We love you so very much.
Love,
Mommy
Our Beginning:
Tuesday, December 22, 2009
Noah Tries Yogurt
Noah has decided that he does not want to give us a repeat performance for sleeping through the night just yet. But at least we know that it is possible for him. I honestly think he has his daddy's alarm clock, and sleeps best when there's nothing stirring in the house at any hour.
Noah also had another first yesterday. He ate yogurt for the very first time. He loved it, and we watched him carefully since it was really the first time he's had whole milk and we weren't sure if he'd develop any signs of being lactose intolerant. But it went great.
We received something in the mail from Medicaid on Friday. I had assumed it was the approval letter for more physical therapy since we have to renew our request every six months, but it was actually a letter regarding his kidcart that was ordered. It appears they didn't approve the entire kidcart because his diagnosis doesn't support it. I have no idea what this means, but after making some phone calls and speaking to ATG Rehab it sounds like the majority of what we needed approved to get it was approved, and that the denial portions won't influence us not getting his kidcart. I won't know for a few weeks. Insurance of any kind whether you have Medicaid or private insurance is so difficult to deal with. I don't know of a single family that I've spoken to with a special needs child that isn't having the same problem trying to find a way to get things for therapy and not being able to finance them because insurances won't cover any of it. I will never understand that. If it is health related then it should be covered without any red tape. And as parents we feel that our children could benefit from so much if we could just get our hands on it.
I of course have found more therapy goodies that I want for Noah. Maybe I'm quickly becoming a therapy addict. But I'm seeing things blossom in Noah, and I have to keep going, have to keep trying, he will get there with lots of love and lots of help.
Noah was blessed by kindness to receive a WaterWayBabies Tub and special Cushi Tush seat. We got them last week, and the Cushi Tush is helping him so much. The bumbo seat just wasn't designed for someone like Noah, he has no balance, goes backwards, has trouble correcting himself. But the Cushi Tush has a higher back and keeps him centered. He still wants to go "north" sometimes. But he finds a way to bring himself back to the center.
We also took Noah to Costco because we needed milk, and put him the grocery cart again to see if he had gotten any better over the last few months. Strapped in he doesn't want to go side to side anymore, but his head still arches backwards like he is permanently looking at the ceiling. It's hard for him to pull that head forwards, but he is trying to hold onto the cart with both hands in front, something he wouldn't even attempt three months ago. So even though he clearly looks handicap in a grocery cart still, it is less so than before. I'm sure we got lots of looks as we were shopping as we're holding the back of his head in the cart the whole time trying to shop. But our sweet checkers at Costco all know Noah and always have such kind words for us as we are leaving. They'll ll say it's "Noah time" he'll get there. All of them so genuinely happy to see him and are so proud of him.
Noah is so determined to try, he works so hard, and we owe it to him, to give him every opportunity we can to go the distance.
Love,
Stacy, Chris & Noah
Noah also had another first yesterday. He ate yogurt for the very first time. He loved it, and we watched him carefully since it was really the first time he's had whole milk and we weren't sure if he'd develop any signs of being lactose intolerant. But it went great.
We received something in the mail from Medicaid on Friday. I had assumed it was the approval letter for more physical therapy since we have to renew our request every six months, but it was actually a letter regarding his kidcart that was ordered. It appears they didn't approve the entire kidcart because his diagnosis doesn't support it. I have no idea what this means, but after making some phone calls and speaking to ATG Rehab it sounds like the majority of what we needed approved to get it was approved, and that the denial portions won't influence us not getting his kidcart. I won't know for a few weeks. Insurance of any kind whether you have Medicaid or private insurance is so difficult to deal with. I don't know of a single family that I've spoken to with a special needs child that isn't having the same problem trying to find a way to get things for therapy and not being able to finance them because insurances won't cover any of it. I will never understand that. If it is health related then it should be covered without any red tape. And as parents we feel that our children could benefit from so much if we could just get our hands on it.
I of course have found more therapy goodies that I want for Noah. Maybe I'm quickly becoming a therapy addict. But I'm seeing things blossom in Noah, and I have to keep going, have to keep trying, he will get there with lots of love and lots of help.
Noah was blessed by kindness to receive a WaterWayBabies Tub and special Cushi Tush seat. We got them last week, and the Cushi Tush is helping him so much. The bumbo seat just wasn't designed for someone like Noah, he has no balance, goes backwards, has trouble correcting himself. But the Cushi Tush has a higher back and keeps him centered. He still wants to go "north" sometimes. But he finds a way to bring himself back to the center.
We also took Noah to Costco because we needed milk, and put him the grocery cart again to see if he had gotten any better over the last few months. Strapped in he doesn't want to go side to side anymore, but his head still arches backwards like he is permanently looking at the ceiling. It's hard for him to pull that head forwards, but he is trying to hold onto the cart with both hands in front, something he wouldn't even attempt three months ago. So even though he clearly looks handicap in a grocery cart still, it is less so than before. I'm sure we got lots of looks as we were shopping as we're holding the back of his head in the cart the whole time trying to shop. But our sweet checkers at Costco all know Noah and always have such kind words for us as we are leaving. They'll ll say it's "Noah time" he'll get there. All of them so genuinely happy to see him and are so proud of him.
Noah is so determined to try, he works so hard, and we owe it to him, to give him every opportunity we can to go the distance.
Love,
Stacy, Chris & Noah
Saturday, December 19, 2009
Noah and the Wingbo Swing
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Five days before Noah's first birthday and he meets a milestone! Granted it's not sitting, crawling or walking, but just as wonderful to us. Noah slept through the night. He slept from 8:45pm to 6:30am. We are excited. It's been a long time waiting for that first night of sleep.
Noah has also become a little less dependent on me in the last few weeks. Part of me is a little sad that I'm not as needed as before, and a part of me is proud that he's growing into himself. He will now play very happily in his highchair with a variety of toys on the tray for long periods of time. He grasps them with both hands. Granted he cannot get them to his mouth, but he plays just as any other baby would with them, using open hands and fiddling with them.
Chris said that he got Noah to repeat mama twice, but I have yet to catch it. He's also trying very hard to put weight bearing on one arm while sitting to reach for another toy.
His grandma got him the Wingbo swing for an early Christmas present. I babble off a million therapy gadgets in a day and she picked one that I had mentioned. It's helped him tremendously with tummy time. We were worried he might arch out of it, but the way it's designed is great for babies like Noah, he can't arch and and it has a great belly band that wraps around for extra security. He's learned in just a short two weeks how to put pressure on his elbows and lift his head. He's now even willing to do it on the floor. He still doesn't have a desire to try to crawl or move his arms, but it's great just to see him in a natural position. I think it's also building his confidence. I've seen him be more excited to try.
Chris and I have also implemented an award system. It's actually a form of bribery really, but Noah would do just about anything for his organic-dye-free candy canes that we got him online at naturalcandystore.com. We coax him to roll over or scoot closer by flashing those pretty little candy canes his way. Hopefully he'll even want them bad enough to grab a hold and get them to his mouth himself eventually.
We remain very excited for Noah's first birthday and first Christmas at home. I really don't want the season to end. We're having such a happy time in our lives just enjoying each other and the moments we're sharing. It is such a gift to have him, to hold him, to love him.
I've attached some picture of Noah on his Wingbo Swing. Eventually our home will look like a therapy gym, I knew there was a reason I thought I needed all this square footage.
Love,
Stacy, Chris & Noah
Stacy, Chris & Noah
Tuesday, December 15, 2009
Noah & The Bath Seat
Noah's grandma bought him a bath seat from Toys R Us the other day. I was so excited thinking that it was Noah's ticket to sitting up while taking a bath, but no luck. His legs are much too long to get him and his body in it. And he was very traumatized by it. I think I heard the exact scream that he did for Santa. So it will be returned. We'll just have to hope he learns to sit eventually, and I suppose if worse comes to worse and he outgrows the baby tub, we'll be bathing together for a while. Originally I was hoping to get him the V-Tech Sit to Stand Walker that was on sale for $24.99, but they were all sold out. Maybe it was a sign that it's premature for me to think about him walking.
We've seen some small improvements with Noah, they are so small that no one else would probably notice them but us. He is accomplishing tummy time with being able to hold his head in the air, he has leg action, but no arm action. I'm still hopeful that one day he might crawl even if it's an army crawl or something. I just hope he will find a way to be mobile. He's sitting for longer periods with assistance without arching backwards, and has found a way to get both hands to midline to grab, but still lacks the ability to hold onto things for very long or get anything to his mouth.
I asked his occupational therapist if she thought that it was frustrating for Noah that he couldn't rub his eyes or itch his nose, and she said that she thought he could get his hands there if he had to, they do bend that far, but it is an effort for him to do so.
His occupational therapist recommended that Noah might really enjoy a remote control car that could be modified for a special switch for Noah, a way of communicating and making things move. So his grandma and I went to Wal-mart tonight and she got him a red Silverado truck. I think he'll love it.
As we were leaving I didn't have any money to give to the Salvation Army bell ringer, so my mom gave me a dollar for the bucket. As I turned around after leaving the dollar the gentleman said in a very loving voice "God Bless You". Those three words in an instant filled me with overwhelming emotion and I just wanted to cry. I try often to be very stoic especially in public or with people who do not know our journey and I think he possibly caught me off guard, and I wanted to hold onto those three little words, put them in my pocket, ride home, open Noah's hand and place them in it. In a day there is simply just so many things that are only in God's hands. As much as I want the control over how I want things to go, it simply may or may not be in the cards. And waiting to see how things are going to turn out is difficult. I want that crystal ball, I want that fortune cookie, that tells me that in the end it's all going to be okay. If someone could tell me today that without a doubt, Noah will sit, he will crawl, he will walk, and he will talk, my heart could calm down, my tears could permanently dry, because I knew it was going happen someday. It's the uncertainty that fills my days with worry.
Miracles happen everyday, and Noah is a miracle just by having survived what was almost the impossible. I have to keep thinking that God will take him the whole way. That he'll be slower off the starting line, but will have the biggest, most beautiful finish.
Love,
Stacy, Chris & Noah
We've seen some small improvements with Noah, they are so small that no one else would probably notice them but us. He is accomplishing tummy time with being able to hold his head in the air, he has leg action, but no arm action. I'm still hopeful that one day he might crawl even if it's an army crawl or something. I just hope he will find a way to be mobile. He's sitting for longer periods with assistance without arching backwards, and has found a way to get both hands to midline to grab, but still lacks the ability to hold onto things for very long or get anything to his mouth.
I asked his occupational therapist if she thought that it was frustrating for Noah that he couldn't rub his eyes or itch his nose, and she said that she thought he could get his hands there if he had to, they do bend that far, but it is an effort for him to do so.
His occupational therapist recommended that Noah might really enjoy a remote control car that could be modified for a special switch for Noah, a way of communicating and making things move. So his grandma and I went to Wal-mart tonight and she got him a red Silverado truck. I think he'll love it.
As we were leaving I didn't have any money to give to the Salvation Army bell ringer, so my mom gave me a dollar for the bucket. As I turned around after leaving the dollar the gentleman said in a very loving voice "God Bless You". Those three words in an instant filled me with overwhelming emotion and I just wanted to cry. I try often to be very stoic especially in public or with people who do not know our journey and I think he possibly caught me off guard, and I wanted to hold onto those three little words, put them in my pocket, ride home, open Noah's hand and place them in it. In a day there is simply just so many things that are only in God's hands. As much as I want the control over how I want things to go, it simply may or may not be in the cards. And waiting to see how things are going to turn out is difficult. I want that crystal ball, I want that fortune cookie, that tells me that in the end it's all going to be okay. If someone could tell me today that without a doubt, Noah will sit, he will crawl, he will walk, and he will talk, my heart could calm down, my tears could permanently dry, because I knew it was going happen someday. It's the uncertainty that fills my days with worry.
Miracles happen everyday, and Noah is a miracle just by having survived what was almost the impossible. I have to keep thinking that God will take him the whole way. That he'll be slower off the starting line, but will have the biggest, most beautiful finish.
Love,
Stacy, Chris & Noah
Wednesday, December 9, 2009
Noah's Back to Therapy
We finally got back into therapy after a mini break for Noah to recover from his cold. He is feeling much better which is a relief. He still sounds weird at times, but that is pretty normal for Noah. I think by the nature of just who he is, he often swallows differently and sounds a little cloggy sometimes - even when he isn't sick.
I had another "mini moment" as I refer to them as today. Those moments when I just can't help but be overcome with a moment of sadness. I think today it stemmed out of frustration that I don't have the means, the money, the ability to get things that may make a difference in Noah's recovery. I know there is absolutely no guarantee that any object on this earth would make a difference in helping him, my mind tells me that, but my heart - my heart well, it tells me try everything... I worry so much about the fact that Noah will be a year old in about two weeks, and still isn't sitting, not even close to being able to sit, cannot roll, cannot crawl, cannot walk, and talks and communicates in his own language, but not as other babies babble. I try to fill my days with inspirational stories, latest technology articles, and researching therapy equipment and gadgets, all the while balancing caring for Noah and working with him each day. I eat, breathe, and sleep nothing but Noah.
I found yet another neat thing today to add to my collection of therapy things I'd love to get for him, a home therapy infant swing at south paw enterprises to companion the platform swing for vestibular stimulation. Nothing is under a hundred and fifty dollars, I tally it in my head like a broken calculator that doesn't have a shut off button. I wish more than anything these items were like going to Babies R Us or Target and paying $30 or so for the item. Then I feel guilty about trying to buy a birthday cake and hat and putting off buying him a new belly band. But I want so badly to make this birthday and this Christmas the ultimate event for him, to make up for our crummy beginning and our holidays last year. But more than anything the one thing I want for him, I cannot buy, and that is just to have him be a regular baby. And it's not a want that I want for me, I love Noah no matter what, no matter if he can or cannot do these things, my heart breaks for him, because he is so very important that I want to make it all right for him. It is often a very powerless feeling as a mother to know you cannot fix something for your child. That's what mothers are supposed to do, put band-aids and kiss all the boo-boos, fix all that is wrong throughout your entire life.
I know Noah knows nothing else, he doesn't know he should be sitting, and I find comfort in that. He doesn't know what he's missing, doesn't know that he's different. I know he is frustrated that he isn't mobile, he squeals when he wants to go somewhere and begs for me to tote him around room to room. Chris and I are his only form of transportation and he knows it.
Noah has taken to talking to the big angel on his train tree. I think he thinks she is a mini version of the real deal. He would know best. I enjoy listening to him talk to her. I have moments where I fanaticize about her flying down off the tree, wrapping both of us up in her ivory little wings and fixing everything. We're hoping that Noah gets more cards for his stocking so far he has only gotten two. I tell him that we're going to stuff his little Elmo stocking full of great things.
Love,
Stacy, Chris & Noah
I had another "mini moment" as I refer to them as today. Those moments when I just can't help but be overcome with a moment of sadness. I think today it stemmed out of frustration that I don't have the means, the money, the ability to get things that may make a difference in Noah's recovery. I know there is absolutely no guarantee that any object on this earth would make a difference in helping him, my mind tells me that, but my heart - my heart well, it tells me try everything... I worry so much about the fact that Noah will be a year old in about two weeks, and still isn't sitting, not even close to being able to sit, cannot roll, cannot crawl, cannot walk, and talks and communicates in his own language, but not as other babies babble. I try to fill my days with inspirational stories, latest technology articles, and researching therapy equipment and gadgets, all the while balancing caring for Noah and working with him each day. I eat, breathe, and sleep nothing but Noah.
I found yet another neat thing today to add to my collection of therapy things I'd love to get for him, a home therapy infant swing at south paw enterprises to companion the platform swing for vestibular stimulation. Nothing is under a hundred and fifty dollars, I tally it in my head like a broken calculator that doesn't have a shut off button. I wish more than anything these items were like going to Babies R Us or Target and paying $30 or so for the item. Then I feel guilty about trying to buy a birthday cake and hat and putting off buying him a new belly band. But I want so badly to make this birthday and this Christmas the ultimate event for him, to make up for our crummy beginning and our holidays last year. But more than anything the one thing I want for him, I cannot buy, and that is just to have him be a regular baby. And it's not a want that I want for me, I love Noah no matter what, no matter if he can or cannot do these things, my heart breaks for him, because he is so very important that I want to make it all right for him. It is often a very powerless feeling as a mother to know you cannot fix something for your child. That's what mothers are supposed to do, put band-aids and kiss all the boo-boos, fix all that is wrong throughout your entire life.
I know Noah knows nothing else, he doesn't know he should be sitting, and I find comfort in that. He doesn't know what he's missing, doesn't know that he's different. I know he is frustrated that he isn't mobile, he squeals when he wants to go somewhere and begs for me to tote him around room to room. Chris and I are his only form of transportation and he knows it.
Noah has taken to talking to the big angel on his train tree. I think he thinks she is a mini version of the real deal. He would know best. I enjoy listening to him talk to her. I have moments where I fanaticize about her flying down off the tree, wrapping both of us up in her ivory little wings and fixing everything. We're hoping that Noah gets more cards for his stocking so far he has only gotten two. I tell him that we're going to stuff his little Elmo stocking full of great things.
Love,
Stacy, Chris & Noah
Tuesday, December 8, 2009
Warden Family Christmas Cards 2009
Wishing you the gift of faith, the blessing of hope and the peace of His love at Christmas and always.
Love,
The Warden Family
Stacy, Chris & Noah
card designed by:
Monday, December 7, 2009
Noah's Birthday Cake
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Noah's New Ride - A little box...
Noah's Train Tree.JPG)
Noah's Tree #2.JPG)
Noah's Puppies Brystal Sonoma & Hollie Edelbrock(aka super sneaky and loud mouth)
Noah LOVES them!
Poor little Noah is still has his sniffles, after a battle with his doctor's office I finally got him an appointment. They thought it may be just a virus but they did have a hard time telling if it had gone to his lungs, but didn't think it warranted a x-ray yet. Ears and throat are great, no cough and still no signs of any fever. And his saturation levels were excellent. I remember the days when we would panic over Noah in the NICU as we sat and watched his levels go up and down and listened to the alarms ringing constantly. Sometimes when I go to sleep I startle to that alarm sound in my mind still to this day.
And as I had suspected the doctor did confirm that the discoloration in Noah's only two teeth are a result of the medications he was given in the NICU. But she told me I shouldn't worry as it won't have any influence on his permanent teeth. No one explained to us that these drugs could have other effects down the road, but if he had to have them to keep him alive then I guess his teeth are a small consequence.
I've been trying to find great gifts for Noah for Christmas. While other mommies are finding the toys of the year, this mommy is trying to find the therapy equipment of the year. There are so many things I'd like to get for Noah, a Playnest, a Summer Infant Stage 3 Super Seat, a Babystation, A LeapFrog Grove and Activity Station, A Cushi Tush Baby Seat, A Vtech Sit to Stand Learning Walker, WaterWayBabies in-home pool therapy, a bath seat. All of the really great items that might help Noah learn to sit or become mobile of course are big ticket items. And a lot of the really neat items come from the UK and Germany. Some are obtainable while it seems some are harder to get. And there's no guarantee that any of it would make a difference or not in his progress. Then there is still of course the wishlist of all the other things I'd love to get for Noah, I dream big and want to give him the world.
We heard today that Two Angels is going to be able to help us get the platform swing for Noah. It is very exciting news since it is Noah's most favorite thing to do. We remain so very humbled by the help that we've received and continue to receive. There are so many things in our lives that simply would not be possible otherwise. I ordered Noah's first birthday cake Saturday. We are so very excited about it. His little individual cake is going to be so cute. It will have a sprayed on teddy bear on it with some frosting balloons and curled ribbon, and then will have a companion big cake that will be the bigger version of his. It took me forever to try to pick it out for him, there were simply so many choices. His cake will have vanilla custard in the middle, in case he is unable to eat the cake itself (which I suspect will be the case), or have me help him dip his fingers in the custard and guide it to his mouth. They are doing the cake special to make sure the dyes are natural and non-artificial for him. It's such a dream to be able to celebrate his first birthday. In the beginning we never thought we'd be blessed to see his first birthday. He is a gift to us each and every second of the day.
Love,
Stacy, Chris & Noah
Wednesday, December 2, 2009
Noah Meets Santa
Home for the Holidays
Noah's Christmas Ark
Noah's First Year with Santa 
Doesn't know what to do with Santa...
Mom I know he's still sitting right next to us...
Santa and Mrs. Claus
Santa's Fire TruckSanta came for Noah, on the fire truck, with lights lighting up the evening. I felt a rush of memories flood as I remembered all the times Santa had come for me on the fire truck, waiting with anticipation at the front door drawing my name on the frosted glass, just as I did for Noah tonight.
Mrs. Claus came this time with Santa. Mrs. Claus must have stayed home baking cookies when I was little as Santa always came by himself, but after all these years it was wonderful to meet her. Noah laughed as he seen the fire truck drive up, curious about the lights and all the action. As Santa approached the front door, Noah looked at his daddy to indicate are you seriously going to let him in? I tried to give Noah the it's okay vibe and gentle voice reassurance, but once Santa stepped foot into the entry way, Noah immediately freaked out, pouted his lips and started to cry with fear.
I had hoped he was going to love Santa, but in all reality I was quite comforted that Noah had a "normal" reaction to Santa. He looked to each of us for safety as he knew he was a stranger in a red suit. Santa and Mrs. Claus were so very patient and sweet with an unsure Noah. I can't say it really got any better, he remained pretty on guard and every time he looked at them, broke out hysterically. I told Santa how special it was that we were blessed he could be with Noah, that we didn't think we'd have the chance to experience this and we did.
To me Santa was the equivalent of me buying Noah those baby gloves two days prior to his birth. I dreamed of such things for my son even before he was born. To have these dreams come to life is the most incredible feeling. There is nothing better and I cherish every moment even more knowing how close we came to not having him or the possibility of any of these dreams coming true.
It was wonderful for Noah's daddy to see Santa and his fire truck. I probably told him a million times at Christmas throughout the years about my sweet childhood and good memories of the holidays and it was so wonderful to be able to see him share this with his son. Santa was always very very good to us, and I know he'll be just as wonderful to Noah too, for he is the best they come.
Santa said they'd make sure Noah was on the list every year, so we didn't have to do the lottery. That meant so much to know that Noah will have Santa again next year. Hopefully he'll be much happier to see him next year, we'll have to watch a lot more Santa DVD's so he understands that Santa is the ultimate friend.
I've attached pictures of Noah's first Santa meeting, they're not the best since he wasn't having much of it, but it will give him something to look back on years from now. There are also pictures of Noah's Christmas Ark.
"What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace."
Mrs. Claus came this time with Santa. Mrs. Claus must have stayed home baking cookies when I was little as Santa always came by himself, but after all these years it was wonderful to meet her. Noah laughed as he seen the fire truck drive up, curious about the lights and all the action. As Santa approached the front door, Noah looked at his daddy to indicate are you seriously going to let him in? I tried to give Noah the it's okay vibe and gentle voice reassurance, but once Santa stepped foot into the entry way, Noah immediately freaked out, pouted his lips and started to cry with fear.
I had hoped he was going to love Santa, but in all reality I was quite comforted that Noah had a "normal" reaction to Santa. He looked to each of us for safety as he knew he was a stranger in a red suit. Santa and Mrs. Claus were so very patient and sweet with an unsure Noah. I can't say it really got any better, he remained pretty on guard and every time he looked at them, broke out hysterically. I told Santa how special it was that we were blessed he could be with Noah, that we didn't think we'd have the chance to experience this and we did.
To me Santa was the equivalent of me buying Noah those baby gloves two days prior to his birth. I dreamed of such things for my son even before he was born. To have these dreams come to life is the most incredible feeling. There is nothing better and I cherish every moment even more knowing how close we came to not having him or the possibility of any of these dreams coming true.
It was wonderful for Noah's daddy to see Santa and his fire truck. I probably told him a million times at Christmas throughout the years about my sweet childhood and good memories of the holidays and it was so wonderful to be able to see him share this with his son. Santa was always very very good to us, and I know he'll be just as wonderful to Noah too, for he is the best they come.
Santa said they'd make sure Noah was on the list every year, so we didn't have to do the lottery. That meant so much to know that Noah will have Santa again next year. Hopefully he'll be much happier to see him next year, we'll have to watch a lot more Santa DVD's so he understands that Santa is the ultimate friend.
I've attached pictures of Noah's first Santa meeting, they're not the best since he wasn't having much of it, but it will give him something to look back on years from now. There are also pictures of Noah's Christmas Ark.
"What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace."
Agnes M. Pharo
Love,
Stacy, Chris & Noah
Stacy, Chris & Noah
Tuesday, December 1, 2009
Noah's First Thanksgiving
Noah had a great first Thanksgiving. He slept in until 8am, of course still waking up every two hours, but usually he calls it quits around 6:30, and was tremendously happy all day long. He loved hanging out with his daddy while I cooked us dinner for the three of us.
Noah ate a jar and a half of organic apples,turkey and cranberries, then had squished jelled cranberries, and candied yams on top of that. He was still eating when we had finished. I don't know where he puts all this food in his little body. He loves to eat. For desert I put peach pie in a munchkin net holder and let him go at that. I of course had to hold it for him, but he loved it. I'm so thankful that he can eat, even if he's not feeding himself it's just wonderful to watch him try to learn to chew. I'm sure it would help if some more teeth sprouted for him. He only has the bottom two and they're not even half way up yet.
Friday evening Noah sprouted his first sniffle and drippy nose. I had hoped that it was just temporary from maybe being out for a brief moment to look at his Noah's Ark Inflatable Christmas gadget in the front yard, but it indeed has turned into a minor cold. Thankfully though it's not the type of cold that would cause a fever or cause Noah a large amount of stress that could result in a seizure. So even though he's a little stuffy, we've still dodged a very severe cold and potential scary event. And at least we realized that we have a ear thermometer that is worthless out of it. I'd love to get a fancy accurate thermometer that goes across the forehead - a luxury item. So we've been sticking out a traditional digital thermometer under his arm. His doctors told me today we can only safely get by with that until he's about a year of age, then we'll need something more reliable since every degree of heat for him is crucial in preventing the onset of a seizure.
His sniffles hasn't affected his level of happiness, he's just as happy as ever. I love days when he's all giggles and smiles, it makes me feel like he's happy to be here no matter what limitations he has. Tomorrow is Noah's Santa visit and we're very excited for him. It will be a very special moment. I can only imagine what Noah will babble in Santa's ear.
Love,
Stacy, Chris & Noah
His sniffles hasn't affected his level of happiness, he's just as happy as ever. I love days when he's all giggles and smiles, it makes me feel like he's happy to be here no matter what limitations he has. Tomorrow is Noah's Santa visit and we're very excited for him. It will be a very special moment. I can only imagine what Noah will babble in Santa's ear.
Love,
Stacy, Chris & Noah