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
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