We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.
Wednesday, April 28, 2010
Check out the proud look on this face. Noah wanted me to tell everyone he signed three word sentences on his horse. He said "want "horse" "go". Then he told the therapist that he wanted to "stay on the horse." That time he just signed "on". We are just so proud of Noah for communicating more and more. He is also proud of himself as you can see by his expression. Great job big boy. You are working so hard and it's paying off.. We love you.
Tuesday, April 20, 2010
My blog is my therapy so today I am going to use it as such. I am so tired of listening to mom's of "typically" developing children complaining about this and that. Its' the "I wish my son/daughter would stop talking my ear off." Or "It's been such a hard day, so and so would not sit down" "He just keeps running around all day long." I'm not being insensitive to the complaints of these mom's but take a moment to be thankful for what you have. Yes, you have to listen to your child talk endlessly and maybe about nothing, but be thankful. Be thankful you don't have to spend countless hours and days trying to figure out what it is your child want's. Yes, your child may never stop running around and you are tired, but be grateful he can run. I know these particular mom's may never understand and that is not their fault. But it is so downright annoying to me. Stop complaining and embrace what you do have.
Sunday, April 18, 2010
I am curious who we will get to meet at the RTS conference?? Some of my fellow bloggers I have met a couple of times but would love to see you again. Are you going to the conference? If you are we can't wait to meet more of Noah's sisters and brothers.
Thursday, April 15, 2010
Have I mentioned lately that Tom is the best Dad ever? The love he shows his boys is undeniable. Last weekend we went out of town to see Tom's Mom and Dad (Grandma and Grandpa.) The weather was beautiful and we spent a lot of time enjoying the breeze. I captured these pictures of Tom and Noah rolling down a hill together. Did I mention Noah loved it? They did it several times with Noah laughing the whole way down. Little Nick was sitting on the top of the hill with me watching. I got some cute pictures of him playing also. Don't worry Nick,you can roll down the hill with Daddy when you get bigger. Thank you Tom for being a great Daddy to our two little blessings.
Tuesday, April 13, 2010
Some people, and in Noah's case, animals, really know how to bring out the best in us. On Monday during Noah's horse therapy, I was amazed at the growth I saw in my son. The therapists and assistant's were cheering and clapping for him the whole time. Noah is a different little boy when he is on "Cocoa" his horse. Every time he rode by me standing on the sidelines, the joy on his face was unmistakable. He communicates better with Cocoa than with anyone else in his life. Noah was using two word signs to tell Cocoa what he wanted from him. This is huge in our world. His level of communication is broadening and he is confident in his surroundings. Another amazing stride forward is his ability to follow directions. His therapist would ask him "Noah please turn around on your horse and face backwards." Without hesitating Noah followed her request. And this was with everything she asked of him. Another time she said "Noah please tell your horse what you want him to do." Noah signed "go" "more." I had tears in my eyes watching Noah that day. Cocoa has helped him in so many ways. He is climbing with no anxiety and his anxiety about falling is improving as well. As we were leaving one of the assistants followed me to my truck. I turned around to look at her and her eyes were full of tears. She said to me "I feel like I'm witnessing a miracle with your son". This was one of the most heart warming things any therapist or other person helping Noah has said to me. A miracle that is what Cocoa is. We all need miracles in any kind of form. Thank you Cocoa. And thank you to the assistant who recognized all of Noah's accomplishments instead of pointing out what he wasn't doing. I needed to hear this.
Thursday, April 8, 2010
Tuesday, April 6, 2010
I have been told by Noah's therapist that he has gravitational insecurities. A child with gravitational insecurities prefers to stay low to the ground either lying down or seated. Rigidly fixing his body to avoid any movement, and avoiding most physical tasks. This is what they tell me but this is what I saw. Somehow I don't think their diagnosis is accurate. For some strange reason I think Noah is fooling us all. He had to climb up a swivel chair to get up on our computer desk. hmmmm.
Monday, April 5, 2010
That is the perfect description of Nicholas. Our sweet little boy is turning 10 months old in a couple of days. It seems like yesterday I was bringing him home from the hospital and getting adjusted to life with two kids. At 10 months old his personality is fiery and he's filled with spunk. All I have to do is look at Nicholas and he bursts out laughing. He loves to hang out in Noah's room and watch him play the computer. If you ask him to dance and shake his body, he will dance like crazy. Nicholas has no fear. Noah is like the cautious, sly cat and Nicholas is the crazy puppy running with his tongue hanging out. The best of both worlds. Happy 10 months Nicholas. You brighten my world. Keep on dancing and loving life.