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.
Tuesday, February 24, 2009
I haven't updated on my little man lately so I thought I would share some things.. Noah is now 28 months old. I can't believe how grown up he is becoming. (kind of bittersweet for me). I don't want to even imagine him turning 3 and having to decide on preschool. Anyway, Noah has been doing lots of new things lately. He is still not walking independently but he can take a few steps in between Tom and I when we are sitting on the floor. He walks like a champ with one hand wherever we go and if I am not in a hurry. We have been working on choices and picture communication the past week or so. We have not started to teach formal PECS but we wanted to get his feet wet with just making choices. I started out with the baby einstein cards (which he picks the correct one almost every time now) and then I moved onto his laminated pictures. He has a big picture board with all of his favorite things on it. Noah also babbles quite a bit.. He says ma ma all the time and uses a few other vowels and constanants together. He gets a hour and a half of speech a week along with OT, PT, Aqua therapy and Early Intervention. He loves puzzles and he is actually pretty good at them. He still loves his musical light up toys the best though. Noah has so much musical talent its amazing. He plays his toy guitar all of the time. Sometimes he even plays it with his teeth. ha ha.. I am serious about that one. He also loves to listen to music and spin on our office chair along with the tile floor. Well thats about it for now. Pictures of our day at the beach coming soon.. Bye
Friday, February 20, 2009
This is what Noah does when he is bored at home. He found my sweatshirt and decided he was going to crawl around with it on his head. When he was done crawling, he did his butt spinning on the tile floor. This consists of Noah going in really fast circles on his butt while spinning himself with his legs. He's really pretty good at it.
Tuesday, February 17, 2009
Thank you God. Everything turned out to be great as far as the sonogram and echo goes. Noah and Tom were both with me during the whole thing. The echo took about 30 minutes and they said everything appeared to be normal (no further testing was recommended). Then they did the ultrasound and the tech actually said the baby measured perfectly. The baby is of average size and not too small. This all sounded so unreal as I was laying there. I started bawling after it was all said and done. Partly because of relief but another part of me is still mourning what we went through during our pregnancy with Noah. Sometimes I think I am totally over all grieving feelings and then I realize I still have a ways to go. Being pregnant again has brought back a lot of feelings that I have buried in a far away place. The weird part is that I feel guilt for being so relieved. Does that sound strange? Basically because I don't want to ever compare the two pregnancies . I don't want my birth or pregnancy with Noah to be any less special to anyone. Even though I went through hell I wouldn't change my sweet boy for the world. This pregnancy is not better just different. I love you all for praying for me. Thank you.
Monday, February 16, 2009
Well its week 24 in my pregnancy and tomorrow I go for a recheck sonogram and echo of the babies heart. This is all standard procedure due to me being 35 and all (little jab at myself. ha ha) I am asking for some prayer and positive thoughts at 11 am tomorrow. I am really nervous because week 24 is when all the problems starting rising during my pregnancy with Noah. Week 24 is when they told me Noah's femur and humorous were measuring short. Week 24 is when they told me they thought they saw a hole in Noah's heart . Week 24 is when they told me my son may have down syndrome. Soon after they told me my son may have spina bifida.. (He didn't thank God.) So I guess it is pretty obvious why week 24 is so significant to me. My insides are shaking as I imagine laying on the sonogram table once again. But at the same time I know God is in control and that is where faith becomes so important. Thanks for thinking of me and the baby tomorrow. I will post and let everyone know what happens.
Sunday, February 15, 2009
Dear Aunt Angie, (otherwise known as A bomb
What's up? It's me Noah your favorite nephew. Don't worry I won't tell anyone that. I just wanted to wish you the best birthday ever. Mommy told me it was tomorrow and I got really excited. I wish I was there to eat some cake and play with some balloons. But I guess Florida is too far away. I could try and crawl there because I am really fast. But mommy and daddy are making me walk everywhere now and it stinks.. I wanted to tell you how much I have always loved you. When you came to see me in the nicu when I was born, I knew you would be my favorite Aunt. Mommy loves how much you love me too. It makes her so happy that you show a lot of interest in my life. But how could you not? I am really cool. Oh yeah, I wanted to tell you that you will be a great mom someday soon. I know this because of how nice you are too me. And how much you love. And all the cool presents you get me. I hope you have a fun and happy Birthday. You are the best. I love you so much. I hope you like the pictures of us. I think we look awesome.