Our Journey

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.

Friday, December 26, 2008

We Are In New York

Merry Christmas to everyone and a happy New Year.I have come to the conclusion that I am no good at this blogging stuff .. Ha ha... I find it so hard to keep up with it. I will keep trying to get better though.. Noah, Tom and I are in New York for the holidays visiting my parents. We flew in on Christmas Eve after some delays and yucky traffic. It is freezing here to us Florida people. There is actually some snow on the ground so Tom and I were excited to expose Noah to it. Well, the excitement was all ours because Noah wanted nothing to do with the snow or the cold. We bundled him up and took him out sledding on Christmas Day. He didn't even crack a smile the whole time. When I get some pictures ready I will post them so everyone can see how much Noah hates to be cold. He is a Florida boy who enjoys the warm weather and swimming for sure. Today we took him to a place called Bear Mountain to ride a carousel and go on a walk. Of course he enjoyed the carousel because he was spinning. Anything that spins amuses Noah a lot. Tom will go skiing tomorrow with my Dad. Unfortunately I will have to sit this one out being pregnant and all. I absolutely love to ski so I'm a little jealous. Sunday Tom and I may go into New York City if is warm enough. I can't deal with the city in the freezing cold. That is about all that is happening here. Best wishes to everyone during this holiday season..

Tuesday, December 16, 2008


Thank God for my blog today because I really need to write out my feelings. I am having a hard day today. I am having the "Am I doing enough feelings of guilt". I know most of you know what I am talking about. That nagging feeling that just won't quit as much as you would like it to. I wonder if I am being a good enough mom to Noah? Am I doing enough to help him developmentally? Am I working hard enough with him on his walking? Do we need more therapy? Is there a therapy I am missing? What about his speech? Am I doing enough to motivate him? These feelings really get to me because I feel like Noah's development is resting on my shoulders. I know logically that this is not true. Most of it is up to Noah. When he is ready to do things. I like to call it "On Noah's time". But is that just masking my true feelings? Sometimes I really do feel that it is all up to me. I wonder how I am going to spread my time with a new baby? Will I be able to give him the attention he so desperately needs? As you can tell my head is spinning today. Once in a while the guilt really eats me alive. I know tomorrow will be a new day with new feelings but right now this sucks. Thanks for reading.. I try to keep my posts pretty positive but once in a while this happens..

Friday, December 5, 2008

I am so Proud ...

I just had to post an update on my angel. This weekend we are going to start the PECS system with Noah to help him communicate. (Thanks for all the information Jacqui.) I am really excited about this because Noah and I are very frustrated trying to figure out his needs. I feel so bad when he is trying to tell me something and I have no clue what it is. With the new baby coming, Noah really needs to be able to communicate. Wednesday during speech therapy Noah did great with all the picture cards. I was soooo proud of him. His ST would hold up two or three cards and ask Noah for a specific one, low and behold he got every single one right. He was so polite that day too. Everything she asked him for he would hand over. Then his ST mentioned that cognitively Noah is really maturing. It was kind of funny to think of Noah and the word "mature" in the same sentence. He is still my little baby.. Anyway, I was just so proud of him that day. I am also proud to announce that Noah took two steps without holding onto anything that same day. He is really coming along. We are working extremely hard on his balance lately. Just a little more Noah and you will be walking. I am so proud once again of my little man.. I am proud of all your little angels too.

Tuesday, December 2, 2008

Random Thoughts..

I have been horrible about keeping up with this blog. Our digital camera actually broke so I am unable to take pictures and that keeps me from blogging. I like to post pictures of how cute my little man is becoming. Tom and I are getting a camera this weekend so I will be able to post more often. I am beginning to feel better as far as the morning sickness goes. Now I am just extremely fatigue all the time. I am so tempted to drink a gallon of Starbucks coffee but instead I get boring smoothee's (thanks to my mom). Yes my mom has been visiting for the past couple of weeks and keeping me on track. Thanks mom... But I am still tempted for that Starbucks. I had some testing done last Wednesday (nuchal transluncey) SP?? It is a blood test and sonogram that tests for a increased risk of Down Syndrome or Trisomy 18. I have to admit it was a hard decision whether or not to have the test done. Since I turned 35 in November, there is all kinds of extra testing they want to do. I explained to the DR that it wouldn't change anything for me with this pregnancy. I thought of Noah the whole time, to help ease my anxiety. Noah is such a blessing and I know this child will be too. I have decided that faith is the only thing that will get me through this pregnancy. Faith will also be the babies name if it is a girl.. It just seems like the perfect name for this baby. It is very hard to have a child with special needs as your first born because now I can't imagine having a "typical" child. Kind of like when I was pregnant with Noah, I couldn't imagine having a child with special needs. I just know that God is in control and he knows what I need. Well these are my random thoughts for the day. Thanks for reading them.