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.

Wednesday, September 3, 2008

My First Entry

So I have decided to blog since I have been following my fellow RTS friends blogs for a while. I promise I will try to keep up with it ...Today Noah and I went to PT and ST (what we do every Wednesday.). I found myself with tears in my eyes watching Noah struggle with his anxiety during therapy.. I felt so guilty for just sitting there and not picking up my baby and running out.. For the last few months he has cried, shacked, screamed when the therapists try to get him to do something. I have come to dread PT lately because of this. I think me and Noah are just sick of therapy all together. I wonder what it must feel like to be so little and have to go to therapy every day?? Yuck.. So for the rest of the day Noah and I will just relax... Hope everyone will enjoy reading about my little one...

10 comments:

Jacqui said...

Let me have the honour of being the first to comment on your blog. I just LOVE the photo at the bottom of the blog with you guys kissing Noah. Precious. Looking forward to getting to know Noah more through your blog.

Myssie said...

Yea!!! Welcome to the blogosphere!!! I can't wait to read more!

Our Journey said...

Looks good!! Noah is such a handsome boy!

Regarding therapy. Frankie has just started doing this. It's with one specific PT. He has never cried before when someone else holds him, he does for her! It's horrible! :(

Jessica mommy to Alex/ RTS said...

Yea, now I can check in on you daily!

Pam Harris said...

In a study to be published this month in Neuron, Dr. Eric Kandel, a Nobel laureate and neuroscience professor at Columbia University, found that positive emotions -- safety and security -- affect learning capabilities of mice.

"Behaviors and thoughts that relate to hope, love and happiness can change the brain -- just as fear, stress and anxiety can change it," Kandel says. "It's completely symmetrical."

If I could go back and change something, I would make sure that Josh's experiences were overall, as loving, secure and positive as possible.

I am SO glad you are blogging!
Love,
pam (& Josh)

Cindy said...

Can I say "it's about time?" :) I'm so glad you started a blog, Kristi. I know you will enjoy it, because you have so much to share, and I know we will love reading it...because you have so much to share.

Welcome!

Michelle said...

Welcome to the blogging world! Can't wait to hear more about what Noah is up to!

Michelle said...

Austin had a PT that made me cringe every time she came over. She'd make Austin do things that terrified him and no matter how hard he cried and screamed-she'd push and push. I hated it. Austin hated it. Without the PT knowing it, I asked for someone new and what a world of difference. If he got scared, his new PT would wrap her arms around him, hold him, and love on him till he calmed down.

Terri H-E said...

Kristi - so happy to be able to follow your family here! Noah is such a beautiful boy.

Regarding therapy, in my own mind, if the therapist does not treat my girl as the person they are escorting to realization of her potential (as opposed to DRAGGING to THEIR agenda), they simply cannot be successful with Addie. Maybe the PT needs to hear your priorities for your prince once again?

Cheers to you and your baby blog!

Auntie Theresa said...

He just needs to come spend some time with his Auntie Theresa and family so we can ride horses!!!! I can play "legs" (now that I can actually do it) and bang on the loud drum in spanish till we drop :) Love the blog.. Its a good wayy to feel close to my family while being so far away.

His cousins said he looks sooooo big now to. Love ya'll