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.

Tuesday, September 1, 2009

Evaluations and Walking Update.

Thought I would let everyone know how the evaluations for Noah went. Friday we had his PT and OT evaluation. Noah was in a mood because he had to get up really early that morning and he wasn't too thrilled. He would not do anything the evaluators asked him to do. I was kind of panicking at first when I saw him throw the basic shape puzzle instead of completing it. He just refused to really do much of anything. The therapists were really nice though and let me answer what he could and couldn't do at this point. They were understanding and said that most of the kids don't perform stuff like they do at home. So we left and that was that. Today we had the Speech Evaluation and it was the same scenario as the PT and OT evaluation. Noah was in the same mood and didn't want to do anything again. The ST was very informative and made me feel less anxious about the whole process. I did tell her my goals for Noah as far as Speech is concerned. In a couple of weeks we will have the IEP meeting. Before I sign anything I will go and observe the classroom and make sure it is what I want for Noah. I am thinking he will be going 3 days a week from 8-11 to start out. On another note I have tried a new technique with Noah and his walking. I have been using a bathrobe tie and slowly making it more slack. The fact that he is not walking independently is because of his extreme anxiety. I am full of new hope because every day the bathrobe gets longer and longer. Hopefully soon he will be walking with the bathrobe tie by himself. I can't wait for that day. But until it comes I will keep on trying and keep on going.. That is all I can really do..


angie said...

You are doing fantastic Kristi!! Noah will be walking any day now:).

Emma is always the same during evaluations....never will "perform". I'm glad that the therapists were understanding and helped you feel comfortable.

Can't wait for the walking post:).

Brandi said...

Yes, Noah you are such a smart young man! You have so much to teach to your new teachers. You will show them all that you can do in your own timing, I just know it. Keep up the good work with walking. You sure have a creative mama!

marilynd65 said...

I have to agree, Kristi, your idea of using the bathrobe tie is very clever!!! Mr. Noah is on his way to one day of just letting go and walking on his own. I can't tell you enough of how very proud I am of You, Kristi. Noah is very fortunate to have you as a mom, teacher, and advocate!!!

Love you, Mom

Cindy said...

I'm so glad you're less anxious, Kristi, about the evaluation. It is so hard to see our kids not perform to their age level, and then not even perform to what they're actually capable of, when given the chance. But one adviser for special needs parents advised me to plan evals when the child will perform the WORST so she gets more services. It's one way of looking at things...