Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.

We love hearing from everyone!!!!

Saturday, September 27, 2008

Nathan's first sippy cup!!

Nathan took to his sippy cup as soon as I gave it to him but he got very little water out of it - he thinks it's just something to chew on! So, we'll keep giving it to him until he figures it out.

Now, let me explain why it was important for Nathan to have this exact sippy cup.

This Avent sippy cup was recommended by his speech therapist for two reasons. First, the liquid dispenser (part of the cup that goes into his mouth) is very similar in texture to his bottle nipples - this can make the transition from bottle to cup easier. Secondly, see those handles? They're removable - so, the cups can grow with Nathan.

Would I have known this without his therapist's expert advice? Ya know, just as a common newbie mommy? Nope!

Thursday, September 25, 2008

Letter to the Editor

This letter appeared today in the on-line version of the Schenectady Gazette. We're getting close!!

Online Letters to the Editor for Sept. 25
Thursday, September 25, 2008

Capital Region to participate in awareness for Down syndrome

While much attention has been given to Down syndrome over the past several weeks as a result of vice presidential candidate Sarah Palin speaking on the topic, Capital Region families have long been advocating on behalf of children with Down syndrome.

On Sunday, Oct. 5, area families have a chance to take small steps for this very big cause. As National Down Syndrome Awareness Month kicks off, more than 500 residents, friends, family and community leaders are expected to gather at Schenectady Central Park Pavilion to promote awareness, celebrate progress and to inspire those affected by Down syndrome.

The Capital Region is one of 200 locations across the nation hosting the Buddy Walk, a one-mile inspirational walk and day of fun, education and inspiration to promote inclusion and acceptance of people with Down syndrome.

I encourage all families — those with and without children with special needs — to attend the free event and to take the opportunity to learn more about Down syndrome, the opportunities for those living with the condition and the importance of recognizing all children for the individual joys they bring to us.

If we can inspire all kids to reach their fullest potential no matter what challenges life brings them, we are taking steps that will truly impact the future of our community. For more information, visit http://www.dsahrc.org/.

Kandi Terry

The writer is the event coordinator for the Down Syndrome Aim High Resource Center Capital Region Buddy Walk.

Tuesday, September 23, 2008

Wrestling an alligator!!!!!!!!!

Have you ever wrestled an alligator?

If you're blessed with a child - than I have news for you - you have wrestled an alligator!!

I was warned about this long ago but never really experienced it until now!!

The warning was - wait until he can roll over and then when you try to change him you'll be fighting him to get that diaper on!!! hahaha

Nathan is officially uncooperative when changing his diaper and he just rolls around. I've had to become skilled at putting his diapers and clothes on upside down!

Global Research Institute for Down syndrome!!!

posted by: Kim Christiansen of 9News in Colorado.

"DENVER - When Sophia entered their lives, their mission became clear. They would devote their time and energy to creating the world's leading research and care center for people with Down Syndrome.

One family's mission is coming to fruition in Colorado.

The Anna and John J. Sie foundation is committing $34 million to establish the new Linda Crnic Institute for Down Syndrome at the University of Colorado Denver's Anschutz Medical Campus.

The institute will have the single research focus of eradicating the ill effects associated with Down Syndrome and will be the first to comprehensively address basic research, clinical research and clinical care all under one umbrella.

After years of due diligence and in the face of steady decreases in National Institutes of Health (NIH) funding for Down Syndrome, the Anna and John J. Sie Foundation decided that the best hope for real break-through and advocacy was a combined force made up of the University of Colorado Denver, the University of Colorado at Boulder, and The Children's Hospital in Aurora. Each organization has committed space, personnel and overhead to the Institute and it will be managed out of the Anschutz Medical Campus.

Anna and John J. Sie have high hopes for their granddaughter Sophia, born five years ago with Down Syndrome. Their family is determined to significantly enhance the lives of all people with Down Syndrome.

Chancellor M. Roy Wilson stated, "It has been a pleasure working with the Sie family in establishing this premier Institute here at the University of Colorado Denver. They bring a unique combination of philanthropy, family focus and business acumen to the table. The first $1 million in research grants that the Sie's supported in 2006 has already started to bear fruit. We are confident that insights that might be unimaginable today will soon be within our grasp due to the work of this Institute."

The Institute will aggressively recruit the best and brightest talent worldwide – both inside and outside the field of Down Syndrome and is expected to grow into a $150 million organization within ten years with staff estimated at more than 160.

World-renowned neurologist, William C. Mobley, MD, PhD, has signed on as the Executive Director of the Institute and has been a life-long advocate for Down syndrome related research."
To read the rest of the article please click here - Global Institute dedicated to Down Syndrome

Monday, September 22, 2008

A typical week for Nathan...

I thought you might enjoy, or be interested in, learning a little bit about a typical week of therapy sessions for Nathan.

Nathan’s favorite day of the work week is Monday – no therapy! At this point, Nathan spends the day with my bff Mary.

Tuesday, Nathan heads to his Nonnie’s and has physical therapy in the afternoon. Wednesday morning brings with it his first special education session of the week – again at Nonnie’s.

Thursday is the big day – we welcome Nathan’s speech therapist in the early morning, then we enjoy the company of his social worker in the early afternoon, and then end our day with physical therapy – all in the comfort of our home.

Nathan ends his work week on Friday with a special education session in the early afternoon.

And you thought children weren’t suppose to work!

I can’t believe it’s been seven months since we welcomed Nathan’s A-Team into our home and our family. And, just a few short weeks ago we welcomed the final member of the team – Nathan’s occupational therapist. She has visited once so far and will be working with Nathan monthly until he turns one – then, it’s once a week to start.

These wonderful women (yes, all women) have been such a blessing to our family. Not only do they care for Nathan but each has given me an unbelievable educational experience. As a first-time mommy, I would have had a ton of questions and my sister would have been the recipient of each one. But, as it turned out I didn’t need to call her all that much - I have five baby experts (all moms but one) to give me all the advice I need! It has really made this parenting transition easier and everyone could use a little less anxiety in their lives – especially this new mom that just wants the best for her son.

So, what about the current regimen? Well, Nathan is working on crawling in physical therapy! He is spending a good deal of time getting used to being on his knees – we place toys on pillows and prop him up. At this point, he is creeping backwards! I’ll take it – it’s so cute!

In speech therapy, we are working on eating more solid foods that require Nathan to munch. We are also working on his mouth muscles – his therapist teaches us facial stretching techniques and we use commercial products that stimulate the muscles. One toy vibrates every time he bites it – he loves it! The only downside is that it’s heavy and Nathan can’t hold it himself yet.

Even though this may seem like a lot – it’s not. Nathan loves his therapists and everything that he does is cloaked in fun activities. So, although he’s working – he doesn’t even know it!