Interesting article

Just wanted to post a link to an interesting article that I just read about stem cell therapy:
http://www.washingtonpost.com/wp-dyn/content/story/2010/06/05/ST2010060503456.html?sid=ST2010060503456

A WALKER!

Back in January, during a brief encounter with Natalie's school physical therapist, she said to me "I see Natalie being a walker in the future". A few years ago I would have cried with relief if a therapist had told me this. At that time, however, I just thought "I know". This is because even though I had a hard time picturing her actually walking, I was more confident that she would eventually get there even if it wasn't until she was 5 or 6 or even 10!

Now, 5 months later, she's really getting excited about walking. FINALLY! It's as if something clicked for her and she went from doing just about anything to get out of walking to wanting to walk EVERYWHERE and ALL THE TIME! To make it clear to those who don't see her often, she is not walking independently (yet). She walks with someone holding her hands, as you would with a baby first learning to walk, or she uses a walker. Just this week, I was able to borrow a bigger walker than the one that she was using and she really took off with it. I think she feels more secure in it than she did with the other walker which was really too short for her.

Below is a video of her walking this week! Try to ignore Howard's loud background commentary.

Teddy Bear Picnic

Reading in the car

Combining two of her favorite things right now - Dora and books! This is how Natalie keeps herself occupied lately on our drives to and from Dayton. She will look at one page for a long time and then hand the book to me to turn to the next page for her.

Being a mother

For as long as I can remember I wanted to be a mother. I grew up in a large, close family, always with plenty of people around to play and laugh with. I saw my grandparents several times a week and until I was about 14 years old my cousins lived next door to us! I was the oldest of my siblings and cousins and growing up we had tons of fun adventures together.
I never imagined that the road to becoming a mother would be as long and difficult as it ended up being. However, about 4 years ago this month, I was celebrating my first mother's day as a mother-to-be. I know I was so excited but it all felt so unreal. I'd wanted to be pregnant for so long it was almost as if I did not believe that I really was. On top of that, I was pregnant with twins!
Little did I know then that in a few short months everything would change. I went into preterm labor at 20 weeks and was on bedrest in the hospital until 23 weeks and 5 days into my pregnancy when Natalie and Andrew were born. Being thrust into the world of parenting a micropreemie involved so many terrifying decisions with the very first being did I want to even give my children a chance to survive. They were born so early that they had less than 40% chance of surviving and very high likelihood of having significant disabilities. Most readers know that Andrew survived only 2 days and Natalie spent 110 days in the NICU fighting infections, having surgeries, and learning to eat.
So while the road was not easy in any way, I am thankful that I have the chance to be a mother. Being Natalie's mom is the best! Her wonderful personality makes it easier to put her traumatic beginnings behind and just enjoy her each day.

AAC Trial

Natalie is currently in her third week trialing the Vantage Lite, an AAC (Augmentative & Alternative Communication) device from an awesome company called Prentke Romich. These type of sophisticated communication devices have opened up the world of communication to many children and adults with disabilities who otherwise would not be able to, or would have significant difficulty, interacting with others. I understand they are widely used for children with neurological conditions such as CP but also for children with Autism and a variety of other disabilities which negatively affect the ability to communicate verbally. Normally, if the trial goes well and everyone agrees that there will be significant benefit from its use, we will place an order for Natalie to get her own! In case some were wondering, the fact that we will likely be going this route does not mean that we have in any way given up on Natalie being able to communicate verbally. Research has shown that AAC devices actually facilitate speech skills and many kids start speaking more, and more clearly, after using an AAC. I am very happy to report that Natalie has very quickly picked up on how to use her device to communicate some basic wants and needs. It was exciting to see that she seemed to really "get it" from the very first day. Below are some short videos of Natalie using the Vantage Lite during meal times. Just a note that this is a very complex device and the way we are using it now is in just the most basic way. See Fighting Monsters with Rubber Swords to learn about Schuyler, an older child who uses this same AAC device in a much more sophisticated way. This will illustrate the possibilities this device will give Natalie over the next several years.



**Please excuse Natalie's crazy hair in the last video. Someone who I won't name but who babysits for Natalie 2 days a week must not have felt the need to comb Natalie's hair that day. I suppose it makes sense knowing that this same person did not willingly brush her own hair until she was about, oh, maybe 10 years old!

Oh, did I forget to tell you? I know my colors.

I got a pleasant surprise at Natalie's Occupational Therapy session last week. Her therapist was working with her on stacking blocks and started asking Natalie to get certain colors to stack next and I was amazed to see her get it right nearly every time. It seems that she knows green, blue, red and yellow. I had no idea. I wasn't prepared with my camera at the time so this week I made sure that I had the camera ready to get a video or two. She was not really motivated to do the stacking this week as you'll notice but who cares -- SHE KNOWS HER COLORS!