Updates and Resources...

It's been a while since I've sent out any updates on my blog... Little Ian is doing really well and he improves everyday with his bottle feedings! As of yesterday, he has been taking every other feeding ALL from his bottle. The alternate feedings he's taking about half from his bottle, but it appears we are getting closer and closer to getting him home! WOO HOO!!! Go Ian!!!!! He's also still gaining and is tipping the scales at a whopping 4 lbs 12 ozs. My little piggy :) The hospital staff have asked us to go ahead and bring in our car seat so we can do a "car seat challenge". This is where they strap him in to make sure that he can maintain his airway, etc. I guess that means we need to get the base strapped into the vehicle so we can make sure this is put in there correctly :) That's very exciting :) On a more somber note, he has failed the hearing test - again. They have tested him twice now and he has failed both screenings... However, these are only screenings. We have heard that most newborns fail these initially due to built up wax/debris that is still in the ear canals from when they were in the womb. Kids with Downs have smaller ear canals so hearing and ear issues can always arise (more prone to infections, etc.), but this would also make "flushing out" the wax/debris a lot harder for their little bodies... This may not show a real permanent issue. It could just mean that his body hasn't gotten rid of all that stuff yet. We will most likely be referred to a specialist so we can undergo better testing that will give us a better understanding of his situation...

We have been provided a lot of resources so far... The NICU staff provided us a fabulous book "Babies with Down Syndrome: A New Parents' Guide" (pictured at right). It's been a fabulous book that has really helped educate us on Ian and his diagnosis... We're still reading through this obviously, but it has been so instrumental :) It's also brought up other items that we never really thought about in our futures... For example, Doug and I will never be grandparents if Ian ends up being our only child. Boys with Downs are usually infertile - in fact there have only been 2 reported cases of boys fathering children according to this book. This isn't really something that I thought would be a big deal - until I read that. I won't ever be a Grandma or a Nana... That was a little depressing to me. I guess I never realized just how much I was looking forward to that aspect of my future. But who knows, maybe we'll have additional children. And that brings me to another piece - I have a higher risk now of having a second child with Downs. Actually a 1-in-100 chance! Ian was a 1-in-455 chance. I don't think my body likes being pregnant anyways after all the issues I had so we probably would not go this route again in the future if we decide to have more children... We would most likely adopt instead.

Another book we were given by Doug's co-workers was "I'm Down with You" (also pictured at right). This has been a fabulous book that has been more inspirational for Doug and I. It has really encouraged us to see Ian's true potential and what he will bring to our family. You can't help but look at all of these amazing kids/young adults and not feel the joy that eminates from each of them! This book shares stories and quotes from their parents along with the authors of this book. These kids seem to have made instant relationships with the people involved with this book... Will that be Ian's future too? Will people instantly see how special he is and how much he means to us? Probably :) I can't help but love on him every time I get near him!!! His little face is just so kissable! I'll probably embarass him horribly as I'm dropping him off at school by kissing him uncontrollably before he starts his day :) He might hate it - but I can't wait!!! I just love my little guy so much! He better be willing to put up with his crazy mom that can't help it :) Hahahaha!!!

An online resource we've connected with is Northwest Down Syndrome Association. They have a fabulous website: www.nwdsa.org. They have all sorts of imformation listed and they have a bunch of information regarding their community involvement and their advocacy projects. I'm impressed! They also have a play group that meets the 2nd Tuesday of each month for kids birth-to-5. They involve the whole family is this play group so the other siblings of kids with Downs are encouraged to come too. Seems like this will be a great help for us in getting to know other families in our situation :) The next group meets on June 14th so you know we'll be there! This organization has sent us a "New Parent Guide" with all sorts of additonal resources and tools. It has some educational information in there that will help us to better understand Ian and his development. We will most likely be making some phone calls in the weeks to come to get started on Early Intervention for him so we can start working on his motor skills, etc. We still want to make sure that we are doing our very best as parents to make sure that he can have the brightest possible future. Developing these motor skills now will help him in his future :)

Now if only he'd come home so we can start working on these things :)