"Come together, right now...."

So this happened! What exactly? Well, it was the first micro-preemie parent support group. And while the turnout was small (like 4 people that included me), it was definitely what the doctor ordered. 

There was cutie Jacob who was born at 27 weeks, Miles a 28 weeker, and Colin (my 25 weeker cutie). Our dear friend Johanna even showed up with her full termie for support. 

What did we talk about? You know, the usual chatter that is prevalent among micro-preemie parents: therapies, doctor appointments and the dreaded RSV season coming up! It all made for conversation that was never lacking. 

Now, the next step has to happen, and for now, I am not quite sure what that step is going to look like. As I said in an earlier post, I am looking to create a network that consists of micro-preemie parents like myself. The main reason is entirely selfish; I want to meet parents who are going through EXACTLY what I have been going through these past 2 years. Aside from that, I am open to suggestions. 

One thing I know for sure is that in my 2 year journey with Colin, I firmly believe that kids born in that specific zone of arriving at 27 weeks or less typically will all share some if not all of the same developmental/medical issues. More than likely, all of our kids suffer from these 3 areas:

•  developmental (ranging from Cerebral Palsy to not meeting milestones at the appropriate time)
• vision (ranging from blindness to some sort of vision impairment)
• medical (usually breathing or intestinal digestion problems)

And while there are some kids in the 28 week to 30 week zone that also could qualify, for now my focus is specifically on micro-preemies for now. 

So, how can you help me bring everyone "...together, right now" like the Beatles song says? You can start by forwarding this blog and reaching out to parents that you know that have children born during that window of time. In time I hope to meet all of these parents and figure out a way that can best serve everyones needs. 

Why do I want to do this? Because I firmly believe in paying it forward. There has to be someone out there that has felt alone and wanted to find reassurance, advice, or to even just see another child like their own to have hope for their future. That is what happens every time I meet another micro-preemie family. 

Colin meeting his micro-preemie friend Pierce in North Carolina!

In the meantime, how is Colin? Plugging along, trying to charm everyone he meets! While we are no where closer to crawling or standing, we are just trying to be patient that one day he will finally take off. Our therapies have changed a bit. For now, we are doing: OT, PT and Early Intervention. 

Over the summer we took a break from ABM, we took some swimming lessons for a bit (which he LOVED!) and we got to do much needed travelling as a family. A few weeks ago we received the definite conclusion that Colin has the dreaded CP diagnosis (cerebral palsy). 

What does that mean for Colin? Nothing really. We knew he pretty much had it all along. We just had to wait until we were closer to his 2nd bday before anyone would "officially" diagnose it. For now it confirms the understanding that it will take a little longer for him to learn to stand and eventually walk. But I know in my heart that he will walk one of these days. (How is that for faith?)

Now we enter into the world of medical equipment like wheelchairs, gait trainers, bath chairs, leg braces, etc. We are also still exploring alternative therapies like Conductive Education, DMO suits (thanks Lindsay Franks for that one!) and even horse therapy! 

That is why starting my micro-preemie group is going to be so important. Creating a network of parents that are all going through the same challenges is going to really help Colin move forward. I just know it. And maybe more importantly, it will help others move forward as well.

So for now, Happy Halloween everyone, and stay tuned for more exciting news!