The Situation

Now, I'm not talking about the guy from Jersey Shore ;-)

I'm talking about the fact that I'm getting more and more frustrated because parents are not being supported to have their children home on ventilators up here - and it's not necessarily having the support of people, but needing a system in place to allow you to have your child home.

It seems like such a foreign concept to people.
But for parents who are extremely involved and know their child better than anyone else, it is the most natural thing in the world to want to have your child under the same roof as you - ventilator or not.

Not having Moriah home is becoming more and more foreign as she is getting older, and becoming more attached to us. To leave our child at night as she watches Mommy and Daddy go home is becoming such an odd concept to us.

We have recently started the process with CRC to get Moriah home (Yay!), and they have been very supportive with it - for which we are grateful. We are working out all the kinks with insurance, vendors, home nursing, doctors, etc. It's been a very slow process, but I know we will have her home soon enough. I know it. I feel it. God has given me such a peace about it.

But, what about the other families who want their children home??? We have met so many along the way who are facing obstacles - it just doesn't seem fair.

If there is something that Justin and I are extremely passionate about right now, it's this. And we will continue to do what it takes to try and change the situation.

If you have any suggestions or advice, or have been through something like this before, we are more than willing to listen. We continue to be amazed at the support received here.

Lots of love,
Team Nelson
(Our old Case Manager at LPCH, Lupe, gave us this title and now I'm hanging onto it ;-) )