Monday, January 24, 2011

A new kinda normal...

So no blog post yesterday. Neither Dad or I had it in us. The highs and lows seem to come in waves. Well, really it's more like the lows, lows, highs, lows, lows. Come in waves. Yesterday was just one of those days.

I don't really have time for a full post right now but will update tonight when I have more time.

Video of Mason and his glow Seahorse that Auntie Kim gave him. He loves it!

We've come to the point where we are realizing that we aren't getting home any time soon. You aren't progressing on the breathing machine and there is nothing that is going to change any time soon that will help you progress. This realization has been a blow to our spirits, and our stamina.

The Dr's told us to expect a 2 week stay. We planned on a 3 week stay. It's looking more like (months?).

This wouldn't be a problem if it were just you. I would probably just get a job at the hospital next door. Your Dad would find a way to commute to his job in Anaheim from here. We would just move our life here, as long as you needed.

But it's not just you. There is your brother too.

We don't talk about Pierce on the blog much. Not because we don't think about him but because we can't. We feel like we are suffocating with how much we are missing him.

The only way we can deal is to not think about him because thinking about him hurts too much. The longest we have ever been away from him before this was 48 hrs and we barley survived the separation. Now we have barely seen him in over two weeks and we are starting to shut down.

You are our lives. You TWO are our lives. The way I miss you minuets after walking away from you bedside even though I been with you for hours is the way I feel about your brother every second of the day.

We are a family and this family just doesn't work without all of it's members.

The reason we have been able to be here the way we have is because of my sister and her family. We are so blessed to have them.

Their home has always been like a second home to Pierce and they have always loved him and treated him like the 3rd child they always wanted and never had.

We can walk away from him because we know they love him as we do, that all his needs are being met. While he is with them we don't have to worry and it's been an amazing gift. They my sister Jennifer, my bro in law Patrick, my niece Lauren, and nephew Jonathan have gone above an beyond for us and we will never be able to thank them enough.

But we need to get home. We need to get back to a normal life. A new kinda normal.

Since you are so heart healthy now (Yay heart!) you no longer need the specialized care that only CHLA can give you so we have started the process of getting you transferred to Loma Linda hospital which is much closer to home.

There is so much more I need to update about but I'm out of time so we now hope. Hope that insurance will agree to the transfer, hope that Loma Linda can handle all your specialized needs, hope that they will accept us, hope that we can get this family back together soon.

I feel so blessed to have my family.

I am nothing without them.

I am unstoppable with them.


mj said... Best Blogger Tips

I'm so glad you have a strong support system, its wonderful to have such great and loving family. I'm keeping my fingers crossed that the transfer works out for you guys since I know that will make a little easier on you guys. Sending lots of love, hang in there friend!

Becki said... Best Blogger Tips

Oh Amy, I can't imagine how difficult all of this is, thank God you have an amazing family to help you through it. Saying prayers and keeping every body part possible crossed that the move to LL will be smooth and quick.

sherthebear said... Best Blogger Tips

Thinking of all of you and praying that you will be able to all be together very soon.

Melissa said... Best Blogger Tips

I only have tears this morning.. Still praying hard for Mason and you both..