Ok, update: first off thank you everyone for the prayers. Here is what we found out and what's happening. Phia had labs and her numbers increased again which was expected. They are ready to list her for transplant. We will be going down one of the following weeks to get the transplant work up. It consists of meetings with 7 members of the team as well as labs for Phia. Once our meetings are done and she is listed they will start testing for a living donor. Our goals now are continue to get her weight up, get/keep the fluid in her belly down and no bleeding. Please continue to pray. We need all of the love, support and prayers now more than ever. We know she is going to get sicker so we need all of the prayers. If you have any questions please ask!
Thursday, August 29, 2013
Monday, August 26, 2013
Every Rose has it's Thorns, Well, Almost.
Steph's rant, hmmm where do I begin? Am I angry? At times yes, along with
sad, scared, and frustrated. I can't begin to tell you how much this has
changed me. I have always loved being a mom, I have always enjoyed our
life, but everything we've seen I appreciate it so much more.
Anyone who knows me knows I'm a planner, an organizer, I umm.... ok I'm a control freak. Phew ok I said it. I can't control this right now, I can't plan it and all I can organize is Phia's medical binder and meds.
All I want is to make things better, better for Phia, better for Lexi, Spencer and Liza who are concerned when Phia, mommy and daddy leave again, better for Arvid who is a roll-with-the-punches kind of guy but I know his pain and I've seen it. Better for our parents, our parents who have always been there for us, who have always been strong, but are now at times falling apart before our very eyes.
I am and always have been a people pleaser, I want to make people happy, I want them to feel better and this time I can't fix it all, I can fight like hell and that I will but I myself can't make it all better for everyone and there is no better way to put it than, IT SUCKS!
One of the nurses told us our lives for now would be a roller coaster ride, ummmmmm HELLO, I hate rides!!!! Slow down, stop, let me have a minute, whoa, wait we are going again. That's how I feel. But we will learn and grow from this. In my eyes it's our only option. Only option!
I'm going to end with something an amazing lady just told me. She said "You can't get a rose without the thorns". Wow, that was and is very powerful to me. My response in my head, umm my grandpa always cut the thorns off for me so I didn't get hurt. My favorite rose is a sterling silver, umm they are nearly thornless. But she is so right. I am an adult now and I have to deal with the thorns. But I know along with all of you my grandpa is watching over and protecting peanut from the thorns as always. I know that my stubborn as hell grandmas are right there and every time Phia smiles I see my grandpa Howie and know he is right there with us. Each thorn is one step closer to our beautiful flower!
Anyone who knows me knows I'm a planner, an organizer, I umm.... ok I'm a control freak. Phew ok I said it. I can't control this right now, I can't plan it and all I can organize is Phia's medical binder and meds.
All I want is to make things better, better for Phia, better for Lexi, Spencer and Liza who are concerned when Phia, mommy and daddy leave again, better for Arvid who is a roll-with-the-punches kind of guy but I know his pain and I've seen it. Better for our parents, our parents who have always been there for us, who have always been strong, but are now at times falling apart before our very eyes.
I am and always have been a people pleaser, I want to make people happy, I want them to feel better and this time I can't fix it all, I can fight like hell and that I will but I myself can't make it all better for everyone and there is no better way to put it than, IT SUCKS!
One of the nurses told us our lives for now would be a roller coaster ride, ummmmmm HELLO, I hate rides!!!! Slow down, stop, let me have a minute, whoa, wait we are going again. That's how I feel. But we will learn and grow from this. In my eyes it's our only option. Only option!
I'm going to end with something an amazing lady just told me. She said "You can't get a rose without the thorns". Wow, that was and is very powerful to me. My response in my head, umm my grandpa always cut the thorns off for me so I didn't get hurt. My favorite rose is a sterling silver, umm they are nearly thornless. But she is so right. I am an adult now and I have to deal with the thorns. But I know along with all of you my grandpa is watching over and protecting peanut from the thorns as always. I know that my stubborn as hell grandmas are right there and every time Phia smiles I see my grandpa Howie and know he is right there with us. Each thorn is one step closer to our beautiful flower!
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