200 hours in

Ammonia levels have stayed pretty level all day. 39 to 80 and have bounced up and down. We still have hope for the miracle drug (carbaglu) but realize it’s still a long shot. Prob won’t know if it worked or not until we get to DC. We are still trying to figure out when exactly we are leaving. Might drive through the night tomorrow or we might wait until Monday morning to hit the road.

Tonight we spent most of the night packing and trying to figure out what we actually need. It’s pretty funny how much STUFF you have that you just don’t need. It’s going to be a big adjustment for both of us not to have our dogs. Nikki and Janie are a giant part of our family and it’s sad to know they won’t be sleeping with us after tonight. :-(. They are going to stay with our friends Kate and Tony who have 2 pugs also. Gonna be a gaggle of pugs at their house. We know they’ll send lots of pictures.

Personally it’s hard for me not to sit and try to bargain with God right now to make the carbaglu work. I believe that he has brought us on this journey and can make anything happen but fear that we are still at the beginning of this ride. Nothing would make me happier then to unpack my car and not have to leave Nashville. Either way though I know one day I’ll be bringing all this stuff back inside while Brandy sits and plays with Ryman.

We will not post an update tomorrow.

Tomorrow we plan on being at the hospital until 5 and then heading over to crosspoint.tv. We’d love for you to join us for the 5:30 service.

-Jeremy

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3 thoughts on “200 hours in

  1. Prayed earlier today that the carbaglu would work, but whatever happens, God would help heal your little girl through the docs hands. God is working through you to inspire others. Hope your journey doesn’t last too long and you can be home as a family soon.

  2. praying that the carbaglu will work…knowing that God has sifted this, too, through His hands. Praying for your safety as you travel…praying God shows Himself in a mighty and powerful way!

  3. I just want to first thank GOD !! For keeping his loving hand on my sweet granddaughter Ryman , & also Brabdy & Jeremy ! Together you seem to be so strong! But deep down I know how scared you are ! After getting home last night after our visit, I broke down ! I don’t really know what you guys are going through! I thought I did ,after everything I went through with Sara , &i think that’s what hit me last night, No two exspereances are the same!! And When I got there yesterday , there you were Brandy , my heart was tore in hafe, did not know what I was going to even say to comfort you ! But then there you were giving comfort to another family, & that warmed my heart , with you guys going through this ordeal with Ryman , you still can find it in your hearts to be able to give other parents words of incougerament ! That let’s me know without adout, that GOD is with you 3 on this road you must go down!! & I know now you will be fine ! Not to say it will be easy by no means !! But you guys will be bringing Ryman home before you know it ! Because GOD is with you & most of all you are with GOD ! I seen & heard that yesterday !! & Brandy I still have not let go of that hug we had as we were leaving , you keep it with you as you go off to DC. Because I’m not letting go sweetheart ! I love you guys very much ! & just remember I’m just a text or a phone call away!!! XOXO!! :)!

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