Day 87

We’ll some days just start out way better then they end. Yesterday was that day for us.

Ryman has battled high ammonia levels all day long. One of our geneticist in DC thinks that we have been treating that whole thing backwards. The rest of them think that she isn’t getting enough protein so adjustments to the formula have added protein. This isn’t working and in a last ditch effort they are gonna flip everything upside down and take protein away in hopes of getting control of this ammonia.

We sat with Dr Morgan tonight and decided that DC is where we need to be. Not so much that they can do anything he can’t but that we need to transport her before she gets any worse. She is on pace to get on dialysis and stay on it till transplant or live with the fact that her ammonia will be 200-300. This is very short notice and caught us both offsides so we are trying to pack and plan for what this will look like.

I will be calling the living donor transplant coordinator first thing in the morning. Looks like I will aim to get the full work up on Monday. Really hoping for a match so that if it comes down to her needing it we have the option and already run the test.

It’s hard not to try and take control right now. Or at least that false sense that we think control is. I’m realizing daily how little I have to do with how this whole thing has played out yet I still keep reaching for the reigns.

Our frustration levels have been pretty high all week. I’ve almost written a few blogs and then find myself being so angry and dark that nothing but complaining comes out. If you’re one of the people I texted instead I’m sorry but thanks for all the great advice.

Please understand that we are not ungrateful for all the blessings Ryman has already had. We’ve had an amazing 45 days home and try to focus on the fact that we didn’t expect to be here right now. Ryman is a tough cookie.

-Jeremy

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3 thoughts on “Day 87

  1. I am praying for you daily… and I want you to know that my Thursday morning Bible Study group will join together on our knees today in prayer for you 3 Littles. Your faith through this whole ordeal has been ministering to others in HUGE ways. I know God has your baby girl right in the palm of His Hand. I’m so sorry you are all having to go through this, but I KNOW God will continue to give you the strength you need to face each day. Please call me if there is ANYTHING I can do for you!! LOVE YOU SO MUCH!!! — M

  2. Jeremy, your perseverance and steadfastness have been amazing considering the emotional levels for which they have been tested. It seems the forces that you contend with of late are both improbably positive and exceedingly negative. Professionally you’ve worked your ass off to get to where you are and now personally there are these huge, life-altering questions to be addressed with unknown, unforeseen answers. Honestly, I have thought about Brandy, Ryman, and you often and have smiled and cried looking at your pictures. As a Dad, I can’t help but occasionally put myself in a place to where my cherished loved ones had to deal with something dire. I realistically understand that these emotional events occur to everyday people, but when they happen closer to home, they are a stark reminder of the fragility of our collective existence. When I get into a head space to where I ponder the unknown, either positively or negatively, the best advice I remind myself of is to control the controllables. Focus on the task at hand and put my effort into what’s right in front of me. I can find solace and peace in doing the things that I can do right now. Remember, the future is just that. Although your situation is one many can’t fathom, worrying about a possible future is not healthy. The things you can do today help to prepare you for tomorrow. Activity, hope, support, and family are the cornerstones to a positive future and all have been in abundance for the three of you throughout. Keep on keepin’ on my friend, you’ve got an audience of fans who are cheering loudly for you. – Love, Reese

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