Day 146

So where to begin. First let me say that I am sorry I haven’t updated in a few days. It was an extremely rough weekend for me. I think the lack of sleep, stress and just plain frustration had caught up with me on Thursday. Ryman wasn’t sleeping great and was having some issues with her heart rate and respirations again. We still haven’t determined what the true cause is but no one seems to be too concerned with it so I am trying not to stress about it. Over the past few days she has been given blood, has had her picc line removed (due to it not drawing), attempts were made twice to place a new picc line with no success, had a central groin line placed which stopped drawing 24 hours later, was poked over and over to try to get blood for labs, had another CT scan, decided she didn’t want to eat, had a fever, has had low and high potassium levels and the list goes on. It was just a lot to stand by and watch. You really feel helpless when you have to watch your child getting poked over and over or listen to her cry and not know how to make her better. It has been a crazy emotional time and I hadn’t been in a place where I felt like writing anything. It is hard not to feel defeated sometimes. Everyone tells me that I am so strong but I definitely have those moments of weakness where everything just feels like it is way too much to handle. This week was one of those breaking points for me and then as quickly as I felt defeated God lifted me up and reminded me that he is here, guiding me and taking care of Ryman. Today was the first day since the clot surgery that Ryman seemed herself. She smiled and cooed and sat in our lap without screaming every time we moved her. She is still running a low grade fever but all in all she seems more herself which is a good sign. It made me realize that God once again is taking care of our little girl. After all she has been through this week she still smiles at us and she is still doing so amazing for where she is.
Her ammonia was less than 25 yesterday morning, we started her on full feeds through an NG tube today until she decides to eat more than a few ml’s at a time and the CT scan they did shows that nothing has changed since the clot surgery. Other than the no flow from the hepatic artery they caurterized everything looked the same. Which is so good. Her liver numbers are very stable and they still feel really comfortable waiting for a liver her size again. This is an amazing place for her to be and we thank GOD every day that we are not having to just stick a new liver in her that is too big or one that could potentially cause more issues.
Today I am reminded of how very blessed we are in so many ways. From our friends setting up a Go Fund Me Page http://www.gofundme.com/rymanalilittle , a friend from high school setting up a benefit in my hometown http://www.facebook.com/Love4Little , and all the messages we get from friends and even strangers about prayers being sent out for Ryman. We have even had lots of visitors since I last wrote Rachel, Kiera and Sarah (nurses from Childrens), Dr. Lanpher, Dr. Cusmano (Rye’s Geneticists) and Dr. McCloud (Rye ’s Dietician). Julie and Corey (and their really sweet youth pastor), Julie’s parents, Megan James (during her layover to Africa to see her kiddos!), and Jeremy’s mom, dad and sister! It truly is amazing how many new relationships we have through all this. Not just those surface ones either, some that I know we will keep for the rest of our lives.
We are so blessed! I know there are always going to be those days that are extremely hard, who doesn’t have those days, when you question why? But I can’t wait to look back on our story and Ryman’s life and say… yes, that is why, God gave her and us the community, love and support to lift us up through this and for that we praise him.
Much love to you all.
Goodnight.
-B

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6 thoughts on “Day 146

  1. Prayer upon prayers. You’re on our minds and in our hearts every single day. Love y’all. Give the tough lil cookie monster a kiss and hug from us! XOXO

  2. Chase and I are pretty sure alligator is sporting a green baby snuggie?

    Sweet sister no one expects you to be strong all the time. That’s why God gave us the body of Christ to walk alongside, carry, encourage and be HIS hands and feet. The Little’s have a mighty army of prayers. You are never alone or far from all of our hearts & prayer lists!!!

    Love,
    Aunt Coco& chase

  3. prayers continue for all you Rymans sweet smile is so precious such a tough lil girl , I can not even begin to imagine as a parent the pain to watch a child going through all the tests, pokes etc Stay strong !

  4. Sweet Brandy, know that you are loved and prayed for often. The picture of Ryman’s poor little arm with all the black and blue stick marks breaks my heart. You and Jeremy surely have battle wounds too… They just aren’t visible. Your update is so informative and even in distress you are an encourager! We serve a loving poweful Jehovah Rapha God! I love how you talk about looking back on this all later where surely we will all see God’s handprint all over your story! “Fear not, for I am with you; Be not dismayed, for I am your God. Yes, I will help you, I will uphold you with My righteous right hand.” Isaiah 41:10.

  5. For as mighty, loving and giving as The Lord our Savior is, there is always the Devil trying to turn us from our faith! That is why God brought you and Jeremy together, so that when you are weak he can hold you up and when he struggles, you are his might oak! We will pray for Adorable Ry to have an easier go of it and for you and Jer to have a chance to catch your breath and enjoy her sweetness more. We will pray that God continue to strengthen you and make his presence known! We love you Hun, so very much!
    You are not weak, you are human ❤

  6. So glad for the update as I was concerned it was because Ryman and you all were in a rough stretch. I have had you in my prayers and know that when it is rough and extra trying for you there are those of us here “standing in the gap” for you. So just post “stand in the gap”and we will know to send extra prayers for strength for you. Ryman’s pics are great-love her big pretty eyes.

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