Day 105

Today we stop the lipids and disconnect from our last line! Ammonia was 19 this morning, I sit and think about how far that number has come in just a few weeks. God is amazing and we are so blessed. This week I read another mom of a urea cycle child’s blog. Her child laid in a hospital with high ammonia for days before being transferred to a hospital that knew how to treat it. It broke my heart to read her words, what I wouldn’t give for my child to look at me and know I am his mother. Every urea cycle patent can’t help but ask, what was your child’s highest number. The crazy thing is we are each so uniquely created by God that even our brains are affected differently by levels of ammonia. One child with levels of 2000 is meeting all her milestones on time, yet a child with his highest level in the 600’s can not recognize his own mother. It really comes down to the duration and not the number. I think back about everything that happened when Ry was born and know that God lead us the entire time. From our nurse Wendelyn, to Dr. Kostner in the NICU at baptist, the fact that we were two blocks from Vanderbilt who had a team of metabolic doctors and the capability of ECMO, where the doctor who discovered CPS1 use to work, being sent to DC where we had friends to help us not feel so lost, getting to go home and do normal baby stuff and be loved on by family and friends, I could go on and on. God has blessed us again and again. Tomorrow evening we find out for sure if Jeremy can be a living donor, as we wait for a call or make the decision to move forward with Jeremy donating I know we will be blessed.
We love you all and hope you know that we understand that you and your prayers are a huge part of that blessing.
Ryman’s new apartment:

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Dad and Ry:

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Ry and poppy:

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Ry & Aunt CoCo:

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Cousins:

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Ry:

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2 thoughts on “Day 105

  1. Oh how this beautiful sweet child has grown! I am thanking God as I read each sentence of this post! Ryman has had God’s hand upon her from day one. It will be my continuing prayer for her healing and for you and Jeremy to feels God’s presence every moment of the way.

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