Day 65

I just need to say that I am blessed with the most amazing sister, family and friends anyone could ever ask for. I don’t want to brag but I truly doubt anyone could add up how many people have loved on us over the past two months. I’m not sure where I would be emotionally, physically or psychologically if it were not for their love and support through this all. I did say 2 months!! On Monday Ryman had her two month birthday and on Wednesday she was 10 weeks old! She is really starting to smile and make so many new sounds. We have been face timing Jeremy while he is in Canada. He is going to be so surprised at how much she has changed and grown since he has been gone. He has also changed apparently. A new tattoo for his little girl, that I totally made him call the living donor coordinator to get the okay before getting, clean shaven and a new hair cut. I am going to have a new husband when he gets back. We miss him tons and can’t wait to see him on Sunday!
Ryman had her check up today, it had been a whole 2 weeks since we checked her ammonia. She weighed 8lbs 13oz, 4 kilos, we are getting closer. She had grown in height by a whopping 1 cm. She is no longer anemic, yippee. Her ammonia was 60, which honestly is a little too high for me. Dr. Morgan assured me that he wasn’t concerned. It is trending up but unless it’s 100 I don’t think there is reason to freak out. I was definitely panicking last night due to a dream that she was really sick and I was trying to get her to the ER. Dang dreams, I woke up in a panic and had this scary feeling all morning. I have really been struggling the past few days with feeling angry about the situation she is in. I’ve been reading blogs of other UCD moms and children who have had liver transplants. Some good things to look forward too and some complications to expect. But overall I start to think about the transplant fixing this issue but causing new ones. I think about Ryman’s future and what she will have to deal with. Will she need another transplant someday? What if the liver she gets only last 30 years? What if her body rejects it? So many what ifs that it can drive you crazy and run you into this very dark place. I found my self there this morning and I grabbed my phone and prayed that the Jesus Calling devotional would have something to pull me out if the dark path I was on today. Wouldn’t you know, the exact thing I needed. Live in the moment!
~Today’s Devotional~
June 27th.
Rest with Me a while. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded in uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant Companion. Trust that I will equip you fully for whatever awaits you on your journey.

I designed time to be a protection for you. You couldn’t bear to see all your life at once. Though I am unlimited by time, it is in the present moment that I meet you. Refresh yourself in My company, breathing deep draughts of My Presence. The highest level of trust is to enjoy Me moment by moment. I am with you, watching over you wherever you go.

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul.
—Psalm 143:8

“I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you.”
—Genesis 28:15

Pics.
Jeremy’s Tattoo.

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Many faces of Ryman.

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Happy morning.

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First Skirt, dad said it wasn’t long enough.

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First painted toes.

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Loving on her stuffed giraffe.

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Her eyelashes are getting so long.

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Janie really wants to be like Ryman.

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Put your hands in the air like you just don’t care.

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3 thoughts on “Day 65

  1. Girl, you are cracking me up painting her lil toe nails!!!! Love that GIRLI!!!!!! LOVE LOVE LOVE the pics!!! She is getting big— FAST! And I LOVE Jeremy’s new tatt!!! He’s the best daddy EVER!!!! Oh, and the skirt IS too short! HAHAHAHA !!!!! LOVE YOU!!!!!

  2. Wow how she is growing, so happy for that! I can only imagine the uncertainies you have running through your mind. But God has blessed you with such a gift. Don’t get to caught up with what tomorrow may bring and miss out on today. I know, I know, easier said than done… Just know God has it under control.
    We love you Hun and are so proud of you! Just look at you, such a beautiful proud momma 🙂 Give that princess some love from us!

  3. Sweet pictures of Ryman. Love the bow. I am praying for you all. It may not be apparent right now but this has drawn you both into the daily moments with Ryman that if she didn’t have this health concern you might miss. Also as the mother of 2 and grandmother of 4 young grandchildren you would worry about all kinds of possibilities the first year of a babies life so don’t be too rough on yourself about worrying. I think Ryman is lucky to have such a great Mom.

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