Day 37/38

We had our second appointment at the genetics clinic yesterday. Dr. Morgan visited with us for a bit and did an exam in Ryman to report to the transplant team. We feel really lucky to have a doctor who really cares about what’s best for Ryman. We were hoping that we could just do a heel stick for the ammonia reads but those are not as accurate as doing a vein stick. We really don’t want to get a false high number and freak out. I was absolutely one of those crazy moms that questions the nurses and ask if they had ice to put the blood on immediately. I thought about just carrying a cup of ice in with me ;). The longer the blood is at room temperature the higher the ammonia level is, so you can understand why I ask before the lab is drawn. Dr. Morgan said that if he were her pediatrician doing a well child visit he would think that there was absolutely nothing wrong with her. That was a very encouraging thing to hear.
Her ammonia was in the 30’s yesterday. We love those low number!

Miss Ryman had her first bath in an actual baby bath tub, has had some tummy time, nails clipped, loves her swing, snacks lots, has her days and nights a little mixed up, been guarded and sniffed by her pug sisters, got to wear something other than hospital clothes, loves car rides, loves being held and isn’t happy when you up her down. We are actually getting to experience some normal baby things, what a blessed week this has been.

I really want to praise God and thank everyone for your continual prayers.
I had a realization today that Ryman’s numbers will eventually go up and we will be in the ER to get them down. It was a scary moment of reality and it is hard not to panic and feel sick to my stomach thinking about how I will respond and if we will catch it quickly. I am also amazed at how God settles these fears though the devotional ‘Jesus Calling’ that my sweet friend Marcia bought for me. Can’t thank you enough!

Here is what it said today:
I am involved in each moment of your life. I have carefully mapped out every inch of your journey through this day, even though much of it may feel haphazard. Because the world is in a fallen condition, things always seem to be unraveling around the edges. Expect to find trouble in this day. At the same time, trust that My way is perfect, even in the midst of such messy imperfection.

Stay conscious of Me as you go through this day, remembering that I never leave your side. Let the Holy Spirit guide you step by step, protecting you from unnecessary trials and equipping you to get through whatever must be endured. As you trudge through the sludge of this fallen world, keep your mind in heavenly places with Me. Thus the Light of My Presence shines on you, giving you Peace and Joy that circumstances cannot touch.

Ryman just doing some normal baby stuff:
Bath time.


Sister pug love.


Calm before getting woken up by a needle entering a vein in her head.. Poor baby.



6 thoughts on “Day 37/38

  1. Thanks for taking time to write the updates! I love the pictures! Wayne and I are praying for precious Ryman. I love the Jesus Calling devotional!

  2. I just realized my name showing up on your blog as Mom! So sorry Brandy and Jeremy! I guess that is how I’ve signed in on Bethany’s blog.

  3. I’m so glad that you all are getting to experience some “normal” baby things at home. I hope that she continues to get stronger.

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