Day 101

Ryman is over 101 days old, how crazy that is. Sorry for not posting the last few days. I started back to work this week (my amazing company is letting me work remotely) so its been a busy week here. Nanny came for a visit too and Poppy will be here another week. They have been a huge help in us not killing each other from being stuck in a hospital room together for days and days. Good thing we love each other! Big news is that we came off of the Ammonul and went back on the oral version Buphenyl! So Ryman has been taking a bottle again. We had a vomit yesterday morning so we had to push last nights down the NG tube. Ammonia has been up and down since switching, 22 was the lowest and 96 the highest. All over the place really so we are trying to find the right schedule to give the meds to keep her more stable. We get to come off of another IV today and can take breaks from the last one if we want to go for a walk around the hall. So excited to get to take her out of this room for a second. She has to be so bored of these same old walls and ceiling. Ryman is definitely like her dad, she is a night owl. Stays up until midnight and sleeps in.
-fast forward-
We got to unhook her and go for a walk!! She was looking left and right the while time, so excited and happy.
Nicole and Chase got here today. So excited to have them up here for a few days. Nicole is staying with Ry tonight so we can go sleep in a bed for the first time since Jeremy got back.
We might also get a room upgrade tomorrow, we need the space, Ry is racking up on toys and stuff. We have basically made the room our apartment.

Thank you everyone for continued prayers! We feel them and see them answered every day we hold Ryman in our arms. We love you!

Pictures galore:















6 thoughts on “Day 101

  1. Hey you two. Just letting u know praying for u all three daily and for the Wisdom to make ur decisions. Ryman is simply adorable. I see u both!!! Brandy step up the calories. What a ride u both have been thru!!! What an amazing journey thus far and how inspirational u all three are to us!!!

    RB and Tila Dunn ( Clare’s parents)

  2. Morn’n Sweety, glad you and Ry has been able to get out and stroll. She has quit a personality shining thru in those pics, I bet she’s a sweety! We love you guys and are praying everyday and then some. Please don’t forget to take care of yourself. I remember how weak your mom got when Sara was in the hospital. I can imagine it’s hard to find time to eat, so get you some health drinks and snacks to keep with you. Ryman need your body and mind healthy 🙂 Love you so much!

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