It has been a while since I have updated the blog. I’ll be honest, there have been several times I started a blog and then something happened and I never posted it. Most of the time that something has been me falling asleep. (Yet again I fell asleep before finishing this last night )It has been a busy couple weeks since the Liver Life Walk and my last post.
In order to catch up I need to jump back a second before the walk.
I never got to post about Ryman’s first beach trip. Ryman and I rode down with Allan and Patti so we could take lots of stuff with us, of course. The trip started at 3am and with Ryman having a blowout diaper right before we left. It was super gross, smelly and yellow… which all points to a virus. I was a little worried about leaving town (Vanderbilt) but decided to go and if we needed to come back early we would. Ryman continued to be sick for most of the trip, she didn’t have a fever and was eating and drinking great so the doctors agreed that we could stay and just come straight for labs when we got back. Ryman did love the ocean though. I thought she may fall asleep as soon as she heard the ocean waves since she sleeps to that sound every night on her noise machine. She was good though and only fell asleep once. She wasn’t much on the sand but she would have stayed in the ocean all day. She tried to drink the salt water and was screaming with excited at every wave. Aunt Sara and Uncle Robert just happen to be on vacation at the same time and were able to stop by and visit too. Jeremy, Ryman and I flew back to Nashville on her 5th airplane ride! My first time on an airplane was in high school! She has already blown me out of the water on that one. We got back to Nashville and went straight to labs. Those came back in normal range but up just a bit. Nothing to worry about though. However, the next week Ryman’s numbers were up more and the following week up enough to be concerned. That dang Alkaline Phosphate was back up to 2900. The following day we repeated and they were again up some and the Alkaline Phosphate had jumped up to 3000. The doctors called to schedule another liver biopsy to check for rejection again and then decided to up her immunosuppression meds and wait a couple days and check to see if that could get it under control without the biopsy. It did lower her liver function numbers but her Alkaline Phosphate was more than the test can even detect, >4555. So no liver biopsy or time in the hospital, thank god! The only frustrating thing is that no one seems to know what may be causing the high Alkaline Phosphate. For now we are not too concerned and we are going to just watch it. Yesterday’s labs were back to almost normal but Alkaline Phosphate was up and she was dehydrated. So lots of fluids today and no labs next week unless something changes. She did have a rough day today and I can see a white point under the gum where her incisors are trying to come in…. dang teeth. Just praying her Alk Phos goes down.
It is obvious that you guys continue to pray for Ryman, because even though numbers have been a little wonky, she is still doing great. Thank you so much! God has been so good to our family!
Pictures from the beach and random fun times (including a trip to the zoo).