Little Miss Magic hit the "Magic" Number Today

We had a clinic visit today. 

Same old, same old. 

Waiting for bloodwork 

Then an elevator ride to the second floor to visit Dr. Jensen. 

With today's bloodwork, Dru's PELD score went up another point to 25. Dr. Jensen called it the "magic number". 

If I understood correctly, that means now that she has reached 25, things like the way she receives her nutrition and her weight will start to play more of a factor in her scoring. 

Speaking of her nutrition...

She has gained weight but it's all liver :(. 

Her belly is huge, but her little bum and her arms are losing fat. And her muscle measurements are only in the 10th percentile. 

We have a new recipe for her formula, but she will probably be put on IV feedings (TPN) in the next month or so. That means a central line will be placed in her arm and she will receive her nutrition that way. We will do whatever it takes to make sure she is as big and strong as possible in preparation for transplant, even though it's one more new thing that scares the hell out of me. 

A couple of perks that come with the central line are that she will no longer need the NG tube so no more tape on her face, and they can draw blood from the IV instead of poking her every 2 weeks. 

Also today, because her belly is so swollen, her doc thought she might be holding a lot of fluid in her abdomen. We had an ultrasound today and there is no fluid, so no need to tap her belly like we thought.  I was hoping to relieve some pressure for her but I'm glad there's no need for more time at the hospital right now. 

I'm so grateful that this girl is ours and we have the blessing of standing by her in this fight. She's a trooper and puts up with every poke and test that's needed

I absolutely cannot wait to see the change in her when she feels 100%.