Rose Update

So, I got a call back from the nurse.  Most of Rose's tests came back normal (Lipase, Thyroid, CBC, Electrolytes, regular Iron, a couple others), but a couple did not.  Her Liver Function tests showed elevated ALT and AST.  Normal levels are 3-45 and 23-65, respectively; Rose's levels were 165 and 135.  Also, her Ferritin level (stored Iron, different from the other iron level... I'm still researching that one...) was elevated to 487, 62-250 is normal.  Because of these results, we were referred to the GI clinic at Children's to get some more answers. 

We had her appointment at the Children's on Friday.  Following that visit, no definitive answers yet. The GI doc doesn't seem to think it's hemochromatosis (something Rose's pediatrician thought it might be), but he does think there is definitely something going on. He reassured us, however, that though her levels were high for iron and liver enzymes, they weren't through the roof, so it's not as bad as we might have anticipated. But like I said, no answers yet. He ordered basically every test in the book for the next two weeks to rule things out and hopefully get some more symptoms or results to narrow down what it might be. Here's what he ordered:


> More labs - we got the blood drawn Friday, so that's done.

> Spine xray - done Friday, too. Apparently there is a liver condition that presents with odd-shaped vertebrae, so that's what this was for.

> Cardiologist then possibly an Echocardiogram - Some liver conditions have heart symptoms.  Scheduled for this coming Friday.

> Eye exam - Some liver condition has a weird eye issue where a ring of gold will show around the cornea? Who knows.  Waiting to hear back from the clinic to schedule this...

> Liver ultrasound. Makes the most sense why they would order this one.  Scheduled for Thursday.

So we go back to the GI doc on the 18th for results. A nutrionist talked to us and gave a very specific recipe for fortifying the breast milk with formula to get a specific calorie count, as opposed to just giving her an ounce with each feeding. Otherwise, we're basically just doing what we're doing, and aren't supposed to change anything until we hear otherwise. However, a huge bonus was that she gained 5 ounces since Tuesday, so obviously the supplementing is working! The doctor was optimistic particularly about that, because it means her body can overcome whatever is going on, just needs to have enough calories coming in.
 
We're definitely ready for answers, but in the meantime I really do have the happiest little girl to enjoy!