Aida's Latest

The doctors in Cincy believe Aida has what are called congenital hemangiomas which are pretty rare. Even more rare is multiple congenital hemangiomas. For babies that do have these types of lesions, they are frequently in the liver (if inside) but almost never in the brain. There are 2 types of congenital hemangiomas - ones that "go away" rapidly (in about a year) and ones that never go away. She has indicators for both, but we're told she shows more signs of those that do go away.That said, almost nothing about her case fits a textbook description, so it is impossible to know right now. These lesions are typically fully grown at birth and often even beginning their decline in utero. Aida's are growing. We can only wait it out to see if they begin to shrink on their own which could take months.

In the mean time, she can't wait to be treated. She is having to have infusions nearly every day which is a little out of control. There is always risk of spontaneous bleeding - which on the brain could be "devastating," and the larger these lesions become, the more of her blood products they trap. So for now, she has been started on the chemo drug that had been discussed before, but no one knows if it will work as there are currently no proven treatments for congenital hemangiomas. (The beta blocker dose has also been doubled.). We'll be going to the clinic at Vandy for labs and infusions 3+ times a week to keep it all in check. In 2 weeks, she will have a follow up ultrasound to monitor growth of the lesions on her brain and liver.

The lesion on the liver is pretty massive. It covers half her liver already. If the medicines don't work to improve the situation (or it doesn't show signs of resolving on its own), they will do surgery to remove half of her liver. The "good" news is that the liver regenerates, so there'd be no long term effects from that. Unfortunately, surgery for Aida is very risky, so obviously we'd rather not go down that road. The small biopsies of lesions outside her body were a big enough ordeal already. For now, her liver function is still good, and removing just a portion is an option. The window for that solution, however, is limited. If it progresses much further on the liver, we'd be talking transplant instead which nobody wants. So! We are praying that the meds prove effective quickly...or better yet that God would just heal her altogether!!! Assuming nothing happens before, we'll return to Cincy in a month for a (sedated) MRI so they will have the info they need if they end up doing surgery.

On a few positive notes, they were able to give her an antibiotic that is administered monthly (at the hospital) that won't bother her stomach. That is a big relief! She's continuing to gain weight well, though it's not a huge surprise since she's on steroids. :). 10 lbs 14oz today! Mark said he's gonna start carrying her in a backpack. :) Also, as they continue to address what can be pretty severe anemia, Aida feels much better most days which helps us feel a little more normal.

Thank you all for continued prayers and support. It is appreciated more than you know!