Lift Up Your Hearts!

Here's an update on Grace's situation after the meeting with all the doctors, to clarify everything about the neurofibroma in her ear, and the next steps to take.

Ha! Just kidding.

The great news is that Grace is still a bright, happy, joyful, competent, and apparently healthy three-year-old.

But the appointment was, shall we say, less than stellar. Here's Heather's report, taken from their website:

This is my memory's summary of Jon's report to me: A lot of time for not a lot of progress. Education/information, but no decisions. The ENT was not experienced, so they want her to see the adult ENT because that person knows more. They also want to do a CT scan before deciding on treatment plans. They think from the MRI that it is a very small fibroma, but they want to check. Turns out the medicine for reducing the fibromas has terrible side effects and you have to take it for the rest of your life. So we want to delay that as much as we can, hopefully avoid it forever. They want to know if it is affecting how her bones are growing. If not, they will probably do nothing. If so, Jon is wondering if surgery is better, because it's so near the surface and so small. But he didn't understand why she didn't get the CT scan today [as scheduled], because it's just delaying treatment decisions. I say it's to give our prayers more time to work to just reduce it without medical intervention. Her hearing loss was less than in November. The audiologist wants to give her a hearing aid, which might be fine. Her eardrum is funny-shaped. 

When I asked about the hearing aid, Heather explaind, "The thing about the hearing aid was for balance I think, and the audio "depth perception," and for keeping those brain pathways from dying off. But it did not appear to be very bad. It would be like getting weak prescription glasses.

So, prayers for wisdom, please, for all concerned, and especially that the neurofibroma will continue to shrink, and disappear altogether. Thank you all for hanging in there with Grace and her family.