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Powered by LifeTypeGrace had several appointments at Dartmouth today: audiology, ENT, oncology/nf1, lab draw
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, 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.
Here are a couple of pictures from our extended family vacation to Washington, D.C.
At the National Children's Museum - flying like Noah!
Smithsonian American History Museum - future president of the United States??? She sure thought this speech-on-camera simulator was fun!
Prayers continue for you and your family.
Glad you had a good vacation!!
Grace is always in our prayers.
Susan and Alan
She looks like she's having a great time!
Continuing to pray.
Praying for Grace and for you to have the patience you need to navigate through all the tests, the almost tests, and making decisions on all the results.
God knew he could trust your family with all of this and to show others what strength in the Lord looks like.....holding all of you in prayer
Will continue praying.