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Powered by LifeType23 years ago, we started this blog to have a good way to keep everyone informed of how things were going. In some ways, it really does feel like a lifetime ago. However, Isaac is still close in our hearts. His life and death are a part of our family and influence our relationships to each other and to God.
The thing that is blowing my mind today is that Isaac would now be the age that I was when he was born.
We have only read the test results ourselves and have not heard from any doctors yet.
Her TSH is uncomparable, since the tests they do at Dartmouth don't go any higher than ">100" so is it 400 again, or 101 or 1000? But her T4 was up, almost to the normal range. So hopefully that means her thyroid medicine is starting to work. Jon read something about hypothyroid diseases being passed to people through bone marrow donations. But Faith's TSH was normal just before transplant. Faith hasn't had that tested since November 2023. Jon has in inquiry in to the doctors at Boston Children's about that.
Grace's heart is perfect.
I think her MRI showed that her ear fibroma is about the same. But they reported that some results were not clear because she moved. Jon had been interested to note that she didn't fall asleep this time. Despite getting up very early and not even falling asleep in the car on the way up. (She told me, "It was dark, and then it was morning!") But the MRI report also says to further investigate a possible thing near or on her eye nerve. Please pray for us to not worry and for that to be nothing.
Her kidney numbers were good. Her iron and related numbers were on the low side.
Grace is getting an MRI, and ECG, and bloodwork (including thyroid) tomorrow morning at Dartmouth. I'm not sure how much the thyroid medicine is working, so we'll see what the numbers say. Her skin is very dry and she has rashes in places, and also the dryness is itchy so she scratches it, sometimes to bleeding.
Today is day +641! What a big number, and we are thankful. We're coming up on two years since diagnosis and oh, how far she's come!
Grace turned four last month!
Making her own birthday brownies:
She can make fun shapes in her fruit: smiley oranges and bunny apples:
She went ice skating for the first time:
