I spoke with Dr. Escolar this morning and received the results of Tori’s August MRI.
Dr. Escolar said that the volume of her brain has shrunk further and there is more atrophy of her cortex.
There is dried blood in the membrane around the brain (subdural hydroma) that should reabsorb on its own.
Her spinal nerves have not changed though they are somewhat swollen – which is normal for Krabbe babies.
No change in the brain stem or the optic nerve.
She has mild hip dysplasia and is at risk for subluxation. This will be helped by her stander.
Her bone density is slightly lower. This will also be helped by her stander and by giving her vitamin D and calcium supplements.
Overall her peripheral nerves are functioning at about 50%, which correlates with the spinal nerve findings.
Bottom line: the disease in the brain is more acute than her peripheral nerves.
So, overall it is a mix of good and not as good news. The good news is that she is still doing relatively well and the brain stem is normal (the stem controls so much).
The not so good news is that she still has a severe form of Krabbe. But, despite that fact, she is still doing so well!
While we didn’t get the miracle we prayed for, we still praise the Lord that He is protecting her from added pain and that she is content.
We had a great time yesterday going to the National Aquarium in Baltimore with Brennan’s family! This was the first time that his mom, siblings, significant others, and children had done anything together – hopefully this becomes a frequent tradition. :)
Though many of the exhibits were difficult for Tori to see (either because you had to look down at them or because the aquarium was rather dark in general), she was very alert and attentive throughout our visit and we did our best to find things she would enjoy seeing.
Her favorite thing was the wall in the cafeteria that changed colors – she was fascinated!
Thank you, Probst Family, for making this adventure possible for our family! <3
Here are a few of our pictures from the day: