Yesterday was supposed to be Holly’s 44th infusion, but she has been very unwell since her surgery at the start of December, so it was decided she wasn’t well enough to go ahead. This is the first infusion she has ever missed. Even though missing one won’t change her overall treatment, it still feels really upsetting. But it was absolutely the right choice for her little body.
We now know that Holly’s swabs came back positive for Flu A, which explains why she has been so poorly all through December.
Unfortunately, her seizures are starting to come back to the levels they were before surgery. We were told there might be a short “honeymoon” period after the operation, and it’s safe to say that is now over. By 9:30 this morning, she had already had 32 seizures.
Yesterday, she had a tonic spasm that turned into a tonic-clonic seizure and then into a focal seizure, lasting about 8 minutes. Thankfully, she only needed oxygen, and we didn’t have to call an ambulance. We are hoping today will be easier, but so far it doesn’t look very promising.
We are really hoping next year is kinder to Holly. The last six months have been incredibly hard for her and for us.