Home fortnight

Last week at home was heavenly, but exhausting. This week, unexpectedly still at home, is so much better. We are all getting over a bit of a cold, but are sleeping well, and regaining energy.

We thought Isita would start immunotherapy on Monday, but this has been postponed on the grounds that the delay won’t do any harm and the extra week of home life will do a lot of good. It’s true. Home life is so good for her. She’s doing better every day, eating a little and getting stronger.

She went to school a few days at the end of last week and loved it. Now it is half term. Isita and Jamie play and bicker. Sometimes he is jealous and eager to help Marta and me with our medical responsibilities, which are strict but no longer overwhelming, but for the most part he is sweetly protective.

We have to be careful not to drop our guard, and feel very grateful for all the careful training we received at GOSH. Last week’s cold caused a moment of tension as Isita’s temperature crept up to 37.8C before dropping back. At 38C, we have to take her to St Mary’s for intravenous antibiotics, in case there’s an infection in her line. That is what our training is meant to prevent.

On Friday we are all going up to Shropshire for a couple of days, something we haven’t done together since Christmas 2016. Then on Sunday evening it is back to GOSH, and Isita starts immunotherapy on Monday.

4 thoughts on “Home fortnight

  1. So thrilled for you all. Hope you made it to Shropshire. Good luck with next venture of this mighty struggle . πŸ™πŸ§˜β€β™‚οΈπŸ‘³πŸ»β€β™‚οΈ Xxhxx From India!!


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