Baby Chrissa who suffered adverse reaction to anaesthetic back at home but living day to day

Mother Stephanie Allen said Chrissa has been sleeping a lot better since she got home.

A baby who suffered an extreme reaction to anaesthetic is now at home and her family are hopeful "she will be with us for a long time yet".

Chrissa suffered irreparable brain damage and lost her sight following an extremely rare reaction to an anaesthetic.

The Christchurch baby was given the anaesthetic on September 29 so doctors could insert a breathing tube through her mouth because she had vomited into her lungs.

Her temperature shot up to 40 or 41C, her blood pressure rocketed, and an aircraft from Auckland's Starship Children's Hospital flew down to pick her up that night.

Doctors believe that Chrissa has a rare genetic condition called malignant hyperthermia, but there had been no previous indication of it because neither parent was aware of the condition in their families.

Mother Stephanie Allan said Chrissa had made good progress since coming home.

Mother Stephanie Allen said Chrissa has been sleeping a lot better since she got home.

"We still don't know how much she can see, we know she can hear, she can kick, and move her arms a little.

"As a mum I am delighted my beautiful little girl is still with us and doing so well. She is so strong and brave, I want to believe that she will be with us for a long time yet.

"She makes noises, and want to believe she is communicating with us," Allen said.

"We don't have a long-term outlook, we are living day to day with her. No one knows how long she's got, its a matter of making the most of it.

"We've got palliative care involved now to keep her comfy and make sure she's not in pain."

Allen described the last few months as an "absolute rollercoaster".

"The toughest moment was not knowing if she was going to be able to breathe on her own after getting that tube taken out."

Allen said it was a huge relief was when Chrissa breathed on her own in those few seconds after the tube was removed.

"We were so happy, the fact that she was still with us and she's still with us now - everyday she's just getting bigger and stronger," she said.

"Every weigh-in she's still gaining, she's gaining steadily, but I think she's still definitely under the threshold."