Tiāri continues to improve and is not far off being 100% back to her happy self. After her self-removal of her tube and losing some weight, she has finally made some weight gains. She has been attending regular neurology appointments, and we are optimistic that she is close to being fully discharged. Hopefully our next update will be confirming that outcome!
Tiāri has been going from strength to strength over the past week and showing steady improvement. There has been some uncertainty with her diagnosis of infant botulism as her recovery has been faster than expected, however we are simply grateful for her continued improvement. Due to her progress, Karen and Jack were able to take Tiāri home where she can continue to get better in the comfort of her own home. Although she had a nasogastric tube, she decided to take matters into her own hands and removed it herself overnight. At this stage, the doctors are satisfied with her eating for the tube to remain out and will continue to monitor her weight. Tiāri will continue with her physiotherapy to build her strength and have regular check-ups with her doctor.
Tiāri's progress has being going well over the past week, so well in fact that she was able to be transferred from Starship to Christchurch Hospital where the paediatrics team are taking good care of her. She is now off all her medications and the team continue to monitor her daily. Tiāri has physiotherapy to help build back her strength in her body and specialists to help her make progress eating and vocalising. Karen and Jack are sharing the load and taking turns staying overnight with their baby girl. Tiāri is enjoying all the hospital toys she gets to play with now!
Tiāri is progressing slowly and has been moved from PICU to the Neurology ward at Starship. She can open her eyes fully, recognises her whānau, and says some words. She also moves her wee arms and legs and is slowly regaining strength in her neck and body. Tiāri is off the BiPAP and all her lines have been removed apart from her feeding tube where she also receives her meds. They are slowly weaning her off the morphine. Her whānau are seeing wee improvements every day!
Great news! Much love to you all. Thinking of you all every day. Xxx
After two and a half weeks, Tiāri has become strong enough for the ventilator to be removed and she was placed on a BiPAP to help her breathe. She has also now woken up, can open her eyes, reacts to voices, and has worked her way up to holding a toy. Tiāri still requires a high level of medical care to help make her better and is having additional tests to ensure she is getting the right treatments. Another big week for Tiāri but baby steps of progress are being made!
E kore e mutu te mihi ki a koutou katoa i ō koutou whakaaro, aroha, koha hoki i te wā nei. Endless thanks to everyone for your thoughts, love and donations at this time.
Great news that Tiāri is showing some progress. Sending you all so much love. Please let us know if there are other ways we can be of any help. Aroha nui xxx
Thanks Jess. Will do!
