A message from Sharon, Alexi's Mum:
Thanks you to our amazing friends, family and all the generous people who have supported this page, we went to the snow ❄️. This is one of the things Alexi has been asking to do for years but we have always put it off due to the colder weather affecting her health. We made it before all the snow had melted and it was amazing! The kids had a blast and we even got to build a snowman and snowcat! A couple of other activity’s we had around Taupo was mini golf, another favourite of Alexi’s, and wow the Huka falls are just breath taking. We also went to see the Waitomo caves, I can’t believe the kids actually stayed quiet 🤫 thank you all again for your generosity we are truly thankful
An update on Alexi's health:
The doctors are not wanting to do the procedure just yet. They have consulted with specialists in the UK and USA to gather information to ensure we are all heading in the right direction and that we have thought of everything before going down the invasive route of the balloon atrial septostomy. This would be the last option before considering a lung transplant. The UK doctors have recommended pushing the dose of medication that she receives through the Hickman line higher. Originally when the pump first went on, we increased weekly and her heart showed stress so we slowed down to fortnightly, now they doing it every second day.
Alexi is attending school with Sharon there to support her for a very limited time a few days a week.
The generosity and concern shown for the family is deeply appreciated.
