A huge milestone in my life. I've hoped and wished and prayed for "my first infusion day" for so long. I was never certain that I would get it, hopeful yes, but never certain.
Infusion morning was filled up with testing. This time it included a skin biopsy and an MRI. I went to sleep during the MRI! After lunch the enzyme was mixed and ready to go. It was 250mls that took around 2 and a half hours to administer. Apart from the needle insertion the rest is painless. Blood tests were taken often during the infusion and for the 24 hour period following the end of the infusion then I was allowed "home".
One of the wonderful things about being here in Florida is that people know what to do with Pompe peeps! There is a bunch of us here in various stages of the disease, most of us taking part in various studies which hopefully will culminate in a cure one day :) We can hope right?
It's really amazing to finally meet the people I have been talking with on the internet for so long. It feels like I know them already before I even meet them. They're all wonderful strong people and have a great sense of humour. I guess you have to when dealing with this type of thing, otherwise you could sink very quickly.
Interesting fact: Masterton (where I live) has a population of around 20,000 people. The amount of students at the University of Florida, 50,000!
The other night after our story aired on TV in New Zealand, we had many donations to help with costs while I am away. And, amazingly, someone has offered to pay for Steve and the boys to come to Florida for the holidays, flights and accommodation paid for. The person wants to remain anonymous. I cannot even begin to thank people for the amount of support and generosity. "Thank you" just never seems enough. I promise though to "pay it forward".