Aria’s DNA has been overseas being testing to find the spelling mistake that cause her condition.  Our hope was that they would find the spelling mistake and that it would prove not to have come from Hamish and I. Today we found out that it is very unlikely that her condition has come from us. (more…)
Not much to report on the medical side of things this week. Aria did have some of her hardware (as our nurse calls it) changed this week. Not a major, just the little plastic bit that help drains her tummy. It didn’t work so well so we changed back.
 I thought I would take the opportunity to update you on Aria’s physical development. Obviously with babies there are all these timelines as to when they should sit up, roll, talk, get teeth, speak, go to school, graduate, leave home etc etc.Â
Anyway Miss Aria has been thru a lot in her 7 months of life. (more…)
In about a months time Aria’s kidneys will be scanned again. This is a big deal. The outcome of the scan will hopefully give us the information we need to decide the timing of transplant. If they are in a good state i.e have grown since the last scan and are an ok size then transplant can be put off longer. If not then we will be heading overseas sooner rather than later.
Obviously our choice is to leave transplant for as long as possible to allow her time to grow and get stronger. Aria’s liver is great and she is on her first line which means she could possibility survive awhile on TPN. But on the other hand if her kidneys are in a bad state we would need to do the transplant soon.Â
So we wait and pray and hope as always. Her liver is a miracle in our books, will the kidneys be too!? I’ll keep you posted.
Thanks for your support, please say hi via comments or contact form 🙂 Would love to hear from you.
…seven months old today!! We can’t believe it 🙂 Only 5 months and she will be one and what a celebration that will be.
Happy new year!
