2007 March - Aria MacDonald

Hi all, just thought I would let you all know that Aria had an ultrasound today and it ruled out Aria’s recent dramas being caused by a perforated bowel.

We are very grateful for this because we really didn’t want her to go through another surgery.

However we still don’t have an answer for her troubles except a suspected line infection. Observation and testing will continue til such a time as a diagnosis is reached or Aria returns to her normal happy self.

Thanks for your continued prayer and support.

Thought I would let everyone know that things are still up in the air with Aria.

They are still looking for what is causing her ongoing symptoms. They are still suspecting it to be a line infection but because her tummy is a little swollen and her temperature is hanging around they are doing a few tests to rule out a bowel perforation. We really hope that it is not a perforation because that would mean another surgery.

Well we will keep you all up to date with any new developments, thanks for your support.

Aria was admitted to Starship on Thursday morning.  She has a temperature and increased fluid loss out of her gastrostomy.  The docs aren’t really sure what the problem is at this stage.  They are treating it as a line infection and she is on antibotics.  You have to wait 48 hours for the blood taken out of her line to show up the bugs.  We should know if there are bugs in her blood stream by Saturday arvo.  We are hoping it is not a line infection but at any rate we will be there for 7 – 10 days 🙁

We will post updates there over the time we are in.  Aria is doing well all things considered.  She is happy and smiling but hot and sometimes grizzly because of the various poking and proding.  One of her hands was out of order because she had an IV line in it.  This made her new found clapping skill a bit difficult so she made for it by learning to clap with her feet.  Quite cute.

Saturday Update

Hey there, not to much to report today from the hospital in terms of answers.

Aria’s is still having temperatures and her outputs are still up. They have been trying to grow bugs taken from samples of her blood and gastric juices, so far nothing has grown which is both a good thing because there isn’t any bugs but it also not so good because they still don’t know what is going on with her.

One good thing is that she has both her hands back, so now she can clap her hands and her legs.

Aria is so brave and resilient. I think that we as parents find the hospital experience more draining and trying than Aria does.

We’ll keep you posted.

Aria turned 9 months old on the weekend! Very exciting for us and only 3 months until she is one – wow. It is amazing how far she has come and it is encouraging to see her progress.

The 3rd of April is date we will find out the results of Aria’s kidney scan. Our doctor and specialist nurse are going to Mexico for a paediatric transplant conference. They will be speaking to people there regarding the best way forward for Aria in regards to transplant timing. They will hopefully have feedback for us on the 3rd too.  We suspect we will be off to transplant in 12-18months. So it is going to be a big day!

 We also got the results of Hamish and my DNA profiling.  They confirmed that Aria’s condition was definately not inherited from us which means a less than 1% risk any future child will have total HD.  So that is pleasing although a little sad because it still means any children Aria might have will have a 50% risk of inheriting the disease from her.

 We are having a great response from people and companies in terms of fundraising.  Thank you so much to those who have offered to support us and made donations.  We have a huge sum to raise so all support is gratefully received!!