Progress

I thought I'd add a cute pic of the kids - they have been so good this week, even with me being a cranky pants!!

Well this has been an interesting week. We saw the pediatrician on Monday, then the community nurse on Wednesday, by Thursday Harrison had developed a cold.
So he is ok, but has a runny nose and a cough. I called Westmead Childrens and spoke to Sam, (Dr Sam Mehr ) and they are happy to watch Harrison, but any development at all and I call back down to them and discuss.

As I said in the last blog Harrison now has a 10% count of Female cells which should mean he has something there that may fight off this virus he has. He already has Bactrim antibiotic which he takes daily to ward off any chest infections. So we will see how things go with this.

I also changed Harrison's central line dressing. I did it last week too - while it did the job it looked all wrinkly. This week- it looks so much better, I felt like a real pro!!!

Here's a pic of that too...

We also got told about some of the enzyme tests coming back from the USA that were done in line with the genetic testing they are doing for us too. This enzyme count confirmed what we already thought. Scott & I carry the rotten ADA gene!! Ella is a carrier (and so given Sterling's low counts of ADA enzyme he would be too) - but Marlie is not - her count is 1.6 aka perfectly normal and Harrison is ADA deficient.
They also tested the toxicity levels of Harrison, which is an indicator of sorts for how badly affected these kids are. Harrison's toxic count was quite high, and as much of the literature I have read indicates- it is these kids that then go on to have the neurological problems. So we knew this already with the eye problems and hearing loss, but this is a bit more of a complication - we will now have to wait and see exactly what Harrison has in stall for us!!

The cold will certainly give us a clue if things are moving though, as we hope he'll be able to fight it off. ( and we hope that its not some bacterial infection just starting!! )

Anyway that's about it this week. That and I had a chat to John Laws about Harrison praising the hospitals and staff that gave us such incredible care, and the difficulty we find ourselves in without much help from Centrelink. I was very nervous talking to him but I think it helped, and if in the long run it benefits Harrison then I would do it again in a heart beat.

Ciao