Progress Report.....

Hi everyone! 

 

We have decided to start up Ffion's blog again as so many people ask us how she's doing all the time and it's difficult to remember what we have told you! I'll start with a quick catch up of the past year so you know where we're up to. Sorry it's so long, I promise to keep it brief in future!

Feeding:

Back at the end of 2012 Ffion was pretty ill. We were in and out of hospital a lot as she was constantly being sick. She got dehydrated very quickly which didn't help her kidney function. Eventually the only thing she could tolerate was being fed slowly and continuously via a pump. She was put on the waiting list for fundoplication which is an operation to permanently alter the top of the stomach to prevent her being able to vomit anymore. 

 

The op was carried out in April 2013 along with her gastrostomy (feeding tube directly into the stomach) and our lives became so much easier!! No more sick bowls, grotty tea towels and changes of clothing everywhere we went :-))) The change in Ffion was amazing too. She put on weight, looked much happier and her development started to progress.

Genetics:

During one of our stays in hospital in 2012, Ffion had her chromosomes tested and was found to have a muddled 10p chromosome. Some genes were missing, others duplicated. It explained a lot of things as some of these were the genes responsible for forming the kidneys. Given that there are so many genes on a chromosome, her individual genetic makeup is virtually unique which makes it extremely difficult for the doctors to predict what will happen to her. We have come to appreciate that we just have to go along with it!!

 

Kenny and I had our chromosomes tested too to see if we carried any similar genetic makeup, but we were fine. Her condition isn't hereditary, just one of those things that happened.

 

 

Development:

Those of you who saw Ffion over the summer will have seen that she was nearly crawling. Well, she's still nearly crawling!! Hasn't quite got there yet. Her standing is much better and, although she still needs support, she is much less wobbly. She is starting to grab at things now, which is great for Fraser as he's starting to get his toys nicked!! No sign of her talking yet, although she's making plenty of sounds.

 

She's going to start at the village playgroup after Christmas with extra support. They are having an outreach teacher from one of the special schools come out to help them with her too. I think it's all part of them deciding where she would best fit in terms of schooling.

And now to the biggy...

 

Renal:

Ffion's renal function has been closely monitored since birth and unfortunately has been gradually deteriorating. It is very up and down so difficult to predict but quite clearly heading in one direction. She is not in 'end-stage' renal failure yet but she will end up there in the not-too-distant future so we are beginning planning for it.

 

This leaves us with two options - for her to have a transplant or to choose a palliative care route and accept the inevitable. As you can imagine, for us there was only one option. Even that, however is not the perfect solution it might sound.

 

A 'living donation' is the transplant option with the best outcome, so myself and Kenny are meeting with the transplant coordinator in the next few weeks to begin the process of testing to see if we are suitable kidney donors. The process is rigorous and if there is any hint of it being detrimental to either of our health in the future we will be ruled out.

 

I think the next option would be for her to go onto the transplant waiting list.

 

We understand that dialysis is only carried out as a treatment option if there is hope of a transplant so she can have dialysis while waiting if necessary but it wouldn't be a longterm option on it's own.

 

Transplant carries its own risks - rejection of the kidney which puts us back to the start again, reduced ability to fight infection due to the immunosuppressant drugs and issues from the side effects these drugs may produce.

 

We have been told we might get 10 years out of a transplanted kidney, at which point we are back to square 1 again. So it would be great if both myself and Kenny were suitable donors as it would give her another chance in the future.

As you can see we are embarking on another rocky road. However, while we still have decisions we can make to help her carry on enjoying life, we will be making them!  Who wouldn't!!

 

Many thanks to you all again for your love and support. It means a great deal to us. Love to you all. 

Sally