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

An Update on Ffion

Hi everyone,

 

I have decided to add an update to Ffion's blog (courtesy (with much thanks) of Kenny's cousin Adele). I guess some of you may have been wondering how she's been getting on.

 

We waited for a long couple of months for an appointment to see a general paediatrician, which was sparked by my noticing that she was very delayed in supporting her head and couldn't turn it fully to the left. In the meanwhile, her general development continued to progress, just very slowly. She's 7 months now, and can't roll over yet. She has just started to take an interest in toys, but not holding them. She does, however, have a beautiful smile and is more and more willing to share it. 

 

It was easy to say she'd had a difficult start, but as time went on, I wondered if there was something more.

 

Our appointment was on Thursday and was very encouraging. She was diagnosed with probable thoracic scoliosis which is a curvature of the spine towards the top. We've been referred to an orthopaedic surgeon and this referral should happen pretty quickly as her neck and back muscles are beginning to compensate for the spinal problem. She will need x-rays of the area, but we are probably looking at surgery.

 

She was also diagnosed with developmental delay, which was good in a way, because it puts my mind at rest that I wasn't being paranoid! It also means that she gets referred to physio to help her get moving, and speech and language therapy to encourage her to make more noises and to also help with her feeding (we are very much stuck in puree-land and she can still be vomity and retchy). We have a referral to an opthalmologist too, just to check her eyes aren't holding her back. The community paediatrician will continue to keep an overall eye on her.

 

I think the idea is that they throw all these therapies at her in the hope she catches up, and reassess the situation if she hasn't by the time she is 2.

 

Kenny has applied to go down to 2 days a week when I go back to work (3 days) in April, otherwise I don't think we will manage all of these appointments. However, with all the changes that are happening in his department, they are being very slow in deciding. We are also about to move house, closer to Cardiff, which will cut down on everybody's travelling time. Everything has been done, we're just waiting for a date now. Fraser continues to be a happy and sociable chap and is trying to get his head round the concept of a new house. We keep pointing it out it him, but I don't think he really understands what it will mean for him!

 

I will try and find a recent photo of Ffion to put on here, so you can all see what she looks like now. I will update again when we have any significant news. Thank you for your kind thoughts and prayers for us all.

 

Sally x

Fun Run Success (of sorts!)

I am very pleased to report that the Harrisons completed the Kidney Wales 2k fun run in a time of approx 35mins, and, yes, we came last!! We had a fantastic morning though. Fraser ran the last half of the race very, very slowly! The paramedic on the motorbike had to ride in front of him as an incentive! The finish line was the same as the start line so we were about to get run over by the 10k runners who were about to start their race. Max Boyce was starting them off and gave Fraser a special congratulations as he came over the line (woohoo). We were so slow that we had to wait for them to find the medals cos they'd packed them away!!

One big surprise was that we got to go on an open-topped bus at the start line which Kidney Wales had put on for the kidney patients and their families to watch the 10k runners as they started. We got drinks and snacks, and it was really good to meet other parents and kids as well as some of the staff we knew from the hospital. One boy had just won a gold and silver at the transplant games in Gothenburg.

Medically wise, Ffion's creatinine seems to have levelled off at 82-83ish (normal being 30-60). She has a scan next month to determine more accurately the percentage of normal kidney function she has. That should then give the doctors a better idea of prognosis.

I've included some pictures from yesterday for you to laugh at!

Sally x

 

Victorious Blog Post!

Ffion has been discharged today :-))) 

 

Thank you God! 

 

We are extremely happy to have her home for good and will be breaking open the champagne tonight!

 

She still has her feeding tube in for backup but has almost all her feeds by bottle now. She has learnt how to pull her tube out so I am having to tape it down really well as we have to go back to the hospital to have it put back in. I had another go at it this morning, but didn't get it done. Went too high this time and tried to poke it up into her brain!! Not surprised she screamed!

 

She is on 3 different medicines - sodium bicarbonate, trimethroprim and iron. I am making use of her tube to put these down at the moment as she has a tendency to spit them out! Her last creatinine reading was 96 so (hooray!) it has dropped below 100. 100 is a benchmark number according to the consultant as babies with a creatinine level of 100 or lower feed much better and also rarely need dialysis/transplant before the age of 10 which is brilliant :-)

 

We have a follow up appointment on Friday and the health visitor is coming frequently to weigh her. Putting on weight is the main concern for her now as it is more difficult for renal babies. 

 

I will continue to update the blog but less frequently now, so it gives me a good opportunity to say thank you to all of you who have been following Ffion's progress and thinking and/or praying for us. We are extremely grateful and want you to remember the door is always open in our house to come for a cuppa! 

 

I also need to say a big thank you to Adele, Kenny's cousin, who has been maintaining the blog for us - it has been a brilliant way of keeping in touch with everyone - thank you for all your hard work x

 

Bring on the sleepless nights!!

 

Sally x

An Interesting Day.....

Today has been an interesting day at the hospital. Bizarrely enough it started yesterday. I seem to have been given lots of additional hoops to jump through before Ffion can be discharged. Yesterday they asked me to stay overnight so they could check I could cope with night feeding (umm...hello...done this before!) but I obediently went home and got an overnight bag, set my alarm for every 3 hours and Ffion got fed. This morning I had to be watched to check I could use a syringe to draw up the right amount of medicine for her. (Beginning to feel they don't want to let her go!) It's all a bit frustrating really.

 

Anyway, she had her ultrasound this morning and the size of the kidney pelvis has reduced from 25 to 18mm which is good. Creatinine down to 96. Her antibiotics have finished, (other than the one she has to have every day) and they want to observe her for 24hours after, so, as long as she stays well, we are going home tomorrow morning :-)) 

 

Trying not to get too excited - watch this space...

A Short Update From Kenny!

Ffion is feeding well again after Friday's operation. Her post-op ultrasound scan is due today so we will update again once we have the results of that.

Friday Night Update from Sally

Ffion had her small operation this morning to remove the stent that was supporting her ureter while it heals. Everything went ok and she was back on the ward by mid morning.

 

She fed straight away but didn't keep it down so she's going gently with the feeding for now. Her feeding tube is back in and will probably stay in again for a while as feeding's been a bit hit and miss without it to fall back on. 

 

She's going to stay on antibiotics for 48hrs, then her bacterial culture test, blood tests and ultrasound will all be done on Monday. If all these are ok, she can go home at some point after that. 

 

We are already being sent outpatients appointments through the post, so it is clear they don't want to keep her much longer :-)) Here's hoping...

 

Sally x