Catching up

We are home! We got home Saturday afternoon, it has been a bit hurly burly since then so haven’t had a chance to update. So far, so good. We did have a small vomit on Saturday evening which we are choosing to ignore. Apart from that, the new feed regime seems to be working pretty well. We have discovered that Tilda prefers to be lying down during the slow evening feed so we have set her up in her room and it is pretty nice hanging out with her there.

She is back at school and enjoying it immensely by all reports. We have a swishy new stroller thanks to the lovely folk from Palliative Care who rescued it from the store room and had it modified especially for Tilda. She can travel in it in the school bus and it will make getting around much more comfortable
for her.

More to report soon including the upcoming Batten Association research meeting in Sydney that I will be attending on the 4th May! I am very much looking forward to it.

A huge thank you once again to our friends and family who support us more than they know. Our recent fundraising efforts raised over $7000 that will go towards helping Batten families like ours and towards vital research.

Much love
Xo

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Hospital update

Still here. And will now be until Saturday. The new GJ tube will not be able to be done until June as her original PEG site needs that three month healing time. So we need to get her a feeding plan for the meantime and it is better to stay in and make sure it really works for her instead of going home and having more vomiting and have to come back in. We are heading to 3 lots of small feeds during the day and 1 continuous feed in the evening, from when she gets home from school to when we go to bed. This is so we can monitor and make sure she doesn’t aspirate. Eventually with the GJ tube, we will be able to do a continuous feed overnight as the risk of aspiration will have been minimised.

It is slightly odd being in hospital with a relatively well child. Certainly it is a good thing that she is chipper. The worst thing is the boredom. I have my work computer and have been able to do some work. I have also had lots of lovely visitors. Thank you for the food and wine!!

Easter in the hospital

Yes, unfortunately we are back in the hospital and have been since Saturday night. Tilda’s vomiting got to a point where she was getting dehydrated and we were very concerned. She had a full 12 hours on gastrolyte and then started back on her feed yesterday afternoon. After more vomiting at 4am this morning, we will be here until tomorrow at least while we work out a feeding plan that is going to work for her.

There are a couple of theories as to why this all happening, reflux, her recent cough but the current consensus is that her stomach is just really slow at moving things through and she is throwing up when she is full to the brim. She only managed to have 600ml over 14 hours yesterday before she threw up so clearly there is an issue. We are now at 30ml an hour for the next 24 hours and when all the drs and dieticians are back on board tomorrow, we will have a big discussion as to the plan ahead.
I think we are moving closer to a gj tube which, if we are able to do some feeding overnight, might not be so bad.

She is otherwise cheery and well which is good news.

Thought I should update with this photo showing just how cheery she is. Feels a bit fraudulent to be in hospital this happy but I am glad of it!

xox

Batten Awareness Day, Tough Mudder and being on the radio

It feels like much has happened and there is much to report on. Firstly, a huge thank you to Alison Caldwell for her wonderful report on Batten Disease and Matilda. It aired today and left us all feeling fairly weepy but so pleased with her take on us and the issues surrounding rare diseases. If you missed it, you can now listen to it online or read the transcript.

Matilda’s Story on The World Today. 

Of course, this weekend was also the weekend of TOUGH MUDDER!!! And I am pleased to report that Simon came home in one piece, albeit a bit sore! He is completely fired up for next year and has some crazy idea that I might do it too, but I am not sure that is ever going to happen!

I am very proud of all them and so thankful to everyone who donated via the Everyday Hero Page. We raised way more than my initial target – I kept having to up it! Thank you so much.

And thank you so much to everyone who came to our BBQ yesterday and bought Team Tilda and Batten Association merchandise. I looked around at one point and saw 25 people in the same shirt, it looked absolutely fantastic.

A huge shout out to Tim for designing and organising the shirts and the tea towels. They were a hit! We do have a few left over if anyone was interested.

Tea Towels – $12.50

Tshirts – $27.50

 

It was a truly lovely day, surrounded by friends and family. We felt very loved and very supported and raised a whopping $1685 which will go directly to the Batten Disease Support and Research Association.

Health Update

Today, we had an appointment with Tilda’s gastroenterologist. Although Tilda hasn’t actually thrown up since last Sunday, she still has a lot of coughing and gagging during and after her feeds. The gastroenterologist believes that it may be that her stomach is delaying emptying or that she is having reflux. The fixes for which are either a Nissen fundoplication or changing her tube to a gastrojejunostomy tube. Neither option appeals to me really, I must say. We are having a barium swallow study done as soon as possible to ascertain exactly what is going on when she is eating and decide then what the next steps might be. It is frustrating that there always seems to be something to worry about.

Thankfully it is school holidays and we also have things to look forward to! We will be heading down to Anglesea for the Easter weekend and then have the huge excitement of meeting Dora herself at one of her shows next week! Thank you so much to Di for arranging this. I will definitely be taking footage of Tilda’s reaction! And just to add to the fun, we have The Wiggles next Thursday! An action packed couple of weeks which is good news indeed.