Archive | February, 2012

Hospital update

28 Feb

Tilda’s surgery was done last night at about 9:30 and it went well. It was all pretty quick, they have replaced the tube with a larger one and put it all back in the right place.

It looks like we might be able to go home tomorrow. She is still having some iv antibiotics and if the swelling has gone down and she is tolerating her feeds, we should be right. She has had some vomiting but I think it was due to the fact that the poor mite hadn’t eaten since Sunday morning so she just needs to adjust. She isn’t quite as cheery as I would like but happy enough watching her beloved Dora.

Thank you for all the messages of support and visits!


Back In hospital

27 Feb

Well, we are back at the Children’s unfortunately. Tilda’s PEG site started to look a bit wrong and cause her some pain and discomfort when administering meds. I took her to the GP on Friday who thought it may be infected again so we went back on the antibiotics. Then on Sunday at lunchtime, in the middle of our gardening working bee – thank you so much to those there! – I noticed that there was a lump just above where the PEG goes in. Mum and I took her straight to emergency where we were admitted pretty quickly.

The consensus is that the PEG has moved so needs to be repositioned. We are currently waiting to hear when the surgery will be, hopefully tonight but we will most likely be in hospital until the end of the week.

Let this be the end of the PEG dramas please.

Tilda is otherwise well and cheery and once again. Dora is saving the day.

Laughter and smiles

19 Feb

I am so pleased and delighted to report that once again, our house is filled with squeals of laughter and happy smiles. It is an enormous relief to have our cheery Tilda back! Clearly, she is no longer in pain, the nasal tube is no longer annoying her, we have increased her calories so her tummy is nice and full and of course, we are out of hospital which is always a mood enhancer!

She is back to school and all going really well. We only have one tiny issue at the moment. Her sleep has gone to poo. I don’t know what it is but she is waking up through the night, tossing and turning and thrashing about. I have a feeling that her nighttime seizures have increased and are actually waking her and keeping her up. Thankfully we have an appointment with a dr on Tuesday who is somewhat familiar with Batten Disease and may be able to advise us.

But to be honest, I can totally cope with the lack of sleep because I am so over the moon to hear that laugh once again!

We are home!

15 Feb

After rather a lot of faffing about, we are finally home! Tilda was smiling and laughing when I got to the hospital yesterday afternoon which was wonderful – clearly she is feeling a lot better.

I wrote when we came home with the nasal gastric tube that it was like having a newborn again and with the PEG, I am feeling this x1000. The foreignness of the tube, the feeling that I haven’t quite worked out how to hold Matilda so she is comfortable, the fact that I still haven’t worked out what her new noises mean. All of this has been on my mind but after a pretty good sleep last night – and it was wonderful to be able to snuggle up with her again – I have woken up this morning feeling positive and ready to get on with it. I have no idea how this is all going to work, especially when she goes back to school tomorrow. Feeds are now taking an hour and we have to give her an antibiotic 1/2 an hour before she eats. Some early risings ahead! But I am very hopeful that this PEG will be worth all the drama that it has caused.

On an unrelated sidenote, I would like to give a huge shout out to the very lovely people at Skechers (makers of those shoes!). I sent them an email the other day as I wanted them to know how much joy those shoes bring.

I received the following reply

Hi Laura,

Firstly thank you so much for taking the time to share your story with us. What an awful disease for someone so young to have to face. Matilda is absolutely gorgeous and an inspiration. It makes us so happy to hear that her Skechers make her smile, which is why we would love to send her another pair to play in! If you could get back to me with her shoe size and your day time address that would be amazing and we can get some in the mail for her!

Say Hello to Matilda from all of us at Skechers!

Best Wishes,


How wonderful!! Thanks Skechers!!


We’re still in hospital part two

12 Feb

Well unfortunately we are still here and look to be here until Monday or Tuesday. The PEG site is a bit infected, Tilda developed another high fever and so was put on 3 lots of antibiotics. A restless night but I did manage to get a few smiles again this morning.
More blood tests are being done and we will just continue to monitor and hope that there are no more high temps.
Thank you for the kind messages and support.

We’re still in hospital

11 Feb

Well, we are still here. We were going to be sent home last night but Tilda had vomited during the day so I wasn’t feeling confident about taking her home. Which was lucky because she has had two more vomits since and a fever.

It all seems to be ok at the moment. Bloods were taken and have come back fine. Her temperature has gone down but if it goes back up again then we will start some antibiotics.

I got some smiles last night which was nice!


But today has been pretty muted. She has slept a lot. Hopefully things will settle down and we will be able to go home tomorrow.

Surgery done

8 Feb

Just a quick update to let everyone know that the surgery went well. The PEG is in and though Tilda is not particularly happy, it is so nice to see her little face without a tube coming out of her nose! She is in a bit of pain, had some morphine yesterday and panadol throughout the night. Thankfully, Dora is able to bring a smile to her face.


Whilst she was under the anaesthetic the ophthalmologist took the opportunity to have a look at her eyes and the good news is that everything looks normal. One of the key symptoms of Batten disease is vision loss so we are so pleased that hers seems to be holding steady.

I am at work today and Simon is holding down the fort at the hospital. It looks like she may be in until Friday or Saturday.

Thank you all for the good wishes and messages of support.

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