Archive | August, 2012

Talking, laughing and a new van

30 Aug

This last week or so has been full of change, good change which is good news! And necessary after a couple of weeks of sadness.

I am very happy to report that Tilda’s leg pain seems to have receded. The new medication that she was put on has definitely helped. It has also seemingly had an inexplicable but very welcome side effect of turning Tilda into a complete chatterbox.

She will chat like this pretty much all day. It is absolutely wonderful to hear her voice again. I would love to know what she is actually saying but she is full of good cheer so it is obviously something nice. 😃

I had an appointment with the pediatrician this morning and was delighted to see that although Tilda is only consuming around 400ml of formula a day, she has not lost any weight. Extremely good news.

Some other nice things have happened. The very, very lovely people at RehabHire, John, Sam and Daniel have generously and wonderfully donated Matilda’s hospital bed, mattress and over table. As you may recall, they were amazing in being able to deliver it so promptly and now to ask for no money for it is simply fantastic. This bed has made a such a difference in the day to day ease of looking after Matilda, and our backs, and I cannot thank them enough. THANK YOU!!!!

Yet another very nice thing that has happened has been the procurement of our new wheelchair accessible, back friendly and Tilda friendly, van!! Hooray!! We were able to pick it up on Wednesday and with the help of all our amazing TeamTilda supporters, we will hopefully be able to pay it off over the next few months.

What a difference a van makes!

Getting Tilda out of our old car (getting her in was even more uncomfortable)

And getting her out of the new van (I would like to point out also that this was the very first time I did it, it is even easier now!)

The most wonderful thing of all about the new van is how much Tilda loves it. On the drive home, she did not stop giggling. The lovely David from Fleetworks had filled the back with balloons and Tilda loved every second.

So, a very good week with reminders of just how good things can be, how wonderful people are, and just how lucky we are to have so many surrounding us.

Thank you.



Feeling a bit fed up

19 Aug

I feel very housebound and fed up at the moment. We had been having a dream run with Tilda and her vomiting but unfortunately it has returned. And did so moments before we were due to leave the house for a wedding. Needless to say, we ditched our fancy garb and stayed home. After a bath and a sleep, she is looking a bit better.

I am so sick of this bloody disease. I am sick of watching my daughter in pain. I am sick of not knowing how to help her. I am sick of watching her slip further and further away from my sparkly Tilda. I hate every facet of it.

Three children in the Batten community died this past week. Morgan, from the UK, was just 5 years old and only diagnosed with late infantile Batten last August. Jordy-Rose from New Zealand had the juvenile form and was 20 years old and Lillian from NSW, who passed away yesterday morning was 7 years old and had the late infantile form.
They suffered and their families suffered and the fact that the only comfort to be has is that they are no longer suffering is completely shitty and hardly a comfort at all. My thoughts and love are with their families.

In Tilda updates, along with the vomiting, we have a new symptom that is plaguing her. She has been having issues with her legs over the last week or so. At night, they seem to be really bothering her, waking her throughout the night. We aren’t sure whether it is muscle cramps or dystonia or some kind of seizure activity. I was able to see our paediatrician on Thursday who prescribed a new medication, Baclofen. Hopefully, this will start to help soon.

She did have a better nights sleep on Wednesday after a wonderful swim with her dad at school.

This is what keeps me smiling.


8 Aug

We are home at last! Tilda is looking a thousand times better and back to her delicious self. A true champion indeed.

With hysterical laughter like this, it was pretty hard to justify her staying in.

We are on a few more days of antibiotics and I am keeping her home from school for the rest of the week.

Thank you so much to the people who kept me sane during our hospital stay with food and company!



7 Aug

Tilda definitely on the mend. My singing has brought her to laughter once more so the antibiotics must be kicking in. She is still not looking her shining best, still a bit puffy and sleepy but so much better than on Sunday.

We only tried a small amount of feed yesterday so will go for a bit more today and hope that the dreaded vomiting doesn’t add to the mix. She has also had some trouble keeping down her nightly medications so we will try spacing them over a couple of hours instead of giving them to her all at once. All going well, we may be able to go home tomorrow!



6 Aug

I am currently at home after having a very good nights sleep, about to head back to the hospital where Simon spent the night. Thankfully we did get moved to a ward yesterday morning so it is a little more comfortable for everyone.

Tilda was still pretty miserable yesterday, she slept a lot and you could tell that she was just not feeling very good at all. When I spoke to Simon this morning, he said that she is looking a little perkier so hopefully the antibiotics are starting to kick in.

The chest x-ray showed some haziness in her lungs, her right one more so. This could have been caused by a virus or it could have been that she aspirated when she vomited. As I understand it, chest infections are something pretty common with Batten kids and they can range in degrees of seriousness. It has been confirmed that she has pneumonia but I think we have caught it pretty earlier and certainly the doctors don’t seem overly worried about her. We will be staying in for a few days at least.

She has also been having some puffiness around her face and hands and feet but apparently this can happen with infections, they are keeping an eye on it.

Thank you very much for all your messages of support and love.  I will do my best to update when I can.


Tilda update

5 Aug

We are currently in hospital again. Matilda has a chest infection which they are treating with antibiotics. She hadn’t been particularly well over the last couple of days so we knew that something was brewing. After a lethargic day yesterday, hshe started vomiting at about 10:00pm last night and developed a high fever. I rushed her here and they did bloods and a chest X-ray to confirm the infection. She has perked up a bit but still looking a bit peaky. We are still in emergency as there are no ward beds available. Waiting to speak to the developmental medicine doctor to see how long we need to be here for.

I will update when I have more. I don’t have phone or text reception (unless you have viber) but I can access the Internet.

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