Archive | September, 2011

School Holidays!

28 Sep

Are great! I did have to work on Monday so officially started the holidays yesterday. So far, we are having a splendid time. It is really nice to just be able to hang out with Tilda and the trampoline is certainly getting a work out!

Best Hair Photo Ever

 

 

 

 

 

 

 

Monday afternoon, two lovely ladies from the Make A Wish Foundation (aka my dear friends Dan and Danni) came over to talk about Matilda’s wish. To be honest, it was quite confronting. As a former Wish Coordinator, I was all too familiar with the process and procedures and never thought that they would apply to my child. Since the diagnosis, I had thought about a wish quite often and finally a couple of weeks ago, sent the form in to my very dear Dan. That hurdle over, I didn’t really think that the home visit would be as confronting as it was.

The afternoon was lovely, delicious cheese had been brought and was headily consumed and the conversation meandered through natural topics before clunking in on the actual reason they were there.  A wish to be granted to a child with a life threatening illness. My child. Tilda.

As mentioned in previous posts, denial has been an excellent friend and an excellent way to cope. Plus, Tilda is in fantastic form at the moment. Yes, she is wobbly and yes, her words are diminishing but she is really happy and bright and full of love and good cheer. So it is very hard to reconcile this Tilda with someone who is able to be granted a wish.

To that end, in true denial fashion, I am putting the wish on hold for a little bit while I sort out my head and heart. I understand now those parents that I worked with, the feeling that almost by granting a wish, you are putting  a seal on their fate. I know also, firsthand, the absolute joy that a wish can bring- to a child, to a child’s family. It is an amazing organisation and one that I was proud to have worked for.  I do want Matilda to have a wish, I just need to get my head around it a little bit more.

In light of all of the above, I would like to pay a special tribute to my very beautiful friend Dan who has had the extremely daunting task of being  the one looking after the wish. Dan has known Matilda since I knew that I was having her (possibly before – she is uncanny in her ability to sniff out a pregnancy!), she has watched her grow, watched her develop seizures, and watched her deteriorate and I know she loves her enormously. And me of course! Thank you beautiful friend, I know it hasn’t been easy but your amazing ability to radiant positiveness and fill all those around you with warmth has made, certainly my journey, much easier. 🙂

Update

On to an update on the general state of things. We had our pediatrician appointment this morning. Again, it was more of a catch up and letting her know how everything was going. The PEG feed that looms before us, is still a ways off. We do have an appointment with the Gastro Clinic to talk further but not until the middle of December. She noted that Matilda was more wobbly but was  happy with her general weight and overall health. We are still weaning the Topomax and are now down to 15mg in the morning and 25mg at night. With no significant fallout, we will continue along this path and hopefully get rid of it all together.

We will be adding further people to Team Tilda as we start liaising with Palliative Care from the Royal Children’s Hospital. The name does not invoke particularly good connotations however, they are not just there for end of life care but as a further support and resource in regards to Tilda. From their website:

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite, and care through death and bereavement.

We should be meeting up with them in the next couple of weeks.

And so it continues. I am very excited to have a week and a half more of school holidays which will be filled up with trampoline shenanigans, outings with my lovely sister and nephews, naps in the afternoon and relaxing and enjoying the very delicious Miss Matilda.

Much love to all

oxoxxo

Anger

23 Sep

When we first found out about Matilda’s condition, after coming home from the neurologist, I went outside and smashed a number of our useless figurines that we seemed to have collected over the years. It felt pretty good. Since then, I haven’t really felt much anger in regards to what is happening. Until the other night.

I have joined a Facebook support group – amazing parents from all over the world who are going through what we are going through. It is wonderful to be able to chat to people who understand but it is also terrifying because a lot of their kids are far more advanced in the disease than Matilda and it is like looking into her future, which is not that great a place.

A lot of the parents have put together beautiful videos of their kids – photos showing them progress from babies to toddlers and then having EEG’s, in a walker, in a wheelchair. It is heartbreaking. Watching one of these videos, I was suddenly struck by a fierce and overwhelming anger. It isn’t fucking fair. It isn’t fucking fair that these kids go through what they go through and that parents and loved ones have to watch. These kids who start out just as everyone, with the world at their feet to then detoriate, and detoriate until death. What the fuck is that about?

And then, to fuel my anger, I was listening to the radio and heard a news segment that scientists in Queensland were working hard to develop a strawberry that tasted like bubblegum. Really? This is what we need in the world?

I know anger is a fundamental part of grief and I know what I am feeling is perfectly normal and perfectly healthy. I do think that I will need to channel it somewhere and I am gearing up to start to become more involved with the  Australian chapter of Batten Disease Support and Research Association. Currently, I believe, as they are linked to the US association, much of the money raised here goes overseas. I would like to see research happening here. I will be coming more and more active in creating awareness and promoting BDSRA over the next few months. It is a way to use my anger to DO something, however futile it might be for Matilda. I will use my anger for good, not evil.

Updates

We had an appointment with our neurologist yesterday who was very pleased to see Matilda looking so cheery though slightly alarmed by her propensity to do roly poly’s into her desk. It was more of a catch up meeting – letting her know how Matilda has been doing and where we are with her weans etc. I don’t really want to upset the balance that we have at the moment, so am reluctant to introduce any new medication. Our neurologist agreed and we are continuing as we are – slowly weaning the topomax and keeping everything else as is. We have an appointment with our pediatrician on the 5th Oct to talk more about feeding but I believe we are still a way off a PEG feed. Tilda’s weight has gone up slightly and she is doing pretty well with her eating.

I am also very sad to report that another one of Matilda’s classmates passed away yesterday morning.  Charlotte was 8 years old and had an undiagnosed condition which left her unable to walk, talk or even smile. My thoughts are with her family and with Matilda’s wonderful teacher Andrea, who has now lost 2 out of her 5 students in the last two weeks. I am glad for her that it is school holidays after today and she can take a very well-earned break.

Thank you all again for your messages and comments which I read avidly and sincerely appreciate.

xoxox

The Birthday Bash

19 Sep

It seemed to work out quite well that Matilda’s party got cancelled last week. Possibly not for those friends and family members who were sick but it did mean that the weather was definitely more favourable for an outdoor bbq! It was a typical Melbourne afternoon, there was a lot of taking the cardigan off then putting the cardigan back on but overall, the weather behaved itself.

First of all, I would like to thank the wonderful Emma and her family for the trampoline. We assembled it (without too much ado!) on Saturday afternoon so Matilda didn’t see it until Sunday morning. Well. She was delighted with it! She jumped and did roly poly’s all afternoon, until she got so tired that, in the middle of her party, she had to go and have a sleep! Which was completely fair enough! It is such a wonderful thing to have and I am very grateful! Thanks Emma!!

 

Now, I am not a domestic goddess in any sense of the word. Simon does most of the interesting cooking in this house. But for some reason, I got it into my head that I wanted to make Tilda a birthday cake. And not just any cake but one of those cakes – from the now vintage edition of The Australian Women’s Weekly Children’s Birthday Cake Book.

I admit, I picked a fairly easy one.

From the book

 

 

 

 

 

 

 

 

 

But I think you will agree that my version was pretty darn good!

 

 

 

 

 

 

 

Possibly, even better. 🙂

Simon cooked a great bbq, the beers were cold and the sun shone down. Thank you so much to everyone who came. Thank you for the amazing presents and for celebrating this very special day with us.

Much love

oxxo

Dylan

15 Sep

Sadly, one of Matilda’s classmates passed away on Tuesday night. Dylan was 6 years old and had cerebral palsy. Due to the severity of his condition, he was unable to come to school so every second Wednesday, Matilda’s class would go to his house for the morning. I was lucky enough to go along one morning and met him and his lovely mum Jacquie.

My thoughts today are with Jacquie and Dylan’s brother and sister.

Much love

xoxo

How did we get here

14 Sep

I thought I should probably do a bit of a recap on how this all came to be, how we went from having a perfectly healthy child to the seizures, the loss of speech, the unsteadiness and all the rest.

Tilda was born on the 10th September, 2006 perfectly healthy in every way. She weighed 7 lbs 7 ounces, had not a skerrick of hair on her head and was a normal, happy baby.

All went along swimmingly. She sat on her own at 5 months, crawled at 9 months, started talking at about 12 months, walked at 15 months, didn’t sleep through the night until 16 months and was doing all the things one would expect.

Just after her 2nd birthday, we moved up to Darwin. Why not? There was an opportunity for Simon to work up there and it seemed like it would be a wonderful adventure. And it was, for the most part. At Matilda’s 2 year old checkup in September 08, she was pronounced fit as a fiddle! Even ahead in her speech and language.

But somewhere during her 2nd year, her speech began to slow down. Not enough to cause major concern but enough to feel that something was up. I scheduled a developmental checkup on her 3rd birthday and then, one week before that, on the 3rd September, we had the very first tonic clonic seizure by the side of a pool. It was the scariest thing I have ever experienced.  When I think of that afternoon, I can’t help but cry. After taking her to hospital, the seizure was categorised as a febrile convulsion, a one off that would probably never happen again.

Shaken but not stirred, we went on with our lives.We got married down in Melbourne on the 20th September, we went on holiday/ had our honeymoon for three weeks in Thailand, Vietnam and Singapore.

All was well and Tilda was in fine fettle. After returning from overseas in late October / November, I began noticing that Tilda was blanking out. Ever so briefly. If you blinked you would miss it but it was like she was absent for a second. Then towards the end of November and into December, she started falling. One minute, she would be standing and the next just collapsed on the ground. I have since read descriptions of this type of seizure that it is like they are a puppet and someone has cut the strings.

It was just before Christmas that we took her into Pediatrics at Darwin Hospital and after observing one of these drops, we were admitted overnight for further testing. A primary generalised form of epilepsy was confirmed and we started on Epilim.

As if all that weren’t enough for the poor monkey, on New Year’s Eve day, she fell off her chair at childcare and broke her collarbone. I will admit that I didn’t actually take her to the doctor for THREE DAYS because I didn’t think it was serious, it was only that she was obviously still in some discomfort that I took her to the GP who told us to immediately go to hospital for an x-ray.  Bad mother, bad mother.

I flew back down to Melbourne with Tilda in January for further testing and it was in our appointment with the pediatric neurologist on the 20th, that the diagnosis of Doose Syndrome, or Myoclonic Astatic Epilepsy was confirmed. This is a severe type of epilepsy which is resistant to medications and difficult to treat. We knew we were in for a battle. I went online and joined the incredibly lovely and supportive Doose Group who were and still are invaluable as sources of knowledge, a place to vent where someone understands.  We introduced new medications, took away ones that weren’t working, went up in dosage and down in dosage and nothing seemed to help. After another tonic clonic in October of 2010, we knew it was time to start the Ketogenic Diet. This extreme diet has proved incredibly successful for many Doose kids and we hoped that it would be as much for us. We spent a week at the Austin hospital introducing Matilda to the diet and getting her into ketosis. It was a truly terrible week. Matilda hated all the procedures, hated the Ketocal which was used to slowly introduce the state of ketosis and even had another tonic clonic on the first day. Slowly, she got better at eating the food and we got used to preparing it. When the week finished we went home but Matilda was still having lots of myoclonics and was very unsteady. It was decided that we would introduce another drug, Clobozam.

We had four incredibly glorious and wonderful seizure free days. Our only ones ever as it turns out. But slowly and steadily, the seizures crept back along with this new symptom of general shakiness. We persevered with the diet for three months, hoping that there would some sign of improvement even just a small one. But after three months, as the seizures seemed to be getting worse, it was decided that the diet was not working for us and we weaned her off it.

She very happily went back to eating carbohydrates and her seizures remained the same. Our neurologist told us that she wanted to do some further testing and in April, Matilda had another MRI, further blood tests and a skin biopsy. We weren’t given too much information as to what the testing was for – better not to know I think was the idea. I had, however done a bit of googling and knew that what we were testing for wasn’t good.

In a very unfortunate and rather mean twist of fate, our neurologist phoned me late May to tell me the wonderful news that Matilda did NOT have the terrible, terrible condition that she had been tested for. We had an amazing week where we believed this and I think this is why the 2nd of June blow was especially difficult to hear. Unfortunately, our neurologist was mistaken. On the 2nd June, she got the test results in front of us at that appointment and learned at the same time as we did that Matilda did indeed have a terrible, terrible condition and it was Batten disease.

We have come pretty far since that day and are in a world of day to day living and not too much thinking about past and future. We have been told how strong we are and how amazed people are that we can hold it together as well as we do. I tell you now, that the only reason we are able to hold it together so well and cope is because Matilda at the moment is happy. Happy and cheery and still Matilda. But I know what this disease can do. I don’t know how we will be if and when Matilda begins to decline. And I absolutely don’t know how we will be when we lose her. It is then more than ever that I will rely on the amazing friends and family that we are so lucky to have. I hope we can still be strong but it will be by far the hardest part of this, that began with a seizure by the side of a pool.

Happy Birthday Tilda!

11 Sep

Yesterday, Matilda turned 5! We had planned a low-key bbq with family and friends but unfortunately there was a fair amount of sickness about so we decided to postpone. Instead, we thought we would head up to Healesville Sanctuary. The weather was not looking too great. In fact, just as we got there, it started to absolutely bucket down!

 

Thankfully, it didn’t last too long and it completely held off as we wandered through the beautiful grounds. It was such a lovely day. Matilda loved being in her stroller – we have borrowed it from school but are soon to be getting one of our own (thank you Nat!). And she loved seeing all the different native animals. Echoes of a previous video – she even got to pat a very large goanna. I say pat, it was more a gentle swiping at it! Luckily, it was a very good natured goanna and didn’t seem to mind too much.

We spent a very pleasant few hours at the sanctuary and came home for a bit of Maisy and some KFC popcorn chicken (of course!). Thank you so much to everyone who sent presents and cards and wrote lovely Facebook messages to Tilda. She had a splendid day! And because we postponed her birthday bash – we get to stretch out the birthday celebrations even longer which is always a good thing!

 

To update on my glasses saga – unfortunately they have not been handed in to lost property at the train station. I can only assume that someone with my exact prescription happened upon them and is now enjoying a life of clear vision for the first time. 🙂 Best of luck to them I say.

Having a bad day

5 Sep

I tried to go to work this morning. I really did. I was thwarted. Firstly, the car was in our newly cleaned garage but unfortunately I didn’t have a key. So after much huffing and puffing around looking for one, I set off for the train station. A 20 minute walk which was actually quite pleasant in the sunshine but I was well aware that I was already late. Got to the train station, missed the train. Had to wait 10 minutes for the next one. Not so bad, again there was sunshine and Words With Friends to play. Finally got on the train. Due to the previously mentioned sunshine, I had taken off my glasses and put on my prescription sunglasses. Who can guess what happened next?

It took me two train rides and a tram ride to get to work. It was only once I was metres away from the office that I went to put away my prescription sunnies and put on my glasses. No. It was not to be. Somewhere between train rides and tram rides, I had left my glasses behind.

Not relishing the idea of sitting in the office with sunnies on all day , I went back to the train station to be told that items have to be missing for 24 hours before you are able to check with lost property. Bloody hell. So no work today. Back on the train, back on the 20 minute walk this time uphill and home.  Now sporting my rather old and dilapidated pair of glasses but at least I can see and don’t look like some kind of wanker celebrity.

Grumpy, grumpy, grumpy. But, the sun is still shining and let’s be honest, having a day at home rather than working isn’t all that bad!

Though I may be a little grumpy, Tilda is not. We had a very pleasant weekend. Yum cha with the lovely Treens and John and 6 week old Clementine, who is divine.  Tilda ate heaps which is always wonderful to see. Then I took her for a swim at the pool. I must try and find a way to film her in the water because she just loves it. It does completely knacker her out though and usually 1/2 an hour is her limit. Quiet night in on Saturday then Father’s Day on Sunday! Glenallen had a Father’s Day stall on Friday and we had been told that Tilda had picked something specifically for him. It was all wrapped up in her bag and to be perfectly honest, we weren’t expecting much! But Simon was very pleased with his new Homer Simson key ring! With a torch! And three Homer Simpson phrases! Well played Matilda!

Dinner at my lovely parents house last night which is always nice. Below are a couple of videos taken. The first of the famous roly poly’s and the second of the equally famous stair attraction!

 

 

Thank you for all your wonderful comments on this blog.  I love reading them and I must say, having somewhere to write down my thoughts is proving a very cathartic exercise.

xoxoox

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