chanceforchelsea

Chance for Chelsea to Live the Life she Deserves

Pills !

Pills, pills, pills. Could you imagine a 21month old little girl eating 10 ½ pills a day, some as big as an adult panadol tablet. Well that’s our girl – Chelsea has several pills morning and night, I guess she doesn’t know any different and we manage to put them down her throat as  she drinks her KetoCal milk every morning and night. We are really looking forward to seeing some progress with the diet, if the first 3months are successful and we see a reduction in seizures then we will be able to continue for 2years and over this period of time reduce Chelsea’s medications. YAY for her! Chelsea has now gone 5 days with no seizures and we can see how she is so talkative! Babble babble its great!  She just blossoms without seizures, we are excited to see the outcomes of the next 3 months.

Below is Chelsea’s night time medications, we are looking forward to reducing them if the Keto Diet goes to plan!

 

I have created a Keto Diet Recipe 3:1 . We call it a ‘Rosti’ like a hash brown type dish. Minus the potato – as it is too high carb – grated zucchini does the trick! This is a usual lunch for Chelsea, mmmmm well she enjoys it.

 

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Standing & Diet Update…

So this month has been super busy, starting the Ketogenic Diet but we are home safe and sound now with no more blood prick tests or poking and prodding.  We are busy cooking her meals and trying to make recipes she really enjoys eating, so that every meal time now isn’t a battle. 

Big news – delivery of Chelsea’s standing frame!        She loves being upright and “walking” around the house.  Photo’s below!

Chelsea is doing really well at rolling and wiggling around the lounge room, getting from one end to the other – not yet crawling but hopefully not too far off.

Chelsea’s seizures have fairly good lately, we recently purchased a baby monitor that has an inferred camera.  Oh my goodness, how we wish we brought one 1 ½ years ago!  It sits above Chelsea’s cot and while she is asleep we can monitor her.  As Chelsea’s seizures are mostly sleep orientated,  at night I can check on her at anytime without disturbing her by walking in her room. Also means I don’t have to get out of bed !   I would highly recommend to all parents with a child with Epilepsy to have one in their bedroom, such good value for money!

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Quick Update on Chelsea

Chelsea is being admitted to the Mater Children’s Hospital this Monday for a week to commence the Ketogenic Diet – the time has come!  We are anxious, scared and excited all in one.  We realise it will be a hard, annoying, repetitive, stressful.  I’m most anxious about the daily blood and urine tests.  BUT we know we have to give Chelsea this opportunity to possibly have seizure free time ….  It’s not just a Diet it’s a life change for Chelsea for the next 2years!

Chelsea has blossomed with her chatty behaviour – babble over the last week.  It is fantastic to hear her babble and gives us hope that one day she may talk or at least communicate in her own special.

So far this month we have visited the usual – Chiropractor, Physiotherapist, Neurologist, Paediatrician, GP, Baby Bridges, Special Kindy Playgroup, and Family Day Care – life is so hectic for a lil 20month old ! All Chelsea’s specialists are very impressed with her progress and we are happy to see her improving all the time.

Thought we would tell the world too that we are pregnant with our second child.  Chelsea is going to be a big sister! We had tests done to check that this baby’s brain had developed and doesn’t have Aicardi Syndrome. So we are pleased to announce we are having a little boydue Ekka Show Holiday 15th August .  Chelsea is going to learn oohhh sooooo much from her little brother, we are very excited.

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