chanceforchelsea

Chance for Chelsea to Live the Life she Deserves

tax time !

End of financial year – just in time for tax !   Use Chelsea’s Sunshine Butterflies fundraising page to receive at Tax deductible receipt!  (Donations over $2) 

Click here to see PDF Flyer :       Make a tax deductable donation to Chelsea’s Special Needs

Chelsea was diagnosed with Aicardi Syndrome, Cortical Dysplasia (a brain defect), Epilepsy & Cerebral Palsy. She has been classified as disabled and takes several anticonvulsants medications and is developmentally delayed.

Your support and generous donations are so greatly appreciated by us and will make a world of difference to the livelihood of our beautiful little angel Chelsea. We hope to raise money to assist us in funding Chelsea’s specialist needs such as Physiotherapy, Speech Therapy, Hydro Therapy, Bowen Therapy, Occupational Therapy, Respite, Seizure Mattress, Conductive Education, Medications, Travel costs, ipad for communication and specialised mobility aids.

Our most sincere heart felt thank you for your donations to help our precious little girl who deserves to live life to the fullest.

Thanks, Melissa & Trent (Mum & Dad of Chelsea)

If you want more information about Chelsea please visit her website http://www.chanceforchelsea.com.

And

like ‘Chance for Chelsea’ on facebook

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So far so good – Joyful June

 

So far so good…….

It is already June and only 2months until Chelsea is a big sister!   June has been an uplifting month for Chelsea and our family.  Chelsea has now gone 19days without a single seizure – the ketogenic diet is definitely working! We saw the specialist today at the Mater and reviewed her progress and eating patterns. If Chelsea continues to do really well on the diet, at the 3month stage we can reduce her medication!  Don’t forget Chelsea’s world record of seizure free time is 40days so she is half way there to reaching her record J .    Chelsea will be 2 in September, developmentally she is currently at the age of a 7month old, I guess its just numbers – we have to stay positive, as Chelsea is still making progress – you just gotta give her time!  Rolling and babbling is Chelsea’s new favourite things to do,  we have now started to give her more credit than we used to.  If you ask Chelsea to give you a cuddle, yes she will put her head on your shoulder. If you start saying dad dad daddy at her she sometimes replies with a diddy.  She knows how to play peek a boo and can anticipate you surprising her.  At speech therapy we were amazed at how well she interacted and babbled to the therapist.   Trent – Chelsea’s daddy made her a specialised desk, similar to the ones that the therapist had in our session.  Photo below – We are also selling them – made to order:  email chanceforchelsea@gmail.com if your interested.   We were pleasantly surprised when purchasing Chelsea’s new shoes for her standing frame – the sales guy mentioned that you usually get 1 size up, but not too many as kids feet slide in their shoes as they walk – eekk I had a sad moment in my head, but me being me said “oh she can’t walk, but the physio suggested these shoes for her standing frame” the sales guy was very kind and offered us a discount on the shoes, we saved 25% thank you very much , it was heart-warming that yet again a complete stranger is willing to help out just that little bit.   Friends and family have noticed a change in Chelsea too, she is using her right side of her body a bit more, babbling heaps, really good eye contact and interactive. The music therapist at special kindy was very impressed with her interaction and attention the other week, Chelsea was given 3 song choices on a board, she picked Banana’s in pyjamas, so we mixed the cards up again and yep she picked the same 1 again!  That was nice to see, she knew what she wanted.   Everything seems to be so positive lately and is a nice change and is very uplifting for Trent and I.

 

 

 

 

 

 

 

 

 

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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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April – what a month!

 April, what a month! Fundraiser over – pew what a big lead up to such an amazing morning, so much organising and time spent on the preparation, relieved it went to so well. Thank you letters are now on my to do list.  We are blessed to have such support.  Now we can focus on the next milestones for Chelsea.

Chelsea has been doing relatively well with her seizures and has progressed a lot developmentally. She has discovered how to roll and can now bring her feet to her face (gezz just like baby’s do I know she is 19months old but she is making progress even if it isn’t the norm time frames )

This month has made me realise how many people care and are here to support us, its overwhelming.  I can say we are “lucky”.  Luck is not always on our side but for once things just seem right.   Friends, family, neighbours, playgroup mums, baby bridges, the local community have all been very supportive.  Thank you to you all.

Next hurdle is this diet! Chelsea is starting the ketogenic diet second week of May.  Such hard work and dedication will be required by all the family but it will totally be worth it to have the chance at reducing medication, having seizure free time and developing more. Chelsea and I are so busy with appointments, I am actually really looking forward to our appointment with her  Paediatrician, he will be pleasantly surprised with her progress and I can’t wait to see his reaction and have a good chat about her development.

Chelsea’s physiotherapist was ecstatic to see her progress last week. When placed and positioned, Chels can use her upper body strength to hold herself up.  Balance when side sitting and reach out for toys a lot better.  We love, love, love Chelsea’s Physio, she is one of Queensland’s most respected Clinical Paediatric Physiotherapist, has 26years experience, she is the best person to help Chelsea reach her goals.  She is so positive and uplifting, is a wealth of knowledge, kind hearted and loves getting on the floor down at Chelsea’s level.  She has seen Chelsea since she was only a few months old and it is because of her that Chelsea has come so far.    Photos below at Physio.

 

  

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Prizes for the Fundraiser Breakfast

Chelsea’s Fundraiser Breakfast coming up in 2 weeks there are some fantastic prizes to be won at the auctions & raffles!

To be held on Sunday 15th April 2012. $30 per ticket. 7am Start with Champagne Smorgasbord Breakfast then to follow live auction, guest speaker, raffles and entertainment.

Some of the prizes include:

– Signed Tommy Emmanuel Electric Guitar –  Fishing Rod – Tool box – Painting by Don Waters – Café Metzzo Voucher – Gilhoolies Voucher -Aqua Duck tickets – Off Road Rush pass -Whale Watching tickets – Cheeseboard & Wine – Brewery tour tickets – $250 Clayfield Harvey World Travel Voucher  – 1cubic metre firewood delivered – Infinity family pass – Currumbin Wild Life Sanctuary tickets – Coffee Club voucher – Gardening Hose Set – La Porchetta voucher – Thermo glasses – Framed & Signed Titans Jersey – Framed & Signed Cowboys Jersey – Signed JD shirt by Kelly Racing brothers – 2nights accommodation at Wharf Boutique Apartments (2bedroom), Surfers Paradise   –  Signed & Framed Broncos Jersey – John Deere Toy Tractor – Star Class Movie Tickets -Cactus Jacks Voucher -Photography session & photos -Signed Cricket Bat Brisbane Heat – Massages – Coffee Lovers Pack – Night at O’Reilly’s Rainforest Retreat -6L Slow Cooker -Pet Store Voucher -Kids Play Rug – Bar Sign “Beer Bundy & Bullsh1t Bar” -BMW Overnight Suitcase -Dog Lovers Pack -Alcohol Pack – Boomerangs Playcentre passes –   plus MORE!

 It will be a great breakfast with Lots of prizes to be won! Hope to see everyone there! Share Chelsea’s event with all your friends on facebook!

This is an America Standard Telecaster

This is an America Standard Telecaster, not the entry level American madeto-
a-price “Highway One” series with less robust finish and hardware. The
American Standard Telecaster is distinguished from the other Telecasters
marketed by Fender that are made in Mexico (Mexican Fenders) or Asia
(Squiers). The American Standard epitomises American craftsmanship and
attention to detail including quality hardware for playability, steadfast
tuning and perfect intonation.
According to Fender USA production records, this American Standard
Telecaster serial number Z1021151 was manufactured in 2002. A decade has
passed and there have been no requirements for any adjustments or repair.
The settings on the instrument are pretty much as it left the factory 10 years
ago.
The “Tele” is Tommy Emmanuel’s electric guitar of choice when not playing
Maton acoustics. He autographed the guitar on 19 April 2003 when he
performed at Twin Towns that evening. The designation “CGP” stands for
Certified Guitar Player, an award conferred exclusively by the late Chet
Atkins during his lifetime. Including Chet, there are only 5 CGP’s.
Fender’s brochure for the Tommy Emmanuel Telecaster.

 

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Record breaker

Well since my last blog Chelsea went 40 days with no seizures – her world record !  Her 1st seizure was on Sunday and another on Tuesday, but it is mainly due to a virus she had.  Hopefully as she is on the road to recovery the seizures stay at bay.  Well we have our fingers crossed.   

We have seen our physio and she has suggested a standing frame, which is great – exciting that we are getting Chelsea up and ready for walking.  Not so exciting is the fact that they cost around $3,000 . Yep, you read right $3,000.  Oh dear well this Fundraiser – Champagne Breakfast in April is definitely going to help cover the costs for this frame. Information is on the tab on the right of this website. I have been so busy asking companies for donations of prizes for the auctions and raffles, as all proceeds from those auctions / raffles will go directly to Chelsea. So far we are on the way to an exciting event, and hopefully can pay for Chelsea’s standing frame and some therapies!

Well well well I received a disappointing letter today, notifying me that Chelsea is not legible for the ‘Better Start’ package.       This is a funding package for children diagnosed with Cerebral Palsy, Downs Syndrome, Fragile X Syndrome, moderate or greater vision or hearing impairments, including blindness.   The package is used towards much needed therapies and equipment. I sent in a letter asking for special consideration and was declined.  What makes me angry is that the package is not individually accessed, so kids like Chelsea fall through the cracks and get NO extra help, as she is not labelled with 1 of the above syndromes. Very unfair.

I find it discriminating, that my girl cannot access the package.  Chelsea and so many other disabled children need extra assistance, Chelsea requires a standing frame, next will be boots, more physio, speech therapy etc all this equipment and therapies we pay for from our pocket and the sunshine butterflies account we have set up.   

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Good news at last . . .

Since my last blog, Chelsea has attended Hydro therapy, Physio therapy, ECDP Special Kiddies Kindy, GP appointment & a specialist Neurologist appointment about the Ketogenic Diet.

Hydro was good, Disability Services provided a physio therapist & occupational therapist who did group activities and showed us how to do water physio activities, things we can practice at home or in our local pool. Chelsea had a smile on her face the whole time she was in the water, photo below.

The Physio appointment was great, we brought a special weight belt that we put on Chelsea, it helps her sit up straight and balances her out better. On her knees, holding her by the belt she can do little 10 sec stints at holding herself up.  We are working on her upper body strength so that soon enough she will be able to hold herself up, ready to crawl.  This physio appointment & weights was paid by Chelsea’s Sunshine Butterflies account, money that family and friends have given us to help Chelsea reach her full potential.

Special Kiddies Kindy / Playgroup is for little ones under 3, every Friday we attend a 2hour session. With a fantastic special needs teacher there is free play time, morning tea time and music therapy. Which all the kids who attend absolutely love, they are so engaged and happy listening and trying to copy actions that the teacher and parents do. (Chelsea doesn’t know yet how to clap her hands, wave or stand.  But I sit behind her during the music therapy and help her clap, wave her arms, touch her head, shoulders etc.) Attending the playgroup is great for the children and parents!   Doing activities listed above gets Chelsea ready the next step – Pre-Kindy ages 3 to 5.  This is for special needs kids and it gets them ready for Kindy, so there not thrown in the deep end and will hopefully be more at eases in the transition starting Kindy.

GP appointment was because Chelsea got the flu from Hydro.  My main concern was the chance of increased seizures, as it is common for her to increase seizure activity with the flu. But to my absolute amazement still no seizures!

At the Mater Children’s Chelsea, Trent & I attend an appointment to talk about the possibility of Chelsea starting the Ketogenic Diet (Keto Diet).  So the Neurologist and Dietician where both very helpful in explaining the main components of the diet, Chelsea is a candidate for the diet as her infantile spasms often respond well to the diet. (OMG this is great news I was so happy inside to hear this, this is a fantastic opportunity that I want Chelsea to have. The possibility of being weaned off her anticonvulsants & seizure free! I am willing to do anything to give Chelsea that chance!  Yes Please where do I sign up! )  Well the diet can being once she starts having seizures again.  At this point Chelsea has gone 22days straight with no seizures, the Neuro was speechless. SO the diet is on hold if and when Chelsea begins having seizures again. (It is a lot easier to continue giving Chelsea medications and eating what she likes VS strict calories counting, high fat, low carb low protein diet, so I’m happy to wait if the time comes)

Chelsea is on world record turf here – she had 10days no seizures 4days with a few little ones and now she is up to a further 23days straight with no seizures.  She is a lot more responsive, alert, happy, and making developmental progress! What a great start to the year.

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Blogging for Chelsea

Here is the first of many blogs to come  ….  This is a way for me (Melissa – Chelsea’s mum or Trent – Chelsea’s dad, my husband) to update the world and vent about anything and everything to do with raising a disabled child our little angel Chelsea Paige.

Trent & I got married, have a home, planned to have a baby and thought it would be happy ever after, easy peasy!  Discussing which school to put our daughter through, what type of car she will drive, what types of boyfriends she might have and how we hope she will get great grades at school.  Well, well, well has out outlook on life changed now or what!

Now its discussing where special school’s are located, that there is a high chance Chelsea won’t drive a car or have a boyfriend or even talk. Who cares about her grades but hope she can communicate and just be healthy and happy. Very different hey!

I am Chelsea’s full time career staying at home doing daily physio activities, monitoring seizures, taking her to specialist appointments – such as her Neurologist, Physiotherapist, Speech Therapist, Occupational Therapist, Special Needs Children’s Playgroup, Disability Services appointments and Hydrotherapy.

Chelsea is developmentally delayed for her age as her brain sends electrical sparks to her body causing seizures (Epilepsy).  Her bad brain muddle signals and doesn’t allow her body to react the way she wants her to, her brain signals let her down a bit.  But to stay positive Chelsea can sit independently, babble a tiny bit, use her left arm and roll a bit too. At physio we are concentrating on her using her right arm too now with resistant therapy helping heaps.   No she can’t crawl, walk or talk as other children do at this age but we DO see small improvements, slowly – we just call it ‘Chelsea’s pace’ and she will get there!   Early intervention is vital and attending all her specialist appointments are not free – there is no funding for Aicardi Syndrome Children in Australia.  So our fundraising through Sunshine Butterflies is the only way for us to afford to put Chelsea through these really important necessary therapies…. It’s Just the way it is.  We are doing everything we can do, to give Chelsea the Best Start to Life, exactly what this little girl needs and deserves. I believe all disabled children deserve the best start to life and need that extra help and as Chelsea’s parents we don’t sit back at cry about how bad life is and how unfair it is…(ha sometimes we do) but we always try to stay positive, be a great advocate for our daughter, stand up and speak for her! Be proactive!

I am so dam proud to be married to Trent, he is the best dadda and my best friend.   I am so dam proud at the efforts I put into Chelsea’s weekly appointments and therapies and think she is very, very lucky to have me as her Mummy and know in my heart we are doing everything we can to help her.  I push Chelsea to achieve her best at Chelsea’s Pace.  We love Chelsea very much.

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