chanceforchelsea

Over the last twelve months Chelsea has had:

2 Hospital admissions

5 Emergency Hospital visits

208 Seizures

14 Occupational therapy appointments

17 Physiotherapy appointments

15 Speech therapy appointments

8 Neurologist appointments

4 Paediatric appointments

38 Music therapy sessions

730 doses of medication

Got a wheel chair

Held a Zumba Danzeit Fundraiser with the local community

Started to use the right arm and leg more

Started toilet training

Broke her leg on a swing

Celebrated her 3^rd Birthday

Started to weight bear with assistance

Realised that Chelsea won’t ever talk but can understand us and communicates in her own ways

Continued the ketogenic diet to assist in controlling her seizures

Asked for Help more than 62 times

Learnt how to clap her hands

Spent around $11,200 on therapies, medications, nappies, keto diet foods and equipment.

Started the construction of Chelsea’s Special Home

Received a Suncorp Brighter Futures Grant

Received more than $60,000 worth of donations and discounts for Chelsea’s Home

Thank you to all the friends, family, carers, respite workers and organisations that have helped Chelsea over the past twelve months.

She is a very loved and lucky girl to have so much support.  

With all the therapy appointments, early intervention and homework activities I look forward to seeing Chelsea stand or maybe even walk in 2014!

To understand where it all started read this….

Its been a while since I last updated Chelsea’s website / blog .

So here are the highlights and lows of April, May & June:

 ~ Chelsea has been weaned off 2 of her 3 anticonvulsants because the Ketogenic diet has worked so well.  Food is now helping control her seizures rather than nasty medications with side effects.

 ~ We have now changed from the Ketogenic Diet to the MAD (Modified Atkins Diet) Chelsea is allowed unlimited amount of protein, 15g carbs & 60g fat each day. This new diet is maintaining her seizure control and the MAD is less strict than the Keto. Which is less stress for the family and gives Chelsea variety in foods!

 ~ Chelsea has trialled a wheelchair / push chair and we are looking at quotes at the moment. We are SOOO lucky that all the fundraising we have done will pay towards the expense of the pushchair – so THANK YOU to all whom have donated over the past few years and who have helped recently it all adds up and helps precious little Chels J   we are forever grateful !

 ~ Chelsea broke her leg ! She was on the indoor swing at home and her shoes griped the rubber flooring and the swing kept swinging straight over her foot and she had a mild fracture in her tibia.  Pink fibreglass cast – that goes in the bath is great!  Since she broke her leg, we have been focusing on other therapies like speech instead of physio, as Chelsea is unable to weight bear at the moment, once the cast is off, she will be back into the swing of things – practicing her standing!

 ~ Chelsea has been a little bit more vocal babbling around her little brother, maybe copying him.  They are both enjoying music therapy too, they go weekly and enjoy the stimulation and socialisation.

 ~ Speech Therapy is going quiet well, lots of eye gazing at answers on flash cards or on the ipad.  We are actually trailing a device tomorrow for a few weeks, to see if this particular eye gaze device would be ideal for Chelsea. When we ask Chelsea to choose the a certain colour or shape, her eyes will stare at the correct answer. But her brain can’t communicate to her arms to choose the right answers very well.  Fingers Crossed this can help Chelsea communicate back to us better !

 ~ Seizures, well she still has a small one almost everyday and a big one once a week or so. This is just something we live with and deal with as they come.  It’s our norm.

~ Toilet training has begun, Chelsea does understand, just doesn’t communicate back, so we pop her on the toliet and ask her to go, and more often than not she does ! Wooohooo  this is the beginning of something great !

 ~Chelsea will get AFO’s in a fortnight! The cast will come off and the following week is the AFO fitting. AFO’s are plastic moulded shoe type device that will help strengthen her legs, ankle and line her feet up correctly and hopefully help her stand with more confidence and start weight bearing better. One day she WILL walk.

Thank you for following Chelsea’s story ! Until our next blog, stay safe and tell your family and friends how much you love them !

Well it has been a while since my last blog, 3months have pasted and Chelsea has been busy.  Last night I looked over photos from the past couple of months, I realise how much we love Chelsea and I can see all the opportunities we give her to improve physically and how much Chelsea is just a happy child.

The ketogenic diet is going really well, Chelsea is eating her special high fat foods. Her favourite is scrambled eggs and potato sticks.  As time consuming as it is making all her foods from scratch it has definitely been worth our while.

The diet is helping control her seizures, better than ever. In fact over the last 3 months Chelsea has been completely weaned off 2 of her epilepsy medications with no seizure increases – from 3meds to 1 is sooo awesome for Chelsea !   

As a family we try to spend lots of time outdoors, at the park, beach, in the pool. Photos below are from Chelsea’s adventures from the beginning of 2013.

Chelsea is doing really well at physio, getting closer and closer to standing with minimal aid from Trent & I.   Most days Chelsea has practice in her standing frame that has helped as well.

We brought Chelsea a table and chairs like other kids her age, Trent modified 2 of the chairs – she has arm rests and a piece in between her legs. So that Chelsea can’t fall out or be pushed over by her little brother.  She feels like a big girl and seems to be quiet chuffed I reckon. Happy Girl!

This month we had an old school friend of Trent organise a fundraiser for Chelsea to help with ongoing medical costs and to go towards a PramChair. ‘ Danzeit for Chelsea’ was a great success with over 100 people attending.  Awesome lights and sounds effects was donated by Dream Tech – a massive thank you for provided your services of free! RochdaleSouthStateSchool gave us the Hall & Danzeit Fitness got in contact with several other Zumba dance instructors to have a massive Dance Party with a few hours of dancing, entertainment and raffles.  It was beautiful to see all the support from complete strangers and companies.   A big thank you to Lyndelle for organising the fundraiser! You a very kind hearted lady!  From peoples emails about how much fun they had, it has now been said to be an Annual Event for Chelsea!  

There are several video clips from the day on you tube, click HERE to see one of the many clips.

More photos from the Fundraiser Danzeit for Chelsea are on her facebook page so check them out!

Over the last twelve months Chelsea has had:

17 Physiotherapy appointments

15 Speech therapy appointments

8 week course of hydrotherapy

6 Neurologist appointments

4 Paediatric appointments

4 Hospital admissions

6 Emergency Hospital visits

12 Chiropractic appointments

4 Occupational therapy appointments

Got a standing frame

Got a walking frame

Moved into king single bed

Got a sleeping night camera to monitor seizures

Held a Champagne Breakfast Fundraiser with the local community

Started to use the right side of her body – arms and legs

Celebrated her 2^nd Birthday with lots of family and friends

Attended The Gem Hotel’s Pig Race afternoon, fundraiser for Chelsea & local charities from this we purchased an ipad with proloquo2go  as a communication device

Realised that Chelsea understands more than we give her credit for

Started the ketogenic diet and will continue it for 2years.

Eaten 16.8kgs of double cream for the keto diet  $225 worth in the last 7months!

Got better at rolling, sitting and getting herself down onto the floor

Became a big sister and has learnt to seek attention and babble more, we are working on sharing toys

Spent around $12,700 on therapies, medications, nappies, keto diet foods and equipment.

Made some wonderful little friends.

If you are new to following Chelsea’s development or need a refresh, have a look at my first blog (click here), that was done almost 1 year ago. She has come along way. We still stay positive and celebrate the little things that Chelsea does, even if it is at Chelsea’s pace. She will eventually crawl, walk, talk. With all the therapy appointments, early intervention and homework activities I look forward to seeing Chelsea blossom next year!  Thank you to all the friends, family, organisations that have helped Chelsea over the past twelve months. She is a very loved and lucky girl to have sooo much support.

Tomorrow the 20^th November is the one day of the year I will never forget. 2 years ago the 20th was a Saturday – the day Chelsea had her first ever seizure!    It was that weekend we began anticonvulsants, had an MRI on her brain & was diagnosed with Cortical Dysplasia – Epilepsy. The heart breaking news that the Doctors told Trent & I.  Our baby girl was only 13weeks old.   We spent 2 weeks in Hospital until the seizures were under control, we got sent home and within a week we were back for a further 5 weeks over Christmas & New Years of 2010 as her seizures increased. Gezz what a way to spend baby’s first Christmas!  All of Chelsea’s family visited on Christmas day, such love and support, it was touching.

We met another little girl Dakota & her mum Jodie who was Chelsea’s hospital buddy / room mate. So lucky to have met them and shared a room and kept each other company through the tough times. To this day we are still friends with Dakota her and Mum, Dad and little Brother.  

We had countless scans and tests done – EEG’s, ECG’s, MRI and blood tests. Poor kid.

I received a random phone call from a lady called Lisa she heard I was in hospital with the same diagnosis of Cortical Dysplasia as her son.  She rang the hospital bed to chat with me – just letting me know I was not alone and she was there if I needed to talk. To this day we are still great friends and I sincerely cherish that friendship. She is still always there for me as a shoulder to cry on or a phone call to let me know it’s OK to cry and yes it does suck having a kid not like all the others. She was the one who encouraged me to get Chelsea on the Ketogenic diet and for that alone I will be forever grateful.  Chelsea has had outstanding results on the diet decreased her seizures by 80% and decreased medications.  Just amazing. We love you Lisa.

The Queensland floods were coming and we were just about ready to be discharged, luckily we made it out and home. With numerous trips back to the hospital via ambulance it just seemed unfair, but not much we can do but suck it up and stay positive for our little girl.

So from all of this we have discovered what REALLY matters in life.  All that is important is FAMILY. Not money, not a house, not a big tv or material items.  But the people you love the most really do make you most happy!

 ## Make the most of today because you don’t know what tomorrow holds ##

 Amazing. The ketogenic diet is just amazing, I never thought food could help control seizures and change the brain’s / body’s activities soooo much!

Chelsea has now been on the keto diet for 5 months and we have begun reducing topomax anti-consultant. She is doing outstanding.  Tomorrow I will be in the kitchen for close to 5 hours preparing meals for her dinners and lunches. On the menu is Chicken & Mushroom Casserole, Spag Bol (minus pasta) & Tuna Bake.  Everything will be weighed out to the nearest point 1 of a gram. All the hard work is definitely paying off!  Below is the recipes I have created and the spag bol that my girlfriend makes for her boy. Chelsea loves it too!  I’ve attached the recipes below so people realise how EVERYTHING is weighed and calorie counted!

We have had a very busy month and things are not slowing down for Christmas. More neurologist appointments, off to see the pediatrician and the usual speech therapy appointments, physio, music therapy, ecdp & playgroups.  Plus the find times we have at home playing with stuff like rice, jelly, finger painting, outdoors in the sand pit etc. Photos from these activities are on Chelsea’s facebook page.

Chelsea is definitely on a winning streak again, no seizures in the last 2weeks !  Thank you keto diet!

Please note that these recipes are specifically designed for Chelsea’s daily fat, carb & protein intake under the instruction of a dietician. It is not suitable to try these foods without guidance of a specialist. 🙂

An Opa’s story.

Sandy and I were super excited to learn that Mel and Trent would be parents and we would become Grand Parents for the first time. This is what we dreamt and hoped about. Then we learnt that Sandy’s daughter Amy was also expecting Hannah 5 weeks later. Excellent! Double the excitement!

When Chelsea was born, we were all so excited. Then along comes Hannah. Just perfect… 2 beautiful little girls.

When Chelsea had her first infantile spasms we had no idea what was going on or what it all meant.

I went with Mel to the Ophthalmologist appointment when they finally diagnosed Aicardi Syndrome. It was only the second case the Doctor had seen. The nurse looked up Aicardi Syndrome in her massive medical book and found it on the very last page. What could that mean???

I stood there holding back the tears, trying to be strong for my own daughter. In reality, Mel turns out to be much stronger than me.

The big mistake I made was Googling Aicardi Syndrome. Big, big mistake! Everything I found was bad news… Prognosis, lifespan, quality of life??? It seemed like our world was turned upside down. How could our beautiful Chelsea have such a thing?

In some ways, I found it doubly hard. I was worrying about my daughter and for Chelsea.

The one big thing I have found in this journey is that the only thing that matters is family! Chelsea is family and we love her with our whole heart.

We have had 2 great years with Chelsea and I know that with Mel and Trent as parents she will be given every chance of a full life.

I have made a few observations since Chelsea was born…
– Chelsea is not disabled. She just has special needs!
– If we meet someone who doesn’t know about Chelsea’s special needs, they don’t have to know everything! Those in the family and her circle of friends know all about Chelsea and we all love her.
– I find great joy in the smallest events now. Recently when we were sitting in a Coffee shop, Chelsea let out a very loud screech. People looked over, but I don’t care. Screech away Chels! Make as much noise as you like!
– When I get Chelsea to give me a High 5, my heart is bursting with love!
– I am continually surprised at the generosity of complete strangers. It does restore your faith in humanity to see people give so generously and freely of their time and donations towards Chelsea.

No matter what the future may hold, all that matters is that Chelsea is happy!

Love always Opa…

Today we saw one of Chelsea’s neurologists for a ketogenic diet update.  The Neuro & Dietician were very happy with Chelsea progress and success on the diet over the last 4months, so the decision was made to continue the diet for the next 20months – yep 2 years worth! We are in it for the long hall and we get to begin weaning Chelsea off some of her anticonvulsant medications. The main reason we started this diet was to see if food can control Chelsea’s seizures rather than medications – medications have terrible side effects.  Some side effects for Chelsea include: – drowsiness, permanent peripheral vision loss, prevent the ability to sweat, reduced communication skills, nausea etc.    So we now look forward to seeing if weaning her off will not affect her seizure activity. We are keeping our fingers crossed!

Since the arrival of her brother, Chelsea has been seeking attention as kids do, which is really nice. She is squeeling and babbling more, we are really looking forward to her copying and learning from Brock once he hits milestones – clapping hands, crawling, waving etc.   We are looking forward to summer time in the pool and at the water parks with the kids!

 It’s been a little while since my last blog. We have been very busy! A lot has happened……….

Chelsea has moved into a ‘big girls’ bed a nice big king single. She is proud I think, she is also sleeping a lot better, as she is so tall she was out growing her cot fast!  Maybe this is why she is doing so well with her seizure activity(plus her keto diet of coarse).  She has only ONE seizure in the last month!  

The keto diet  – I spent 5 ½ hours in the kitchen cooking up meals for Chelsea the other week. So time consuming having to weigh absolutely everything and cooking and preparing meals. But after 4months of being on the diet, we have finally found food’s Chelsea is happy to eat every meal.  A new recipe I made up was Tuna Bake, example below.

Big news, Chelsea’s little brother was born the 14^th August, Brock is his name. Amazing how my husband and I already notice some differences between Chelsea as a baby and having Brock. What a journey ahead we have!

We celebrated Chelsea’s 2^nd birthday on the weekend. My goodness, lots of little friends and family came along to celebrate. We had a music therapist entertain the kiddies, she was fantastic!  All the children enjoyed themselves and the parents and grandparents all had smiles on their faces too, I think the adults had smiling hearts seeing the kids having so much fun and making music.  I believe birthdays are there to be celebrated, they only happen once, Chelsea is precious and over the last 2 years she has come a long, long way. We are proud of her and hope to see her improve in leaps and bounds over the next year.

Time in her standing frame has helped, she is partially weight bearing on her feet.  Her physio is very impressed with her progress and we have lots of home work activities to do everyday.

Now that it is beginning to warm up I’m really looking forward to getting Chelsea back in the pool and working on hydrotherapy activities.

Well time is flying in our household – Chelsea is doing quiet well on her Keto Diet, only after being on the diet for 2months we are seeing great results, less seizures (not total control, but a lot better seizure free time frames) we are also seeing her develop heaps!  Her little brain is growing and she is learning things.  We have taught Chelsea to ‘cuddle’ where she will place her head on your shoulder to cuddle her soft toys. ‘Hi 5’ we wait and wait and ask for a hi 5 and she will bring her left hand up to yours for a hi 5.  Babbling some words still like ‘Diddy’ and just heard her say back to ‘Hello’ 3 times today! We are working on speech so I hope she can continue to hit these little milestones. 

Chelsea’s physio was stoked with her progress since we last saw her.  The frame has definitely helped, she is just started to weight bare on her feet and is ‘army crawling’ well – not really crawling but she can wiggle up towards her toys…. Slowly getting there !  Chelsea has discovered how to put her hands out in front of her to ease herself onto the floor – not just face plant.  Just working now on her upper body strength to lift herself back up, we have some great home work! 

The teachers and parents are ECDP Playgroup have commented on Chelsea’s progress and alertness – its really nice to hear that other people notice the changes and progress she is making. Makes my day!