Webdiary - Founded and Inspired by Margo Kingston

Richard:  Having come to know Jewels Smith as one of the most beautiful flames of Facebook (a ukulele-playing artist, photographer and comedian with a radiant disposition)  I've been amazed to learn the story of her and daughter Sienna's love-filled daily labour of life.  I asked her to write something for Webdiary about their lives.  Be prepared to feel dismayed that such a sad diary can be written in 21st Century Australia

Hon. Jennifer Rankine MP

Minister for Families and Communities

Minister for Disability

GPO Box 1563

ADELAIDE  SA  5001

Dear Minister

Re:  Plea for Self Directed Funding

I am writing to request self directed funding for the care & equipment costs of my daughter, Sienna Walker-Smith, who is severely disabled & has chronic health conditions.

I have attached these documents:

1. A Day in Sienna’s Life
2. Routine for Sienna’s Day
3. Sienna’s Nutrition Regime
4. Additional Expenses

I ask you to go to these links to find out more about the story behind this plea:

1.  http://history.dircsa.org.au/stories/jewels-and-sienna/

2.  http://www.adelaidenow.com.au/news/south-australia/disabled-children-forced-to-wait-years-for-essential-equipment/story-e6frea83-1225812582467

4.  http://www.adelaidenow.com.au/news/south-australia/three-year-wait-for-disabled-child-assistance/story-e6frea83-1235950349669

I find whenever my daughter grows out of a piece of equipment, I donate it back to the equipment recycling program at Novita Children’s Services, & they are not replaced. 

Some of the things Sienna have been waiting for are:

1.  Communication Device, computer based

2.  Sienna was provided with a walker, which is kept at school, I cannot fit it in my car and it is too big to use at home.  I asked 2 years ago from Novita for a Grillo Walker, however Novita have not found one of these for us.  I asked for one of these because it collapses and can be transported easily and it can be used at home as well as school.

3.  Sienna requires a bath chair, I have been told by the Novita therapist that they are not available because no one manufactures them.

4.  Sienna received funding to modify a recycled standing frame, it was sent to her school, and never gets used, as the school told me they don’t have time to use it.  I asked the physiotherapist to courier it to home and she said she wouldn’t because it wasn’t safe.  We have been waiting several months for this to happen.  The physiotherapist at Novita has told us she is too busy to see Sienna at home.

5.  I have asked for a change table to be used in the bathroom, one that can be folded up when not needed, the occupational therapist at Novita tells me they are not manufactured.

6.  I have asked for Sienna’s wheelchair to be modified, we were given a replacement wheelchair, which wasn’t safe, and it fell off the curb of the footpath onto the road, with Sienna in it.  Everytime Novita work on her wheelchair we are continually given this unsafe wheelchair until her’s is ready.  It has taken several months for them to do and is still not completely finished.  I asked Novita to fix the brakes on the wheelchair as, when we were crossing the road, the brakes jammed, and the traffic had to stop and someone had to get out of the car to help us get it going again.  Novita told me they fixed it, but we were out shopping the other day and it jammed up again, I wasn’t able to move the wheelchair & Sienna was stuck in it.  I would like Novita to fix the brakes on Sienna’s wheelchair properly.

Other reasons I ask for Self directed Funding are:

1. The coordination of appointments with Therapists is very difficult because they do not communicate before hand in advance when they are visiting the school.  I am not aware of what they are doing with Sienna, and I don’t get a chance to work with them.  As the therapists do not visit Sienna at home only at school. 
2. I cannot access therapy to assist Sienna to walk, communicate, for her vision or hearing.  I have been told by CanDo4Kids that they will not assist because Sienna received services from Novita, but Novita do not provide support or assistance for vision & hearing, only Sienna’s physical disabilities.
3. I would like to be able to access equipment when we need it.
4. I would like to be able to access therapy when we need it
5. I would like to be able to access respite when we need it.  I was told that we would be able to access emergency care were something to happen to me.  However on a Sunday, a friend had to drive me to hospital as I had chest pain, and I phoned CARER after hours assistance number and I was told I would not be able to access any emergency respite, because no one was registered to care for her, even though Carer Support & Respite Centre said there would be. I currently have no credentialled care workers who can care & provide support for Sienna.
6. I am an artist, I do stand up comedy, I play ukelele, I do photography & I write.  I manage to do these things with great difficulty.  I asked Novita for some funding for respite so that I would be able to attend ukelele sessions, as I was given 10 hours a month originally for respite.  I was very greatful for this time and I would spend it taking my oldest daughter to scouts and picking her up from scouts once a week.  I then pleaded with Novita to be able to do study I needed more funding hours.  I was also injuring myself as a result of lifting Sienna.  I was then given 20 hours per month.  This started towards the end of last year.  I have been doing ukelele, stand up comedy, painting, photography & writing.  I recently won an award for one of my photographs coming 2nd place in the Botanical Gardens photographic competition.  However recently the care agency, who were providing the support workers, were not showing up to do the work, and when I questioned this they told me that I was lucky to have them, as they were very busy, and they left my daughter unattended, without letting me know, whilst I was in the shower.  They left the job.  I asked them not to come back, now we have to start again to find care workers to assist.  I have asked Novita to help with this.  I have been given 2 hours each day over Saturday & Sunday between 4pm to 6pm.  When the care worker arrived she told me, she needed to have two care workers to look after my daughter, and she wanted to leave early as she was late for a wedding.  This is unsatisfactory, as I need the care worker to stay for the entire shift.

How I Manage:

1. I do without, it is very difficult. 
2. I paint, do photography, do stand up comedy, play ukelele, they are happy things to do, and are very healing. 
3. I study at the Adelaide Centre for Arts one night a week, and I need this to continue. 
4. I don’t sleep very much, as there is too much work to be done and I have to sleep lightly for Sienna, in case she wakes. 
5. I see a physiothapist for my pain management from once a week to three weeks, I have a massage once a month, I go to hydrotherapy 2 a week, when Sienna is at school, however when Sienna is sick, like she was for the past two weeks, I am not able to access any of this, because there is no respite. 
6. I play ukelele in the hospital, at appointments and Sienna is an inpatient, it heals Sienna & myself. 

What I need straight away

1. One on one care to help with Sienna. 
2. Respite so that I can study & work part time, as I have a studio and I need to get to it, to prepare for three exhibitions coming up in the next three month.  .
3. I need a bath chair for Sienna. 
4. I need Sienna to have her standing frame. 
5. I need Sienna’s wheelchair to be fixed & modified with head support. 
6. I need Sienna to have a communication device- computerised. 
7. I need Sienna to have a walker which can be used at home & school & out and about in the community. 
8. I live in a Housing SA property & I need the ramp, front door entry & inside bedroom wall to be fixed, as the plumber recently put wholes in these places and no one has yet fixed them, even though I put in a request a week ago. 
9. Jelly bean switches, so that Sienna can access switch toys from the Novita Toy Library. 

Wish List

1. Holiday. 
2. Change table in the bathroom that can be put up and down. 
3. access to physiotherapy to help Sienna walk. 
4. access to speech therapy to help Seinna to communicate with the outside world. 
5. access to vision & hearing support, so that people working with Sienna can work with her fully. 
6. continual respite, without fear that a contract will end at any minute. 
7. personal care support for bath times, getting ready for school time. 
8. help with cleaning/ domestic duties, so that I can focus on Sienna.  
9. Christiania special purpose built tricycle to carry a wheelchair, so that I can take for a bike ride, she can feel movement, breathe in fresh air & connect with her community. 
10. To access a physiotherapy, occupational Therapy, Speech therapy which assists me in caring for Sienna & myself, hands on. 
11. Access to massage therapy once a week to help my body hea.  l
12. Access to hydrotherapy & pilates to strengthen my core muscles. 
13. Respite so that I can play ukelele & do stand up comedy, as I cannot get a normal baby sitter to look after Sienna, it is 40 an hour to attain a credentialled care worker through an agency. 

I look forward to your reply as soon as possible, as i speak on behalf of all family carers & those they care for, to improve the quality of their lives, they need the implementation of the National Disability Insurance Scheme & Self Directed Funding.

Yours sincerely

Jewels Smith

Sienna’s Mum

****** ATTACHMENTS *****

A day in Sienna’s life

As At June 2011

Our little Sienna is 9 in July. 

Sienna is unable to hold onto you, whilst lifting, so you need to hold on to her and provide her with support.  Sienna cannot stand unsupported; she requires assistance to bring herself up to standing and then needs to be supported around the hips, and needs to be assisted to sit down again. She is unable to pull herself up from laying down position to sitting and needs assistance by you giving her a hand and then she will pull herself up.

When Sienna needs a nappy change, or needs to go to the toilet, she used to be able to make her way over to the toilet on her button, but now she cannot do this.  Sienna also used to be able to pat herself on the back and nappy when she wanted to go to the toilet.  This stopped a few years ago, because when Sienna is at school they have such a regime, they only take her to the toilet when the staff is free or if she has done something in her nappy.  At home, I toilet Sienna after every nutrition and on waking, she is mostly successful on the toilet.  Sienna cannot speak.  When this happens, the assistance needed is to kneel down with Sienna and put one knee up, rest Sienna in a standing position over your knee and pull her pants and nappy down and then lift her onto the toilet which is behind her.  Sienna may take up to 15 minutes on the toilet.  It is important to wait for a wee.  When this happens congratulate her.  Now have her nappy ready on the change table, I may have put an inserted pad inside it, if we are going out and there is no access to appropriate toilets.  Then have a wipe handy and lift her up to standing position with her resting on your knee.  Wipe her bottom and then lift her up onto the change table.  Sienna will lift her bottom up, you need to ask her and then do up her nappy and then sit her up and then stand her up, then pull up her pants. 

When giving Sienna a bath, Sienna needs assistance to get undressed.  Her nappy and clothes need to be ready.  Her hearing aids and glasses needs to come off.  Her hearing aids need to be turned off.  The cloth around her gastrostomy needs to be taken off.  I lift her from her wheelchair onto the toilet chair, then wheel her to her bedroom, undress her in there and then wheel her to the bathroom, where her bath is ready, it’ must be warm.  Sienna does not like to be naked, so I wrap a towel around her and her to the bath and lift her into the water.  Sit her on the non slip bath mat and there is a foam knee pad for you to kneel on whilst giving Sienna a bath.  Sienna can sit in the bath, with your hand behind her.  Sienna needs to have her mouth washed out and her teeth cleaned with a flannel which is wrapped around your finger and nuk toothbrush.  When doing this you will need to support her by holding your hand behind her head and talking to her as she looks at you.  Sienna does not like this.  This is to get the asthma medication out of her mouth and to clean her teeth.  Sienna needs assistance to get out of the bath.  Have a towel open and tuck this under your chin and then lift her into it and then wrap it around her.  Then lift her onto the toilet chair and wheel her into her bedroom, where the heater has been on & keeping the room warm, in winter. 

After drying Sienna, I give her a massage, put on her pajamas, then lift her to the change table.  There is a lifter available, however Sienna feels uncomfortable in this and it takes an hour to bath her with using this system.  I put her nappy on and apply small amount of barrier cream around gastrostomy site and put a cloth around it.  This is so the plastic from the button does not rub on her skin.  When Sienna is fighting an infection off her gastrostomy site gets quite sore and needs to be cared for and monitored.  I give her a lavender massage.  As Sienna has dry skin and this helps with that and protecting her immune system and assist her sleep routine.   When Sienna has a cold I apply a small amount of Vicks baby rub onto her chest and back of lungs.  Then I dress her.

I do Sienna’s hair by spraying a small amount of no more tangles into the knotted parts and placing her in her wheelchair, and giving her some fun toys to play with, this will distract her.  Then gently combing out from the ends and holding the hair near the scalp.  Sienna can get upset by doing this.  I put her hair off her face up in a pig tail.  I then place her glasses and hearing aids in both ears.

this is the morning .....

*********

Sienna has Care Plans for Health Management, Asthma, Epilepsy, Sleeping, Continence, Oral Eating and Drinking Care Plan.  These are kept in a pink folder which accompanies Sienna wherever she goes.  Sienna has feeding regime which is also in the pink folder.  There is also Medication Plan’s for her medication: Ventolin, flexitide, Oxygen, Seravit Paediatric, Paraffin, Lactulose, Epilim, Paracetamol liquid, carnitine, keppra, topamax, lactulube eye ointment, cellufresh eye drops, signed by Doctor in her blue folder.  Sienna also has a small A5 book with is called ‘About Me: Sienna’, which gives more information about Sienna’s likes and dislikes etc.

Routine for Sienna’s Day dated 17th June 2011 Version 3

Time

Activity

5.45am

• Give medications (Epilim, carnitine, topamax, keppra with water flush)

• wash out syringes & recommence pump

6 am

• Turn off overnight pump if finished. give flush.

6.05 am

• Disconnect pump, take into kitchen, Wash out overnight flask. Throw out overnight line and get a new one. Prepare breakfast of 160ml of milk, warmed in home microwave 40 seconds, then with 20ml of seravit dissolved in some of the milk and then added together and shaken, along with ¾ tablespoon benefibre.

6.15 am

•  Prepare feeds for the day

6.25 am

• Set pump to 140ml per hour place line in pump & prime it

6.35 am

• prepare lactulose in a small amount of soya milk

6.40am

• Dishes & breakfast, put aside some boiled water to cool for Sienna.

7.30am

• Give Sienna her eye medication

7.35am

• turn off oxygen

7.40am

• Get Sienna clothes ready for when rising out of bed

7.45 am

• Get Sienna up, if not already awake.  Disconnect oxygen and tubing from button.  Take the side of the bed down, uncover her, wrap the line up under her singlet, then lift her on to the toilet chair..

8 am

• Give 2 puffs of Seretide via spacer and Ventolin if needed.

8.05 am

• Get Sienna dressed whilst she is sitting on the toilet

8.07 am

• Check Sienna’s bed and if wet, put wet bedding in washing machine and start cycle.

8.10 am

• clean Sienna’s glasses and put them on with her hearing aids. Make sure Tallara is dressed for school, then lift her onto her wheelchair.

8.20 am

• Pack Sienna’s bag, make sure Tallara is ready for school, put bags in car

8.25 am

• Take Sienna off toilet and put her nappy on.  Comb her hair and put it up.

8.30 am

• Put Sienna in car and take Tallara to school.

8.45 am

• Get Sienna out of the car and take Tallara across to her class room.

9 am

• Get Sienna into the car and go home.

9.20 am

• Get Sienna out of the car and inside home.

9.30 am

• Give Sienna her 160 ml feed & lactulose

9.40 am

• Give Sienna a pillow to put her head on

9.55 am

• Do the washing & hang it up & put it away

10.10 am

• Read Sienna stories

10.20 am

• When feed finishes, disconnect it & give a flush…then lift her down, pull her nappy down and lift her up onto the toilet chair

10.25 am

• Sit by Sienna as she doesn’t like to be left alone whilst on the toilet.

10.35 am

• Take Sienna off the toilet when she has done a wee, this maybe before this time.  Put her nappy on.

11 am

• Take Sienna for a walk, take Sienna’s spectacles and hearing aids off and put her sunglasses on if it is sunny outside.  Take care when walking, checking Sienna has still got her glasses and hearing aids on if they where on when you commenced walk.  Sienna sometimes throws them off, because they get dirty, or the sun glares cause discomfort to her eyes, or the aids have increased feedback.

11.45 am

• Get home and put Sienna on the floor to let her play with her musical toys.

11.50 am

• Get Sienna’s 160ml milk ready for lunch.  Then pour this into flask and prime line.

12 noon

• Put Sienna in wheelchair. Then give her milk via button.  During this time sing songs and talk to Sienna.

1 pm

• When pump is finished, wash out flash & bottle

12.25 pm

• Wash out tubing etc and have lunch and make necessary phone calls re: Sienna’s appointments etc.

12.35 pm

• Lift Sienna off wheelchair & onto toilet, Check Sienna’s toilet, that the screws on the side are done up tight. , if done wee take her off toilet and put her nappy on.

12.40 pm

• Place Sienna on the floor with her kitchen utensils and I empty the toilet and wash it.

12.45pm

• Give Sienna asthma medication if needed via spacer

1.00pm

• Do some exercises with Sienna: on the big ball and some stomach strengthening exercises and exercises for her lung.

1.30pm

• Do some standing and walking exercises with Sienna.

1.50 pm

• Put Sienna in wheelchair and give her piano for play whilst sitting there Give Sienna 160ml milk pre made, via pump, need to prime line first.

1.55. pm

• Get Sienna’s 160 ml milk ready.

2 pm

• Give Sienna her milk, via pump feeding and during this time sing and talk to her.

2.20 pm

• Take Sienna out of her wheelchair and put her on her toilet.  Wash out tubing.  Bring washing in from outside. 

2.30 pm

• Take Sienna off her toilet if she has done a wee and put her nappy on.  Do some walking with Sienna, as she walks back to the wheelchair,

2.40 pm

• Empty Sienna’s toilet and wash it.

2.45 pm

• Take Sienna outside whilst I hang out the washing.  Do this several times.

2.50 pm

• Bring Sienna inside and place her on the floor, sitting up and let her play with blocks and drum.

2.55 pm

• Put bags in car, and get ready to collect Tallara from school.

3 pm

• Put Sienna in car and go collect Tallara from school.

3.15 pm

• Take Sienna out of car and get Tallara from class room.

3.25 pm

• Put Sienna in the car and Tallara’s bag and go home.

3.40 pm

• At home take Sienna out of the car and get the girls inside and disconnect the line from her button, put Sienna in on toilet  & then take her off & put nappy on her & then put her back in her wheelchair, clean out Sienna’s toilet..

3.50 pm

• Give snack to Tallara and get her set up to do her homework.  Get Sienna 160ml milk ready with 25 ml paraffin & benefibre

4.00pm

• Give Sienna her feed.  During this time sing, talk to her and help Tallara with her homework.

4.20 pm

• Take Sienna, unpack Sienna’s school bag & nutrition bag

4.25 pm

• Wash tubing and start getting dinner ready.

4.30 pm

• Give Sienna asthma medication.

4.40pm

• Cook dinner and tidy up table and assist Tallara with activity.

4.55 pm

• Make Sienna’s bed ready for bed, get her pj’s ready

5.10 pm

• Sienna’s feed finished, disconnect line, put her on the toilet. Clear up the activity she was doing.

5.20 pm

• Take Sienna off the toilet when she has done a wee etc and put her nappy on. Place her on the floor sitting up and give her switch toys to play with.

5.30 pm

• Wash out toilet and get put dinner on the table, check Tallara has done her homework.

5.40 pm

• Sit with Sienna on the floor and sing songs with signing and action movements.  Read her a story and let Tallara ready us a story. Get the bath ready for Sienna

5.50 pm

• Put Sienna on the toilet & get her undressed for her bath, give Sienna her bath, then get her out of the bath, and get her dressed, Sienna usually gets very upset as she doesn’t like getting out of the bath or getting into it, so have a towel handy.  Lift her onto toilet chair and wheel her into bedroom, give her a massage, dress her button & get her dressed into pj’s, then put her nappy on, get her to stand up and walk with her back to the lounge room and then lift her into her wheelchair.

6.30 pm

• Give Sienna 160ml feed of  milk and her medicines (Epilim, keppra, carnitine, topamax) at the beginning of the feed and flush with 20ml water.  Tallara eats her dinner at the same time and we all talk about the day.

7.00 pm

• Clean Sienna’s toilet, and empty bath, put dirty washing in washing machine

7.20 pm

• Wash tubing out and  prepare overnight feed for Sienna.

7.50 pm

• Finish Sienna’s feed, leave the personal line in and take the pump & flask to kitchen.

8 pm

• Lift Sienna from wheelchair to toilet chair & stand with her, then take her to bedroom.  

8.10 pm

• Lift Sienna from toilet chair into bed, put  her night time nappy on and put insert pad inside. Pull up the bed rails, and tuck her in firmly, giving her lady bird & bee beanie’s to hold down the sheets from coming out.  Give her elfie & dolly to comfort her.

8.20pm

• Take Sienna toilet to the bathroom & empty it, wash it.

8.25pm

• Set up  pump for overnight water and juice, set 750ml liquid on 75ml per hour

8.30pm

• Turn on Sienna’s oxygen cylinder and place oxygen specs on Sienna face up her nostrils, they need to have small amount of transpore tape on either cheek, as Sienna often tries to pull the specs off.  Then put the light on the corridor on, and her relaxing music on. Give Sienna a goodnight kiss..

8.40 pm

• Get Tallara into bed, do house work, clean up.

Written by Sienna’s Mum: Jewels Smith  17 June 2011

Sienna’s School Day Nutrition Regime as at 17 June 2011

Formula: Nutricia Karicare Soya

100ml boiled water + 10 scoops formula = 150ml liquid formula

Add 20ml of this to each feed of natural soya milk

(it maybe best to make up 2 x 40ml boiled water + 4 scoops formula then add these together, as it is easier to mix)

(* Sienna has 6 x 160ml of nutrition each day this is made up of:

160ml natural soya milk (So Good or Vitasoy) + 20ml  karicara soya formula)

Time  Nutrition/feed  Water   flush  Medication                                                         Other notes

5.45 am

Whilst there is  milk going through pump, put it on hold and administer medication then recommence pump

20ml (in total)

¨      topamax tablet, mix into 6ml water to dissolve and crush into water, with 5ml water flush;

¨      Epilim with 7.5ml water flush;

¨      carnitine with 3ml water flush;

¨      keppra with 4ml water flush;

¨     

6 am

Stop continuous overnight feed

¨      Give via feeding line

¨      Reconnect feeding line to pump line and recommence feed

¨      Give this whilst Sienna sleeps

 Overnight pump finishes

7.45 am

Wake Sienna up for school.

¨      Before waking apply eye medication

¨      Give seretide via spacer and ventolin when needed.

¨      Apply paw paw ointment, barrier cream & clean gauze cloth around button site with use small amount of tranpore tape to hold gauze in place.

¨      Disconnect oxygen

¨      put her on toilet.

¨      Brush her hair

¨      Nappy on

¨      Place in wheelchair

¨      Hearing aids in place

¨      Put her school uniform on

¨      Pack her school bag, nutrition & meds

9 - 9.15am

When Sienna arrives @ school:

¨      Toilet after each nutrition.

¨      Place glasses on, connect FM system

¨      Place AFO’s on for standing frame

9 – 9.15 am

160 ml *soya 20ml

lactulose

Use 500ml flask for day nutrition Via pump @ 140ml per hr

Toilet Sienna

11.30 am

160 ml *soya 20ml Via pump @ 140ml per hr

1pm

Apply eye medication

Toilet Sienna

2 pm

160 ml *soya 20ml Via pump @ 1400ml per hr

Toilet Sienna

4 pm

160ml *soya 20ml Benefibre & parrafin Via pump @ 140ml per hr

5.35 pm

seretide via spacer & venoline as needed

Bath time

Apply paw paw ointment, barrier cream & clean gauze cloth around button site.

For Bath:

¨      Hearing aides and glasses off.

¨      When washing hair, put ear moulds in ears, put tape over ear moulds to hold in place.

¨      Clean teeth and wash mouth out with wet face washer.

6.30 pm

160 ml *soya 20ml

Tomapax mix into 6ml water; Epilim; Carnitine; Keppra

¨      Via pump @ 140ml per hr

¨      Leave Micky feeding tube in place, tuck under singlet for transfer to Toilet after feed;

8.pm

Bed time

Oxygen as per medication order.

Use Transpore tape to hold specs in place on side of face

¨      Put booster pad in nappy;

¨      Sienna needs bed head to be elevated

¨      Sienna sleeps in sleeping bag

¨      Place weighted blanket on either side on top of blanket to help her to go to sleep

¨      Sienna sleeps with Elfie and dolly toy;

¨      Put sleeping music on

8pm

200ml juice 160ml *soya 260ml warm water

¨      Seravit, mix into 10 ml warm water add to soya milk;

¨      Benefibre add to milk

¨      Use 1 litre flask

¨      With the 220ml of water make 100ml of this boiled water so that the liquid is at room temp and not too cold, as if it is too cold it will wake Sienna up.

¨      Give via pump 75ml per hour this will finish approx. 6am.

¨      When finished in morning flush with 20ml of water and rinse flask out.

on Weekends & school holidays or when Sienna is sick & at home with me

6.45 am

20ml

¨      Epilim, keppra, topamaz, carnitine

¨      Hold pump and administer medicine and then continue pump

7 am

Turn pump off  Rinse out flask,

¨      Rinse out micky tube

¨      get new pump line for the day

7.30 am

  Asthma medication:  seretide every morning, via spacer and ventolin when needed

¨      Get Sienna up

¨      Disconnect  line from button

¨      Apply paw paw ointment and barrier cream around button site

¨      Apply gauze cloth with small amount of tape around button site.

¨      Get Sienna onto toilet

¨      Brush Sienna’s hair

¨      Get Sienna dressed into her school clothes

¨      Put nappy on Sienna

¨      Place Sienna in her wheelchair

¨      Place Sienna’s hearing aids in place in her ears, put her clean glasses on.

¨      Use 500ml flask for day nutrition

9 am

160ml *soya 20ml

¨      lactulose

¨      Give via pump @ 140ml per hr

Toilet after nutrition

11.30 am

160ml *soya

20ml Via pump @ 140 ml per hr

Toilet after feed

2 pm

160ml *soya 20ml

Via pump @ 140 ml per hr

Toilet after feed

4 pm

160ml *soya 20ml

Benefibre & Parrafin

Via pump @ 140 ml per hr

Toilet after feed

5.35pm

flexitide via spacer & ventolin as needed

Bath time

Apply paw paw ointment, barrier cream & clean gauze cloth around button site with use small amount of tranpore tape to hold gauze in place.

For Bath:

¨      hearing aides and glasses off.

¨      When washing hair, put ear moulds in ears, put tape over ear moulds to hold in place.

¨      Clean teeth and wash mouth out with wet face washer.

6.30 pm

160 ml *soya 20ml (in total)

¨      4 tablet topomax mix into 6ml water with 5ml water flush;

¨      Epilim with 7.5ml water flush

¨      Carnitine with 3ml water flush

¨      Keppra with 4ml water flush

Via pump @ 140 ml per hr

At the beginning of the feed, put it on hold and administer each medication as per medication plan and then reconnect feeding line to pump line and recommence feed.

Toilet after feed

8.pm

Bed time

Oxygen as per medication order.

Use Transpore tape to hold specs in place on side of face

¨      Put booster pad in nappy;

¨      Sienna needs bed head to be elevated

¨      Sienna sleeps in sleeping bag

¨      Place weighted blanket on either side on top of blanket to help her to go to sleep

¨      Sienna sleeps with Elfie and dolly toy;

¨      Put sleeping music on

8pm

200ml juice 160ml *soya

260ml warm water

  Seravit, mix into 10 ml warm water add to soya milk;

¨      Benefibre add to milk

¨      Use 1 litre flask

¨      With the 260ml of water make 100ml of this boiled water so that the liquid is at room temp and not too cold, as if it is too cold it will wake Sienna up.

¨      Give via pump 75ml per hour this will finish approx. 6am.

¨      When finished in morning flush with 20ml of water and rinse flask out

This is a chart that I did up for Sienna’s Expenses in 2007, since then it has increased & Sienna requires more medicines etc..

Additional Expenses for Sienna Walker-Smith as at July 2007

Disabilities

Items

Cost                           Month

Year

Unable to eat or drink requires nutrition via gastrostomy

Feeding tube 3 per year

Cleaning Brush for tube 2 per year

Pump hire

Bottles to transport milk/juice (8 per yr)

Bottle seal (8 per yr)

Bottle Brush 1 per year

Cloth protector around site script

Special tape to hold cloth in place 2 per yr

21.00 each

16.00 each

15.00 per mth

  8.00 each

  3.16 for 2

   8.00 each

   4.70

   4.70

15.00

  4.70

  4.70

 63.00

 32.00

180.00

 64.00

  12.64

   8.00

  56.40

   9.40

Unable to eat or drink requires extra nutrition for growth.

1.2 litre soya milk a day

200ml per day juice (high fibre)

50ml prune juice per day

2.00 each

3.00 for 2 litre

5.79 for 1 litre

60.83

  6.50

  6.00

729.96

  78.00

  72.00

Unable to walk or stand requires continence products for toileting

Nappies needs 7 a day

Disposable Change mat 1 day

Booster pads (eg Tena) 1 night

Wipes for nappy changes

Utility Pad for sleeping and stroller 2 per yr

36.80 for 72

3.99 for 4

5.40 for 8

4.13 each

13.00 each

55.20

30.34

20.53

 8.26

662.40

364.08

246.36

 99.12

 26.00

Hearing Impairment

Batteries for aids and toys that make sounds

Hearing Aids

80.20 for 3 months

320.00

 26.25

Hypotonic Muscles

Massage oil for muscles daily

Special seat for trolley and chairs

Physio 1 per month

8.95 for 125ml

55.00 each

13.40 gap

8.95

107.40

 55.00

160.00

Sleeping Disorder

Mattress Protector

Gro bag for sleeping 2 per year

Foam Underlay

23.80 each

75.95 each

45.04 each

 23.80 151.90

45.04

Myopia (short sightedness)

Spectacles Jan 06

Lenses Nov 06

103.95

208.80

103.95

208.80

Memberships

Novita Children’s Services

Toy Library memberships (Unley & Prospect)

Association for children with Disability

10.00

50.00

  5.00

Transport

To attend appointments to specialists and treatment for Petrol

38.62 per mth

38.62

463.44

Medications for Chronic Health Management

Asthma

Seretide prescription

Ventilin prescription 10 per year

Spacer/Mask 1 per year

   4.70

   4.70

 15.96

  4.70

  56.40

  28.20

 15.96

Constipation

Benefibre 168g per month

Lactulose prescription

Paraffin prescription

 12.76 each

   4.70

   4.70

12.76

  4.70

  4.70

153.12

   56.40

   56.40

Nutrition

Saravit prescription

Lifestream minerals 100ml per mth

   4.70

 36.00 for 500 ml

  4.70

  7.20

   56.40

   86.00

Epilepsy

Epilum prescription

   4.70

  4.70

   56.40

Reflux

Aloe Vera  200ml per mth

 12.76 for 500 ml

  6.38

   63.80

Central Sleep Apnea

Oxygen nasal specs 4 per year

   4.70 script

   18.80

Middle Ear Infections

Ear, Nose and Throat Specialist (5 visits per year)

Antibiotics Ciproxin ear drops 5 per year

  15.00 gap per visit

   28.95

   75.00

  144.75

Medical Tests

Blood tests (hormonal growth)

50.00 gap fee

 50.00

Respiratory Disease

Olive leaf elixir 100ml

Antibiotic prescriptions 8 per year

22.20 each

  4.70

 22.20

 45.60

Carnitine Deficiency

Carnitine enzyme medicine prescription WCH

  4.70

 56.40

Totals

5475.77

from 'The Advertiser' December 22, 2009

from 'The City Messenger' October 20, 2005

from the Front Page of 'The Advertiser' December 22, 2009

from 'The Advertiser' November 10, 2010

from 'The City Messenger', August 21, 2008

from 'East Torrens Messenger', November 6, 2008

receiving the Peter Edwards Memorial Award 2005 for my work in improving support for families caring for a child with a disability

on the steering committe to put this in place by the State Governments, 'Carers Recognition Act' in 2004

Carers Recognition Act was put through parliament in 2004, I was on the steering committee for this with Carers SA