In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Tuesday, 11 February 2014

Action planning to achieve your goals.

"If we don't change, we don't grow.
If we don't grow, we aren't really living."
— Gail Sheehy
Alhamdulillah, I am so grateful to Allah for His guidance. It it so much better when you have a clear vision of what you are trying to achieve before you take the action to reach to goals.

Mujhee on the liberty swing at Carson Street School.

Remember Mujhee wrote about her goals for this year. Here is a quick review of what action she trying to do to achieve her goals.

  • I want to be able to sleep at night between 9 pm to 7 am.
Mujhee is unable to go to sleep at a regular time every night. She needs to change positions up to 4 times each night. Sometime she is very distressed at night with temperature and seizure activities.There are some nights where she will not sleep at all because she was on midalzalom during the day to stop her prolong seizures and make her fall asleep straight away. When her sleeping pattern changes, it takes her couple of days or more to get back to the routine.

Alhamdulillah, she is down to one addministation of midalzolam in a week since her last anti-seizures medications review late last year. Prior to that review she  took up to 5 times of midalzolam during a week. Alhamdulillah her prolong seizures has decrease and I'm hoping for seizure free. Read about the review of her anti seizures medications here. The next review is on the 14th February 2014 in sha Allah.

She is seeing a Sleep Therapist from TCCP - The Center for Cerebral Palsy and decided some changing and trial of the Invacare Softform Premier Active 2 and the mattress overlay to regulate her body temperature when sleeping. Her sleeping has gotten so much better since the trial. Although she still has problems to get to sleep early at a regular time, I don't have to change her position as much as before. Before I would change her position at night up to 4 times but now it has go down to one. Alhamdulillah. Even though I don't mind doing it because it make you feel better once I get of of my bed and change her position then she will go back to sleep. Otherwise she would keep calling me until I come. In sha Allah we're definitely going to get the mattress and overlay for Mujhee. And please remember her in your prayer.

I also do ABR between 8 to 9 at night. I found that it keeps her muscles relaxed and encourages deep breathing to help sleep. I am so happy that she doesn't mind ABR machine on her through out the night. There are so much I would like to write about ABR but I just don't have time. In sha Allah, may be I will write after the ABR training this March.

  • I want to try the Ketogenic diet as a treatment for epilepsy. 
Last year Mujhee's seizures went skyrocket. She was so sick and stayed in bed most of her time. She missed a lot of appointments and her school too. Basically she had no quality time because of the uncontrollable seizures. Her medications was revise every 2 months last year. She's on Midalzolam, Tapomax, Clonazapam and Keppra. Towards the end of last year someone mention about Ketogenic diet, a treatment for epilepsy so I discuss with her Neurologist and he referred us to the Dietetics. She has the appointment with the PMH dietician on the 24th February to discuss the treatment, in sha Allah. I'm so excited for Mujhee about this. I hope her seizures will only get better.

Alhamdulillah,with the help from our Muslim community we managed to secure the training for this year. May Allah bless our community for coming together and help us. It is like a dream come true and I am looking forward to this coming training on the 15th - 19th March, 2014. May Allah give me the strength to make it happen.Now it's time to do the ABR video report for this coming training.

Mujhee will be attending her first Gemstones Youth Group on the 16th February 2014 in sha Allah. The group meeting every third Sunday of the month.

Our community is awesome. They are organizing the fundraising for Mujhee with a family bbq and soccer match and games for the kids on 23th February 2014 at the Thomas Moore Park, Wilson between 10 - 1 pm. Insha Allah Mujhee will be there to meet our wonderful community and I think it is a great way to understand disability and each other. There will be a representative from TCCP- The Center for Cerebral Palsy to answer questions about Cerebral Palsy and what can we do to support people with CP.

IEP meeting at Mujhee's school, Carson Street School, will include the discussion on her complex communication needs on the 19th February and a visit to ILC with Mujhee's speech therapist to see what options she has for her communication needs on the 27th February in sha Allah.

  • I want to upgrade my wheelchair.
We'll be looking at it sooner or when needs, insha Allah.

I'm still thinking about what option we can do as doing nothing is not an option. Insha Allah there is a way and we're going to find it out soon.  Any suggestion would be much appreciated. Please leave comments.

In sha Allah with the help from Allah, let's make the reality come true. Always remember it is not what I can do, but what Allah can do for me.

Thursday, 30 January 2014

Lonely: Connecting with the Muslim community.

N: I'm asking you a question - You need to tell me Yes or No - Go to categories -  feelings

Mujhee: not, don't can't, feel, love -No
happy, embarresed, hate - No
worried, confused - No
angry, mad, grumpy, frustrated, sad - No
scared/frightened, upset, jealous - No
proud, lonely - Yes
proud -No
lonely - Yes

N: chat words - help

Mujhee: I want (do an activity) - outside activities - garden

N: I'm asking you a question - What do you think? (garden)

Mujhee: I like this - nice

The other day when Mujhee's sister, N, asked her about her feelings, she told her that she was lonely. N asked how she can help her. Mujhee said that she can help her by taking her to the garden. N took her to the backyard and asked her what she thinks. She thought that it was nice.Sometime a simple thing you do makes a big difference in other people's life. Masha Allah, I'm so proud of you, N, for your unconditional love and care for Mujhee.

I'm so glad and thankful that Mujhee has sisters, family and friends who value and care for her feelings and are also willing to help her in anyway possible. There are some barriers to break but it is possible to open the door of possibility. I'm also grateful for PODD communication book, without it Mujhee's voice could never be heard.

Although it made me upset to know that she was lonely, it helps me to understand her better. It was very wrong for us to think that just because she can't take care of herself, can't communicate verbally and is bound in the wheelchair, she has no feelings and needs. I think many people don't value her because they think she has nothing to say.

The way that people with disabilities are treated in this world is shameful and disgusting because we don't have time to understand how we can help them. We need to be aware of their stories so we can break the barrier and open the doors to inclusive in the mainstream society  .

It happens that the Muslim Youth Group called the Gemstones is finding new members for this year so I decided to ask them if Mujhee can join in so she won't feel left out or alone. Alhamdulillah she got accepted so she could attend the group once every month. Alhamdulillah, I am so thankful that the group are very positive and more than willing to include her. I'm so excited for her and in sha Allah it will give a lot of benefit to her and the group.

Without a doubt, I can see that someone like Mujhee can be very lonely but there are ways to help her like joining the youth group. At the beggining maybe the group don't feel the connection with her because not many of them understand her. Understanding someone takes time. Understanding someone who has multiple and complex support needs like Mujhee usually take longer time. I hope the group will give their time to get to know her better so they could feel the connection.

I believe the equality in all people regardless of their limitation. As human being we all have our limits whether we are a people of disability or not. So Mujhee deserve no less when you realize that we have more in common then any dividing differences.

In sha Allah, Mujhee just need a bit of your TIME to understand her otherwise she could feel lonely and deeply excluded from the society. Is a bit of your time is too much to ask?

Monday, 20 January 2014

My 2014 list to do

Well-being. Connection. Kindness.

These are my goals in three words. With these words in sha Allah, it will be easier for me to focus on my goals everyday in my dua, when I pray to Al Mujeeb, The Responder to Prayer.

Ok, bear with me for a bit, while I dream of what I am going to do this year, in sha Allah.

In sha Allah, I will do it. It's not what I can do but what Allah can do for me.


Sunday, 19 January 2014

Aromatheraphy Blends: Using your sense of smelling for a better well being

Sensory system is a part of nervous system responsible for sensory processing information. Vision, hearing, touch, taste and smell are including in our complex sensory system. Olfaction is the sense of smell.  Sense of smell can effect emotional behaviour. Different scents can stimulate the brain and trigger the pictures and the feeling associated with that particular smell. We all know how the smells of food can stimulate appetite. I cannot smell rendang tok without thinking about my mother who always cook it as a special treat for Hari Raya or Eid.

When I did skin care workshop on how to make natural skin care products a while ago I learned aromatherapy. In natural skin care product essential oils are used instead of fragrance oils just because the essential oils are natural while the fragrance oils are synthetic. Although fragrance oils are cheaper than essential oils they are artificially created that contain artificially substance. Essential oils are natural chemicals that are extracted from plants and contains therapeutic benefits.

In aromatherapy, essential oils are used for therapeutic purpose. Some essential oils are used to stimulate or relax the brain frequency. When scents are inhaled, the smell travels into lymbic system, which is a part of brain that controls mood. When lymbic system is stimulated, endorphins are released into your blood stream making your mood lifted and leaving you in the state of calm.

Stress can have negative impact on immune system. It stop our body ability to protect disease. Aromatherapy can boost the immune system by the release of endorphins or mood elevating substances.

Studied has found that good smells lower stress and regulates mood and emotional. The smelling of lavender essential oil calms the nervous system and relaxes the body for better sleep. Click here to read mere about the study.

Citrus essential oils like sweet orange, bergamot, neroli, lemon, petitgrain and grapefruit have an uplifting smells that is helpful for reducing depression and elevate your everyday.

These are the essential oils that I blends and we use at home. Most of these blends I mixed them for Mujhee's aromatheraphy like the Miraculous Mujhee and Mujhee's Muscle Relief.

Miraculous Mujhee

This blend is a special blend to guide an extraordinary, miraculous and outstanding into life. It creates special unimaginable moment that we carry in our hearts and exceptional way to honour others that touch our life.

  • Frankincense
  • Patchouli, 
  • Sandalwood
  • Vetiver

Relaxation Blend

This blend slow brain wave patterns to melt away stress, tension and anxiety. It produce a state of relaxation, calm and peaceful. We use it in the bath, spray it in the car and on the linen before sleeping time to get the children ready for bed.

  • Lavender
  • Sandalwood
  • Bergamot.

Brain Power

This blend can stimulate your brain capability to activate concentration on work and study. We used it when doing therapy sessions with Mujhee and when the children are doing their homework and studying during examination.

  • Lemon myrtle
  • Peppermint
  • Geranium.

Prayer Blend

This blend can be use to help us to see clearly and pay particular attention to your prayer and enhance spiritual. We put 2 to 3 drops on the prayer matt.

  • Frankincense
  • Nutmeg
  • Sweet orange

Energy Blend

We use this blend when we need some motivation to get through the day that wasn't best and keep you moving forward with smiles.

  • Sweet orange
  • Cinnamon
  • Patchouli

Peaceful Sleep

This blend has a calming blend to aid go to sleep and to stay asleep longer.

  • Clary sage
  • Lavender
  • Chamomile.

Breathe Ease Blend

This blend is helpful for respiratory ailments and relieve breathing.

  • Eucalyptus
  • Tea tree
  • Peppermint.

Muscle Relief

This blend will help to ease tight muscles and useful for temporary relief of muscular spasms. We use it in massage oil.

  • Basil
  • Marjoram
  • Lavender
  • Ginger.

Now that you have the essential oils or the blends, in sha Allah, you could use the guide here or here to the best ways of using them safely and effectively.

Insha Allah with the permission of Allah, using the essential oils can effect your emotional behaviour, health and well being.

Note: For food of thought- There are articles about health and medicine, mind and brain in Science Daily.

Thursday, 16 January 2014

Garden Blitz: May Allah grant me Jannah.

Jarrah forrest in Freemantle, Western Australia.
Let me tell you about our home. We moved into this house in January, 2011. I call it "The Green House" as it has green roof tiles. Not only does it have green roof tiles, it's floors and it's walls are all green too. On top of that it has green kitchen cabinets. I felt like it is too green inside but the outside of this house is not so green. Meaning it lacking in green lawn, trees and plants. All I can see is sand, and when the kids entered the house they are covered in dust and dirt from the sand into the house.

On May last year, Mujhee's Local Area Coordinator from Disability Services Commission asked me if we would like to apply for the Garden Blitz. I thought it was a great idea so we agreed and submitted an application. Alhamdulillah, on August we found out that we were picked for the blitz. I felt so overwhelmed like I received a part of Jannah but on the earth instead. Subhana Allah, I wonder how I would feel if I got to enter Jannah in the hereafter. It would be my goal. I'll tell you why later.

Masha Allah, on the end October and early November last year about ten hardworking and enthusiastic people from NS Projects and my lovely family came together to our humble house to do our garden. I was very grateful. When Allah loves you, He guides and helps you. I feel so blessed and can't thank them enough for their great service to us especially and the community. Now, we have to wait and see the plants growing. Here is the link for the news Canning Times, 26th November, 2013 page 32 or Grass is greener for local family - inMyCommunity - Perth, Western Australia

Our backyard.
I like green so much. Green is usually associated with nature, growth and environment. I guess that explain who I am.  I appreciate looking at the beauty of natural greenery. I respect and care for our environment. I am  passioate about improving myself. I love the green dome on the Prophet's masjid in Madinah.

I wish Allah would grant me Jannah so I could  enter it. Why I would want to enter Jannah so much? One of many reasons I would hope to enter Jannah is that I would love to get Mujhee to smile at me when I smile at her. In Jannah, I'll get Mujhee to hug me back when I hug her. I can get her to give me kisses. I can hear her talking to me and telling me how she loves me. In Jannah, I can see her moving around without her wheelchair. In Jannah, I'll to see her sitting by herself and when she wants to change her position while she was sleeping she can do it herself. In Jannah, I would like to see her walking and running freely. I want to see her able to do whatever activities she likes in Jannah. In sha Allah one day I would see all of these.

I ask the Lord who owns Mujhee soul, to give me Jannah, ameen.

Indeed Allah is Al Wahhab, The Constant Giver of Gifts, who is given out of love and mercy and not in exchange for anything. He is Al Mujeeb, The One Who Responds. He responds to our need or our call. He is Al Ghaniy, He is not in need of anyone or anything but we are in need of Him.

Monday, 21 October 2013

Topamax: The new anti-convulsive medicine for Mujhee.

This is going to be a review of Mujhee seizures. This is a post about her previous review, More seizures: New medication new hope.

Last week Mujhee's seizures got worse because she needs twice the Midazolam in a day to control her prolonged seizure. In the afternoon before Eid day, she has her seizures. Her father gave her Midazolam. Early in the morrning, when I got her ready for Eid prayer, she had more seizures. So I gave her another dose of Midalzolam. Alhamdulillah, she was alright with no prolonged seizures on Eid day but was sleeping all day. That night she could not sleep and her seizures came again. She was laughing continuously until tears came out of her eyes. That night I didn't give her Midazolam, tbecause her seizures were short and not more than 5 minutes although it kept coming. She didn't sleep that night. She fell asleep in the morning. In the afternoon she had another prolonged seizures activity so I gave her Midazolam. At night she had it again. The next day she sleep most of the day and awake at night. She missed school a lot because of this.

I noticed that her seizures got worse every second day now. The day that she was seizure free is the day when she sleeps all day and awake at night. Than early in morning her seizures will come again with another activitiy at night. These are the prolonged seizures that need midalzolam to stop. She could get more that 10 short seizures in a day that last for few seconds.

Basically this year Mujhee has developed more seizures and we have been increasing some dosages of her anti-convulsives medication and trying some new ones. Masha Allah, these medications can't control her seizures. On Friday she had her fifth medications review for this year and scheduled for another one before the end of this year. In this review, her neorologist introduces a new medication called Topamax. I already don't like the sound of Topamax's side effects.

She is on two tablet twice a day of Topamax. She is still with the same dosage of Frisium, one tablet twice a day. The Keppra is increased into 4 mls, twice a day. The Trileptal will be discontinued this Friday.

Insha Allah we're going to try Ketogenic Diet as a treatment for epilepsy.

Studies show that approx 1/3 of children treated with the ketogenic diet have greater than 90% seizure control with half of these becoming seizure free. An additional 1/3 gain a 50% reduction in seizures. The remaining 1/3 discontinue the diet due to its ineffectiveness or its difficulty. Epilepsy Queensland Inc.

When I writing this, there is a bit improvement as her seizures don't last longer. Alhamdulillah for the change and I hope her condition will only gets better.

Thursday, 17 October 2013

Eid al Adha: What are you willing to give up for Allah?

Last Tuesday, the 10th day of Zulhijjah, the last month of Islamic calender, Muslims celebrated Eid al Adha or Festival of Sacrifice, by slaughtering a sheep or other livestock and distributing the meat to the people in need. Traditionally the slaughter is done soon after the Eid prayer and at the masjid. Here in Australia it is done at the licensed slaughter house. Alhamdulillah, religious ritual slaughter is legal here.
Insha Allah, there are many ways you could make the sacrifice especially through the charity organizations like Islamic Relief AustraliaMuslim Aid Australia and Human Appeal Australia.

Muslims celebrate Eid al Adha to commemorate the faith of Prophet Ibrahim alaihi salam willingness to follow Allah's command to sacrifice his dearest possession, his own son Ismail alaihi salam and Ismail alaihi salam readily agreed to his father need to obey the command of Allah. In the end Allah provided him a sheep for sacrifice or qurban instead, as both of them submitted to the Will of Allah. You could read the story of Ibrahim's sacrifice here and watch it below.

Can you imagine yourself in the position of Prophet Ibrahim, sacrificing someone or something that you love dearly for the higher purpose? Who is your Ismail? What are you willing to give up for Allah?

There are many thing that I would do for the sake of Allah and for me parenting is full of necessary scarifies. I sacrifice my myself to be a staying at home mother to fulfill the amanah or trust from Allah to me. Instead of working and earning money there is no mistake when I choose to take the responsibility of fulfilling the trust by staying at home with my children 21 years ago.  because I want to raise righteous children. In sha Allah with the help of Allah, I would nurture, educate, manage and protect the growth of my children, as they are my first priority over anyone else.

I also scarify my hard work that was needed to raise a daughter with special needs. Alhamdulillah, being a mother prepared me for this challenge. I could not do it except Allah gave me the help, strength, patience and unconditional love.

I scarify my time with parental duties to fulfil my responsibility. I'm not saying I hate spending time with my children but as a mother I hardly get to spend quality time just for myself anymore, In sha Allah, if it's not in here there will be a time for it later, in the hereafter when we will gather together again.

Alhamdulillah, I wouldn't trade parenting for anything. It's all worth it because it will be a day when my Creator will ask me to account my responsibility as a mother and I hope that day I could tell Him that I raised my children with ihsan to the best of my ability to obey Him and to follow His messenger way. In sha Allah I'll have an easy account because I fulfill it.

Eid Mubarak to you and your family. I hope you have a wonderful and blessed Eid al Adha! May Allah accept it from us and you.

Allahu Akbar!

Monday, 9 September 2013

Acrylic painting that says the majestic name of Allah.

When I have spare time, I love doing DIY project. Today I would like to share with you some pictures of what I did for my home.

I love Islamic calligraphy. I'm dying to do it but I don't know how. If you looked at my handwriting in Arabic, it's so bad.  I really love this painting by Stephani Fisher. I love its colour scheme. When I looked at the price, I thought I should make one myself. So here what I came up with, an acrylic painting that says the majestic name of Allah in the shape of water drop. This is not my original idea. I got it from here

I know this one is far better than the one that I made, but I really love how the gold brighten it. In my previous post here I have a picture of this painting hanging above my table.

I also painted it on the rock.

Be creative. Do something creative. If I can do, you can do it too.

Friday, 6 September 2013

AFOs: Mujhee's fifth fancy footware.

It has been more then two years without AFOs. Last year I decided not to get Mujhee AFOs because she was never comfortable with them. We got her a piedro boot instead. Read the previous post about AFOs here and here.

This year we decided to get her the AFOs because her paediatrician and physiotherapist recommended her for preventing deformity, as her ankle twist outwards and it helps stabilized the joints.

These are her fifth AFOs and instead of having one piece, they are two pieces.

It was early term 3 when we went for casting. Mujhee's physiotherapist and speech therapist was with us for the appointment. She was not really well with viral infection. When the orthotist examined her legs, he recommended the two pieces AFOs for Mujhee to help control her spasm and keep her ankles in place. Before casting, he was afraid that he could not get the right casting as she was not relaxed. But Alhamdulillah, she was great at casting. Actually the ward feeling of the plaster made her fall asleep during it so he got the beautiful mold for the cast.

She still had a virus the day for fitting. We still went because the previous week I cancelled the appointment and I didn't want to cancel once again even though she had seizures just before we left home. I gave her medication and hoped that it would make her fall asleep, but her seizures got worse. Anyway the orthotist could not finished the adjustment that day so we went home without them.

When Mujhee had an appointment at PMH for orthopeadic clinic her physiotherapist called to bring in her new AFOs. I already really liked her new AFOs even before she wore them. It looked so easy when she put them on Mujhee and she looked comfortable. Alhamdulillah.

By the way at the orthopeadic clinic we found that Mujhee's hips are stable and she will continue to monitor her hips through the hips surveillance clinic and have a review in a year

I only pray that the Mujhee's fancy footwear, AFOs, would be perfect for her, so she won't feel uncomfortable when wearing them and help in correcting deformity and stability of the joints.

Information about Paediatric Ankle Foot Orthoses here, the two pieces AFOs here and more for parent here.