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

Monday, 4 September 2017

Special needs with gut dysmotility

Mic-key tube button.
I just came back from PMH hospital to pick up Mujhee's feeding supply. After I prayed my noon prayer, Zuhr, and had chicken sandwich for lunch, I decided to go so that I could be home before Mujhee's father had to leave for work and F, her sister, finishes her school in the afternoon. I left Mujhee at home with her father. Before I went, I reminded him to check on her while he was gardening because Mujhee has had bad refluxs since last night. Earlier this week I ordered her milk prescription from the Nutrition and Dietetic Department at PMH, and they have delivered to us, few days ago.

Mujhee is very challenging to care because she doesn't eat, sleep and grow like any other typical children. She has a gastrointestinal tract or gut dysmotility, meaning her gut does not work properly at moving its contents (food, fluid ect)  through her digestive system. Due to her neurology disorder cause by her brain injury, her intestinal muscles has lost the ability to coordinate muscular activities, meaning its paralyzed. She can't eat orally so she is fed through a tube button that was inserted through her stomach because she has dysphagia, a swallowing disorder. I remember how naive I was, hoping that she can get better and can eat orally. It was not until she was 4 that, we decided to get the tube done. Before that she had a tube that goes through her nose, throat, esophagus and all the way into her tummy.

This gut dysmotility also makes Mujhee have gastroesophageal reflux disease, A condition in which food and gastric acid frequently flow back out of the stomach into the esophagus and mouth. She can't keep her food in her stomach so she is suffering daily vomiting, constant and sudden crying and 'colic' painShe has excessive drooling, tooth enamel erosion and  bad breath. She also has hoarse voice, sleep apnea, noisy and laboured breathing.

On top of that, she is suffering from constipation with hard stools that cause tearing and bleeding of the bottom, difficulty going to the toilet, a painful and swallow stomach. 

Cartons of Jevity Hi Cal.
50 mls syringe and tube extension.
Couple of weeks ago, I order her milk script. We order her script every three months through the Nutrition and Dietetic Department at PMH and they get delivered to our house. Each order we get supply for three months of twelve cartons of twenty four cans per each carton. WOW that is a lot of milk. So for three months she will take 288 cans of 250mls of Jevity Hi Cal. That's a lot, right? We feed Mujhee four times a day. She can't tell us whether she is hungry or full, so she is fed four hourly. So her feeding time looks like this 10 am, 2 pm, 6 pm and 10 pm. Here is the video of me feeding Mujhee, I made a while ago. She is so cute in the video.

Mujhee has poor weight gain and weight lose. Since October last year (2016) Mujhee is on Jevity Hi Cal. Previously she was on Pediasure. She has been on Padiasure since 2. Her dietitian changed it because she needed to put some more weight on her bottom because it was skinny. She got reoccurring bed sore on her tail bone and with more fat on the area it can prevent it. We also made few other adjustment on her wheelchair seat, we got her new reclining chair with memory foam and change her mattress into air mattress. She put some fat after Jevity but lose weight lately due to reflux.

Mic-key tube replacement set.
Every six months we need to change Mujhee's tube button or Mic-key gastrostomy feeding tube. I would order her feeding supply together with 50ml syringes and extension at PMH twice a year in February and August. Once we got the tube, Mujhee's dad will replace her old tube to the new one because he is more brave than me. Although I will do anything out of love for her, things like changing the dressing for her bed sores or replacing the tube feeding.

I am aware that Mujhee is very much challenging to care but she has her lovely family, her dad and me, her mum. Sometime we, as Mujhee family, are surprised by the hard works of caring someone with special needs and feel like  we had enough and or feel like we can't do it anymore but we keep going on for her and will never giving up on her because at the end of the day we realized that the purpose of our creation is to be test, as to whom among us is the best in deeds. I ask Allah to keep our faith strong, ameen.

Need to go and check on Mujhee now if she is already fell asleep because I am sleepy.

Until next post, may God bless you.


Monday, 6 July 2015

Supporting People With Disability in WA Liftout

The Western Australian Advertising Liftout, "Supportng People With Disability in WA" , a guide through the NDIS here.

Tuesday, 16 December 2014

Fifth Inset: Custom made wheelchair seat.

Mujhee has a new inset every 2 years. This would be her fifth insert. If every insert cost more then $4000, so up to now we could have been spending more than $20 K in her 10 years of life. That's only to custom made her seat only. I have not included her purple wheelchair yet which was about $5000, when we got it six years ago.

This year, it began in the middle of the year when Mujhee, her therapist from Therapy Focus and me went to go to CP Tech to see it's physiotherapist for the custom made wheelchair seat quote. That day we discuss what support she need. After we got the quote, Mujhee's therapist apply the funding. It took almost two months until we got the funding, alhamdulillah, then we went for the second appointment for measurement.

The process of making the inset can get very long hard work. When you have to go up to seven appointments, it feel likes it's never end. After the quote and measurement, we have five more appointments to work on and try it whether the inset served it's purpose. The third and forth appointments was the longest. It took almost 4 hours. The technician at CP Tech were very professional and exceptional. Withe the directions of the therapists, together they worked on a new wooden base, the cushion, thoracic, new hips strap, and pulmo.

On the fourth appointment, they worked on carved the cushion, a new tray, a new foot straps and fixed the thoracic. The fifth and sixth appointments were 2 hours each. The fifth appointment they worked on a new headrest, trimmed the pulmo, adjusted the foot rest.

On the sixth appointment they worked on the shoulder straps, trimmed the headrest and adjusted bits and pieces. Finally I sent the wheelchair to something engineering in Malaga to get the inset covered and the wheelchair serviced. This year we decided to cover it in black. It took 2 working days.

All the long wait and hard work of the CP Tech's physiotherapist and technicians, Therapy Focus physiotherapist and occupation therapist was worth it, after you see the final inset. I could not thank enough to all the people who were involved in the making of this inset. Indeed we are all together in it.

Tuesday, 3 June 2014

Wheels for Hope: Can never thanks enough.

27th February 2014.

We were at the Wheels for Hope for an interview. They told us that it's likely that the board will accept our application. In a weeks time they will have a meeting and tell us if we get accepted or not. If we get accepted, they will prepare a van that will suit our family and lend it to us. They will pay it's insurance, registration, service and will repair the car if it got broken. The only things we have to do is take care of it and fill in the fuel.

I ask Allah to give what is best for us. If this gift of mobility benefit us, I ask Allah to put His barakah or blessing in it, ameen. I am so grateful for the motor industry foundation of WA. I really appreciate their community work towards the gift of mobility.

27th March, 2014.

Today was the day we have waited for, especially for my husband, F. It was a day a van with a hoist to lift a wheelchair into it will be presented to us from the Wheels for Hope. It is an organization who lent us their van to use for M. The only thing we have to do is to use it and fill in the petrol. They will repair it if it's broken. It will do the car services. It pays for RAC and insurance. We only use it. Allahu Akbar! How great is that?

On the way to the Wheels for Hope, there was a bit of traffic on the Freeway towards Canning Bridge. F was worried if we didn't get there on time. He was so excited and couldn't wait to receive it. I can understand why he was extra excited because he has been waiting for this too long. It was more than three years ago when we heard about Wheels for Hope through our awesome Local Area Coordinator. Two year ago we decided to apply. F continue asking me when we'll get accepted because he become so frustrated pushing M in and out of the van with his back pain. I told him to be patience because we are not the only one who apply. In sha Allah, our time will come.

I told him that I was not worried about the acception because I love doing what I do and I think that our van has a great barakah. You can read how we get help from our community for this van. Lifting M, pushing M in and out of the car is hardwork that effect my back very bad but all the hardship help me to remember Allah and be near to Him. Alhamdulillah, Allah make our life better but I'm afraid if the easiness will make me remember Him less than before. Hardship makes me closer to Him and I don't want to lose it.

On the way there I was calm. In my mind I kept reciting the ayah I learnt last week, about prophet Yunus alaihi salam. Allah says:

فَاصْبِرْ لِحُكْمِ رَبِّكَ وَلَا تَكُن كَصَاحِبِ الْحُوتِ إِذْ نَادَىٰ وَهُوَ مَكْظُومٌ

"So wait with patience for the Decision of your Lord, and be not like the Companion of the Fish - when he cried out (to Us) while he was in deep sorrow".
(See the Qur'an, Verse 21:87).

I didn't understand why the ayah kept coming in my mind. Maybe the van is the decision that Allah gives to us for our long waited patience. Subhana Allah, I think He was trying to tell me directly through this ayah that He heard our cries to Him like He heard the cries of prophet Yunus alaihi salam, so today is the day He decided to fulfilled our dua.

Subhana Allah, today is the day "when my life met revalation", Muhammad Alshareef new catchpharase. We were the one in deep sorrow and we cried out to our Lord. He decided it for us for our wait with patience.

Today I was in a situation that I didn't even know how am I going to say thank you to Allah and all the people of WA through Telethon who change our life and gift of mobility to M. I felt that my gratitude was meaningless to them.

I remember I kept on saying thank you to each one of them who came at the presentation. F even said to them that he didn't know how to say thank you to them because we are so grateful with this blessing.

I didn't do anything to WA people who donate through telethon to deserve this blessing?

Alhamdulillah, Allah is free from imperfection and I begin with His praise as many times as the number of His creation in accordance with His good pleasure equal to the weigh of His throne and equal to the ink that may be used in recording the words for His praise.

How am I going to thank Him enough for all the blessing He bestow upon my family and me?

Alhamdulillah I feel grateful.

p.s: Check the picture inside the van in my previous post, here.

Sunday, 25 May 2014

How a Muslim mother of a child with disabilities struggles through grief.

I’m a mother. I’m blessed with six precious children. I’m an average Muslim striving to do my best to earn Allah’s Pleasure. Allah has prepared me for unimaginable hardship as He guided me through grief. The day I met my fifth child I saw a miracle. It was the day when my life changed. That day I received a gift from Allah, the Giver of Gifts, as He gave me a chance to get closer to Him and to earn His blessing, mercy and guidance. 

It was 2 o’clock in the morning when I was woken by pain in my tummy. I woke my husband up and began packing up my bag. I was 36 weeks pregnant with my fifth baby. At 3 am my tummy started feeling so tight and hard. I remember warm tears coming from my eyes as I tried so hard to bear the pain. By 3:15 am we were at the hospital. When the midwife checked my baby, she said that her heart beat was weakening. Immediately, I felt worried when she said, “Quick, we have to save the baby!” as we were rushed to the theatre to do an emergency caesarean.

At 4 am, 9 years ago, my baby was born with a severe brain injury. She was born without any heart-beat. The medical team did CPR on her. They informed my husband soon after she was born. A few minutes after, a nurse came again and told him that our baby lost her heart beats. “What do you mean?” my confused husband asked the nurse. Alhamdulillah, Allah grant back her heart-beat after the second CPR. Both of us were taken to the ICU. When I woke up, my husband who was by my side uttered the news that no mother would hope to hear. Allahu Akbar! I was shocked and shaking. I felt nothing. “Please tell me that this is not real.” 

The doctor revealed that I had placental abruption, meaning my placenta separated from my uterus wall before my baby was born. They found bleeding and blood clot in my uterus. There hasn’t been any explanation as to why and how this happen. My pregnancy was normal and I had no complications prior to giving birth. 

I remember the day I met my baby for the very first time. It was a day after she was born. I was still in the ICU when the nurses pushed me on my hospital bed to the NICU. I couldn’t bear my eyes when I saw her. No mother could bear this painful realization that her baby has brain injury. As I touched her, I found myself bargaining, “O Allah, I’ll do anything for You, if You take this away from her.” I remember tears filled my eyes as I grieved when the doctor answered my question that there is no cure for brain injury. The reality hit me when I realize that the injury made my daughter lost her intellect. It was so hard for me to understand because what make us human superior is the gift of intellect Allah bestow on us. I felt distressed when I found out that she also lost her sight and hearing. The reality hit me at full force when she turned three months old, when her eyes wouldn’t follow me and she could not smile at me. At six months old, I felt devastated when she could not even move, roll, crawl or sit. Every time she didn’t hit her milestones, it brings back my grief and made my heart empty just like the heart of Prophet Musa’s mother. When the pain is too much to bear, you fell nothing anymore. All my hopes and desires for her bright future are shattered before they even begin. For more than a year my husband believed that there was nothing wrong with her and she will only get better. He convinced me that the doctor was wrong.

I learnt that this is decreed from Allah only after I understand the true meaning of Inna lillahi wa inna illaihi rajiun. "Truly! To Allah we belong and truly, to Him we shall return. I learnt that Allah, the best of all planners, tests me through my daughter’s brain injury. He tests me if I would still strive hard for His sake by being patient and staying truthful to Him. What more would you want when Allah promised to be with the patient one? He also promises us that the reward of being patient is Jannah. I understand that with this hardship He has something better for us, even if I didn’t see what it is immediately.

The hardest thing I have faced is to digest the fact that she has multiple disabilities. She cannot use her own mouth for eating and let alone for smiling. She cannot see me her own mother who bore her before she was born and cared her until this day. She cannot call me “mama” like the rest of my children call me. She cannot hear me saying “I love you” like me alwayssay to her and her siblings. She will always depend on me to provide constant love, care and support for the rest of her life as she could never take care of herself. Imagine having a baby where you have to do everything for her. Now, imagine taking care of that baby for 9 years and many more to come. La hawla wa la quwwata illaa billah. There is no might or power except with Allah. I admit it that I’m powerless and only Allah can strengthen my heart to get me through all of this.

I learnt that this trial was really a mercy from Allah, the Most Merciful, when I rediscover my purpose of life. This hardship reminds me that my only purpose in life is to worship Allah, alone. He guides me to the right path by making me staying true to Him and not giving up my faith, even in the time of great hardship. Allah guides me to be like Prophet Yaakub alahi salam, as he only complain about his grief and sorrow to Him, the All-Hearing, the All-Knower. I believe that only He can help me get through all of this.

When I saw a little girl like her, playing and running at the park, it made me sad to think that my daughter could never come to me running or hug me, let alone kiss me. I hate it when I can’t help myself from comparing her with other children at her age. What would you feel when you realize that your daughter would be bound in the wheelchair for the rest of her life? My heart hurts when I think about my fear of what my daughter can’t do but others can.

Alhamdulillah, it was a blessing from Allah that I learnt to swallow my anger and fear by allowing myself to be patient with her condition and understand that it was such a great loss only if I don’t pass the test that Allah put me through. I learnt to overlook the worldly dreams I had of my daughter. I dream of her with images of Jannah. I look forward for theday when we are reunited and she will run towards me, hug me and kiss me at thegates of Jannah. I hope I will pass the test. I hope it opens up the way for my entrance to Jannah.

Alhamdulillah, I am pleased with Allah’s decree and accept His divine intervention to have granted me a daughter with a severe brain injury. I accept her multiple disabilities and appreciate her being a person of Jannah. I understand that if I ask Allah to cure her it would mean I will take away her privilege that make her sinless and not be accountable in the Day of Judgement. By Allah’s mercy, I’m able to take the extent of her condition without pain and sadness as I realize that I am blessed with a person of Jannah under my care. I would still revisit my grief but my heart is at peace with what is coming. With Allah’s guidance, I’ve been through an unimaginable hardship by being patient and staying true to Him. I would still experience many challenges but I understand that Allah, the Most Merciful, the Wise, can only tests me according to what I can handle. Maybe you won’t understand it but you will agree that with Allah’s blessing, He has guided me through His designed process of grief. Allahu Akbar! Miraculously, it transformed my life as I rediscover my purpose of life, to worship Him alone. If this is the only way for me to return to Allah, every second and every moment of hardship I was with her is worth it.

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.