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

Friday, 13 February 2009

Trying CPAP machine for Muja third sleep study at PMH

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

On Tuesday afternoon, Muja and I went to PMH Respiratory Medicine for her third sleep study. Read about Muja's previous sleep study here. The results are here. There is a post about how I was frustrated at The Health Service in Western Australia.

This time the study is to try the CPAP machine. I arrived at 4:30 pm to learn about CPAP machine. How to use it and clean it. At 5:00 I did admission. That night Muja and I slept over at PMH for the study. When the admission finished, I went to the ward. While waiting for the room, Muja was weighed (14.2kg) and her head was marked with a red marker. I fed her through her tube. There were two other children that were doing the study as well.

It was 7:30 pm when we went into the Room 3. All the wires were ready to be sticked onto Muja head and body. When the wires were done what she looked like is in the picture below. Muja was very comfortable. Maybe she is use to them as this is her third time.

Then it was time to put the mask for CPAP machine. She didn't like it at the beginning. Maybe this is because it is her first time, give her some time. But to tell you the truth I won't be confortable sleeping with the mask on my face. Once the mask stayed on her her snoring was gone. Her breathing became clear, I was happy. I waited for her to sleep. Every hour past and she is still awake. At 11:30 pm, a nurse came in to ask about her sleep time. I said usually after midnight. It can be 1 am, 3 am or 5am.

Muja became unsettled after midnight. I hold her on my lap and she fell asleep. I know that if I lay her down she will wake up. Usually at home I lay down and hold Muja while she sleeps. It was uncomfortable for me. Any sudden movement make her wake up and cry out loud. I did it anyway to show the study this is what I have been through for more than 4 years. I put her down slowly but then she woke up and cried loud like I already said. I picked her up again and she stop cried. Then she slept again. Every time when I tried to put her done on the bed she woke up. It seem that the sitting position can make her fall asleep.

After couple of hour may hands felt tired. I put her down but her hands tried pulling the wires and the mask. So I picked her up again on my lap. Once she sleep, my feet got cramp. I moved a bit to straighten my legs but that made her wake up. I was so exhausted. What should I do? I am so tired. I need a rest. It was 2:30 am.

Alhamdulillah at around 3 am she fell asleep. I put her on the bed gently and she was still sleeping. The above picture was taken at 3:30 am. But then soon after that she woke up again. This time I lay down next to her, hugged her and pat her to sleep. I slept with her. An hour after I was awake a couple of time to the whispers of the nurses who were discussing about the CPAP machine which switched off suddenly.

I was so tired I went back to sleep and woke up at 6:45 am. I saw the mask was not on Muja. Soon after I woke up a nurse came to disconnect the wire from Muja's head and body. While she did that, she told me that I could not take the CPAP machine home because it was not working properly.

Alhamdulillah I received an appointment next Tuesday to discuss result for the study which normally take 3 to 4 weeks. Insha Allah I will post the result as soon as I get it.

Bye for now, but not forever!

Wednesday, 11 February 2009

Muja first hearing appointment for year 2009.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

Yesterday morning, Muja and I went to Hearing Ausralia to review her hearing. Her ear canals and drums are well and no sign of infection. She wasn't do well in the hearing test. She showed no interest and no respond to any sounds. Then the audiologist used some instruments for testing. She responded by blinking her eyes and widen them sometime. She respond well to loud sounds and a few low sounds.

That's it. Just a quick update on Muja. Insha Allah I will post about Muja third sleep study soon.

Have a nice day!

Monday, 9 February 2009

Muja first day at Conductive Education Pre-primary without Teacher-Conductor

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

It is Muja first day at pre-primary today. She slept well last night so she looked so fresh this morning. I packed her bag with her feeding equipments, hearing aids and communication book. Her father helped load her insert (seating frame) and stroller in the car. I changed her nappy before leaving the house. I put her AFOs on and lift her into the car seat.

When we arrived at the Carson Street School we saw Natalie first. After greeting each other and asking about the holiday she told me that Muja class is not running by her. She is with the kindy like last year. I am so upset when she said that the per-primary will be leading by a training teacher and not a qualified teacher-conductor. I am so angry at the CSS and DET. Why is the teacher-conductor not here yet?

Anyway when we enter her class we were greeted by some familiar faces like Suzanne (EA), Rozie (relief teacher?) and Annatte (EA). There are more new EAs. There are 7 students in pre-primary including Muja. It was busy as the children were queuing for the toilet. After saying good bye to Muja I left. I catched up with other mothers outside the class. Evan's mother ask me if she could load Muja's photo into CECWA website. I said go for it.

In the afternoon I picked up Muja at 2:30 pm. She just got out of the pool and ready for changing. The swimming instructor told me how Muja is growing taller. She also said that Muja enjoyed the swimming today.

In her communication book I know that at school today Muja said that she didn't like her morning tea and it was yukky.

I am hoping that CSS and DET will make sure that my daughter and her friends will get the Teacher-Conductor as soon as possible. What is a CE program without the qualified Conductor?

Friday, 6 February 2009

Food and food supplement when travelling with special needs.

In the name of Allah; the Merciful; the Compassionate - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ
May the peace, mercy, and blessings of Allah be with you - السلام عليكم ورحمة الله وبركاته

Hi! I'm back. Alhamdulillah I'm so glad that I'm home. I'm telling you that even Muja feels great that she is home in her familiar environment. Traveling is so tiring especially with special needs child plus other children. But we enjoyed every minutes of it and would like to do it again...

Where should I started with? Let me think...

Ok maybe I'll start with the foods. No! Not the foods yet because I have to load some pictures. Oh well, when will I have the time to load those pictures?

Alhamdulillah, I don't have to worry about what to cook for 8 weeks. This is what I call a holiday. No cooking! I am so greatful for that.

As for Muja, her food is simple. I took 12 cans of 900g Padiesure formula for Muja during our travel. I also packed her feeding tubes and syringes. Subhana Allah, here I am complaining about food and get bored with the same old food while Muja has been on Pediasure almost most of her life. O Allah, make me grateful to your blessing, Ameen.

I always make du'a that one day Muja can really eat real food and enjoy it. Then she can say bye bye to the nasogastric tube feeding and be finished with it.

Masha Allah, Muja is growing according to her aunty. She looks fatter and taller. Alhamdulillah, Muja didn't have any problems with eating and she kept it well in her tummy. She vomited only occasionally in the plane.

She was well during traveling. She open her bowel every 2 to 3 days with the help of Movicol for children. She takes the herbal which was prescribed by her Acupuncturist every day and magnesium to relax her muscles.

I took homeopathy remedies too. Muja has been taking it since she was 9 months old even for her teething and fever. For my travel sickness I took homeopathic remedy Cocculus and alhamdulillah it works well.

Our skins are very sensitive to mosquito bites. My Naturalpath said that we need Vitamin B so we took the supplement with us. We took mozzie repellents and homeopathic remedy Ledum for insect bite itchiness. Sleeping under the fan also help the mozzie away. At Muja's aunty house she put the mosquito repellent incense, but I can't stand it, it smell and not to mention the smoke. It keeps the mozzie away very well. Alhamdulillah we were protected by any disease causes by the mozzie.

I think thats about it for now. I will update more later. There is so much to tell but I don't know where to start.

Muja is the BEST during the travel! Masha Allah!