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

Sunday, 20 June 2010

Mujhee sleeping management.

Mujhee's conductor/teacher asked me about Mujhee's sleeping at CE summer holiday programme that she attended on January 2010. She asked at the right time because for six week with the cast on she was very uncomfortable during sleep time and at night in general. At that time Mujhee just had her cast off after she had her soft tissues surgery for her migrating hips. She suggested Mujhee to see Sleep Solutions for management of her sleep and I agreed. Previously Mujhee had seen Sue from CP Tech Sleep Solutions to manage her sleeping problem. Here is a review of her sleeping management.

ALhamdulillah after a long wait we got an appointment on April 2010 to see the sleep management team from CP Tech Sleep Solutions. The day she came Mujhee had a very bad night. For almost a week she fell asleep at midnight. She was sleepy during the day and she even missed her school. Usually before her sleeping time she can be very upset and will cry. Her legs are stiff and her fingers are clenched so tight. I was getting very stressed with the lack of sleep and seeing Mujhee crying and upset.

She suggested that Mujhee went back to melatonin, a hormone that can regulate sleeping pattern. Meanwhile she suggested symmetrisleep system to help her position during sleeping with some wedges. She also mentions about lullaby or other nature sound that can put to sleep.

Alhamdulillah, I took Mujhee's rain forest lullaby from school where she brought for show and tell about her three special things. Anyway her other two special things are a book about the Zoo and the hearing aids. That night she slept better with the sound of rain forest and the warm wheat bag on her foot and tummy. She was fine as long as the sound of the rain forest is on. She gets upset if the sound stops and she is still not asleep. So I have to run to her room to switch it on. This could happen a few times before she will finally fall asleep and leaving me exhausted.

On Friday the 18/6/10 I went to CP Tech for Mujhee's wheelchair custom made seat appointment(this will be in another post, insha Allah) and I meet Sue, from Sleep Solutions. Mujhee has an appointment to see her on the next Monday at our house but since we came in she met us there. She brought a couple of wedges to position them between Mujhee when she is lying on her side and a pillow to put in between her legs. When she tried the wedge she looked comfortable and symmetrical. You can't believe it, she fell asleep right away. I guess the measurement for her wheelchair has made her tired or maybe the wedges and pillow made her comfortable.

She also give us a Cocoon Video Baby Monitor so I can hear and see Mujhee from my bedroom. Guess what? I don't have to leave my bed to see if she is alright, alhamdulillah. During the night I wake up to Mujhee's crying to reposition her. I also wake up if she is so silent. I just worry that she falls on her face and suffocated. Mujhee also got a teddy bear which plays a lullaby and the best thing about it, it is voice and movement activated. The sound plays for 5 minutes. It stop after that time. When it stop the voice of Mujhee getting upset or the movement she makes switches it on again. I think this gadget it cool to Mujhee's OT, who was with us and she agreed. For trial Mujhee got the lullaby only without the bear for hygienic reason.

Mujhee's OT and me discussed about the goals for Mujhee sleeping. Insha Allah I would like for Mujhee to sleep at 9 o'clock every night, without me waking up to reposition her and worry about her safety. Insha Allah I hope these trial gadgets will help me and Mujhee to get better sleep through out the night and reduces my stress.

Last night as always Mujhee goes to bed at 8:00 pm. Alhamdulillah she fell asleep at 9:00 pm but she woke up at 10:00 pm. So I went to her bed and changed her position and warm the wheat bag again in the microwave. She went back to sleep at 10:30 pm. She woke me up for Fajr at 6:30 am. I changed her position and put the warm wheat bags on her tummy and legs. She went back to sleep with the sound of waves from the teddy bear lullaby. Alhamdulillah the first night I don't have to leave my bed and she slept well.

Tonight I got Mujhee to bed around 8:00 pm. I read the three Qul surah and wiped her whole body. I also read to her surah al Fatiha seven times and blow onto her. When I leave her room she was still upset and crying. I switch on her lullaby with the sound of waves. I came in her room few time to reposition her and rewarmed the wheat bags for her tummy and foot. She slept at 9:30 pm but woke up at 10:00 pm. I reposition her and while I write this post she fell asleep again at 10:30 pm. Insha Allah, I hope she will sleep until morning and wake me up at Fajr.

Friday, 18 June 2010

Meeting with Mujhee's new therapist team.

I signed an application for Equipment for Living Grant on early month of May 2010 at Therapy Focus. Thanks to Mujhee's OT for filling in the application form for me. As I mentioned on the previous post we are applying for a Symmetrikit Seating System for Children as an alternative positional seating for Mujhee's complex needs. At the moment she has a wheelchair for seating. I feel that she can get really tight sitting on it after a long period of time. Please make dua that Mujhee will get this grant so she can have the recliner seat for her size.

While I was at the office I asked about Mujhee's other new therapists’ member which I haven't met yet. I received a letter stating that her therapist team has changed a few months ago but I haven't met with them personally except her lovely OT. The first time I met her was at CP Tech appointment on March 2010 for upgrading Mujhee's wheelchair seat. She is wonderful to work with and I am glad Mujhee has her.

It was nice to meet Mujhee's new physiotherapist and speech pathologist. I was glad Mujhee's OT introduced me to them, so at least, when I see them around at school I can at least say hello to them. From that meeting, Mujhee's physiotherapist made an appointment to see her and me, to discuss goals for Mujhee.

On the day we met, Mujhee's physiotherapist told me that she has been working with children with disability for almost 20 years. She has background working with Conductive Education in Hong Kong and loves working with children. She gave me her personal contact number and asked me to call her anytime.

We discussed goals that I wanted for Mujhee that included a home program, progress of her standing frame, second skin and new AFOs. She told me that I can help Mujhee standing between five to ten minutes without the standing frame. If she stands for more than these times with standing frame she is not using her legs muscles to stand up. Masha Allah, it makes sense to me.

She told me how grateful we are in here with a variety of fancy equipments. She said that in Hong Kong they make their own equipment. Alhamdulillah I am grateful for having great support from the community. I know Mujhee's life has become a lot more easy to manage with special needs equipment. She needs a wheelchair to help her move around, bathing and toileting seat for hygiene needs. She also needs a standing frame to help her stand, AFOs helps stretch her lower legs muscles that are usually over-flexed or contracted. There are many which I am not going to mention now.

I am thankful because without these equipments I am sure Mujhee's life and my life would be difficult. I just want to justify myself that I am not in anyway materialistic of these equipment but it is because these equipments help Mujhee's special need a lot. I just want what is best for her and can help her living her life better. I want her to have opportunity like any other children. I want a lot for her.

Masha Allah, I just realised that when I write any post in this blog, it is all about Mujhee's appointments, her special equipments and about her therapy’s. I don't know about you, but I never get bored writing about them. Here comes to the purpose of me writing a blog. Well, first of all I want to document what I have gone through or what my life is with a special needs daughter. Second, writing is a therapy for me; it kind of reduces my stress. Once I put it into writing, I feel much more relieved. Third, I write a blog to inform close family activities and the progress Mujhee makes. I can go on and on but I better stop now. I have to pick up my girls from school now.

Okay, I hope you enjoy reading my post as much as I enjoy writing it. Hope that you can some how benefit from it. And may Allah make my life and your life easier for the rest of it. Ameen.