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

Sunday, 9 October 2011

Mujhee's sleeping roller coaster.

Since Mujhee was a baby, she has always had a sleeping problem. The sleeping management team at TCCP said that Mujhee's sleeping disorder has a name, a delayed sleep phase syndrome. She has also became a nocturnal and used to stay up all night and sleep all day. It affected my family life, big time.

I remember, she wanted me to hold her in my arms until she fell asleep and when I try to lay her down on the bed, she wakes up with a loud scream. Big mistake! There is a position that she likes to sleep in which is in the sitting position on our old sofa. Although it was not good for her posture, I let her sleep that way.

A sleep study was done to determine why she has a problem with sleeping.  Read about the sleep study here, here and here. From the study, the doctor said that her tonsils are too big and made her sleep apnea. She certainly has shortness of breathing, wheezy breathing or loud breathing and she also snores. The doctor from respiratory clinic prescribed her melatonin to help regulate her sleeping but that medicine has shown no success. He also recommended the use of CPAP machine. We decided to try the CPAP mechine but could not get the right mask for her as she was small at that time.The doctor from ENT gave us another option which was to remove the tonsils that block the breathing airway.

We also seek alternative medicine for this before we finally decided to remove it after seeking Allah helps first through istikharah. The decision was made, a year before the surgery, whether to remove the tonsils or not. It was a year ago when Mujhee had her tonsils remove. You can read the post about it in the Mujhee's tonsils surgery post. I was so frustrated on how slow the medical system here operates. For me it is not acceptable at all.

Alhamdulillah, after the surgery Mujhee's breathing is much better but her sleeping has not gotten any better and she still has trouble sleeping. She has a lot of rough nights on a regular basis. Now she likes to sleep on her own bed. May be her bed is comfortable because she has a sleeping system to support her posture during sleeping. Mean time, we are applying a funding for an electrical operated bed with an air mattress system. the Invacare softform mettress.

After all that was done this far, I completely accept the fact that she will always have a sleeping problem. Looking at all that has happened, I am more then satisfied with what ever the outcomes Allah destine for her but I'm sure there are ways that could make her sleeping better.  Please remember us in your prayer. Alhamdulillah 'ala kulli hal.

Now, everything pointing at her muscle spasms. May Allah show us what is good for Mujhee, ameen.

Wednesday, 5 October 2011

Washing Mujhee could not be so pleasant.

Before Ramadan, the long waited shower chair for Mujhee finally arrived; the Flamingo. You can read more about Flamingo shower chair here. There is a post about finding a shower chair for Mujhee from the lightnur previous post, a visit to ILC.

Alhamdulillah, it's been so easy to clean Mujhee especially when she gets very stiff and unsettled. Mujhee's father finds it rewarding to wash Mujhee with the Flamingo shower chair because it is practical. There is not much lifting to do, compared to Mujhee's previous shower chair, which is wonderful for his back.

Before washing, I need to make sure that all the things neccesary is ready, like her towel, personal care and a set of clean clothing to be put on after. When washing Mujhee, I use the PODD communication book to tell her the washing activity. You can make washing fun by playing. There is an information for bathing in the Caring for Cerebral Palsy.

It is a great opportunity to teach Mujhee her body parts when washing. As I wash her, I show her different body parts using PODD communication while pointing out to her body parts. I wash her from head to toe so that I can point out each part of her body in the same manner and leave the private part and bottom last.

It was narrated by Abu Malik al-Ash'ari that the Messenger of Allah, sallallaahu alayhi wasallam, said, "Cleanliness is half of faith and Alhamdulillah fills the scale, and SubhanaAllah and Alhamdulillah fill up what is between the heavens and the earth. Salah is a light, and charity is proof (of one's faith) and endurance is a brightness and the Qur'an is a proof on your behalf or against you. All men go out early in the morning and sell themselves, thereby setting themselves free or destroying themselves." (Muslim).

Ibn Abbaas said: "The Prophet (peace and blessings of Allaah be upon him) passed by one of the gardens of Madeenah, and heard the sound of two men being punished in their graves. The Prophet (peace and blessings of Allaah be upon him) said: "They are being punished, but they are not being punished for any major sin. One of them used not to clean himself properly after urinating, and the other used to spread malicious gossip." (Reported by al-Bukhaari; see Fath al-Baari, 1/317).

From both of the above narrations, I need to take note for myself, first, the importance to be clean not only physically but also spiritually. Cleanliness should not be taken lightly as the Prophet (peace and blessings of Allaah be upon him) mentions in the above hadith that it is half of our faith. In the other hadith, the Prophet (peace and blessings of Allaah be upon him) told us that one of the punishment in the grave is caused by impurity after urinating.