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

Friday, 12 September 2008

What's on her cheek?

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu



I always experienced that kind of question when going out with Muja. Usually children are more curious and honest so they ask me directly.

Like any other child Muja is different but special. She had brain injuries at birth time. That left her muscles unable to control voluntarily. Just a simple muscle movements like smiling is difficult for Muja but not impossible. At one stage I was so sad that my poor child could never smile. It was so devastating to have a child that could not communicate with you. All she could do is high pitch of crying.

With the help from speech therapist, I do massage or stroke around her mouth. By the will of Allah, at the age of around two Muja began to smile. Masha Allah, the world is mine. The long wait is rewarded. Since that day I am so positive. Insha Allah everything is possible with Allah permission. In Muja case, it is only the matter of time. It could take longer time for her to do any task but it could happen. She is 4 now. At this time normal children would already talk fluently, I am working on to help her to call me, Mama. This would be my dream come through, Insha Allah.

Well, now I am coming to the answer of my question on the title of this post which is what's on her cheek? It is call nasogastric tube in the medical world. Basically is is just a tiny tube that goes through her nose, throat and ended in her stomach. It is for feeding purposes. She has that on since she was 6 months old. When she was about 12 months her developmental pediatrician suggested placing tube feeding in her stomach, but her father show unwillingness towards the surgery. Anyway, I believed she just needs more time to practice like more time to start smile.

You see as I explained before Muja has no control of her own muscles, so even the acts of eating like chewing and swallowing is hard for her to do. Any small lump in her food could only choke her. The food can also goes to the lungs instead of stomach which can create problems.

Although most of her nutrition come from a formula called PediaSure through tube feeding, I keep on practice feeding her orally. She would takes very smooth food without any lumps but must be thick consistence. Every time I put food in her mouth she is panicing because she has no idea what it is. Alhamdulillah she takes about 5 - 10 teaspoons now, but not enough for nutrition. It is to taste only. Insha Allah, one day she will be feeding orally without the nasogastric tube. I ask Allah to make this possible, Ameen.

By the way if you look at the picture of Muja above, she has her hearing aids on. There are previous post on the hearing aids here and here.

Insha Allah, next time I will post about how Muja indicates yes or no.

6 comments:

Umm Yusuf said...

MashaAllah sister, mothers like you are my role models! A sister in my area has 3 daughters with San Filipo syndrome and she has to do everything for them, feeding, changing, moving them about the home, on top of that one of her 2 sons has autism. She has a clothing business and is always busy subhanAllah, I dont know how it's done. May Allah reward you in this life and in the hereafter! ameen!

-Lazeena Umm Yusuf

Lightnur said...

Asslamaualaikum sister Lazeena Umm Yusuf

Ameen to your du'a.

Jazak Allahu khairan for your visit and comment.

Masha Allah, may Allah reward that sister with goodness in this word and hereafter abundanly, Ameen.

struggling said...

MashAllah you are doing a great njob teaching and helping your daughter, may Allah SWT reward you and your daughter ameen

Lightnur said...

Assalamu alaikum sister

Thank you for your visit and leaving kind comment.

May Allah reward you with goodness and do visit again to lightnur.

Yasiph said...

Nice to have met such a wonderful mother via internet. My son Yafaau too had NG Tube from his birth. Docs said he cannot be fed without it but we tried and tried to teach him to swallow. It was a hard journey but alhamdhulillah he learned to swallow but with great difficulty. Today, although 5yrs of age he still has semi-solid food but we are thankful for Allah that he doesn't have to use it. I know how hard it is to maintain an NG tube specially at an early age.

May Allah bless your family and I must say your lovely Muja who is one of Heaven's very Special children.

Lightnur said...

Assalamualaikum Yasiph

Welcome to Lightnur and thank you for stopping by.

It is nice meeting you via the internet as well.

Alhamdulillah you son, Yafaau learned with great difficulty to swallow. Masha Allah you have done a great job for that. May Allah reward your hardship with goodness in this world and hereafter. Masha Allah, good for you that Yafaau doesn't have to use NG tube.

Muja is also progressing well in her swallowing. She can take only puree with no lumps at all because it could choke her. Insha Allah, one day she will be able to swallow foods.

Do visit Lightnur again.