It was suggested by Mujhee's teacher/conductor last year to have a custom made second skin suit for her posture. During June 2010 someone from Second Skin came to Mujhee's school to make an assessment wheater a second skin will benefit Mujhee.Early August 2010 I received a letter from Second Skin recommending Mujhee for a postural suit after that initial assessment.
Looking at the qoute I was shocked, and contacted Mujhee's OT for an advise. She suggested me to try apply funding through AARBIC. She helped with the application. Alhamdulillah soon after Eid ul Fitr 2010 we received a great news that the funding was approved.
Alhamdulillah we got an appointment right away, other wise the next clinic would be in six months. On the 20th August 2010 we went to Second Skin for measurement. Basically there were a lot of measurering to make. I can't believe that it could take more than an hour. I remember how my mum used to measure me and my sister when she made us dresses when we was young. It won't take any longer than 1 minute. Enough of my old history. Now back to reality. =)
We had an appointment at the Second Skin for fitting the postural suit a week after Mujhee's tonsils were removed (12.10.2010). After putting the suit on Mujhee we can see a big different to her posture. She sits straight and tall. It was super easy to hold her. Without the Second skin it was extreamely hard to hold Mujhee because she has such strong muscles which I have to push harder to make her stay in a position. Sometime it is easy for me to let her just lay on the floor than to hold her up sitting or standing. She is quite a grown up young lady.
A few days after the fitting day, someone at Second Skin called. He said that we have to come back for an adjusment around the neck. He looked at the pictures taken on the fitting day and found it a bit loose. Actually I realised that it was loose too, but I thought that it was suppose to be like that. After the adjustment it was perfect fit.Now the suit fits her well, but we have a tiny weeny problem. Not really small problem. Off course I don't want her food to come out the other end. Other wise she will lack nutrition which can create another senario. Mujhee get sick after each feeding with the suit on. I think the suit hold her body really tight almost until no space for food to stay in her tummy.
Another problem is she does not tolerate wearing the suit together with her AFOs. She would be so tight when I put them at the same time. So her teacher/conductor suggested to introduce to her slowly and one at a time and one of her feeding time change to later towards the end of school hour when the suit will be off for that day. She is not wearing it weekend anyway or when she sleeps.
Alhamduliilah, her teacher and the EAs at her school has done an amazing job that now Mujhee tolerate the suit and AFOs at the same time now. Just when you feel everything in it places, more obstacles rise. It will be in another post, insha Allah, about spasticity, sleep and missing hearing aids.
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