Yen Ling grows up like any other little girl, she wants to keep her hair long. She wants to tie up her hair just like the pretty girl in her school. However, I did not want to make it an easy job for her. I had recently set up a challenge for her that is to hold herself straight up all the time. Then only she can have her hair as long as her wish.
Due to her un-noticed Pompe problem (weak muscle) since young age plus the Malaysian's style of putting baby to sleep in the "sarong" in day time, she had gradually developed into haunch back due to the lack of support from the "sarong". While she was a baby, the symptom did not show up; the problem slowly took it's place. It only apparent when she was about 3 years old.
She will keep herself straight up every time when we asked her to for a while, then she will go into the posture that she feels easy with. I tried to tie her up using a correction stripe but she would refuse, she would be moving around not cooperating. At that time, she still can't really see why should she torture herself for. I must admit the correction will not be a pleasant task for her.
Recently I had ask for doctor's advice and she was referred to physio therapy. I was glad for the referral. The therapist started to look into her back muscle and commented that it was quite badly hunched. However, it was not as bad that she could improve or recover if she exercise enough to realign her muscle.
Now, every 2 weeks besides the enzyme infusion, Yen Ling will have her physio therapy appointment in GHKL. This way, she will save her time.
After 2 rounds of the therapy sessions, the therapist was quick to point out that her trunk muscle was not as great too. She noticed that Yen Ling leg muscles was still not very strong. It was like inter-related muscle problem.
According to the therapist, Yen Ling will need to strengten her back, thigh, waist and leg muscles. It's really the whole body exercise.
Now, besides the once every two week exercise in hospital. Yen Ling was asked to do the exercise every night before sleep. That's the only standard time slot that I could fix up for her so that it will be consistent. Because, we have enrolled her in for Chinese Wushu lessons in the hope to strengthen her muscle. Earlier, I have started swimming lesson for her but her body did not cope well with the pool. She will be complaining of cold and run away from the pool. Guess it's not the time yet for her to learn swimming.
Whatever the plans lined up, at the end only Yen Ling can decide whether she will have her long hair or not. I am hopeful as her is quite a strong minded little girl.
Wish her luck.
Wrote in 17 Jul 2008
