Posted in Erb's Palsy, Faizah, Fateha's Journey

Meeting Her Teachers

Fateha is seeing OT, PT and ST in her special school and she enjoys being there. I’m so glad.

lunch at Wendy’s…before attending her case conference

So meeting her teacher and therapists was always nerve-wrecking. I kind of already know the progress she’s already making and showing at home. So when her class teacher and ST shared with me her improvements, I was not very surprised.

Her PT showed us examples of what we could do at home to further improve her muscles and strengthening them so that Fateha would be able to walk. She was already excited about walking on her own, although she still couldn’t. Seeing the printed images of physical games-cum-therapy excite me so much that I couldn’t wait to start.

no vain pot-ting, my dear!

When her OT showed us pictures of muscles which were affecting Fateha’s mobility and agility, I swallowed my saliva. I knew something was not gonna be good that would come out of his mouth. No I’m not blaming him. He’s a good OT; it’s because of him I became much more aware of the present situation.

OT Johnson had been taping her back and arm to “wake” the muscles and “tell” them that they MUST work properly. That part, I was ok with ever since the first time he pasted it. Till he explained what he found out while performing some therapy.

Johnson wanted to help with the new muscles that were joined and released during her surgery 3 months ago. While he was at it, he found out that Fateha’s right scapula (shoulder blade) was tilted at about 90deg to the left. This came as a shock to us! It was not due to the surgery but her weak muscles that surround her scapula. Hence, we couldn’t see her shoulder blade. This was also one of the reasons why her right arm was not able to move well.

About 3 years ago, I already noticed the “missing” scapula while bathing and changing her. I was anxious and wanted to ask her specialists but the husband thought it could be due to her having Erb’s Palsy. We began to accept that.

Johnson also mentioned “Deep Tissue Mobilization” (DTM) and if the hospital showed us how to get it done, well, after her surgery. To his horror, we told him that we were not fully explained other than to do intense exercises and stretching. Even the doctor who helped perform the surgery was clueless about this DTM. She had no idea!

So Johnson showed us that the tapings he had done on her back were somewhat helping her trapezius muscles to “guide” her scapula’s rotation. When Fateha began school after a month long of medical leave, we began to notice her right shoulder blade protruding a little. Little did we know that it was Johnson who helped us. We thought it was the success of the surgery. *sigh*

He told us to continue massaging her back muscles especially her trapezius, to help calm it down. Johnson taught us a way to bring her right scapula back into place, too.

But when he said that Fateha’s left arm, which was supposed to be the good one, was also having a slight problem with her left scapula, I felt like fainting already. It jutted out each time Fateha did some gross movement with her left arm. The strong muscles dominated the weak ones hence; she had tight biceps in both arms. Her triceps need workload to be shared so that there would be no high muscle tone. In short, muscles in her whole body were not working together very well.

And her body had already learned to position itself at the comfiest state to be grounded and stabilized, it would be the hardest to make her unlearn it. It would not do her posture any good, her walking would be odd and funny.

~As a mother to a physically under-developed child, all these devastating news break my heart to trillion pieces. No one may understand what is going on with my little preemie as she looks so healthy and cheerful. The sad mask is never kept far from our faces; it is always hiding behind the happy one. I have not been crying for three long years since her birth, and on Monday I started again~

GAMBATTE, my Little Ate!! i know you can do it!!


a wife, a mother, an anxious-for-no-reason person and a pure lazy bum.

4 thoughts on “Meeting Her Teachers

  1. Oh gosh, it’s just so sad hearing what the OT had to say when Fateha looks so cheerful and upbeat 😦 I pray she will be better soon, and hope you and your hubby won’t lose hope *hugs*

  2. Hi Faizah,

    I have had the luxury of time this evening to visit your blog once again and read more about your dear daughter Fateha, and all the challenges that she faces at such a young age.

    As much as I am an advocate for strength, I must admit reading about your daughter did make my heart quiver. Not out of pity! Not out of sadness! But only at how much of a fighter Fateha is. She really is such a soldier in her own right!

    Reading about her really got me thinking about how different a test Allah chooses to bestow upon us. For you (and your husband), it is going through an ‘awkward’ (sorry for the lack of a better word) vaginal birth, and then going to the most minute detail to understand your daughter’s condition, just so that you can be the best parents to Fateha. To meet with different experts, to do your own research, to spend on treatment and therapy – all this dedication just so that you can face the test of being a parent to your child. Allah is Great, and insyaAllah you are proving yourself to Him that you will always be a wonderful and inspirational mother.

    For Fateha, it boils down to the basics of life itself: survivability and adapting. At 26 weeks of gestation, Allah already tested her by making her leave your warm womb three months early. Amazingly (masyaAllah), all her physical features are beautiful (her face!) and perfect. Then it was the Erb’s Palsy, that she admirably overcame with the doctor’s help through surgery, and more importantly through your love and her own strength. And then I understand that she also outgrew her ankle foot orthorsis. I know she still has other physical conditions that restrain her mobility now, but look how far she has gone! With the help of the experts, and your continual encouragement, insyaAllah she’ll achieve full mobility very soon.

    I look forward to read about your darling daughter’s progress. Again let me reiterate – you have no use seeking inspiration from my story, because Fateha’s and your story is far more an inspiration. It is definitely a story not only of acceptance and adaptability, it is more a story of how fragile and precious life itself is, and the length of endurance when Divine tests seem to keep coming your way. It is indeed a story of relentless effort of the parents to overcome each challenge just so they can make their child’s life a happy and comfortable and normal one.

    Allah rewards us all justly, and for you and your family, I pray that He showers all of you with bountiful blessings and miracles, insyaAllah. Amin.

    Cheers and goodnight,

    PS: I’m sorry for the long comment! I tried emailing you but it failed and bounced.

What do you say?

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s