Giriesha gets herself into sitting position!!❤❤

The much awaited moment. Somewhere in September 2019, my supergirl Giriesha who used to come up half way from lying position, currently can rise to sitting position all by herself!

In December 2018, noticed Giriesha's sitting got more stable. Not only that, her body structure, muscle mass, strength and body weight saw new beginnings.  And now no words could elaborate the happiness in my heart to witness my girl could do this all by herself! All those hard times and hard work never failed to lead us to this significant change! More transformation on its way!

 

My Dazzling Damsel,Warrior Angel Giriesha

Being a Special Need Parent, is a path less travelled. Acceptance, endurance, falling apart, rising back, coping it is a continuous cycle. Me-being a mother to two kids with special needs is something that acceptance was a long road I travelled from the moment I woke up till I go to bed again. 

Beginning before accepting Giriesha for she is now I struggled emotionally so much. I was clueless on what happened during her birth process as all I could remember though it was a prolonged third stage labour vacuum assisted, yet she was received with a loud cry with a APGAR score of 9 with no issues. She sucked well, she was a doll with beautiful big round cheeks, and even the nurse who came and checked on her at home was so amazed by her beauty as a baby and told me I should not wait too long to have another baby like her as she looked so beautiful.  

When Giriesha was 3months old, I witnessed myself she was about to turn over. Reached 4months old, Giriesha presented with severe constipation. Her weight graph was not picking up. Giriesha was feeding exclusively on breast milk. I still remember I insanely took her to the Pediatric Clinic just to weigh her every day! She constipated passing sand like stools with the help of enema. Hubby handled all these heart shattering moments when she constipated. We tried her on all sorts of stool softening methods including giving her expensive baby probiotics etc with no result. I was the other end with so many questions in my head walking ahead with days passed by.

  

At work, I would go silently to the computer and browse reasons causing her constipation, looking for answers. Then I came across milestone graphs of head lagging which was still present at six months old for Giriesha. At nine months- we took her to the Pediatrician and was referred to the Pediatric Neurologist at the hospital I worked. On her first day assessment by the Consultant, she was far behind many milestone accomplishments. At one year plus, we noticed her head drops which we thought it may due to her head support was not strong.

One evening when I sat beside a Neurologist waiting for hubby after work, I shared about this to her and told me it could be due to seizure . I didn’t believe her. All I knew seizure was only one type as fitting type. I didn’t know there are some silent ones. It was about time for her next appointment with her Genetic Consultant and told him about my worries. He referred for an EEG. After her first EEG, her Paediatric Neurologist was shocked by the findings that showed Giriesha was having epilepsy and called right away that night, alarmed! The next day, she was started with Sy. Epilim. Her epilepsy was a big challenge to us. Thank God, her Consultant was closely associating with me on the changes of her many medications from Sy Epilim to many others to tackle her epilepsy which would settle in the beginning upon starting new medication then it reappear. Besides, Giriesha presented with lots of phlegm whilst on these medications.

While that was going on, her Geneticist worked on all tests to know the cause of her delay without giving up with all sorts of genetic testing in the world. Finally last year, in April 2017, after 8years of research in Japan, we found out her features are closely related 'YOU-HOOVER-FONG" SYNDROME , MUTATIONS IN TELO-2GENE, that confirms her diagnosis. 

Giriesha in Magic Kingdom, 9 years old

Treatment? So far none and we continue paving pathways through many other therapies available. I learnt Masgutova  (MNRI) method in Chennai,India in 2017 and later more in depth by attending MNRI Family Conference in 2018, in Orlando, US.

Why I love Masgutova ? Because as a mom, despite the conventional strengthening activities, something was kept on bothering me that Giriesha need more work in-depth connecting her brain towards her muscle and bone to a more systematic pathways to create function and ability. I experienced less fetal movements of Giriesha and Ms.Laddoo’s while I was expecting when compared to when I was carrying my son.  And my instinct kept me  looking for answers on the reflexes and where I found many answers through Dr.S.Masgutova. 

Performing MNRI on Tarini

Performing MNRI on Giriesha

Giriesha’s Current Situation on her Seizure. 9 years along this road, Giriesha responded well with current medications, Young Living Essential Oils and now with Masgutova Exercises on board –I see less of her eye flickering and head drop. TOUCH-WOOD!! Everytime Giriesha had episodes of head drop seizures, she would sleeping most of the time, her appetite would decrease and her weight would reduce tremendously. These situation would have an impact on the exercises and therapies we could do to her, while tackling her seizure at the same time. Her squint noticed during assessment was referred to another hospital for correction. At around 2years old, with medications to tackle her seizure and by wearing glasses, her squint resolved without surgery, and without us realizing. Giriesha is still unable to sit on her own and non verbal, but she would try to come up half way from lying position. We are still working on her sitting and many other areas.

My Little Girl’s PERSEVERANCE and RESILIENCE inspires me as a MOM to do more without giving up.Till now, I never abandoned my goals for Giriesha , from falling and rising countless times, but chose differents paths and action plans, trying hard to reach them diligently and I trust that my girl would walk one day! She is my Teacher of many values in my life and she made Me!

PediaSuit Training at Amir’s Gym, KL

One of the intensive therapies joined by Giriesha when she was five was PediaSuit training in Amirs Gym, Kuala Lumpur. This was her first intensive therapy. She did for one whole month in November 2014. Everything happened like a magic & how we got to know & agreed to the training still vague in my mind . All I could remember  was the video from Amir’s Gym which stole my entire family’s heart & the next thing my hubby said, let’s go for this! https://www.facebook.com/amirs.gym

I took a whole month of unpaid leave, left to KL and stayed in my Sister In Law's house in KL. Ms. Laddoo was 1 year plus. With heavy heart, I had to leave both my kids to my mom and left to KL with Giriesha. Ms.Laddoo was unable to sit on her own that time. With one part of my brain full with worries about Ms.Laddoo’s progress and the other part of not knowing how well Giriesha would cope with the intensives, preparing her food with high protein diet and so on, I left with blurred vision.

There, my father in law helped me to take us to the gym and bring us back home. It usually takes about 30minutes to 45 minutes to reach.

Giriesha did well with the suit. The first and second week, I noticed Giriesha was coping well and enjoyed her intensive sessions. Of course with whimper and cry in between when the level of intensity was getting higher.  Her intensives were from 2-5pm, just nice after a heavy lunch, we would leave to the gym packed with any snack that I could prepare to give during break time. Usually after 5pm, she would continue her therapy in the pool with Madam Fezia or other therapists. Giriesha loves water. 

Third week, noticed Giriesha was crying more and whimpering, but well that was normal for kid to go through some downtime emotionally and with the level of activities got intensed. I too was emotionally a bit down that week. But you know what, we coped things up well and back to ourselves. At night, noticed Giriesha’s head drop seizure was also present frequently. I applied Frankincense that Madam Fezia gave me( I was all so new to essential oil world that time).

The level of professionalism, skill and dedication I found at Amir’s Gym is enormous. The most prominent difference that we saw in Giriesha that-her trunk and head control were significantly enhanced . Both her legs which we slightly curved in became straight and sturdy.  Giriesha’s focusing too has improved . Her seconds of sitting upright on the second week of training made me jumped with joy! 

After one whole month, we went back home and continued what I could, of course without a suit and more new therapies I started to read and explore for Giriesha. Some by my own, some were recommended by friends who are special need parents too.

Thank you to  Madam Fezia for illuminating many new things earlier in our therapy world e.g. placing child in right posture while resting, feeding, doing therapy, the importance of oral care, food choices, and many available therapies and most of all the quality of never give up and keep on trying and the Power and how far that we can go for our child with special needs as a mom.  

Work After Work

We are defined by the stories we tell.

My tagline is Work after work. 

Both work - my passion and love, being a pharmacist at daytime and therapist to my kids.

Whatever I do with my kids is taught, checked by therapists during conference, even I took part during session. These girls are my Hero!!We are on board towards maturation! Allowing myelination of neural net system, and aiming a beautiful highway and growth!!❤❤❤ Nothing stops till I say so, everything gonna grow with me!!!

A rare alliance, merging of love, connection and work....after work. Masgutova in action by extraordinary couple towards Change Destined! ❤Changes is Possibble. Never Give Up.  Reach for the stars.  Smile Above Everything.

 We are committed to our goals, no doubt! God's way of making me so important  to my kids and to execute it from my heart is extraordinarily good.  It is nourishing to my soul❤

Smile more and give your best from your heart. Doing something out of love, tiredness is powerless. More to come!  ❤

We found one nice, conducive spot,  surrounded with lots of energy- near to the prayer altar. A perfect place to continue therapy,   without much distraction on our new massage table❤...look at that!  Ms Laddoo is too excited to reach for the stars!!!!

To be the beacon of fun and light spreading joy while doing work. For me MNRI is another form of love. ❤❤❤

❤NEVER GIVE UP❤