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.
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| 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.
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| Performing MNRI on Tarini |
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| 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!
