WORLD CEREBRAL PALSY DAY 06-oct-2018

Today 06-oct-2018, is world cerebral palsy day.I'm glad there is one day for cerebral pay awareness.  There is a lot to share about raising one with cerebral palsy.  There will be mixed emotions,  lots of tears, overwhelming joy, big and small triumphs to celebrate and we learn to cope up with multiple demands and we learn to forgive people who is not even sorry for their actions.As a parent we believe nothing is more important than a child's comfort, happiness and independence.

I often talk about our blessings and how proud we are as a parents to raise a super hero. But there is lot of struggle and so many fears about the child's future.

I'm fully confident about his strength and determination. And he is the most charming boy ever. But the fear is all about acceptance, will he ever be accepted in secondary school by all his friends?  Will he be able to achieve what he wants to do by overcoming societical pressures and fears? I have seen people loving my child unconditionally irrespective of the color,origin and background. At the same time, I have seen people avoiding him, although being same in every aspect. So life is unpredictable. I can't change the people or scoiety but I can only create awareness while preparing my boy for the future battles.

The question arises when I think about avoidance. What makes it different to avoid? Yes, he uses wheel chair but inside he is just  like any other child. He has same emotions, same feelings Moreover,his life demands to accept what he can't do and to cherish what he can do at this little age. As a mother, for me he is just a kid I don't see any differences interms of his learnings, but yes I do come across many differences(even though I don't compare) and it breaks my heart to see, while his classmates attends sports clubs after school, we try to catch up appointments for eye checkups and regular check ups and therapies. Sometimes my child asks me will I be able to walk? Although it's heart breaking I'm very honest with him. I tell him the realistic expectations that he will use crutches and much more better independence he will getbafter surgery, only with hardwork. It's hard to explain 6 year old the realistic facts with so much positivity.

I fight with therapists for under estimating his potential and failing to providing suitable equipment for his needs.He proved them wrong many times. The only  thing is to have a proper guidance in therapies is essential. Life is a constant battle. Everything is not spontaneous. Every thing should be pre palnned and well organised. Lots of planning requires to plan his weekends with therapies and outings/nature walks.  Even dropping him in school is also an adventure, as transitions in and out of the car is getting difficult.  Folding/unfolding whechair and placing in and out of the car is even more challenging. My back is sore all the time, which is when I feel I'm doing something extraordinary. Otherwise all other skills teaching him is such a joy.


Growth Spurts: Cerebral Palsy is not progressive, but it really tighten the child muscle If we don't give them enough therapy. Normally the muscles being stretched through out the day during child's activity and play time. In children with cerebral palsy, decreased control of muscles and increased muscle stiffness prevent muscles from moving through their full range of motion as easily or as often as other children.  Children with cerebral palsy needs stretches and therapy to equate the bone growth with muscles.



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WHY IS IT VERY IMPORTANT TO OPT FOR SDR SURGERY?

Why is it important to go for highly expensive surgery for Pranav?
At the moment, Pranav can walk using the walker(PACER) for only short distances. It gives him the gait training but as he grows his muscles getting stiff and painful. It would be hard for him to continue the physical therapy what we doing currently. As he grows it will be more painful.
     If he discontinued the physical therapy there are greater chances for him to get his hips dislocated which leads to further surgeries to correct it. Through SDR, we can avoid many more orthopedic related surgeries for him. We have seen the stories of CP adults who couldn’t have SDR but had to go for 10-12 orthopedic surgeries in their life. It was really painful for us to see their stories and couldn't imagine Pranav with pain in his whole life. As we have the possibility and we are fortunate enough to find the DR who is performing this surgery form past 25 years. All their stories inspired us to step ahead.

EVERYTHING YOU NEED TO KNOW ABOUT SDR and FUNDRAISING

What is SDR(Selective Dorsal Rhizotomy)? 
SDR is a spinal surgery which makes the pupil's legs spastic free(or remove the tightness). This will help to build the strength by doing intense physiotherapy. SDR is not a cure for cerebral palsy, but t it changes lives and gives another level of independence to the candidate.

CerebralPalsy - How it affects Me(Pranav)?

Cerebral Palsy is very Unique. Its different for each individual. Although it is unique, in general thereare few things that are common and understandable by someone who has CP or by someone who looks after someone with CP.

Pranav is verbal and very expressive. It's really important to create awareness about CP, how he feels and what he goes through and how he challenges himself to achieve his dreams. I write here in his own words.


Braces/Splints: I wear my Splints all day. It helps me to do assisting standing up and assisted walking. It also helps my leg bones to grow in a right direction.

Sitting Posture: Its hard for me to sit-up nice and straight as my core is not strong enough. I try to make my core strong by doing physio. Sometimes it is very hard to continue my physiotherapy after coming back from school, as I get tired. Although I keep hearing how important it is, it is so hard to push myself beyond my strength. 

Night Battles: My parents put me in sleep system or in gaiters to keep my legs straight during night times. This will help my hip bones to grow in the right direction. This will avoid any hip dislocations. And at night the sleep system help my legs to keep them straight and to have a bit of stretch to my hamstrings.

Loud Noise: Loud Noise really hurts my ears and I don't feel comfortable at all. It makes me sick. I avoided many parties most of the time with the fear that I get sick. But my Mom and Dad keep telling me that not all parties make me sick. They just help me to come out of my bad mind. I had recently attended my friends birthday parties. So I believe I overcome the fear of attending parties. I kicked the butt of my bad mind by saying 'can, can I can attend parties'. I use ear defenders to avoid loud noises.

Eye Sight (Amblyopia): My vision is not clear for far distances. And also I struggle to read my books as my left eye sight is Weaker that the right eyesight. This condition is known as Amblyopia. But Mom and my teachers say I am really doing good with my reading levels. I believe I keep challenging my vision and reading ability.

VoiceControl: My condition CP control the muscles all over my body. Sometimes I lose the control of my voice esp when I am excited. But sometimes me being cheeky chose to scream just like any other child.

I'm Just a MOM..Stays At Home

I'm really glad to write a  few lines about a mum who attends special needs of her own children and how it affects their life and how wise she acts and how quick she learns on the go. 

Mother's Day Card n Letter By Pranav

Today Pranav gave me a Mother's Day Greeting Card written by himself(with his own hands). He made it at school and got home. Having Quad CP, writing a letter to mum for the first time, you made me so proud today.  Proud Mamma writes few lines for you...

SDR Assessment For The First Time Ever

SDR - Selective Dorsal Rhizotomy is.a.lofe changing surgery for children and adults. It's showing great results for children with cerebral palsy as this surgery will permanently remove the spasticity from their legs. It is making wonders with children who is Diplegic CP and GMFCS level with in the range of 1-3.