Suckling reflex

23rd July 2016, 10 days old Elly, he was just coming from the newborns unit after 3 days of photo therapy because he had jaundice. 

I never fed him for the 7 days he was in the ICU, and in the newborns unit he had a pipe going through his nose, i would manually express breast milk, measure it with a syringe and slowly feed him through the pipe in his nose. 

A day before we were discharged i was asked to breast feed him, he could not suckle. 

When the discharge news came, i asked the nurses and doctors there why he could not suckle and what i was suppose to do to help him with that. They all told me that with time he will learn and all i have to do is to keep trying! 

That first night at home, my mum was with me, we tried everything to no success! Mama then advised me to express milk and spoon feed my boy. 

I did that for a month or so, and at the same time i kept trying to breastfeed him. My milk supply went down by the day, this boy would cry so much sometimes. Not knowing what to do i flew to my parents in Kisumu with a two month old child. 

My dad suggested we try baby formula, and i Rose A Angira refused that idea because the pediatrician warned me not to give anything until he was 6 months old!  My dad yelled “How old is that pediatrician? Must be your age mate  practicing what he read and no experience😂Do you know how many kids i have seen growing? And you Rose, do you know you ate ugali at 3 days old and you still alive and healthy😂😂, nonsense, 6 months my foot, what about those children whose mothers die immediately they are born?”

Anyway, Elly’s first tin of formula was bought by my dad, and just like that Elly grew with that till he was 7 months old.

Lack of suckling reflex in most cases can be a sign of brain damage, i came to know that later. 

I kept trying to give Elly liquids with the feeding bottle and at two years old he finally learnt to suckle, he is not very good at it but atleast he tries, i mean it takes nearly an hour or more for him to finish a full bottle. One step at a time, some day he will do it well. 

#ellyscpdiaries

Special needs parenting chronicles 

Elly at 6 Days old

Elly at 6 days old in the ICU. It was not allowed to take photos, but you all know Africans will always do the opposite😂.📷

I grew up knowing that people who were admitted in the ICU hardly or never came out alive, and even with those scary thoughts i still had the strength to take photos of my son. 

Elly’s being in the ICU ended my fears for dead bodies, yes i used to fear dead people until i witnessed three people in the ICU taking their last breathes,doctors rushing to cover them with white bedsheets😥. Every day there was one or two bodies being moved from the ICU to the mortuary, This is one of the reasons i refused to use the maternity wards and instead spent all my first 7 days and nights as a mother outside the ICU in the cold. How was i to go and comfortably sleep not knowing how my son was doing. 

Visiting hours were strictly 6:00am, 12:00 pm and 6:00pm, any other special call in between these times mostly meant bad news,most people who were called in in those hours would come back in tears, their loved ones were gone. There was this day i was called in around 10:00am, i froze, my body got heavy, my mind told me it was my time for some bad news as i dragged myself to the ICU, my feet were too heavy to lift up ......My eyes got teary, then one of the female doctors shouted “hey, are you ok, are you Rose? Are you the childs mother?”... I only nodded, to mean yes. 

She walked towards me, held my hand and before she could atter a thing i opened my mouth and asked.”Is he dead? can i please see him before you take him away?”

Ohhh i was wrong, they had only called me in to let me know that Elly was to be transferred the next day to the newborns unit for photo therapy because he had developed jaundice.  

Phweeeeeeeeeew! I dint even want to know what jaundice was, the fact that he was still alive was just enough. 

I smiled and politely asked if i could see him anyway, thats how i sneaked and took this photo, thanks to my Motorola C113 there was no click sound from the camera. 

#ellyscpdiaries

Acceptance

I am often asked to describe the experience of raising a child with CEREBRAL PALSY--To try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It is like this . . .

When you're going to have a baby, it's like planning a fabulous trip--to Italy. You buy a bunch of guidebooks and make your wonderful plans. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!"

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy!  I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't sent you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy, than Italy. But after you've been there awhile you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips.  Holland even has Rembrandts. But everyone you know is busy coming and going from Italy . . . and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was suppose to go. That's what I had planned."

And the pain of that will never, ever, ever, go away . . . because the loss of that dream is a very Significant loss.

But if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.💚💚💚
#mysonandi
#myjourney

THE BIRTH OF ELLY, 13/7/2016

I am one of the lucky people who had a smooth pregnancy, i only had morning sickness when i was 3 months paged, a few days when climbing Kilimanjaro, most probably because of the atmosphere there. Apart from that i never had any other complications, i never threw up or anything worse. My only problem was that i hated coca cola, and i would always carry the TV remote, just so i can change the channels whenever the coca cola advert came, crazy huh! Two weeks to my due date i made a two day safari to Tsavo East National Park, those who've been there know how bumpy , dusty and stressy it can be, that was before the beautiful roads we currently have from Mombasa to Voi.

I had a big appetite for dried fish (obambla) and brown Ugali and Kienyeji vegetables (local vegetables) , i would send my mum money to send me big packages of dried fish from Kisumu, thats actually how she found out i was pregnant, she was like: "Atieno what is it with the dried fish every now and then, are you pregnant?'

12 July 2016, around 7;00pm, i noticed blood stains when i went to pee, i immediately called my gynecologist and she asked me to go to her clinic and also advised me to carry the baby bag i had earlier packed cos my due date was the 13th, which was the next day. 

I reluctantly made dinner for my brother Evans and my friend Terah, i was not in any pain. I remember painting my finger nails, and jokingly telling Terah that i dint want unkept nails on my first photos with my son. 

I would say i was so active, earlier on this 12th, my brother and i spent the better part of the morning at the market buying kienyeji vegetables,it was so much and i was determined to prepare all of it and freeze it, thats what i planned to eat the first month after delivery. We managed and the freezer was green with pre cooked vegetables.

At around 9;00pm, Terah and i checked into the hospital, the nurse on duty checked and confirmed i had dilated to 1 or 2 cm, cant exactly remember, and she asked me to stay overnite for them to watch over me. Terah and i had a private room and we slept on and off. 

On the morning of 13th i had another check, and was told to walk up and down the stair case, that i did happily as Terah took videos. 

Around 11:00am, i was induced and that was the start of the real labor pains, ohh Jesus, this i will not talk about. I thought i was going to die, funny enough even with my cries there were no tears, huh! I phoned my mum and told her to take care of my child if i dint make it, i gave Terah my bank pin number, my mpesa pin just incase, hahhaha

There were  3 women(nurses)who were helping me deliver,they  told me that by around 6:00pm i will have delivered. It was now around 5:00pm, and i was put on oxygen, Truth is i cannot remember much from this point until when Elly was delivered at 6;45pm. All i remember was Terah crying, which to me i though was tears of joy, cos i had tears too, but no, Terah was crying because Elly was born blue, did not cry and she could not bear the pain of  watching  them resuscitate him. 

I could not see all that was happening, i wanted to see my child but i was told to wait till i shower. Half an hour later i saw my son, who was still in the oxygen mask. I could not understand it, then i was told he had breathing problems and will have to be on oxygen therapy till the next day, and that was to be in another hospital. An ambulance came and we were transferred to another hospital where my son was attended to by one of Mombasa's best pediatrician ( i will not mention names)

I spent the first night watching over  my son in the incubator with the oxygen mask, a new mother, stitched and tired. The next day the pediatrician came, Elly was now breathing heavily that he could be heard from a distance, he then called me  aside and told me i quote: 'Rose, i have tried my best, there is nothing more i can do, am not sure this child would live to the 3rd day, maybe you can try another hospital, but there is not much hope'

I took my child from the incubator,  cried to God, organised an ambulance and had Elly transferred to the ICU where he spent the first 10 days of his life.

I will continue about the events after the discharge in my next blog

Thank you for reading!

Challenges of raising CP child

Today i would like to talk about the challenges of raising a child with cerebral palsy who needs specialized care. In my two and a half journey with my son Elly, i would honestly say that it is very expensive to raise a special needs child. 

The moment a child is diagnosed with CP, the religious journey to the occupational and physical therapists begin, This has to be consistent and only the parent to the child can manage this, it is not easy to get a reliable nanny or family member to do this, For this reason most parents are forced to quit their jobs and careers and concentrate on the child, who also in most cases will fully depend on the parent almost all their life. Friends and family will sometimes turn their back on you cos to some this feels like a burden, and to friends the social life dies being that all attention goes to the affected child. 

When Elly was  diagnosed with CP at four months old, i had not much knowledge on children disabilities in general. There was no counselling given to me on what was to come. Lack of counselling facilities for CP parents is a major cause of denial as most parents do not understand their children's condition.

Stigma should have been top on my list, In Kenya in general, disabilities are still seen as a form of punishment or sins from the parents. The general public has no knowledge of CP and in most cases the public stares and asks annoying questions, this makes some parents to hide their kids, denying them their social life. Most marriages are broken and in most cases the mothers have to bear the burden of  raising the affected kids and other kids if any. The myths and superstitions surrounding disabilities in kenya makes it difficult for parents to fit in the society, they are judged and isolated.

As i have mentioned above, it is very expensive to raise a child who needs specialized care. The cost of therapies and treatment is very expensive and no insurance company in Kenya has a cover for children with CP. Any assistive  (sitting aids, wheel chairs, standing aids) and orthopedic  device that these kids need are also very expensive. Traveling with thesse kids is also very expensive. 

Poverty and lack of enough finances is a major challenge too, some families cannot even afford a decent meal, and at the same time they are raising a CP child who need a balanced died to survive. 

These are just but a few challenges, there are amny more that i will be sharing now and then. 

Thank you for reading my blog, please share as we continue the journey of Understanding CP. 

#love

#awareness

#cerebralpalsy

What is Cerebral Palsy

And what exactly is Cerebral palsy? This is one question am often asked whenever i post or talk about Elly having CP. I will briefly try to explain and please keep in mind that CP is a condition not a disease.

Cerebral palsy is a term used to describe a non-progressive neurological disorder that affects a person’s movements and posture caused by abnormal development, or damage to motor control centers of the brain. It mostly occurs before, during or after birth .The abnormalities of muscle control that define CP are often accompanied by other neurological and physical abnormalities. CP is not a specific diagnosis, but is more accurately considered a description of a broad but defined group of neurological and physical problems.

People with cerebral palsy may have problems swallowing and commonly have eye muscle imbalance, in which the eyes don't focus on the same object. People with cerebral palsy also may suffer reduced range of motion at various joints of their bodies due to muscle stiffness. 
 Cerebral palsy's effect on functional abilities varies greatly. Some affected people can walk while others can't. Some people show normal or near-normal intellectual capacity, but others may have intellectual disabilities. Epilepsy, blindness or deafness also may be present.

There is no cure for CP, however, supportive treatments, medications and surgery may help many individuals. This may include physical therapy, occupational therapy and speech therapy. There are also some medications that may help relax stiff muscles. Often, external braces and other assistive technology are helpful.

Some affected children can achieve near normal adult lives with appropriate treatment.

Welcome to my blog

My name is Rose A Angira, the mother of Elly, a 2.5 year old boy with cerebral palsy.
Elly's condition has inspired me to create awareness and to help fight stigma surrounding disabilities.
In this blog i will not only share my journey with Elly, but i will also write about the information on children disabilities, the causes, challenges, stories from other parents like me and more. I realized most people do not have knowledge about disabilities, and that is one of the big causes of stigma.
I believe that when once people understand, they will learn to accept and show love to the special needs children.

Hopefully my blog stories will in one way or the other encourage someone somewhere who is still living in denial.

welcome again!


Rose