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“We are a family of three, supported by a father. Noahuk was born on May 26, 2017, early. It already happened that I no longer felt the baby’s movements and I called an ambulance. The baby’s heart tones were irregular, so a cesarean section was performed immediately.
Noah didn’t breathe and only after four minutes of resuscitation did he inhale the first sip of air. However, with the first breath of air, the first problems of the son were added, because he was born with dysplasia of the great cerebral union ”, says D. Ivanauskienė.
The number of complex diagnoses has increased
During the first months of his life, the family, which is currently under the care of the Charitable Heart Foundation and Charity, constantly opened the door to the doctor’s office, where more and more details related to the health of their son were clarified. . It was difficult for him to eat, so he constantly sprouted and all this was accompanied by abundant and constant snacks, and the weight was growing very strongly.
With the first breath of air, the first problems of the child were released at birth with dysplasia of the great cerebral union.
“Due to a congenital defect in the formation of the cerebellum, Noah’s development is delayed. By the time the son was three months old, specific mixed developmental disorders, optic nerve atrophy and hearing impairments were recognized. Although developmentally delayed, Noah, lying on his stomach, raised his head, had started to try to hook, kick and crawl, looked at the sound and light and began to successfully eat the teaspoon food. However, we had problems with the toys, did not try to reach them and follow them, although when he put them in his hands, he put them away and chewed them, ”says Dovilė.
At 8 months: the first seizures
Still, months passed and development stalled strongly. The doctors’ predictions did not bode well, but generated more and more anxiety and uncertainty in the family.
“We spend a lot of time looking for information related to my son’s health. He began to attend exercises with physiotherapists, swimming pool and already seemed to be getting stronger, ”said Dovilė.
However, the boy, who was only 8 months old, had his first epileptic seizures, which are still difficult to control. As a result of these seizures, development progressed downward and wiped out all of Noah’s accomplishments. He had to undergo a lot of research, and the more frequent seizures were exhausted until the medications were finally coordinated. I had to start learning again.
The boy, who was only 8 months old, had his first epileptic seizures, which are still difficult to control.
“He forgot almost everything he had learned. What’s more, the ten-month-old son ended up in the hospital. Again. This time for aspiration pneumonia, when food enters the lungs. Then we heard another unexpected message – by general decision of the doctors it was decided to form a gastrostomy – a feeding tube in the stomach. When he returned home, there was again regular exercise and an effort to recover and get stronger as soon as possible. In recent years I have had to attend a lot of physical therapy classes and re-learn everything, ”says the family.
Personal file photo Noah and his family
Life hung by the hair
When Noahuk was one year old, the family heard another new diagnosis: ataxic cerebral palsy.
“However, life continues to spin at its own pace. We didn’t stop, we kept going. We began to visit the children’s rehabilitation sanatorium, where the son learned to hold his head tighter, the muscles became stronger. The arm and leg support functions have also been improved. He started looking at the toys, trying to take some of them in his hands, inspect them, test them, ”his mother recalls.
In the second year of his life, Noah was recognized for having a mutual audition and was prescribed hearing aids.
In the second year of his life, Noah was recognized for their mutual hearing and was prescribed hearing aids. “It was difficult for him to put them on, his son did not get used to it, and we even noticed that wearing them for longer increased the number of epileptic seizures. However, it is unfortunate that the epileptic seizures have not disappeared and that you have had to increase their frequency. After increasing the doses, Noah became sleepy and listless; It took him a couple of weeks to get used to it so he could go back to work with all his might, ”his mother recalls.
You can’t help but mention that a baby’s life hung in your hair a year ago. In mid-November, the boy appeared to be ill again: the high temperatures increased and severe seizures occurred.
“Noah found himself in the hospital again, only this time he had to spend a good three weeks there, including two of them in the children’s intensive care unit. There he slept all the time, and when he woke up he coughed very hard, he was weak. We were in ignorance while Noah’s life hung from his hair. It is fortunate that in December we and the whole family returned home after overcoming all the misfortunes, “says Dovilė.
The dream is to help Noah live a better and more comfortable life.
The third year of Noah’s life he goes into quarantine, so he spends most of his time at home, with Mom and Dad. Currently, Noah is a happy and cheerful child, moves his legs and arms, laughs with fun, reacts to mom and dad, recognizes them, likes activities in the pool, enjoys when people interact with him, plays, baptizes tickles, smiles , knows how to spread cats.
“Like all children, he likes to watch television, especially commercials. When he plays music, he listens to it and calms down. He planted himself a bit by sitting himself holding his head. He still can’t reach the toys, but he does put it in his hands , inspects and chews on them. True, don’t try to track or interact. You just want to sit all the time and can’t do it yourself, so it’s obvious that your development is lagging behind kids your age and you need to help to improve.
My favorite activity of the day is holding the hand to stand alone, and the little one is trying to speak, but to accomplish more, it will take a lot of professional help. Noah needs regular sessions of physical therapy, speech therapy, and occupational therapy; special aids for sitting, sensory motor skills, standing, speaking, swallowing.
Dovilė jokes sadly that the current family life is reminiscent of a fun roller coaster, since the son does not stop suffering from recurrent epilepsy or pneumonia and has to be in the hospital.
We have a dream to go to the Adeli Rehabilitation Center in Slovakia, where a visit costs more than 2500 EUR, and those visits need to be done at least 3-4 times. I think it is no secret to anyone that not only does it cost a lot of will and effort, but also financing, so we need help. Unfortunately, our family only has the support of one man and our grandparents live too far away, so the help would be really useful for us, ”says Dovilė.
Dovilė jokes sadly that the current family life is reminiscent of a fun roller coaster, since the son does not stop recurring epilepsy or pneumonia and has to be in hospitals, and after such health problems, the child becomes weak. When he returns home, Noah continues to constantly work with physical and occupational therapists and strives to restore what he lost and continue to strengthen.
He adds that despite the shenanigans of life, the whole family moves on and lives with the hope and belief that tomorrow will be better and the son stronger.
A turning point is the next fifth birthday
Deimantė Stankevičienė, a physical therapist who supervises Noah, says that since birth, Noah’s independent movement has been significantly restricted due to damage to the central nervous system. The injuries cause very weak muscle innervation, insufficient control of the head, shoulder girdle, torso, legs, and arm movements.
“Recently, due to daily therapy sessions, Noah has been learning new movements especially quickly (he began to sit independently, stand up and try to walk in a special walker). According to research, the brain can only effectively absorb movement training up to the age of 5, so it’s very important to supplement Noah’s daily exercises with intensive care courses at least twice a year at this time. It will be too late ”, says the specialist.
Little Noah has been diagnosed with several terrifying diagnoses: other epileptic syndromes and generalized (generalized) epilepsy in difficult-to-treat epilepsy; congenital malformations of the corpus callosum; microcephaly; optic nerve atrophy; mixed specific developmental disorders; Furthermore, the child has a gastrostomy because he cannot eat alone.
Noah’s care is run by the charity and support fund “Caring Heart”
You can provide support:
A / S LT807300010144236452
PURPOSE: Support Noah
Swedbank AB Bank code 73000
PayPal: [email protected]
Sending an SMS to the number 1670, entering the word AUKA (SMS price € 5)
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