Story submitted - 2020
Kodey was born 3 weeks and 1 day early. I had a difficult pregnancy. I fell down the stairs at 16 weeks of my pregnancy. I went to the hospital and found I had bruised my ankle, wrist, back and had fractured my pelvic bone but there was nothing anyone could do due to me being pregnant so I had to deal with it. Every time Kodey lent on the feeding tube, he didn't seem to be putting on any weight very well. So I had to have 2 steroid injections inserted into my legs to help Kodey grow better.
When he was born he did not cry until after he was given Vitamin K and put onto my chest to be cuddled, then he cried. It was a relief as I wondered why he wasn't crying. My placenta had ruptured into bits just before he came out so I had to be taken to hospital to have the rest removed.
Kodey was born 3 weeks and 1 day early. I had a difficult pregnancy. I fell down the stairs at 16 weeks of my pregnancy. I went to the hospital and found I had bruised my ankle, wrist, back and had fractured my pelvic bone but there was nothing anyone could do due to me being pregnant so I had to deal with it. Every time Kodey lent on the feeding tube, he didn't seem to be putting on any weight very well. So I had to have 2 steroid injections inserted into my legs to help Kodey grow better.
When he was born he did not cry until after he was given Vitamin K and put onto my chest to be cuddled, then he cried. It was a relief as I wondered why he wasn't crying. My placenta had ruptured into bits just before he came out so I had to be taken to hospital to have the rest removed.
He weighed all of 4lbs 6oz. So tiny but so adorable. At 16 months of age I noticed he wasn't feeling well so I laid him to sleep on the sofa with his sister who was 9 at the time and I went into the kitchen to grab my mobile as I had a call. As I was talking to the person on the phone I heard my little girl scream MUM! I went into the lounge and realized Kodey was flopped over her arm. He wasn't breathing, his eyes were at the back of his head and he was blue round his mouth. I screamed out loud. What on earth has happened?
I literally had to resuscitate him whilst my daughter ran next door to get her to call for an ambulance. Once the ambulance arrived they put me in the back of the ambulance and put Kodey on my lap. This is when he started to have his very first seizure. There were 3 more after that whilst we were at the hospital. I was in hospital with him for 3 days. Not knowing why this all had happened, the hospital didn't know either. A few days later he had another seizure, then another and so on. He had EEG's, ECG's etc etc to see why all these seizures were happening. For a whole year we didn't get any medicines for the seizures as they wasn't sure what was wrong with him. One time when he had a spell of seizures he had been in one for an hour and they couldn't get him out of it. It was heartbreaking. They put him on Sodium Valproate which was fine to start with but as he grew up he needed his medication changed as his seizures had started up again. He has now been on Levetiracetam for almost 2 years and has been seizure free.
We had a genetics test last year and results came back that he has a diagnosis of NCBRS. Shocked was an understatement. He is the youngest of 5. He is non-verbal but is very clever. He’s always happy and everyone loves him. Everyone that meets him think he’s a lovely little soul. He’s brought so much happiness into all our lives.
He is an uncle of 7 and we are all such a close happy family. He has been attending main stream school but has now been accepted into a special needs school which he will start in September this year. We are going to see how he gets on with going to the special needs school maybe 3 or 4 days a week and 1 or 2 days at main stream school as he has made so many friends there and is well loved by many. We hope he will learn so much more in the special needs school. We've been trying to learn PECS as a way of him communicating and have just started to learn a bit of sign language. We've been trying to potty train him but have been finding it hard although I have potty trained my other 4 children with no problems. He is a very happy boy and loves life. We are looking forward to watching him grow and learn things in the future.
I literally had to resuscitate him whilst my daughter ran next door to get her to call for an ambulance. Once the ambulance arrived they put me in the back of the ambulance and put Kodey on my lap. This is when he started to have his very first seizure. There were 3 more after that whilst we were at the hospital. I was in hospital with him for 3 days. Not knowing why this all had happened, the hospital didn't know either. A few days later he had another seizure, then another and so on. He had EEG's, ECG's etc etc to see why all these seizures were happening. For a whole year we didn't get any medicines for the seizures as they wasn't sure what was wrong with him. One time when he had a spell of seizures he had been in one for an hour and they couldn't get him out of it. It was heartbreaking. They put him on Sodium Valproate which was fine to start with but as he grew up he needed his medication changed as his seizures had started up again. He has now been on Levetiracetam for almost 2 years and has been seizure free.
We had a genetics test last year and results came back that he has a diagnosis of NCBRS. Shocked was an understatement. He is the youngest of 5. He is non-verbal but is very clever. He’s always happy and everyone loves him. Everyone that meets him think he’s a lovely little soul. He’s brought so much happiness into all our lives.
He is an uncle of 7 and we are all such a close happy family. He has been attending main stream school but has now been accepted into a special needs school which he will start in September this year. We are going to see how he gets on with going to the special needs school maybe 3 or 4 days a week and 1 or 2 days at main stream school as he has made so many friends there and is well loved by many. We hope he will learn so much more in the special needs school. We've been trying to learn PECS as a way of him communicating and have just started to learn a bit of sign language. We've been trying to potty train him but have been finding it hard although I have potty trained my other 4 children with no problems. He is a very happy boy and loves life. We are looking forward to watching him grow and learn things in the future.
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