BiographyCaleb was a planned home water birth.
As soon as he was born I knew he was different to his brother and sister.
I knew he had Down's Syndrome. Having raised my concerns I was reassured that he was fine but 5weeks later after a blood test it was confirmed he had trisomy 21 - Down's Syndrome.
He thrived until 5months of age where he began having Infantile spasms. Despite many treatments they didn't stop.
At 8months old he spent months in hospital with respiratory issues, he was found to have central sleep apnoea and an unsafe swallow.
He was eventually discharged home on 24hr oxygen, overnight CPAP and a nasogastric feeding tube.
The infantile spasms evolved and he had other kinds of seizures, his infantile spasms became West Syndrome.
He got stronger and weaned onto a mashed diet, his lungs grew stronger and he no longer needed oxygen.
Having tried more medications and 18months of a ketogenic diet and further investigations- EEGs and MRIs, Caleb was diagnosed with Lennox-Gastaut Syndrome.
He stopped the diet as it wasn't effective and with it he managed to lose the nasogastric tube.
In January 2021 Caleb had Brain surgery - Corpus Callosotomy to help with the drop seizures.
Caleb has recovered very well, he still has seizures but they are much less than before.
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