He was quickly transferred the same day to St Mary’s NICU in Manchester.
After 9 weeks of waiting for him to be big enough and strong enough, Harry finally had his gastric interposition surgery to move his stomach up into the chest to fix his long gap – the days that followed were a hard recovery for Harry with a chest leak and infection.
We’ve been lucky that he’s only needed further surgery to remove his tonsils due to mild sleep apnoea being caused by them being large and blocking his airway when he lay down and grommets fitted in both ears to help with glue ear, a common problem due to reflux causing congestion in his ears.
He is on regular medications 4 times a day to control his reflux, an iron supplement and multivitamins as despite, having a varied diet, his stomach just doesn’t have “time” to start processing food properly before it passes it on to the next part of the digestive system.
Foods that were safe one week might not necessarily be the next, but as Harry has gotten older he has learned to recognise his triggers and sometimes has cleared his “stickies” with little more than observation and encouragement from me.
He loves Minecraft, basketball, Lego and Pokémon – collecting just like his peers. He is fearless and resilient as described by his teacher after his most recent Robinwood trip for some of the challenges he took on and overtook his peers at completing.
We now await the next chapter of Harry’s life as he is due to start high school September 2022 which will mark the beginning of him finding his own independence as well as learning to take care of his medical needs in a whole new environment.
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