I have one very happy little boy this evening!! Huge thank you to everyone who was involved in making Connor's beautiful quilt!! Thank you to Leanne, Sandra, Jan, Kay, Jill, Joanne, the two Karens, Anne, Debbie and Becky for the wonderful squares you all stitched. A massive thank you to Leanda for putting them all together and creating such a magnificent quilt and also for the lovely card. Thank you to Gaynor and Kat for all the hard work you put in every day. We are so very grateful!! Xxx
Connor was induced 5 weeks early due to foetal distress. As he was a healthy weight and appeared well he was allowed home with mum the following week. By the time Connor was 2 weeks old he was admitted to intensive care as he kept stopping breathing. He spent most of his first year in intensive care units having various tests and exploratory operations. He was finally diagnosed with Congenital Central Hypoventilation Syndrome and Klinefelters (which is caused by an extra chromosome). Through the testing of Connor it was found that this was sadly what his older brother had previously died from.
Throughout Connor`s life he has had constant struggles with his health. He has to use a wheelchair which is not typical of klinefelter's boys and so this is why they believe he also has an as yet undiagnosed neurological condition. Connor is unable to do pretty much everything a "normal" child can do. He goes to bed at half past seven, by choice nearly every day as he just cant cope with a longer day. He no longer attends school as they can not meet his special needs so he is home schooled. Everything is a big struggle. He spends an hour at least a morning on the toilet. He does like a page of 4 lines of writing before he needs a rest because his hand hurts. He spends lots and lots of time in bed watching films due to constant pain and fatigue.He refuses to sit on the sofa as he says it causes pain and is uncomfortable. He will watch tv in his wheelchair only if he has padded it with a ridiculous amount of things like 3 duvets! Connor is like the Princess and the Pea book. Everything has to have layers and layers of duvets, blankets and pillows until it is comfy.
He only went out to socialise once a week to a special needs fun club but he kept coming home collapsing on the floor and being violently sick so he had to stop this also. To attend a hospital is a bigger task for Connor than lots of children as he has to get up very early and travel by boat to the hospital as we live on an island. Shortly Connor will have to make this journey more regularly to have fortnightly hormone injections which he will be extremely distressed about.