Here is Oliver's quilt!!
I can't thank you enough, it really is amazing and I don't think the pictures do it justice.
Fantastic stitching you should all be proud of yourselves for taking the time and effort and producing such good quality work/quilts. He certainly loves it, can't stop looking at all the Mickeys.
(His little brother Charlie has joined him).
Thank you Oliver and Louise xx
Normal pregnancy and birth. We had a heat wave in the summer of 2010 in which Oliver had a seizure lasting seconds...he was fine so didn't seek medical attention. A few wks later he again had a seizure (which at the time we didn't know were seizure as it was infantile spasms). So we took him to hospital, who kept him in for observation due to the fact I mentioned he'd had the previous seizure. After 7 long hours he was completely fine and we could go home....then he seized!! At that point what felt like 100 dr's/nurses surrounded him and looked at me and said were not going anywhere. The absolute worst feeling ever....knowing now that something was seriously wrong with my son. He continued to have seizures over the next 2 days whilst they done tests etc he had a ct scan which was sent to Southampton who gave the initial diagnosis of Lissencephaly.....at that point no one knew anything about it at our hospital.
Another 2 days later we went home and then researched it and realised his true fate.....that's the day our lives changed forever. He was put on Meds and had OK seizure control for 4 months, he had genetic tests which confirmed the diagnosis.
He turned one and couldn't talk, roll over let alone sit,stand etc, had his first pair of glasses (long sighted, nystagmus and astigmatism). over the next year his seizures worsened, many med changes he did learn to roll over and was rolling about every where. However his ability to eat was deteriorating. He also had many chest infections.
Now 3 he has a g tube in situ, had the fundo done for reflux....still no seizure control, chest infections and his mobility deteriorated. From then till now just turned 5....not much has changed he still can only roll over (not about) non verbal, only g tube fed, after being very very poorly had tonsils out. Had numerous hospital stays.
It's been nearly 4yrs since his last seizure free day. His fundo has loosened so will be tightening.
BUT he has started school, has a girlfriend called Bethan. Is doing well with eye gaze and can now press a switch button to say hello (he's never been able to use his arms or hands).