i really wanted to take owen swimming, but the problem is he does get heavy even water after so long, so i did alot of researching and found the perfect solution, i bought an inflatable neck ring, i had to get something that would keep him afloat, but also suppot his neck and back, well we went swimming and i can't fault the nexk ring one bit, owen's head balance on the ring really well, and even if i just left him to float he was fine, think i may need to do some more researching as he was a little tight and he's only getting bigger so may need to invest in a new one soonish.
after 2 years of waiting we saw the genetics this month, there's some things that can still be done which is good, they are looking at one last test that was sent to London years ago, and looking at something very specific, i was also told about a research study that we can take part in which is good news, it can take up to 7 years to get result's, but results are better than no result's in my eye's, we will hopefully be seeing the geneticist again when she has some new information for us.
i met owen's new neurologist this month as his old one has retired, owen's new neurologist s very nice, and we had good new's and bad new's it depends how you look at it i guess, i got the results back from his ECG and MRI scan, owen's ECG has proved there is some activity, which is neurologist does agree with me it could be down to absent seizure's which is good to know.
his brain scan is very bad compared to what it was 2 years previously, owen's brain is know shrinking, which 2 years ago we didn't know and there was no suggestion that it was shrinking, owen's know got alot of water on the brain also, it shows he is going to deteriorate sooner rather than later, his neurologist doesn't know how he's coping so well as he brain scans show he should be doing alot worse, and when owen deteriorates she think's he may quickly deteriorate rather than slowly, as up to know it has being a slow progressive deteriorating, but soon it may just happen very quickly.
it is very hard to hear, and it's like opening that wound that you are somehow trying to heal open even further, it's so hard to know that his condition is terminal, and I've known that for a long time know, but then hearing that it may be getting sooner which his life expectancy was between the ages of 4-8 years old, but when your told that it could be anytime, it could just be a bug that does it, just makes the pain even worse, I've always said i can't imagine my life without owen, i know i have to come to terms with it, but in all honesty, there is no way you can come to terms that your child is dieing, i guess the most positive thing's at the moment is that he is health and he's doing so well, and i have the time with him, it's not as if it a sudden thing, i know about it and i get to spend the time with owen, and make memories with him, he turned 5 this month which is another milestone for owen, he had his wish granted with was amazing for owen, he does normal things which is nice, he goes to school which he loves, and he's got lots of little friends in his class.
owen had 3 week's of due to his breathing, which again he had to have antibiotics to help, it's also no longer able to take owen up or down the stairs at home, as since his operation, he's just pilled on the weight, as know he is to heavy to carry up and down the stairs.
owen turned 5 this month, it's so wired to think how small (pictures attached) he was when he was a baby and now he's a little boy with a little personality, and a big cheeky smile, we went to sundown adventure land near Redford for owen's birthday, i normally do a party but this year i wanted to do something a little different and something he would really enjoy doing. owen absolutely loved it, he got to go on lots of different rides, the staff were very helpful, with helping me and owen on and of the rides, he was very tired out by the end of the day, but it was worth it to see him having such a good time.