Again, it's been a while. Life just passes you by and before you know it yet another couple of months has passed by. Shay carries on with life regardless of how he feels. In between never ending hospital appointments he needs to attend, Shay just wants to have fun like a normal 4 year old. He is now in full time school which most days he finds absolutely exhausting. Some mornings we let him go to school later and all he wants to do these mornings is to just lay down and watch movies.
The last couple of months we can see Shay's health deteriorating. Anyone who knows him only has to look at his lovely green eyes, he just looks so tired all of the time. When I look at him it is hard to stop your emotions spilling out. Automatic pilot is now a way of life for us, its the only way we find strength to cope with whats coming our way and being incapable of having no control over any of it.
Where do I begin with my little man? he is such a complex medical case its totally mind boggling at times. Between Alan and myself, somehow we get there at understanding how complex Shay is.
Shay has hit rock bottom with his eating. For two years now I have battled with Shay at times just to get him to eat. We have tried all techniques to get him to eat. There is nothing I have not tried. Someone said to me the other day "do you praise him?" We have learned to let comments like these go and just ignore them.
It now looks like Shay will have a feeding tube inserted directly into his stomach. We have an appointment in a couple of weeks to discuss this. Shay at the moment enjoys peperami's, sour cream pringles, vanilla ice-cream and not much else! I still manage to feed him his one weetabix in the mornings but he is even trying to stop that. I have took the pressure of his eating completely and if he doesn't want something then I will always find him something he will eat. His school has been fantastic with supporting him with his eating. He doesn't finish lunch at the supposed time and will only eat his two small peperami's. He will then have his tiny squares of sandwich late afternoon. We are pretty adamant that he needs this tube to survive and to take the pressure of him eating. All of his eating is supervised, if it was up to Shay he wouldn't eat at all (maybe just those dreaded peperami's). He will still be able to eat once he has the tube inserted but when he wants to. Once the tube is fitted we will hopefully see a big improvement in his general health and well being.
About Me
- Shay
- London, United Kingdom
- Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.
Our Daughter was diagnosed with Pearsons aged 3, after a massive lactic acidotic collapse. She refused to eat, and weighed 9kg. We had a PEG, and haven't looked back, it saved her! 2 yrs later, this became a Mic-key..we use it for many of her meds, and to top up her food intake, when she is ill, it means we know she is receiving some nutrition, she also refuses to drink, so down the tube it goes.It means a LOT less pressure at meal times, and now she does attempt to eat with us. She is now 14, her prognosis is still poor, and following 2 x strokes, they have decided we are probably looking at MELAS now, not Pearsons, but I hope this gives you some comfort, that that IS a way forward!!
ReplyDeleteFirstly my thoughts and prayers are with your daughter and your family. Your comment has given me great comfort in knowing that I am doing the right thing for Shay. He had his hospital appointment last week which did not go well. They are more interested in his vitamin levels rather than looking at the the whole picture. We know this is something we are going to have to battle for. As I too believe it is a step in the right direction in order to keep shay as healthy as we can,thank you so much.
ReplyDeletemy son was diagnosed with kearns sayre syndrome when he was 10, he is now turning 19yrs of age after Christmas. he too is full of life, what really bothers me as a parent is, i wish i could do more for him as his daily life depends on us me and his daddy. as he is not able to walk anymore, he is on a wheelchair now and he has hearing aids, heart pacer and he looks like he's tired, his eyes are droopy looking. he did have a surgery on eyes to get lifted but that didnt last too long. they wanted to put a feeding tube on him as well, i refused it and managed to get him to eat,eat,eat, thats when he finally gained up to 50lbs at the age of 16, he stayed at that weight what seemed forever. the heaviest he got was 60lbs, however when he comes down with the flu or a cold, he usally ends up in the hosp, knocks him right down to no stregnth to even hold his head up. that is some of his life i've shared with you, i just wish i could turn to someone for support as he may be the only one in Saskatchewan Canada that has this syndrome. The docors are learning as we are. my email is sando_36_2005@hotmail.com if you would like to communicate.
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