firstly i would like to say oops no cards to show today...but one ready to be put on in the morning i promise.
but tonight i thought i would say thankyou for the kind comments you have said about my son Adam and his pic in my sidebar, and i wanted to tell you more about just how special he really is to me.....well he took 2 years to conceive him from fertility treatment and he was diddy when he was born at 5lb 130z but i didn;t care i had my long awaited bundle...but on day 14 of his life i had a phone call from Great Ormond Street hospital to say for us to go as they feared he had got a metabolic disorder called Phenylketonuria (PKU). He was diagnosed with this condition the day after and he is a rare little boy of 1 in 15,000. The condition simplified bascially means his body cannot tolerate protein into his body and the subsequent effects is brain damage!!! So as you can imagine i was totally shocked at the time and it took along time to take in his condition and his outlook on life. Every milestone has brought its ups and downs but we manage, foods have to weighed out for him and he has blood tests done weekly to monitor his protein levels and even simple foods of sweetcorn or potato has protien in so they have to be weighed before he can have a tiny amount. he is now 5 years and is a happy boy most of the time yes its hardwork and sometimes his protein levels reach levels that he can;t handle so he is not the adam i know but i wouldn;t change him for the world...especially as 3 years ago i gave birth to a stillborn baby whom we called George, he is soarly missed in my life and makes adam even more special to me. Adams outlook is good as long as we maintain good levels and he follows the strict diet then his brain won;t suffer. this is a lifelong condition for him so many more milestones for us to handle yet...
Well thats my ramblings over for tonight, would of been easier to of shown my card now lol..thanks for reading if you've got this far emma xxxx
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Goodness me - what a special little chap he really is. He has a super smile - what a cutie.
ReplyDeleteEmma, my children are my life line and i'm so lucky they don't have any serious problems, only small ones compared to what you and Adam have to endure. But he's a credit to you, he looks gorgeous and he definately has a twinkle in his eyes. Your not rambling, children are very important little people and deserve all the care and love that can be given, i'll listen any time Emma.
ReplyDeleteBest wishes to you and Adam
Happy crafting
Tracy x
What a gorgeous son he is hun and so sorry about your other baby :o(
ReplyDeleteI understand what you are going through because I have had a different but similar story too. Always here is you ever need a friend :o)
-x-
Thanks for sharing Adam's story - I've never heard of PKU before! I'm sure it can be tough going some days.
ReplyDeleteI went through almost 10 years of fertility treatment ending with an unsuccessful pregnancy, so I can understand how totally precious he is to you.
What a precious little boy he is- Have to say i hadn't heard of it before and did actually look it up. So sorry to hear about your other bubba and it sounds to me like you are doing a fantastic job,I wish him all the best for the future.
ReplyDeleteSuzie Q
xx
You know how much I love you both - enough said! Jo xxx
ReplyDeleteWow Emma, Adam looks like such a healthy little boy which means you are doing a fantastic job at keeping the protein leves under control for this little fella, I hadn't heard of PKU either and like Suzie had to google it. What a special little boy Adam is he is a real credit to you :) Donna x
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