From My Blog - Sat 31st May.........
Well............. its been a busy month!
Update on Charlie for all my wonderful friends who have been asking about him.
Its kind of a 'good news/bad news' thing realy.
He Came home mid May & he is responding well to the treatment, unfortunatly his Kidneys havent picked up & worked again so he is now on Dialysis 3 days a week, Monday, Wednesday & Friday mornings, which he has been ok with........... only he hates the Blood pressure cuff with a passion!
The nurses can hook him up to the Haemo-dialysis machine, give him injections, whatever with no problems, he sees that blood pressure cuff and he screams! You cannot explain logicaly to a 21 month old baby that the more he stresses n screams the longer it will take, or that its not actually something to be scared off, it just doesnt work lol, we have developed a devious method tho, we put the cuff on n cover it, n let him play for a while then hook the tubes up when hes distracted, so he only gets stressed when it actualy springs to life! (doesnt work mind you, he still screams but at least he isnt as stressed for as long!)
He is kind of unofficialy on the transplant list now, and we have started asking about testing, so far Aly (his mum, my sister) isnt a blood match, Chris is a 50% match, so its down to if any one else matches, Both sets of Grandparents are excluded cos they are all over 65, so its, me, Our Brother n Chris's sisters next, then the 'in-laws' and Charlies God-parents want to be tested, theres no shortage of volunteers, We already know Lauren, our sister in law isnt a match, cos shes the same blood group as my sister.
Just keep your fingers crossed one of us matches cos apart from us, Apart from that there's only the girls - Charlies Cousins - but at 3, 4 & 6 they are far too young.
We are still keeping our fingers crossed we can all go on our Annual family holiday this year, we are supposed to go on June 21st, We are hoping that we can arrange Charlies Dialysis for Early Friday morning and then hopefuly late Monday or early tuesday so they can at least come for a long weekend.
I feel so bad for Aly & Chris, for the first time ever they had pre-planned all their holidays for the year, and now they have had to cancel them all, including Charlies 1st ever foreign holiday and they were so excited about taking him on his 1st 'proper' holidays, so we are realy hoping that we can at least get him away for a short holiday at least, it will do them all good.
