Well done tallula!
Just thought i should update James condition. Hes ok, my EB nurse came yesterday and she said to me that she thinks James is okay, he is stable. As his parents, the most difficult part of taking care of him is watching him suffers, i dont mind taking care of him, its part of parenthood and i think you look after your child anyway no matter if he.she is well or unwell...he needs 24 hrs special care but i have never felt its a burden, i love looking after him...its the fact that i cannot touch him which upsets me a little...
James is getting stronger as well which makes looking after a bit more difficult as well, he gose crazy when we change his dressings and so the back of his head gets loads and loads of blisters, as hes lying on his back all the time just like other babies...the blister popped itself and so its a real mess...sometimes i get so emotional..but then i just have to put my emotional in a box...change his mitts is heartbreaking, its a task i do everyday and i feel upset each time...
James seems to rub his eyes and face more now..as a resut, he starts to get a few tiny blisters on his face...i can only try my best to stop him...sometimes i feel angry..he cannot do what other babies do ..rubbing his eyes or face, is something that most babies do,...hes not allowed..
We went to Robin House on Sunday as my EB nurse suggested that Martin & I should go and have a look,..its a children hospice..i remember its raining on Sunday when we were on our way ...i thought about James, ...missed him so much even hes home with my parents...then i thought..Martin & I are going to a Hospice..our son is really going to die..then i cried..just couldnt hold my tears..its true,.hes not well and he isnt going to live for very long...
Robin house is a lovely place, its not horrible, i think we would consider using it when the time comes....i saw photos of kids with their parents..kids who used the place...i felt sad...i have never given any thoughts about illness...children live their live with life limiting illness ..i have never given any thoughts until it actually happened to me...then i realise we are just lucky to be born healthy and lucky to have given the chance to live and be able to do most things...
Its a dilemma when you have a baby with EB....you cannot give your son a cuddle...i dont think i want to watch him suffers for many many years then die slowly but losing the chance of seeing him grow also saddens me....you know what you are hoping to see ..you want to organise a birthday party for your child..you want to hear him talk for the first time, you want to encourage him to walk...you want to hear him calling you mummy...........there are so so many things i will miss out..
We were told that its 1 in a million chance to have an EB baby with Receesive Dystropic EB...but James got the most severe form of EB, Junctional Herlitz which is more rare..so i reckon its probably 1 in 2 or 3 million....my hushand said..he thinks James picked us out of million couples cos he knows we are capable and we have the love for him...i said to him..i only wish he hasnt got EB... i used to think..i am chinese and martin is english..our son will only get the Best Gene from us..he did pick our good genes cos hes a big boy and hes very bright but he also picked our bad ones by accident..i only wish he didnt pick my faulty one or my hushands faulty one then he would have been well though he would still be carrying the faulty gene..
Hope everyone is well...by the way WO, thanks for the stone..i carry it everyday, i put it in my purse and i rub it when i feel sad