27 June 2011

Check out these stair gate, totally out of stock in UK. If you happen to have one or two that youd like to donate please do so.. they are just what we need.......
Lascal Ltd KiddyGuard – keep your child on the safe side








26 June 2011

AOS and MAP

  Often people contact me from all over the World sending Daisy and our family words of positive support. Theses words general reach us when I'm at breaking point or when Daisy has had a Low/Slump in her Health. 
 On days everything is going great, smoothly, then, before you get a chance to realise its all going so good .... a change of path kicks in.
   This, For over 2 years has become our Families most common barely functional  routine -
 Few weeks up ~ few weeks down ~ Who knows ?? 
 Eye infections, Apnoea attacks, febrile convulsions, chicken pox, septicaemia, infections of the blood, random skin infections , medications, MRIs, CAT scans, Specialists, specialist hospitals, we just never know and are never prepared for tomorrow. 

  This is where my sense of spontaneity's ,  lack of forward planning, great UNorganisation, and ability to go days without personal care or knowledge of where I'm sleeping, eating even going too next comes in! 
  Its a real bonus being able to carry my life in a small bag filled with Daisy's paper work, telephone numbers and continue to function in a normal is normal gets manner.  Its MOTHER F****** auto pilot.

 As I grew up, I always envied Mum more and more with the way she regularly juggled life so well. 
                OMG! WTF! LMFAO!                                         Fucking
Get the MAP  out ~ MOTHER^AUTO PILOT ! 
I'm on the MAP, PAM (My mums name is Pamela)
Note to oneself-
 Never visit my mum for sympathy you'd get 'Oh well' or just 'ooo'     - There is was No long conclusions, evaluations or time to dwell, contemplate. No ifs or butts... Just KEEP CALM AND CARRY ON attitude.. That is one of the greatest attributes my Mother has given me. Its got me this far 
   Searching the Internet and I am slowly contacting chatting to other Families, Individuals and knowledgeable professionals alike, that have links or an interest with AOS (Adams Oliver Syndrome).  Its not nice to know that others have gone, or are going though all the worry and the extreme emotion that my family have and are experiencing. My only hope is as we find each other we can share blood,sweat and tears. Be there when times are tough and advise, cross-reference on the little information that we get from our Medical Professions involved. 
Please add any comments (on the comment form) you like and it will post below.
Links of any information you feel others may benefit with, are always wanted again greatly received.

15 June 2011

Well this is a fucking laugh a minute, shit... totally on my arse,walking round crying. Mark comes home from work, moans about what I've done and i don't blame him the house and me look like shit.
  My task of painting the very small bathroom has taken over 6 months,finally i have the first coat on the ceiling. cant wait to not have to bath and dress without painting equipment and step ladders falling on me. I'm absolutely whacked out, not physically, mentally.
  I had my eye test about 1 month ago, daisy played up the whole time , throwing her hat off and grabbing her head,pushing her fingers in. I left half way, got my percription, didnt get chance to look at any glasses. The optision said my eyes had deteriated more than they ever had before(from test to test) and asks 'had anything changed? new job? driving? more stressed? ....I had visions of me grabbing the bowl fish bowl specks of her, placing them firmly on her nose bridge and sceaming 'look through these,NOW DO I LOOK STRESSED??  ... big time.
Im sorry this blog is so negitive its mainly for the benefit of the general support system around me, Im kinda hoping someone or something will step in soon, like before i end up in a nut home not even knowing my own name. when i went to buy the paint and small roller tray weeks ago, i went to the same shop twice and brought the same items, all bar a different make paint (same colour/wipeable stuff) the second time around id totally forgot id already brought it. Ok we all do things simular, but the second shop was 2 days after the first!! and theres other goings ons that make me think ok, breath........and breath again.........
well how exciting daisy can crawl, not!, every day i clean the blood from the cot, this morning i even got a bit of flesh. wow, but hey not to worry as her little clever brain is there all protected with that skull around it.....whoops oh no it isn't..........ok, so theres no skull protecting the top of her head and she wants to poke her finger in it, and the skin keeps breaking and bleeding because shes mobile and wont wear her bandage. i told mark not to work weekends any more, but the last few weeks we have suffered as his wages have hardly kept us afloat!. £40 per weeek on school dinners!!, bring back turky twisters i say.! ;-)
so yep hes working this weekend, i feel like running away, but who would feed the kids??
as ive had no help ,advice, or support in finding/building or providing a safe area for daisy, ive thrown the towel in. this is a break for me these few minutes that i muffle on to you lot, what lot there is of you??, and to be frank this typing stresses me out i cant spell, im a lazy writer, and i dont even know why im writing...........
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