Oh goodness too much life to blog

Yes Life in Our House is just too hectic right now. All sorts of redesigning going on and movement and sawdust and brick dust and mes.

I really am not a very god housekeeper and the place is in more of a state because my cleaner has been having a lot of compassionate leave due to her own family difficulties....side note please remember Debbie and her family in your prayers.

Meanwhile a certain little girl has had a birthday. Eve became the newest 7 year old on Friday. She had a very exciting day. Presents and cards to open before school. Off to school and more presents and cards, a birthday cake to share with friends and then by 11.20 fell into an exhausted sleep. had to be woken up to join in the assembly at the end of the day for the whole school to sing happy birthday and for her to recieve the star of the week award for her hard work...hmm maybe for managing all 3 of her scheduled days at school?

Home again and a visit from Nic and Sue and Grace. more excitement with more presents to open and cards to read and more hapy birthday songs. Always exciting sitting with Nic and singing and making rude and silly noises...Nic not Eve! Giggles and fun and wonderful smiles....sorry they are not on this computer so will have to share them another time.

Sat back in her chair to sit at the table with us for her birthday tea. Ok she cant eat it but she can dictate we eat sausages and jacket potatoes because she likes the smells! More excitement with sparkly candles and cake and more singing. Then resting to watch TV and OH dear perhaps there had been a little bit too much excitement. The fitting started subtly with little jerks, growing to bigger ones then eventually culminating in a full blown Tonic Clonic Siezure....Bed time brought forwards and meds given and Eve settled into a peacful sleep, the ventolator taking over the effort of breathing.

Then Saturday dawned and a whole new day of parties and fun and excitement. So we delayed the start and left Eve sleeping with the ventilator taking the strain, left her snoozing until 11 O'clock then as she woke we slowly turned down her oxygen then took off her mask and let her slowly regain control. A bath and hair wash wore her out just enough forher to rest happily in her bed until it was time for the party. All up into the bus and off we go. 18 children several adults and fun and laughter. A good time was had by all even though a couple of children reached overload towards the end and left in tears. Mum's embarrassed by the attention of strangers and children losing alltheir self control. Reassurance given to Mum's that other peoples attitudes were problems belonging to the strangers not the fantastic Mums of the very special children. Smiles returned to adults if not to children. And then everyone was gone and we headed home.

More presents to open and cards to read and bed called early.

Sunday was a restful day, Church was good. Sarah had made a surprise visit home and of course Rosie took full advantage of her friends presence. The Hymns were good the message challenging and the congregation loving.

Monday Dawned early of necesity. An early appointment in Nottingham meant an earlier still start for us. Rosie was awake early and so she was in the bath and fed by the time the carer came at 6.45 I left Carer to finish Rosie and went to get Eve up. Eve dressed and downstairs. hair done, Ventolator cleaned and packed books signed rosie down and that was it David and I had to head out the door.

My Long awaited appointment with the Rheumatologist/Immunologist had arrived, the traffic was busy and we were going to be late. I rang to let them know and it wasnt a problem thankfully. Nottingham QMC is not an easy place to park but the department we were heading for had it's own car park and so we found a space quite easily and entered the new department. A friend from the Lupus support group had come to meet us which was wonderful. So good to know that friends care enough to support us through a new experience.

Eventually I got to see the consultant. He was lovely, gentle, kind empathetic, listened and heard. Was able to see and point out the joints that hurt, even the ones I felt unworthy of mention. Was able to tell me which areas were causing me most trouble and which were painful and which were nagging. At last I felt justified.

Several times during the examination and whislt we were talking he said he was amazed I was able to function. Found it hard to believe what I did. Was amazed I kept smiling....although it got embarrassing at times, it was also reassuring to know I wasnt exagerating the pain and fatigue that make things so difficult.

There was no magic cure. No instant decisions. Just more blood tests, lots of X-Rays and to wait for those results. He did suggest I increase the steroids for the time being. My other Rheumatologist had told me I must decrease them!

We left the hospital at 1pm. Our overiding need was for food! We found a lovely little restaurant and ate a good lunch. Then arrived back in time to collect Jonathan and head home. Everyone was happy and had had a good day.

I'm tired now. lots to think about.

Good night!