Life in our House!

Seems to be continually trying to get the better of me!

Increase fluid decrease calories increase Saliva decrease Sats child drowns and decides breathing is just not necesary.

Eldest child seems to be adjusting to a liquidised diet, manages to come up with a good option for his tea every morning as he leaves for College...Bye Mum Fish Pie night?

It is amazing what will go through the stick blender and come out looking and smelling reasonably appetising. Tonight he wants Sausage mash and beans...mash and beans together and sausages in some gravy is what I will try...who knows?? Beefburgers liuidised ok last week. I must admit to cheating a little on the Fish Pie yesterday though, Jonathan was happy so that was OK a dish of Instant mash mixed with half a tin of pilchards in tomatoe sauce topped with grated cheese and melted under the grill...looked almost good enough to eat! He made short work of it and asked if there was any more. I am now on the look out for an affordable rechargeable Stick Blender...I have seen one at £200 but I think that is a bit over the top to blend food when out dont you? I dont want to have to give up eating out though...being able to shove anything through the blender means we can continue to eat out on holiday etc.

Rosie seems to be wanting to challenge school at the moment. I am not sure what is going on with her and school She sounds as though she may be having some non convulsive stuff going on..lots of agitation kicking pinching etc...I am sure a dose of her rescue medicine would help...unfortunately unbeknown to me she doesnt have any in school...must rectify that. That said she has come home from school happy and pleasant and not agitated at all...seems a bit coincidental to be fitting so much at school and fine once home...but other than something being majorally wrong at school I dont have anyother Ideas. Will put the rescue med in the bag tomorrow and hopefully they can try it if it continues.
I do have one theory but school dont seem able to address it, Their topic at school right now revolves around food, at Christmas Rosie had to stop oral feeding...I am sure being surrounded by food topics and seeing her friends eating is not helping her at all. I think if I was not allowed to eat and was being immersed in things to do with food I might be a bit cranky myself!

Christina is recovering from an apparant stomach upset...only I am not convinced it is a bug...I have a concern that it may be stress related...it started after we got back from Sheffield and culminated in a night of severe vomiting and diareoah the night the sibling workers came to see them. She does seem better today and hopefully will be well enough to go back to school tomorrow.

Joshua plods on..he is often quiet and looks sad, then when you speak to him he brightens and seems OK...not really sure where his emotions are right now.

David's leg is at last looking and feeling better. Still needing packing and dressing daily but is no where near as painful as it has been, he says it is more sore than agonisingly painful, he has managed to drive more and has even managed to do a bit of work around the house...fixing the leaking stop coick at last! He has also done the rubbish today and we have put together the Bed Settee for Rosie's room we bought at Ikea in half term. Progress slowly slowly. He is however appearing mildly depressed, struggling to get on with stuff and generally miserable.

Me , I am somewhere between exhaustion and extinction I think. I have really struggled with my joint pain over the last few months, the Rhuematologist had this wonderful idea of appreciating I was really struggling with pain and suggesting I really ought to cut down the steroids from 15 mg to 10 mg daily...I have not managed to do this conistantly because there have been days when without the 15 mg I have been unable to function at all. I had a scan and X ray after my last appointment and today went back for a review, The scan showed significant inflamation despite the high doses of Predniselone, This left the Rhuematologist struggling it seemed. Anyway his new suggestion is to increase the Methotrexate and give by weekly injection rather than tablet...He wants to check another aspect of my bloods although he didnt elaborate on that, and then I hav an appointment to see the Nurse and be taught how to inject myself! Hmmm I am needle phobic and am about to start injecting myself every week...I think that will probably explain best to those who know me how desperate I am to get on top of this pain!

OK So Eve is now starting water after her feed at 10mls per hour! lets see if she can tolerate however much that gets into her overnight! Tomorrow she is going to a local factory outlet centre with her class...I hope they are not afraid to suction her in public...maybe I should stress that I suction Eve wherever we are when she needs it...it doesnt have to be in private!

OK Off to liquidise the dinner!