Just an update...we havent fallen off the edge!

So an odd few days! Lots of thoughts and prayers for Tia and LF and they have done so well...I am sure there are stories to tell of hospital frustrations but LF is the other side of the op and they are out of hospital....Praise God! Prayer continues for Strength and patience and energy for Tia to cope with the next few weeks with LF incapacitated and Mog needing her and the TA too!



Tia we give thanks for you daily and hold you up in prayer!



So there are other friends still in lots of need. They too are in our prayers.



Here things are continuing to frustrate and baffle and confuse and worry us. Legal battles still being fought, Professionals involved in our life of neccesity most frequently are trying their best to support us but often not knowing quite how or having to let us down, or having their hands tied by red tape. Or just occasionally not wanting to help when they could and really should!



We have had some fantastic support very recently from unexpected quarters. An impromptu meeting with Eve's class teacher was emotional but helpful, knlowing she was really doing her utmost along with her staff to give Eve the best they could. Hearing her tell us how Eve is in class was also reassuring becuase we know they are seeing the things we see and are as concerned as we are. Of course that acknowledgement comes with the flip side of reinforcing the fact that Eve is deteriorating.


A chance meeting with a friend and a chance to offload a little of my emotions.

Then some phone calls with professionals aiming to resolve the next stage of tests and experiments and possibilities to may improve Eve's quality of life...and if not improve it then to maximise it.
The consultant in charge of the Sleep Study rang and we were able to discuss the importance of them getting an accurate view of the difficulties Eve has with her breathing, gaseous exchange and muscles of respiration. This discussion has left us makeing a difficult decision and one to which there is no right answer. Eve is on constant oxygen at the moment and this has improved her quality of life incredibly. Her body was so exhausted with the inability to exchange food and oxygen to energy....that is the crux of Mitochondrial Disease, an energy crisis. Adding constant extra Oxygen appears to have given Eve extra energy to smile again and to have some time of the day when she is bright and alert. We need the Sleep Study to see the effects of normal breathing, and to see if there is another option to the oxygen to give Eve the extra boost. So we have come to the decision to withdraw the oxygen for 48 hours before the study. On the understanding that we keep her constantly monitored and if her oxygen levels start to drop we will introduce Oxygen again for short periods.
At ther same time as the sleep study the neurologist is hoping to arrange a nerve test...Eve has a problem with her heart rate and it could be that nerve impusles are the problem, in which case tnheir could be something to offer to ensure her heart does not slow down enough to stop....that would be good!
We are also waiting for an ECG 24 hour monitoring to look at what her heart does over the period of 24 hours.
We meanwhile are trying to ensure that we make the most of the days we have now....it is to easy to keep waiting for the next appoiintment, keep waiting to see what can be done,. whether there is a way to react to what we see....we have lost 8 months worrying waiting and grieving over this diagnosis. Eve needs us to make the most of today and the rest of the family need to live their lives now. We have to move forward....and so

Next week is half term and we have made soime exciting plans for Thursday and Friday...your prayers that all falls into place and the children are well enough and happy enough and co-operative enough to enjoy it to the full!
Thank God for good friends....in this case good friends who have good friends...we have been offered a bed for the night for all of us plus carer! To enable us to make two days of this opportunity. I am not going to expand in case it gets back to the kids...I want it to be a surprise!
So that is us for now!