It would appear too much Life got in the way!

Just realised I have not posted a blog since 27th December...oops that is exactly 4 months ago.
I shouldn't really be blogging now, I have far more important things to do. But hey! Im here now so I'll just update a little.
We are heading to a massively important review meeting about Joshua's Education next wek. Prayer point number one!
Joshua is really struggling at school. The more he struggles and the less he achieves the harder he finds it to apply himself to his learning. This has come to the point that it is spiralling out of control and Joshua's emotional wellbeing has definitely been suffering. Joshua has requested that he be moved to the school for the blind in Worcester, New College Worcester. He wants to restart year 10 in September and have the opportunity to fully access the curriculum for the subjects that he wants to do.
The LEA are reluctant to move him. Despite Joshua actually writing directly to the SEN officer himself on two occasions he has never received a direct response. His current school are supporting his request, the school he wants to go to are supporting his request but the Sensory impaired service and the LEA are not.

Earlier this far Jonathan was admitted to the Glenfield Hospital for investigative surgery which would hopefully lead to corrective surgery on his heart. Jonathan has had some problems with a rapid heart beat and is treated with drugs to prevent this, but the drugs are causing their own set of problems. The hope was that the investigative surgery would discover the accessory pathway of nerves that was causing this and they could be obliterated. Unfortunately the nerves could not be identified and therefore they could not be destroyed. Also during this surgery they hoped to identify the hole that was causing him to have blue spells and increased fatigue and to close it using a catheter device. Again this was unsuccessful as the hole was not what they thought and was not able to be closed. Jonathan has worsening difficulties from this hole with an increasing shunt of blood from right to left in his heart. However because of his previous heart surgery and the difficult nature of the procedure it is unclear as to whether this will be a risk worth taking.

Rosie continues to be Rosie! We have seen an increase in her non convulsive and complex partial seizures, we have also seen a decline in her sleep pattern. The neurologist is convinced there is a connection but unsure of which was the cause of which. Rosie started on a new Anti convulsive drug a month ago, just at night and one which has more of a sedative effect. The jury is still out!

Eve, since her tracheostomy Eve has been so much better. More awake, more alert, more able to interact and partake in life. However it has come to our notice this last week that her Kyphoscoliosis is definitely deteriorating. She is now getting pressure sores in the areas that fold over on themselves and on the points of her spine that now have excessive contact with her chair. We are going to have to revisit questions long ago dealt with, relook at decisions made then and possibly discuss surgical options. A full correction is not an option but maybe something less radical can help. Meanwhile the Physio and OT are going to arrange a Wheelchair service appointment that they can attend with us to ensure we look at the best possible option for her.

Christina is doing OK, she is 13 and has all the usual complications of life that of along with that. As well as her own difficulties and frustrations. Mostly she is wonderful, but occasionally she can drive us all mad!

David and I have both had some health issues of our own to deal with. I am now on my 3rd Rheumatologst who does seem to listen at least! Trying a new drug at the moment but I am not sure how much it is helping and whether something new has occurred because of it. We will see.
David has had an issue with his eyes that has not yet been resolved but is not causing any major issues with his vision at the moment....ostrich is good!

So that is us at the moment! I really must try and get some pictures on.
Hope all is well with all of you. We value your prayers!