Life in Our House!

Goodness reading my last post it seems such a long time ago I wrote that.
Jonathan has not collapsed again since coming out of hospital, he does though seem very very hypersenstive to noise. I am not sure if that is an anxiety reaction to all that has happened to him or whether it is a side effect of medication. He really does over react to sudden unexpected loud noise.

Rosie has had a week of agitated seizurey behaviour related to her monthly cycle, the Sunday was the worst and her seizure activity built up and up until she was totally out of control and lashing out at everyone and everything in Church. Iris kindly took her out of the service to chill out in th eback room, but not until we had given her a dose of rescue medication and then after a little while the medication took the edge of her behaviours and she was able to calm right down. The knock on effect of this was that the afternoon was spent in giggles and siliness, much prefer that to the agitation and distress of her non convulsive stuff anyday!

Eve continued to be unwell lots of suction needed and stil needing 2 litres of oxygen by day and 6 litres by night. She has been happy when she has the energy to be awake but is sleeping loads. We have been back to see her specialists at The Childrens hopsital. they agree she has lost ground but her chest xray they took does also show she still has areas of infection. A sputum sample was taken by suction and ent to path lab and a few days later we heard back that it had grown an odd bug that needed treating. So she has just finished her third course of antibiotics in 5 weeks
Now we are riddled with thrush. Thankfully the comunity nurse has faxed a request to the GP saving me a visit there, unfortunately the pharmacy didnt have what was neded so we have to arrange someone to collect it tomorrow.
Joshua is having more and more difficulty with his deteriorating vision.
We had his school report last week followed by his parents evening.We know he has a problem with History, the teacher just doesnt seem to understand VI at all. Joshua has told him if he doesnt enlarge the work for Joshua Joshua cant do the work...he seems to think using the interactive white board counts as enlarging...sadly Joshua cannot see anything on the interctive white board!
Joshua is doing really well in many of his subjects. Science, Math and French and German he excells at, ICT he is doing really well and English he is hindered by the behaviour of the other children, but thse kids are in other subjects too so it apears to be the English teachers lack of control that is the problem.
Geography and History though they are telling me he lacks commitment, doesnt ask for help, doesnt give his all, gives in unfinished work and is underachieving.
Now if everyone else in the school is telling me he has a great attitude, is realy committed to doing his best, always gives in completed homework , then I can only surmise that the problem lies more with the teachers than the child?
Joshua's vision has deteriorated dramatically, he is now at a point where he can be registered as blind rather than partially sighted, he is struggling to read printed word below n18 and finds handwritten stuff impossible including his own handwriting. I am really not sure what we can do to ensure school are able to met his needs. I have spoken with the LEA about a Statement of Special Educational Needs, we will have to wait to see what the outcome of this is.
Meanwhile Joshua is going through the assessment process for a Guide Dog. This week he had the next stage of Assesment, working with a trainer with a short handle, the trainer being the Dog....apparantly Josua did really well with isntruction and correcting the dog. He now has to wait for the report to go to th manager and the manager to decide whther Joshua can go on the waiting list for a dog. Prayers for this to go ahead and move through quickly would be appreciated.

Christina has a nasty expreience at school recently, a girl oin the year above her suddenly saw Christina as a nice Bullies target...it tok a while for Christina to tell us what was happening, but on the morning of Sports Day Christina was making every effort to avoid the Sports, This is really out of character as Christina is really sporty. Eventually she broke down and told me she was being bullied. It all stemmed from her comforting a boy in year 8 who was upset. This boy has a speech impediment and Christina had seen him crying and put her arm around him, the other child had seen this and started with "oooh you have a boyfriend then"?
It escalated over time to cornering her and asking had she kissed him, and was at the point of her being pushed against the wall/fence and jeered at and taunted.
A phone call to the Care and Gudance team and a letter to the Form Tutor and it appears to be sorted. I do hope so, I hate Bullying!

So this week I have had visits from the Hospice, The community Nurse and phone calls from various other agencies. Lots of discussion around Eve's prognosis and care and equipment. The continuous concentration of emotions on Eve's needs has taken it's toll on me. I am struggling to keep a positive perspective.
I love our Community Nurse Dearly, She has helped us so much in so many ways, even when al she does is listen on the phone. Over recent months she has become more hands on support, making phone calls on our behalf and resolving issues that would take me several appointments. Today she emailed me the number for the 24 hour Palliative Care Nursing Team. She was concerned that we could be left flailing for helpover the weekend and wanted us to have a point of call. Wonderful to know that the help is there but somehow another step taken down that road....being worthy of having the number.... (probably makes little sense to anyone not on this road)

I want to end this Blog with a precious moment from two Sundays ago. Fathers Day. Rosie was a bit lively, but not unhappy, marching around the Church as she often does handing out the Hymn Books, (we dont use books generally the Hymns are displayed on an overhead Projector). Rosie likes to hand out books and go round and collect them in again and then hand them out to others. Most people happily take a book and happily hand it back. On her route round after the first Hymn she came across two ladies who were weeping. One of these Ladies had lost her husband last year in a tragic road accident, the first Hymn had been one of those that really hit her, and she was weeping, her sister in Law had also succumbed to the sorrow of loss, As Rosie handed them a book each she notived soemthing was not right. The each took a book and spoke to her, but Rosie tok another look and then walked round to the row of seats in front wich were empty, she climbed onto the seat infront of the berieved wife and lent over and took her hand, knelt there holding her hand and gently smiling at her. She stayed there motionless for quite a few minutes before the next hymn and she moved off and was taken out to Sunday School.
The lady in Question felt very much that Rosie had ministered God's Grace and love to her in that moment!

I will leave you with that precious memory!
Tina