Not the best of days

Rosie woke up still twitchy, runny nosed not happy. Noteating terribly well but wanting more! Dropping and crying and being generally not herself!

So we rang children's ward who agreed to see her once I had taken the others to school.
Now we live probably 10 miles from the hospital, 20 minutes is usual time it takes to get there when not confronted with the ush hour traffic....so leaving Eve's ursry at exactly 9 am I ws distraught to meet with tail backs miles from the town...I tried a short cut! Hoping to miss a couple of roundabouts and join the traffice nearer my destination I took a shortcut....sadly so had half the commuting population! I arrived on Children's ward at 5 minutes to 10!

The nurse who greeted s was lovely and assured us the doctor had one patient to see before us and would then be wih us! at 10.45 my patience was wearing thin...I allowed Rosie to escape the cubicle and she made her wobbly way to the nurses desk and stood behind the SHO. The nurse said:-
Oh hello Rosie are you telling the doctor to hurry up?
The SHO continued to sit and listen to the two more senior Docs chatting away about universaty and the merits of those who go on to be lawyers/Doctors/teachers etc.
Rosie tried to swin the office chair around and the nurse again commented on how she was waiting to be seen.....still no movement from the doctors.

We went in search of toys in the playroom and Rosie took a wooden jig saw back and thrust it at the doctors...still talking about universaty...Nurse again commented on rosie's being impatient to be seen!

at 11.45 I lost the plot! Eve needed collecting from nursry at 11.30, I had use the ward phone to explain I would be late as Rosie was on children's ward waiting to be seen by the doctors. That was at 10.45, I now went back to the desk and said I could no longer wait, Eve needed collecting from nursery and I had a meting at 1pm with education! The kind nurse told me to get off and they would keep Rosie until she was seen and a plan developped!

I eventually collected Eve at 12.20, got home and connected her to her feed, grabbed a coffee and a crisp sandwhich! I was just about to leave the house to head for my planning meeting with Education when he phone rang...it was the Social Worker, we still have unresolved issues from two weeks ago and she was arranging to send me copies of reports, thankfully she was also able to offer to cancel my meeting with the respite service for this afternoon as I was not going to make that! I remembered just in time that she also needed to cancel Rosie's transport to respite as she was not going to be able to go there either!

Arriving at my meeting 2 minutes late I was relieved to discover they were still waiting for the Ed psych caught up in the traffic I had battle this morning! (well in the same place probably not the same cars!) The meeting did not start well. This was supposed to be the meeting to resolve any outstanding issues for Eve's transistion into primary school in September, apparantly the school we had hoped she would go to was now saying they felt unable to meet her needs! they had not contacted us, and had offered their appologies this morning and were not represente at the meeting. Maybe worse still the Education Authority had also sent appologies as their statementing panel was meeting this morning! There was no indication as to how Eve's statement had been discussed nor advice on where we go from here!

It is rather difficult to hold a useful meeting to discuss transition when you dont know who, where, or how you are transitioning a child???? Needless to say I was not impressed!
we did manage to discuss some other things though. it seems that those working with eve are finding it very hard to judge the consistancy of her communication....the discussions that ensured revealed some lack of appreciation of the complexities of her difficulties...eye movemen problems, head control issues, hand control/function difficulties....they had all noted her tendancy to stop breathing and seemed rather tied up in this as an issue! OK I do know it can be disconcerting when the child you are trying to communicate with suddenly changes from a nce pink to a dark shade of blue and you slowly realise there is a slight problem.....but it is not the only issu we need to overcome and does not take away from the fact that she can commuicate if you get evrything else right as well!

Now the SALT has come up with this lovely two choice voice Output communication Aid. but has totally missed the point of Eve's cognitive ability. giving her a choice of Computer which we al know she enjoys, or a picture of a brick that brings with it the reward of one solitary duplo brick on her tray, is hardly giving her the insentive to show consitancy of choice making! It is enforcing your choice on her and she will rebel! actually Eve quite likes playing with Duplo bricks, her sister is obsessed with them and often thrusts them in Eve' s hands and Eve likes to play...build...throw them! so when she chooses h epicture of the solitary brick and then gets anoyed it;s probably because she wants to play with brickS not brick! Maybe she doesn't want to play with the computer this time!

One good point that may have come from this failure of a meeting was a brainwave that struck me whilst talking with the Ed psych.....there is a larger primary school just down the road from Joshua's scondary school where he will transition to in September....I have rung and spoken to them and have an appointment there on Thursday afer the spinal appointement. It coul work in our favour!

I eventually made my excuses and escaped from the meeing at 2.45...just time to get home and take over from David so that he could go fetch Joshua and Chrstina from school. Meanwhile i rang the ward to find out what was happening with Rosie. The SHO had finally seen her but wanted his senior to take a look. Rosie meanwhile seemed to be fine and had stopped having seizures and was playing happily with the play leader!

it was after 5.30 before the Consultant who had appeared on the ward to see another child actually decided to review Rosieherself and declared her fit to come home. The consensus of oppinion is that she probably has just an upper respiratory infection which has been enough to tip her epilepsy into overdrive....i think she had tuned the corner by the time she got to the ward and if I had held off another couple of hours at home I may not have taken her in. My concern was the amount of rescue meds we had given...sadly no one passed that concern on so I still dont know if i am OK to give it so often!

tomorrow is another day, another series of appointments....another builder coming to start his Tender!

One day we will get this house adapted!
Psalm 127:1[ A song of ascents. Of Solomon. ] Unless the LORD builds the house, its builders labor in vain. Unless the LORD watches over the city, the watchmen stand guard in vain.