--------------------------------------------------------------------------------

Started the day on the wrong foot with grizzly miseries from Eve at 3 am..

discover we have little milk left for breakfast...selfishly speakng it doesn't affect me as I drink black coffee and rarely eat in the morning...however everyone else complaining about the lack of milk for cofee, tea, cereal etc does affect me! Joshua informs me I need to buy milk if I go out today. I wonder if I could have worked that out myself???
Rosie has been having some agitated episodes around breakfast and dressing in the morning which I cannot make up my mind whether they are pain or seizure related...was sure there was seizure activity Sunday and gave clobazam and things improved but yesterday evening she was happy however she exploded at breakfast and was apparantly not happy for a long while on arriving at school. She arrived home happy again and has had a wonderful evening just gone to bed by request now! So I am not sure.
Once Jonathan and Rosie are on the bus Our morning carer leaves...so Christina and I bath Eve and I listen to Christina read whilst I dress Eve...do Christina's hair whilst she puts Eve's shoes on and hope Joshua has hoovered the lounge before we bring Eve down...well Daddy has to bring Eve down as I cant, what a shame we dont have a through floor lift. By the time we are in the car to go to school I breathe a sigh of relief! And think of the next stage of the day! A before school meet with J and Cs teacher went fairly well...Joshua has been offered a place at his school of choice...he is he only one who was....just transport to resolve on that one. Home again to make some phone calls and check for email responses, I had sent an email to the housing department yesterday and was desperately waiting for the response..also waiting for a response from our MP, neither had responded. I needed to phone the payroll people to confirm what I can pay our carer during the time she is off work after her fathers death. I also had to ring pharmacy about a lost prescription and try to get in touch with the Spinal Surgeon/wheelchair clinic/orthotic departments about outstanding appointments.
Window man appears to check a problem with our new front door just as Something I deperately wanted to hear comes on the radio! Occupational Therapist and Seating rep arrive 5 minutes after he leaves and then things go out of control.

Eve's spine and strong extensor spasm have made seating a logistical nightmare...she also has the skin of the princess and the pea...so firm strapping is not easily achieved....the added complicaton of a need to ensure she keeps breathing is just a total nuisance!
It is all well and good that during the next 21/2 hours we alternated between laughter and frustration as each attempt to get her sitting straight resulted in prolonged apnoeas....coupled with the discovery of redened skin across hr hips, chest and spine each time we took her out the chair...a break from the chair to try the sleep system almost left the rep in tears of disbelief. Despite my laughter i had a growing sense of panic about the breathing difficulties. these have escalated over the last few months and I am officially worried about what happens if we find that bracing her spine results in the same problems??? The session had to come to an end and we were back to square one...the new strap designed to hold her hips more firmly and hopefully prevent the extensor spasm bringing her so out of line, did'nt work but worse still we can no longer leave her unattended. prior to this visit we had found a point where her positioning was reasonable and her breathing although at times laboured was continuous. since changing the strap and changing it back we have lost the positioning to keep her breathing. eve is now convinced that breathing is optional whilst sitting and so if it becomes too much hard work she stops!

As the OT left she directed the SW from Adult services to our door! This was to discuss Jonathan's situation from 17th March when he turns 18!
there was little good news. Apparantly the three hours one on one support he currently gets cannot be replicated in Adult services so access to a youth group is offered....Jonathan woud not choose to go to a youth group.
We will go and visit the respite facility although the thought of placing him in the care of another service povider is not one I relish. We do need respite but we need it coordinated so that Jonathan and Rosie get respite at the same time to enable us quality time with Joshua and Christina.

We had some heated discussion around the interpretation of legislation, the failure of the dept to assess and discuss these needs prior to his 18th birthday...and then she left!

No sooner had I closed the front door than the phone rang gain...payroll office answering my queries on carers wages...agreeing we can pay holiday pay to her allocated holiday allowance so at least the poor lady will have some pay. I seriously hop she is up to coming back soon, we really need her back! Much as I synpathise with her loss and know i will do whatever I can to support her, I need the help.

Since 4 pm I have had 5 phone calls about Eves education provision...her one to one left a note on the managers desk on Thursday she was not coming back.....left the child care centre a headache but what now for Eve...Eve has not been in yeasterday and today due to appointments...thus giving them time to think....They have thought and come up with a solution. I am not convinced the decisions are in Eves best interests,,,, have had long talks with early years coodinator at county hall and now have meetings tomorrow morning!
The fact that the message David was given verbally from the deputy manager was.
"no-one else wants the responsability of the reviews etc so it's down to me"

Now I have nothing against this person at all...however when the one to one has been away in the past this person always tells us Eve has cried at her, doesn't seem to like her, wont do anything for her. is this really the right person to work with my daughter daily? Her comment did not instill comfidence either.....so it's down to me?

The centre manager has rung and told me that they had had a reshuffle and it was thought S was the best person for the role, has done all the training so has he knowledge and therefore it will be the best for the two terms before Eve goes to school.I am not convinced, we will see. We have arranged a meeting for tomorrow morning when I drop Eve off.

Thursday I have meetings at Rosie's school about her behaviour and how its management is affecting her communication...could be interesting especially as her footwear is implicated! See the post about the SALT reports!
http://lifeinourhouse-tina.blogspot.com/2008/01/letter-to-speech-therapist.html

I do not know what the future holds but I am glad I know who holds the future!
_________________