A busy couple of days!

Tuesday held 3 appointments, two with the peadiatrician at the local hospital follwed by the ocial Services OT and Council man coming to view progress!
The two peadiatric appointments I managed to take only one child...I had been unable to secure the services of a carer, David could not get out of his commitments and so knowing we have a neurology appointment for Rosie in just over a week and the rest of her issues I could talk about without her presence I decided she was better off at school.
So taking Christina to school Eve and I set off for Pilgrim Hospital...for once the traffic was not too bad and we made it in time to catch a disabled parking space near the Children's Outpatience had to be a good start to the day!

Of course once we arrived in the clinic it wsa heaving, things were moving slowly and we ended up almost an hour late. Not to worry I did not need to be home till 1pm as I had got a message to the OT that I would not be able to see them before then, I had also got a message back telling me she had recieved that message and noted the change of time!

It was difficult talking about Eve...the peadiatrician had not heard from the neurologist yet and so I had to explain all the tests results and further tests and put her in the picture as far as we know with Eve and Mitochondrial Myopathy. She was obviously quite stunned, a bit out of her depth and wanting to leave it all to the Neurologist. We talked about other concerns and concerns about school meeting Eve;s health needs and not stepping in soon enough with suction and being aware of her rest and sleep needs. I found the whole thing totally emotionally draining. I am running on empty here and dont quite know how to refill.
We eventually set off for home, having called to the ward to scrounge some more Suction catheters as CCN could not get here before Wednesday. I pulled into our road at 12.45 believeing I had time at least for a coffee before our next appointment! WRONG! Waiting on the farm yard opposite our house were two vehicles, one containing an OT and the other the Council man...not even time to get Eve out the car and into the house before they were upon us! I did pass on Rhys ideas for the soak away pipes....OT decided she best not upset us!

Builder Man was in the process of knowking through a doorway into the lounge, there were plastic dust sheets suspended around his working area but the noise was effective! We decided the girls room would be best place for discussions, noting the warmth of the heating we pointed out the heating was complete apart from the three new rooms.
"Oh well once those three are complete we can give you the heating element of the grant....of course we will need paperwork to back that up!"
We pointed out the area for the lift assuring them hicups resolved the lift will be installed on 9th February,
"Oh well OT will have to come and agree that meets need and then we can release the money for that."
"The rest of the grant will have to wait until the work is finished!"
ARGHHH! We need some more of that grant to enable us to afford the flooring for Jonathan's room. Anyway they seemed pleased with the work so far and muttered about Eve's changing needs and needing the upstairs room but did not offer to pay towards it! Commiserated with the need to replace the Cess Pit but again offered not a bean towards the cost.
I was quite glad to see them off actually....only to discover another appointment I had forgotten was walking up the drive!
Electrician to start the putting together of the wiring of the new bits! He came back today too and we now have light in Jonathan's bedroom and wet room and a working light in the utility! The power points are now functioning up and downstairs of the new build. And the wiring is all ready for the rest of it! He is coming back Thursday so we hope to have some further progress and enable the ceiling to go up in the end of Jonathan's room and then that will be ready to decorate!
So on to this morning! I woke knowing I had three arranged appointments but could only remember what 2 of them were! Joshua had a peadiatric appointment at midday and my rhuematology was at 3pm but what on earth else was I supposed to be doing? I took Christina to school and returned home hoping my memory would jump into action at some point! It didnt...the men found reasons for me to need to head to town and so I set off......just over half way there my mobile phone rings! The Ombudsman! Ahhh yes that was the other thing! I had made arrangements for the Ombudsman to ring at 9.30....I offered appologies and she offered to ring back at 10.30....allowing us to discuss our reasons for not accepting their findings. Hopefully this would give me time to go to the bank/butcher/electrical shop/Jewsons and get back home. I did with 5 minutes to spare! So began making the mens sandwhiches for lunch whilst making coffee for me and then the phone rang...it was a useful telephone meeting, I was able to point out what they had missed of our complaint , why we felt the assessment of need had never been properly undertaken, and why the proposal they had made for the adaptations would not work. She was not raising my hopes for a change of decision but did agree to look at those specific points again! We will wait and see!
So I had time to slurp my now cold coffee and then head back out to get Joshua! Hoping my hire minibus ran as well on empty as I seemed to be doing right then! Annoyingly the petrol warning buzzer goes off everytime you take the handbrake off and set off moving again....I tried hard not to use the handbrake! I made it to the school in time and then we got caught in traffic and were 10 minutes late arriving at the hospital....so why is it whenever we arrive in childrens clinic 20 minutes early, the clinic is running 1 hour late! The day we arrive 10 minutes late they have been waiting without any patients for over 45 minutes?????
Dr C was quite OK about it she had taken the opportunity to do some letters and catch up things she never gets a chance to do!
Joshua was most concerned about his headaches...they have progressed now to every day...some days bad enough to send him to bed and at other times developping into full blown migraine! We now have some new tablets to try 1 in the morning two at night....only he has just gone to bed without them!
Joshua's peak flow is low again so long conversations about using his inhaler etc. Dr C is really good though and Joshua felt comfortable talking with her. His chest sounded OK and we were soon on our way back to school....via pharmacy and the petrol station. I was able to put his script in and leave it to collect with mine later. we grabbed a sausage roll and bag of crisps in the hospital shop and managed to get back to school before end of lunch break. I turned around to head back for my appointment but was very frustrated to not find a parking space...after circling a while I parked on double yellows with my badge! (interestingly when I came back at least six other drivers had followed my lead!)
It was a pleasant appointment with my rhuematologist, my ANA levels were down which was reassuring, my feet are the worst part of my pain now and there is little else can be done, I am continuing with all my drugs, with added calcium to protect my bones, my Dexa scan was OK and so off I went to give more blood to check my aneimia, hopefully levels of everything else will be the same and I may be on an even keel for a while. Not in a birrliant state, still managing a lot of pain, but I am managing...and the lift and finishing building and getting the house back to ourselves may just help a little bit more! For now it seems I just need those steroids and things no more cutting down for a while!
Collect drugs from Pharmacy and back to car to go get Joshua...little smile to myself at the line up of blue badge holders in front of me...wonder if the hospital management will put a stop to us parking there or realise we need more disabled spaces and make them official???
I arrived back at Joshua's school at 3.12....he doesnt come out till 3.40 so I even managed a quiet moment or two of shut eye! BLISS!
Woken by hooting of horns as kids come out...and just as Joshua and I pull out of the school road my phone rings...Joshua answers it to the the panicked voice of the carer telling us Rosie has pulled her tube out! Oh the joys of parenthood! What am I supposed to do before I get home...I tell them to ignore it until I get there! It tuned out School had rung with the mesage that Rosie had pulled her tube out as she was being put on the bus! When she arrived home it was just the retaining flange she had dislodged! Tube was actually fine! So I got home to a VERY cross Rosie as she had not had a drink....everyone at home believeing she had not got a tube! ARGHHH. Anyway soon resolved and Rosie fed. She has taken to going to bed for an hour after her tea...this is very convenient right now as it keeps her out the mess whilst the children and I prepare our tea! Tonight it was even better as the mess of the door coming out and the electricians box of tricks around and Daddy trying to sort plumbing pipes...the free run of the house was not an option!
So tonight! I have no washing machine! it had to be disconected to allow this work to go on! We have two doorways in the lounge! We have 1 toilet left between the lot of us! The utility floor is a patchwork of wet cement, Rosie decided tonight was a good night to have a tonic clonic seizure and then strip off and water her bed! Becuase of the TC she was really wobbly and post ictal so whilst I was chan ging her be she did her best to fall all over the wet cement! Medication sorted and we now have a giggly wet, dirty wobbly Rosie wanting chocolate!
Amidst this Eve has slept 21/2 hours at school, come home and fallen asleep again by 5pm is still asleep now at 10/15 but has had three episodes of drowning breathing needing suction, is now deciding that myoclonus is a good state, has had priods of severe bradichardia but with good SATS...what am I supposed to do or think about those???? Is this lethargy/fatigue somthig I should accept, ignore, comment on, act upon???? I dont know! I am worried but not sure if I should be...not worried enough to ring the ward as I dont think they would know what to say! Peadiatrician seemed out of her depth and she is someone I respect greatly....SHO on call is not going to have much of an idea is he???? I am undecided as to whther to monitor her over night, and risk being woken several times for trivial issues, not monitor her and regret it in the morning if something drastic occurs, Stay up and cuddle her all night, take her into our bed???? What is the right thing?
Tomorrow I think I have only 2 appointments! David and Builder man are hoping to get the beams up for our lounge ceiling bathroom floor! Maybe even start the new staircase! OH PLEASE let it go right! straight away first time quickly! PLEASE?????
Have I mentioned that I am fed up of the building work?
It is hoped that once the beams are up David can get the plumbing progressing whilst builder man demolishes old stairs! The hassle with that is that once the stairs are out we have only a ladder to get upstairs, until the new stairs are erected! Aint life fun????
And so with such an easly life going on for us here! Builder one wants us to consider settling out of court.....I cannot work out why I dont have bounding energy and enthusiasm to deal with that angle of our life????

OK serious angle on that situation....I am struggling to suppress feelings of anger and bitterness on this issue! I would value prayer for God's guidance as I deal with this issue! I am sure the bitterness and anger that are arising in me are not of Him and if not of God then who? Really needing prayer on this one. I really do not know what to do about it!
Thank you!