Back from Sheffield Appointment Rather long sorry!

Well to say it was a long day is an understatement...seemed longer than the 11 hours it was really. Then we did do some shopping first so shouldnt complain too loudly I suppose.
We were late leaving this morning...not anything to do with anyone in this house! The School Bus was late! The company Boss was driving as the usual driver also had a hospital appointment and they got lost! the wind had been howling and the lorries were weaving apparantly and he got lost...not to worry, We set off at almost 8.35 instead of the 8.20 we normally leave to get Joshua and Christina to school so I needed to ring school on the way in to let them know Joshua and Christina were on their way and the lateness was not their fault! Mind you when we arrived at school a couple of minutes after the bell would have gone their were plenty of kids still wandering along with all the time in the world!

So having dropped them off and waved them on their way we set off with Tom Tom telling the way. The wind was howling and the lorries were weaving....the driver had not been exagerating! Then as we headed through Newark the hevens opened and the road seemed to dissolve into a river...the windscreen wipers were battling and losing the battle and our pace was forced to slow!
Thankfully once on the A1 things improved a little and we were soon tootling along nicely again. We thought we had made really good time all things considered...Tom Tom was set to Meadowhall where we planned to do a little Retail Therapy and make progress on Christmas shopping...So with the estimated time of arrival just 7 minutes to go I sent a multi text out to all those who wanted to know when we arrived safely...not quite sure if they felt David's driving was so bad or what>??? lol
However, as soon as I hit send on the text saying we were just arriving at Meadowhall we came to a virtual standstill...crawling along the next 3 miles in just under half an hour! Anyway we did arrive, and we gratefully found the cafe area and sat and ate an early lunch...is 11 O'clock early for lunch when you had breakfast at 5?

Once we were refreshed we headed to the shops and managed to make quite an impressive start on the Christmas Shopping. Finding something perfect for each of the children in little presents.

All too soon it was time to set our minds to the main task of the day and we headed off to Sheffield Children's Hospital...sending out another multi task for prayer for a parking space as we went. God is Good! We turned in the hospital car park to go back out onto the road and there was a space just right for our bus! PTL!

So then we had time for another cup of coffee before heading up to the clinic. It was not too long a wait for our appointment and I think we were only 40 minutes late in. Eve had been having quite a bad day with secretions and needing suction. Her Sats were 88-92 and heart rate 168 as we went in the clinic and during the half hour consultation I must have suctioned half a dozen times. One of the things the Dr said was he wanted to refer her back to respiratology for a further oppinion on her breathing issues.

Anyway, he was very nice! He very nicely told us that much of what we are seeing is due to Autonomic Dysfunction. Her heart rate, her breathing rate, her gut motility, her palor, her sweating too possibly although he also things that could be due to malabsorption and low blood sugar due to metabolic issues. he very kindly offered some polycal powder to give her if her blood sugars were dropping. Another thing to monitor now then, blood sugar! At least if it is the problem it is something we can DO something about.
He agreed, very nicely, that Eve was indeed a very different child to this time last year, he could see the changes in her very clearly, he assured us this was due to Mitochondrial Disease and although the Labs doing the DNA testing had not been able to come up with a cause, they had ruled out many things that would not be Mitochondrial, this left us certain it was Mitochondrial but of unknown origin. That of course does not change what we are seeing, not what we can expect as the continuing trend and progression. Eve herself is showing us where this is going, Ensuring we are doing everything we can to control the controlable Symptoms is the most important thing.
Eve was qutie smiley at times, listening to the conversation, smiling when we talked about her sweating and soaking through her bedding, laughing when we talked about her optional breathing, and smiling when they said she was getting a fatty! Dr S was really pleased to see she had such a ready smile even when not having the energy to open her eyes. We talked about quality of life and agreed she had a good quality of life and obvious enoyment and interaction...these are the important factors!
we left with a prescription for the Polycal, the Ubicarenone, some saline nebules, and a list of instructions for adminstering polycal if blood sugar drops. We made an appointment for 3 months and we headed for Pharmacy! Just as we were leaving the departement my Mobile phone went....it was the surgeon's seceratry from Nottingham, they had had to cancel Rosie from the list on Friday and would di her next Thursday instead! AGHHHH, I insisted they couldnt do next Thursday, we had already told them we were away that week, It is our Hospice break and we were taking Joshua and Christina away and there is no way I will cancel it. Anyway there is all the planning that has gone into this week was it at all possible to uncancel her? She promised to speak with the Doctors and get back to me. There was quite a queueat Pharmacy so we dropped the script off and went for coffee! Needing a caffiene boost before the journey home. It was 4 pm before we left the hosptial and the traffic was building again.
The journey started off badly, long queues, red traffic lights at every junction and then the rain... The Surgeon's Seceratary rang again and said they had reinstated Rosie for Friday....that was a relief!......However once on the A1M we made once again great progress and were soon back on familiar roads. An hour from home we decided to stop to eat. this added a while onto the journey but meant I didnt need to think ab out cooking once home.
We arrived through the door just before 7.30...PHEW!
A long day and too much to deal with....Now to get our heads around Friday!
Your prayers are appreciated, We are exhausted, Life is overwhelming at times....knowing people are praying for us helps! Thank You!