On the mend

For the first time in well over 5 years we have been away for 2 days and had a lovely sunny worry free time. 
Normally we would constantly worry about being out.  Molly can feel quite poorly a lot of the time which makes things really difficult. We try and do our best so that none of them miss out and so we can have good times together.  But if we are out for the day somewhere frequently Moll is tired and ends up crying and in pain, we generally just have to leave. 
Days that follow these days are awful. Moll will be asleep for days and in terrible pain. Its been really hard for everyone I spend most of my time on edge at a complete loss of how to make her better.
 It becomes a massive effort to take them anywhere because you never know how she will be. We don’t give up though and manage it the best we can.
Not this time!! this time was different  Moll has managed 2 days in London without causing me concern. 
Day 1 We have caught the train (nearly 2 hours).
Lunch out and then The Natural history museum. Back to hotel for a Molly sleep and THEN for the first time in years we have gone back out in the evening for a meal!!! 
I was totally amazed! Moll has been better than i have seen her since she was at primary school!! … 
Watching her laughing and eating i worried Had we gone to far here? That night i suspected we would have to stay in the hotel the following day because she would relapse and go back to the terrible pain, dizziness and tiredness..
But no it did not happen !! After a whole day when i didn’t worry once Moll was still well! We had a full English breakfast she slept for 20 mins afterwards and then we were off out again! Riding about in cabs, whizzing about the city.  
We watched the changing of the guard, she managed the crowds in her wheelchair. She felt good!! I could tell this also by the amount of pokemon she caught and the photos she took. 
Moll was well! 
seriously i could have won the lottery and would have felt no happier! We went to the royal mews and the queens gallery! Daddy pushed her around and they had conversations about history !! Moll was engaged and didn’t have that vacant non existent look in her eyes which comes if she feels unwell. Her head was up, she was laughing.
        She was still well and hadn’t caused me any concern for over 24 hours!!! … You don’t know how happy this made me feel. It was like a massive weight of doom being lifted off of my head. 
Its only been 2 days but that is 2 consecutive days out of 365 per year, times about 6 years which equals about 2,190 days! 
2,190 days which i have worried at some points more than others in the day because she feels so unwell.  
It seemed that this was how it would always be.
Moll is still in the wheelchair. She still cannot walk for more than about 5 minutes , she still has pain but is managing it. Its only been 2 days! And I’m not counting my chickens! but the worry I’ve had on a daily basis for over 5 years was not there! For 2 whole days! AND I CANNOT TELL YOU HOW AMAZING THAT FEELS… 
We got the train at 5.42pm and she was still in good spirits when we arrived home.
Moll is having a well deserved lie in this morning. I’m hoping and praying the pain and awful unwell feeling will not be there when she wakes up. We still have a long way to go but this I believe is a turning point. I’m quite sure the oxygen therapy has made this change and I’m so glad we found it. A friend in America sent me some research papers, the results looked Amazing.
 Twice weekly for 8 weeks now myself and moll have sat in a hyperbaric pressurised oxygen tank for a few hours, while she has breathed in pure 100% oxygen..
I have tried everything in my power to take this illness away from her. Finally with 02 treatment, replacement hormones, added vitamins from fruit and veg capsules, an air purification system in the house, weekly complimentary therapy and weekly physiotherapy we are finally getting there. 
Who knows how long it will be before moll will walk around again like a regular teenager. Be able to go to college or even just out with her friends for a while.
All i can say is at the moment  WE ARE WINNING!! And i cannot tell you how happy that makes me feel. 
To be fair apart from the hormone replacement drugs. We have done this alone. Its not coming cheap Over £150 per week goes in to our efforts. It seems silly really being in an NHS system. But really if it were left to the people who finally diagnosed her after 14 years, she would still be asleep and unwell every day in a terrible state.
         Just one piece of advice DO NOT ACCEPT that this is just how it is.
It might not be. Do your research. Try everything you can. Don’t just leave it to the people who over see them medically. 
You know your child and if you think there is a chance you can do something to make them feel better take it.  They have suggested None of the things we have done. Whether it is their fault or not i can see that they do not have the time to put 100% of everything in to your child.
It’s easy to just give the medication and not think about them for another 6 months. Or may be they think another consultant who cares for your child is being more successful on a daily basis of keeping your child well? Who knows. 
But if you are not happy find your own set of professionals. get a 2nd / 3rd opinion. Read as much as you can about your child’s diagnosis and how different treatments have improved it. We have a team Molly now and collectively these professionals i have put together are winning. Just research. There may not be a cure, Molly is far from well but i have seen a tiny light at the end of the tunnel in the past 2 days. So please let that give you hope.
R x