So much time has passed again, and there hasn't been many dull moments as ever.
The more time goes by the harder it is to catch up but showing up is the hardest part so they say, finally, here I am!
The big news is that we have finally triumphed in the long battle for Rosa's transport to school.
Many of you might know after Rosa had her very scary health event at the end of last June Cornwall County Council withdrew her transport to school. Rosa has been going to school in a taxi with a PA for about 8 years. It hasn't always gone smoothly. we've had some great drivers, some great PAs and some who were not but she has consistantly had transport. The PA has always had appropriate training and although it has never felt like an easy thing to do we have sent her off in the morning in faith and trust and it has meant considerably more hours for us in the week. We have always been grateful but also aware it is Rosa's absolute right to attend an educational setting that is appropriate for her.
Curnow School continues to provide outstanding education, care and fun for Rosa, we couldn't be happier with it but it is 14 miles away, 25minutes with no traffic which almost never happens. Because of the changes in Rosa's health and her perceived risk the council refused to take any responsibility for transport while at the same time telling us they had a duty of care and if we sorted it out they would pay. It seemed they didn't even want to accept liability for telling us how to acheive this. What had to happen it seems is we had to come up with numerous solutions which they turned down and then I had to threaten them with social media shaming and legal action and they finally accepted our proposal. It was a long and hard road but the longer it went on, the more determined we got...It consumed and infuriated us for months but we won! At the beginning of term Rosa's new fully trained, keen and enthusiatic team arrived to take her to school. We are so grateful and Rosa has already got to know them and is pleased to see them when they arrive in the morning. All being well they should have the contract for the next three years so well worth the fight.
In other news, Botox... I promised I would report back and life whirled on. On the whole we think the botox was a success, it is not without it's draw backs and side effects but on balance after 6 months we decided the pros outweigh the cons. So much so that she had it for a second time yesterday, it was still brutal but we were forewarned and forearmed which made a big difference to all of us. Rosa coped much better this time, she even smiled in between sides although she was rattled and it is still horrible she rallied much more quickly. The injections are into her parotid glands which are the large salivary glands situated just in front of each ear. They produce the thin saliva that causes such a choking and asperation risk. What actually made us realise how successful the procedure had been was when it wore off. It happened suddenly, almost overnight she was once again in a pool of saliva and gargling with it, it was choking her and filling her tummy with wind and nastiness that makes her vomit, it affects her sleep, her comfort and her concentration.I think because the botox began to work so slowly we didn't notice what all the benefits until it wore off. It does have disadvantages, don't misunderstand. The thick saliva is another job in itself to manage, having a tendancy to form a solid plug in her airway. But we have learnt to manage it with frequent nebulised saline and suction along with plenty of vigorous chest physio. Some days though, it isnt a problem, some days she is just able to get on with being Rosa. The wind is less, the tummy aches and vomiting are less, her bedtimes and sleep is better and she can relax on the mat or bed without drowning in a puddle of her own drool. so we wait for it to take effect with our fingers crossed. Her face seems a bit swollen today and she didn't have the best day but she's so stoic there were plenty of smiles too.
You may remember I put a shout out for a herbalist to work with Rosa and us as a family last Summer. The universe answered my call with a herbalist who is based just a few miles from us and has a fascinating lifetime of experience in treating all kinds of patients with herbal remedies. Dame Annette Montague-Thomas, R.M.H., D.B.Th., D.O., F.U.R.H.P., is a
Registered Medical Herbalist and botanist with over 30 years of
experience, and the Founder of both The Global Natural Healthcare Trust
in England and Lyme Disease GNHCT Scotland.She is a formidable and inspiring force of nature and we are very happy to have her on Rosa's team. She has the utmost repect for Rosa and for us and began treating Rosa very gently with two very remedies formulated for babies to cleanse her nervous system and a cardiac support remedy, she added in a tonic to boost her immune system when we were about 6 weeks into the treatment. She also suggested some spinal massage to do three times a week to wake up the spine. She told us with total confidence that she could help Rosa to become seizure free.
I touch wood as I write but Rosa has been seizure free for at least 6 weeks. It is incredible, it seemed it was a one way street and the seizures were just increasing and that was reality.
So it's the start on another year, another year we celebrate that Rosa is still here with us, big and strong and beautiful. We have appointments arriving on the doormat daily with every specialist you can imagine, it seems to be when everyone tries to catch up. Some we will attend, some we will change to phone appointments and some we will cancel. The OT has gone awol again and we are waiting on a few things, there are always things that need chasing. Onwards we go,always one day at a time, in love, hope and gratitude. xxx
No comments:
Post a Comment