May 10th 2021

So I have been meaning to write again every day for at least a month maybe two, I can't believe the last one was Feb! Spring is well and truly here and the sunshine and explosion of life has been beautiful, May is just the most exciting month.

Life has generally been joyful with tough moments or tough with joyful moments, that seems to be how it goes the last few months.

Our big news is that the children went back to school for the first time since March last year. They started back after the Easter holidays, Rosa is just part time but hopefully building up and Ithan is back full time and fairly delighted (it was at least three days before he moaned about having to get out of bed!) 

 

 We still feel very fresh to putting our toes back in the water of the outside world, we have become very used to being at home and largely conducting life on zoom! The reason we felt able to do this was that Gareth, Rosa and I have all had our first vaccinations. My second one was this week, I had quite a flu-ey reaction last time, luckily it wasn't so nasty 2nd time around. G and Rosa are both scheduled too, we were very anxious about Rosa reacting as both Gareth and I felt rough as rats for 24 hours or so. Luckily Rosa didn't seem to have any reaction, she had the Pfizer because she is so young and it was reckoned to be better for her as it is slightly more tested for younger people, we had the Oxford/Astra- zeneca. 

We can only hope that it is going to protect us all as promised when we venture out again. It definately doesn't come naturally to us to put our trust in mass medication but in this case we felt it was the only choice we could make. At present the only thing that has changed is that the kids are at school, and I went into my 2nd shop in almost 15 months! That feels big enough to be going on with for now!

 

 

Venturing Forth...

                                        We were so grateful to spend the weekend at Little Harbour Childrens Hospice for what they are calling a Resiliance visit. They are trying hard to offer all their various families what would be helpful specifically to them, this includes day and night shifts in the families homes, day visits to the hospice and short breaks. We were so pleased to be offered a short stay over the bank holiday weekend for a couple of nights. Rosa and Ithan were delighted to be there, Ithan was so excited he didn't know what to do with himself and Rosa had a really lovely day on Saturday with a very old friend Claire from homecare who used to visit when Rosa was about 8! On Sunday we had a surprise visit from Kneehigh theatre with their bizarre and hilarious mobile Random Acts Of Art. They performed a rousing rendition of  Trelawney complete with yellow smoke flares and electric guitar accompaniment. We all laughed a lot!

 

The stay was of course different and more limited than we have experienced  in the past but it was so welcome and did us all so much good. I think G and I were pretty much exhausted when we arrived on Friday but by Sunday we felt we'd all found some lightness again. We got to go kayaking, just the two of us and it was completely magic.

 

 

 

 

 

Rosa's health is not great and not very predictable at the moment. She is having seizures again, mostly only once a day and we are all quite familiar with the drill now but it will never be easy to watch and the act of being constantly vigilent is draining for us and for Rosa there is a constant low lying electrical activity going on in her head, this makes it harder for her to engage with things going on around her and it is really tiring. I would compare it to trying to hear someone talking on the phone when the radio is on loud, it is really hard work. 

She has also been struggling with her breathing, this is largely to do with the saliva, I've talked about this in the last post so I won't go into it massively, just to say, she is still almost drowning in it on quite a regular basis, the meds she is on (Hyocine patches) don't really seem to do much but we are also scared to take her off in case it gets worse, although at the moment it does feel like it couldn't be much worse. There is another medication that we have tried but she was allergic to it (Glycopyrilate) so we were quite stumped. We are also quite convinced that the saliva and subsequent trapped wind is driving the seizures. It was a conversation about this with her Epilepsy nurse Beth that raised the subject of Botox injections to the saliva glands. We had heard of this before, it is a way of inhibiting the excess saliva but we understood it was no longer done. Apparently it is, occasionally, in cases like Rosa's when other meds are ineffective. Unfortunately it requires a general aneasthetic every 6 months to administer it. It is a marker to me of where we're at, that it seems like a fair exchange if it works. We await a referral.

 

We also await chairs! We still don't have any seating for Rosa other than her wheelchair, this is not through lack of effort on either our part or our lovely OT, Katie. We now have the inner for Rosa's experimental chair, the pump, but no cover!!! It is a huge shiny slidey beanbag thing and it needs a cover to work...apparently they sent one but it went to another family in another part of the country by mistake...the whole saga would be funny if we didn't so desperately need another seat for her right now. Her scoliosis is pretty severe, it breaks me if I let myself go there. She is so folded and twisted she can't sit comfortably hardly at all, it is definately affecting her digestion too, she needs to get out of her chair almost before she has finished her meal to let things move. If she doesn't she can get quite upset quite quickly and vomit is often the result. With no alternative chair we are getting her out onto our laps very often, we're lucky if she will spend an hour in her chair at present. She tells us she is in discomfort or pain and we have no solution as yet. Luckily at school they can hoist her onto their laps and she has a whole team who are very happy to have a Rosa cuddle (PPE clad of course) this is a huge relief to us. I am so grateful to school for their creativity, patience and kindness. We are incredibly lucky to be part of such a fabulous institution that really is outstanding in every way.

She has been cast for a new moulded chair, it is in the pipeline we have a initial fitting on May the 18th. It can't come soon enough!

 

 

We do have other big news, something quite wonderful and astonishingly decadent, we are now the proud owners of a wood fired hot tub! It is something that we have been considering for a while. Rosa loves being in the water and that is a bit of a challenge, in normal circumstances, let alone over the last 18 months. Swimming pools are often too cold and invariably have dreadful if any suitable changing facilities. Hydro pools are lovely and warm but require two adults and booking in advance and are often out of order. The jacuzzi at Little Harbour has always been a huge hit with Rosa as has having a bath with me at home. It is very much a squeeze in our tiny bathroom but has been a highlight of the week for both of us over the last year or two. We dreamt about how lovely it would be to have a tub that we could all fit in and I started doing some research. I quickly came across @kernowsprings and it arrived just before Easter, Needless to say we have been burning a lot of wood! It is utterly gorgeous and such a treat for us all, we can't wait until it is safe to share it with our wider family and friends.

Moving not moving again... I might have mentioned we have a very proactive Ocupational therapist at the momement. We have been on a little rollercoaster with her exploring the possibility of getting county funding to extend this house to create the accomodation that Rosa needs. We went so far as to have a surveyor visit the house and walk around making an assessment. We dared to get a little bit excited but unfortunately it is not to be. This house is old and damp and leaning as well as built on a different level from the garden. Building a bedroom, bathroom and garden access for Rosa here would cost in the region of £75000. The county can offer a grant of £30000 if the property is suitable and the extension is feasible. Unfortunately, Ivy Cottage is deemed not suitable, and that is before we even discussed it with our landlady. So really we are back to the drawing board. It was an important avenue to explore but we can cross that off our list of possibilities and get back on rightmove....We are lucky, our home is beautiful and in a compact and picturesque way, it so nearly serves all our needs except not quite, not Rosa's and that is getting more and more vital the bigger she gets. We continue to save a little and continue to look and try to keep the faith. Our place is out there, it must be!

 

The last piece of huge enormous news is that on May 13th Rosa will be 13! OHMyGoodness! This is joyful beyond all things and we certainly do intend to celebrate as much as possible! 

Once again we've decided not to have a party as it doesn't feel right and also not something Rosa would get loads out of at the moment. Everyone still needs to stay distanced and we think people on mass will just be too overwhelming (possibly not just for Rosa!) So we have invited family to pop over at sensible intervals to smash things and eat cake. There will also be things that go bang! If you would like to help us celebrate we would love to see your smashing videos for 2021! We will be finding and enjoying last years wonderful videos too. We are once again short of crockery not having ventured into the world much so if you are local and happen to have any chipped mugs or figurines lying around we promise to put them to good use! 

 

I will post another update after we have well and truly celebrated our girlies birthday! Thanks for being out there you wonderful folks, we miss you lots! xxxx