7th April 2010
Hello again all, long time I know! All is mostly pretty good in our world at the moment, especially since the sun, has at last decided to come out and we have been able to venture outside after what feels like a long hibernation!
The last post was very brief but I wanted to share our news as it broke. I am getting rounder and more mellow by the day, it took me a while but I'm really enjoying being pregnant now. I had a huge amount of fears and apprehension and guilt about it all at the start, although I know it can't be the carefree experience I had the first time around it is definitely improving as we go along, my doubts are being shed as the baby grows. It is currently known as thumper because it is rowdy as anything and has been since I first started to feel it, not the gentle flutterings I felt last time at all definite thumpings and moving most of the time, it's a leo already, making it's presence felt very strongly! G has been mostly singing since we found out, having always seemed very sure it is the right thing for us all. I know he does have his apprehensions too but they are mostly practical, things we can solve, like a new van, buggy, home, but more about that in a mo. Rosa doesn't know but we really think she'll have a great time with a babe when it arrives, she finds it very funny when Lily, our friends young baby cries, we hope she holds that thought!
Since I last wrote we had a wonderful holiday. We went down to Mousehole and rented a cosy little cottage for a whole week. It was quite heavenly, especially as the sun managed to come out and the weather was unbelievable every day. Rosa was in a really brilliant place for most of the week, laughing, relaxed, really having fun too. We only had a dodgy couple of days with tummy at the end but not too bad. Her timing was spot on for forcing us to do some proper relaxing too. Up at about 8.30 for porridge followed by much wriggling, giggling and knocking toys off the vast kitchen table onto the stone floor for much hilarity. At about 11 a lovely snooze for Rosa for an hour or two maybe even a bit more. While I got to read or knit or write my diary and G read the paper or his book or watched the odd cowboy movie. After lunch an excursion of some sort, proper holiday activities like visiting gardens, St.Ives, Men-an-tol and the seal sanctuary. Then because the weather was so fab most evenings we drove somewhere beautiful to sit on the sofa in our van drinking tea and watching the sunset. It was pretty much perfect and exactly what we all needed.
Unfortunately, all good things do come to an end and we did have to return to reality at some point! We had a flat moment on returning home as I think is often the way but we quickly turned it around and have been pretty consistently productive and positive since we got home. Rosa's good phase was rudely interrupted by more teething, and also a bit of a bug so we have had a rather challenging time lately, nothing new but it is hard and sometimes sad and scary when she isn't at her best. I know that she is generally such a healthy little bunny, we are really lucky in that respect. Whenever she is under the weather all the fears that I suppose are always there for us are prone to surface particularly when she is distant as she tends to be when she is fighting anything off. Today for the first time in ages it really felt like happy Rosa was on her way back. We had far more smiles and even some proper laughing this afternoon when she and I were swinging in the hammock (the new best thing!) Life is so much better and easier as soon as she feels better. We have had quite a few days in the last couple of weeks where it has taken both of us all our energy just to try and keep her from getting hysterical, she has really suffered with her tummy again and you can't help feeling the world isn't a very nice place to her on days like that. The 'so unfair' feelings come up strongly for us, of course she doesn't deserve it, no-one does but that is life.
On a more practical note we have finally got around to requesting a change of paediatrician, we spoke to Dr. Moody our lovely helpful GP and he has written to Dr. Cox who by quite a few accounts is much more child friendly. We have heard good reports about him from several other parents and we are willing to take the chance as we know that we don't feel very comfortable with Dr. Arend even when Rosa is well. It is hardly likely to improve if we are under the added stress of having a poorly girl. We are hoping that when Rosa becomes his patient Dr. Cox will request a consultation, if he doesn't we will so that we can meet him properly and most importantly see how he is with Rosa. (* we have since received an appointment but it is on her birthday so we might see if we can postpone it, a very prompt response though.) We were also due to have an appointment with Dr. Sharples, Rosa's neurologist but the appointment was meant to be when we were on holiday, we had to cancel it so we have another one booked but not until June. There are actually a few things we want to discuss with her this time, the main one being that Rosa is 'zoning out' or going away more often than she was. Her eyes go sharply upwards and she has started to stiffen her body when she does it too. We don't think it is absence epilepsy, which was one of the things that she was tested for early on because you can mostly bring her back by blowing on her eyes or stroking over them. But it does ring scary bells and fitting is a symptom a lot of the canavans children suffer from so it would be good to discuss it. We would like to be a bit prepared if it happens, to have an idea of what to expect and what we need to do. It may not be the precursor to fitting at all, but we think it needs raising as it is definitely increasing in frequency and intensity, mostly when she is tired, it often happens when she is excited or trying to process some new information. I might have a chat with Dr. Moody, as a GP he probably knows what you should do if a baby does have a fit and I find him very easy to talk to or Nicola at Highfield actually, I'm sure she has lots of experience. We don't want to think about it but we need to be prepared I think.
Now it's actually the 19th of April and I've been writing this post for far too long! I spoke to Nicola at Highfield today about seizures and she said the most basic thing to do is put her into the recovery position and make sure that she can't choke. She said there is medication but of course we don't want to do that unless we have to and we certainly don't have a need at the moment. Nicky also suggested we start keeping a diary of it so we can get a better picture of what(if anything) prompts her to go away and for how long etc. I think this is a really good idea as it is so hard to remember what was going on yesterday, let alone a week or more. We might see a pattern that we haven't noticed before but even if we don't we'll be able to give the specialists a more accurate picture. It doesn't seem to happen if she is distressed or uncomfortable, it is normally when she is relaxed or excited about something. Sally, Ben's mum (Ben is the other UK canavans child) doesn't think that it is seizures in Ben at all but just one of his ways of processing information but on the other hand quite a few of the American parents describe almost exactly what Rosa does as a sign they recognise when a fit is on the way. Enough about that for now though, we'll build up a bigger picture and talk to some more people and then see what we think.
Speaking of bigger picture the counselling saga seems at last to be approaching a happy ending. Last week some government money was paid into a special account we had opened and is earmarked purely for paying for private counselling sessions. This ended up being a rather convoluted and roundabout route but it seems we will finally be able to work through some of the issues that we have had spinning around our heads for the last year. I still find it astounding that there is no provision for people in our situation or similar to talk to a professional as a matter of course. The other day I was feeling energetic and righteous and wondered about starting a kind of campaign for some provision to be made. I'm sure there is a need, Gareth and I are so lucky that we can communicate with and support each other so well but it must be even harder for parents who are not necessarily in the most supportive or stable relationships or on their own. Realistically I probably have plenty enough on my plate and shouldn't think about a whole new challenge just now, I'll have one of those in August! I just can't quite let it go........In theory we meet Muriel who has been recommended to us next Monday, initially to see if we think we can work together, I think we need to warm to her or it won't work. I'll let you know how we find it.
We registered for both Devon and Cornwall housing register,on both we have been catergorised as low priority for a two bed, not great but we can hopefully change the requirement to three bed after I'm 25 wks and I have my maternity form. I think we are low priority because where we are is OK. There is nothing really wrong with it, we're not in a B&B or on the street, we have hot water and electric. That's all fine and fair enough but might mean we might have an incredibly long wait until we qualify for affordable secure housing in our home county. Devon seems to have a lot more properties than Cornwall of course, but we really feel more and more strongly we should head back down there. We'll see what happens I suppose. At least we don't feel in too much of a rush, not like the last time I was pregnant and we knew we had to move, we just have to be patient and keep our ears to the ground. It really helps that the sunshine has woken our garden up and reminded us why we fell in love with this home in the first place. We're trying hard to forget about the damp long winter and love the stunning living space that is our garden.
Some very good and surprising news about my back is that through a combination of physiotherapy exercises, acupuncture and strong painkillers it seems to be almost better. From where I was six weeks ago this is feels pretty much like a miracle. I was quite debilitated and also very scared. I am so grateful to be well again but I am still very aware of how hard life was when I was broken I am trying to be very cautious with how much I do, especially lifting and moving Rosa. Luckily G is even more cautious about my back than I am and is never very far away. In fact so much so the only setback I had was when he went away to his parents house and Rosa had a terrible day of teeth and tummy and I ended up carrying her much too much. I felt it with a vengeance for about a week afterwards and it did serve as a very immediate warning to take the recovery slowly. I'm certainly not getting any lighter and don't want to imagine what it would be like trying to manage that level of pain as I become bigger and less agile anyway. I'm continuing the exercises and feel confident I'm on the mend!
I can't believe it is only a few weeks until Rosa will be two years old, my big little girl! She had bunches in her hair for the first time the other day, what a sweetie she looked! We are having a birthday party for her in a couple of weeks, I'm hoping it's going to be lovely, there are certainly some very lovely guests coming! I'm toying with the idea of a trampoline for her (and us!) for her birthday but can't quite decide if its too excessive or not. She went on one at the weekend and seemed to really enjoy it,especially when her friend Marli bounced around her and fell over, we do have the space and they come up in the paper quite often. I'm thinking on paper now I should go to sleep and post this tomorrow for sure xxx