Normal service to resume forthwith…

It’s been a trying couple of weeks, and as I remarked to my Mum the other day my brain is all a bit of a squiggle lately – too much to think about, too few brain cells to spare thinking about it!

Unfortunately this space had to be abandoned whilst I got to grip with things again, and when I’m sure that I have got them all in order, I’d like to share a little of them with you as a large chunk is to do with the Tallest’s feet and our recent issues with her dafo’s (or lack of them!)

Like I said to Hubby, through tears of sadness, anger and frustration as we were returning home after having to recover my (new) car. (Yes that happened too just to top it all off!) – most of the time I can just ignore it, it doesn’t go away, but it certainly isn’t my first and last thought of a day, but right now, it’s all there, it’s all at the front and it’s getting in the way of normal life…. Marfan Syndrome is not always an issue, but it’s always the issue if you know what I mean?

But hey! things are looking up, especially if you are a three year old with a watering can…

Keep your chin up. I know I am! X

Playing catch up

Life here has taken on that sort of orange glow that those of us without expensive (or even just plain old ‘good’) cameras takes on at this time of year. Time spent indoors, interspersed with trips to play outside in the snow and ice, generally accompanied by Hubby who is having far too much of a good time to bother taking photos!

There is still that low lying residue of illness and general health niggles in the household, which has been the main reason for my lack of posts, to be perfectly honest by the time one and all are safely ensconced in their beds I am just about done for the day!

We have been trying to keep ourselves occupied otherwise, the Tallest is proving herself to be a real chip off the old block and has been sewing up a storm for her doll, her latest dress made with red felt and an appliqué flower is just so stunning that I’m going to get a decent day time shot of it to share with you another day. I’m knitting a school cardigan for the Tallest too, as I am disappointed by the shop bought ones and she is currently attending school wearing both a jumper and a cardigan. She feels the cold terribly and until I get this cardi finished it is the only sensible solution!

I hope that I will get my blogging mojo back real soon, as I do enjoy my time putting together a post or two here, but sometimes rather inconveniently life gets in the way of telling others about it doesn’t it? And a good early nights sleep wins over it all!

Sweet dreams everyone and I hope you’re enjoying the snow as much as we are…

Another six months

 

 

It’s been a full week since I was last in this space, my apologies, I initially lost my voice, and throughout Friday and the weekend was rendered incapable of making any sound above that of a whisper, but even more irritating is that it has now transformed itself into one of those tickly coughs which during the day is merely annoying, but at night it has you in fits of unsatisfying coughs, until you eventually become so exhausted you just pass out – which in my case was 5am this morning! Ugh! On reflection perhaps I should have used this time more wisely (on blog posts!), but instead I chose(?!) to sip warm honey and lemon and become increasingly more fractious as the nights wore on, as well my poor husband knows!

To add to the insomnia, I have also just returned from my six-monthly check with the Cardiologist. Despite being a pretty sensible type of chap on the most part, the thought of these appointments leaves me sleepless for days, I should perhaps explain that I am in a tricky situation of being in a monitored pre-operative state. Which in lay terms means “It’s Bad but it Ain’t That Bad Yet” I am 3mm from requiring Valve Sparing Aortic Root Replacement Surgery, or a leaky Aortic Valve away from needing the surgery, so far neither has happened – nothing has happened for the last two years, at some point it will, but up until that point I have to go through wrenching myself apart every six months thinking that is going to be that appointment.

But it isn’t, and life can go on business as usual for another six months.

Hoping to see you again in this space tomorrow, with a less mammoth topic!

 

A proper catch up…

Looking over the posts that I have written this summer, it’s fairly self evident that I haven’t been thinking much about the things that I have been jotting down here (except perhaps for the last one!), I realise that I did say that I would be more visual in my posts over the summer to try and at least simply share what I have been up to, though now that the nights have started to draw in and the children can be persuaded into bed at a much more reasonable hour  it would be sensible to presume that I have a bit of spare time on my hands to get writing. (Ha! I hear all those parents of young children cry – they know whats coming next!).  In actual fact it’s true the opportunity has presented itself on more than one occasion over the last week, but one post was the sum total of my writing, and that was more out of loyalty to my daughter rather than to the blog.

In an effort to assuage my guilt towards the blog I thought that I ought to have a proper catch up with you all and try and fill in the blanks left by the last few weeks of, well, for want of a better word, laziness.

We’ve been out and about in the beloved camper van quite a lot, we’ve spend plenty of it at a local holiday park, whose main attraction is the swimming pool. It’s a special, significant place for us, where we went after mine and the Tallest’s diagnosis of Marfan Syndrome was confirmed, for three days or so we cut ourselves off from our outside lives, hugged our beautiful girls and had a good weep every now and then as the news sunk in. It’s a good place to be, the Girls love it and it’s now inextricably linked to our family history, who needs more of a reason to spend time there?

We have, of course, also had the post camping coughs and runny noses to contend with…the Smallest has the monopoly on this!

The Girls have been flexing their Greenfingers, although the emphasis has been firmly on growing things that are pretty rather than edible. Although it’s amazing how well marigolds look alongside cabbages and beetroots!

As I was harvesting the broccoli side shoots, and handing them to the Smallest to place in a crate yesterday she turned to me and said

“You’re a very good helper Mummy.”

“Thank you” I reply “and you; are a very good gardener”

“Yes, I am”

Oh! to have her confidence. I’d be at Chelsea!

We’ve been riding The Poppy Line too, the girls love the steam engines, we have plans to take them on others, I have vivid childhood memories of many of them having ridden pretty much every line as a child on family holidays indulging my Dad’s passions for steam railways. I never could work out why we stayed in places that were so near a steam line, I always thought it was coincidence, of course I know better now!

The allotment has taken up a fair chunk of my time, as has work. I’ll be the first to admit that I have been finding the balancing of the two a rather tricky beast to tame, and I have to hold my hands up and say that I have been failing miserably of late, and am writing this in bed after feeling washed out all day at work after pushing myself too hard on my ‘days off’ ( The allotment looks splendid though – more on that another time!) I’ve now had a sum total of two days at home on my own without the children since school started, and I’m finding it incredibly hard to sit still, which was, in the main part, the plan. Perhaps the next time that I have to ring the Cardiac Nurse’s I might realise it’s about taking it easy sometimes and not always about ticking things off the list. Front garden cleared and roman blind in the Girls room repaired – tick and tick – Must stop this.

The hospital is the other place that we have been to over the summer holidays, both expected and unexpected trips. I have been having problems with Ectopic heartbeats, now solved with a medication change. The Tallest has been to see the Physiotherapist, and has been visited by the Occupational Therapist. She has new DAFO’s, is shortly to be fitted with Lycra Support clothing (something a bit like this) to help with her posture and back pain, and will have seat wedges and pencil grips to help with her posture and joint aches whilst she is in lessons at school.

She is, as ever, taking all of this in her stride.

When I read that I’m struggling to work out if I’ve been managing everything as well as I could have, it’s little wonder that I’ve been finding it a bit demanding, but on the lighter side of things it could be so much worse, and it isn’t, and that’s what keeps me going.

Then there’s the studio to sort out, as I have committed to making a piece of work for (my first in six years) an exhibition being organised by a work friend, next month. I can’t even take one step inside the place let alone make work in it, quite despite the fact that Hubby and I had promised to tackle it this summer so that I could get in there when the new school year started. And so the list grows…

Any advice on how to make the list my friend, and not my tormentor? (Don’t suggest throwing it away or then I would be truly overwhelmed.)

The positivity has started with Hubby finishing work early and collecting the Girls from childcare instead of me. Therefore leaving him able to help with supper and bedtime, unlike the up till now usual of coming home just as I am trying to settle the Smallest into bed. Not appreciated. Bad timing.

I’m beginning to think that less days at work might be an answer, but Hubby is fully convinced that I would just ‘do more’ at home. He’s probably right! At least we have tea breaks and lunch hours at work!

I can’t see home life letting up any time soon, so perhaps the work days do need to come down a notch. I’m going to think that one over (whilst I am at work for the next two days!).

This last week…

…has been spent

Plugged: into the ECG again, a tricky time at the beginning of the week, hence my silence, but on reflection also a reason to celebrate as my medication has been reduced, so the extra physical activity must be having a positive effect.

Sewing: A couple of gifts, which I hope to share soon.

Sowing: And after the first overnight rain in weeks, hopeful of germination. The raised beds appear to be working.

Blessed: That my two girls are not at all typical girlies and can appreciate some of Papa’s passions, more on that another time.

Wondering: If I’ll manage the next few days at work, as some this week have been a real struggle, even without the added burden of work.

Remembering: To keep my priorities in the right order, it’s all too easy to let the unimportant things rise to the top when the pressure is on. ( see above!)

Realising: That I’ve forgotten to get tomorrows ingredients out of the freezer – so that’s one last thing to do before bedtime!

 

What’s been going on with you this last week?

The Tallest and her amazing Feet – Part 2

Well ,they’re finally here!

Here she is showing me how they go on, and off, and on, and off, and on….you get the picture!

Showing you what they look like from the front…

…and the back.

I won’t lie to you, she’s finding them fairly uncomfortable and difficult to walk in. We’ve been advised to only let her wear them for short periods of time, and then let her return to her old inserts until the pressure pains / marks have worn off. As to go from have ankles in a (very) incorrect position, to that of the correct one means there are a lot of pressure points, her ankle bones are now roughly two whole inches higher off the floor than they were which gives you some idea of the correction that’s going on here.

She’s dead keen to have them on, and is mildly upset that they aren’t perfectly wearable and comfortable from the outset, she’ll get there I just know she will…

…but in the meantime she has to deal with walking like she’s a cross between a penguin and an extra from Blazing Saddles! Bless her!

The Tallest and her amazing feet…

or should that be feat?….of engineering.

Toenails painted in anticipation. A girl needs a pick me up every now and then….

I have mentioned on a few occasions that myself and the Tallest live with a Connective Tissues Disorder known as Marfan Syndrome. I am fairly mildly affected (if you ignore the complicated cardialogical problems) and never had too many physical issues to deal with as I was growing 9that’s probably why I was never diagnosed until after that Tallest was born). The Tallest however has not been quite so fortunate. She is still only mildly affected, she and I do not live with the daily pain that so many people with Marfan do despite being ‘crunchy’ and ‘clicky’ people. But as the term Connective Tissue Disorder Suggests there isn’t a spot on her body that isn’t affected to some degree or other, and her ankles are feet are particularly suffering.

She’s been complaining of leg and foot pain for some time, so after a referral to the Orthotics team, we took the first step (!) towards getting her some DAFO’s which will correct the ankle pronations that she has, correcting the position of her foot, ankle, legs, hips and back…incredible what something for your feet can do for your whole body isn’t it?

We wanted to share some of the photographs that we took with the world, as searching for foot casting for DAFO’s was something that we googled before our hospital visit, and there were surprisingly few images, here are ours for what they are worth.

The blue lines are a ‘crayon’ of sorts, which are used to mark where bones and points of contact are. The Tallest has calluses where the poor position of her feet have been pressing on her inserts/shoes so these are marked to make sure that appropriate cushioning etc can be put in place. The crayon leaves a mark on the inside of the mould after it has been removed, marking them exactly.

Putting on the plaster, the plastic ridge is there to allow the Orthotist to cut the top of the plaster mould without hurting the top of her foot. The Tallest was given the job of holding it in place as the plastering began.

Holding her foot in position whilst the plaster hardens.

Cutting off the cast.

Removing it very careful so as not to misshape it.

And the finished product.

We now have to 5-6 weeks for the actual Orthotic to be made and ready for us to have fitted, but seeings as how it will be made covered in love hearts, I think that the Tallest is prepared to wait. We’ll share that when it arrives to.

If this set of photographs was useful to another child needing to have Orthotics made for any reason, please let me know, as the Tallest would love to know that her experiences are helping someone else. She is very aware that some of the things that happen to her are not necessarily what happen to, say, the rest of her class, and we are always trying to ‘normalise’ her experiences to help her understand that just because it is different, it doesn’t mean that it isn’t something to be celebrated. She’s excited about her DAFO’s so we’re sharing that excitement with you all now.

Happy times x

 

Some finished projects to follow tomorrow….promise!

A highly inadequate post just to inform you all out there in Blogland that the Growing Things Gang is still in extant. Life has just rather been getting in the way of Blog over the last couple of days, and every good intention of photographing the latest little, and very simple pieces to come off my hook and needles has been waylaid.

Hindered by the fact that these two girls are finally on the mend, oh! and the dawn of realisation that I’ve put the Smallest to bed without her last dose of Antibiotic…I’m sure she won’t notice, but I will spend the next hour wondering whether I should go up there and see if she’ll take it, nope not worth it! (Listen to your conscience , and let yourself have a good nights sleep woman.)

We’ve been up to the hospital this morning and the Tallest is soon to get a funky pair of DAFO’s, as her arch supports are doing nothing of the sort, I’m sure that once she gets them, which we have been told will take roughly two months(!), she will be happy to let me photograph them and share them with you all. She’s so excited, a friend from school already wears KAFO’s (you can look that one up yourself!), so she’s totally unfazed, and looking forward to being just like her friend. If only it was all that easy…

Oh, and I have an MRI tomorrow, which I’m pretty certain is the main reason for my slovenly attitude over the last couple of days.

(insert picture of slovenly Smallest, on a river trip we took this year – I have NO new photos! Shouldn’t have left the camera at my friends house then should I!!??)

The impending MRI of Doom also gets me out of the evenings chores, as MrGT goes into ‘extremely sensitive husband mode’ aware that the rising sense of panic is, well, rising, and let’s me have the seatee, no mean feat in this household let me tell you! I’ve been lounging, knitting and watching soppy sunday early evening type DVD‘s all whilst luxuriating on something other than the floor or a footstool! Sheer Bliss, and to think, I only had to have an extraordinarily dodgy heart to warrant all this lavish attention! (I jest, I jest!)

See you tomorrow, with some pictures I hope!

 

Marfan Syndrome Awareness Month

Okay so I know it’s Wednesday…..no hang on a minute……make that Thursday! (note to self, stop getting distracted by other peoples blogs and write your own!) But I realised that even with the best of intentions if I didn’t get a post in now, it would be the weekend before I wrote another one.

The weekend was one of lone parenting whilst Hubby spent time doing all those other things that he has no time in his new job for right now, he promises me that all these hours will stop real soon……I’m still waiting.

 

And one of this…. (photo courtesy of the Tallest)

I’ve made mention of the condition that I and my eldest daughter live with, something that we’ve been dealing with (unknowingly) for all our lives; until August; 2 years ago when my daughters flat feet led us to the Doctors. I was expecting a Physiotherapists appointment or some such thing – NOT one for a Cardiologist for both me and her let me tell you! But as we say in this household Marfan Syndrome is ‘The Best Worst News’ that we’ve ever had as a family. It’s not what we wanted to hear, especially when these things apply to your precious child, but with this news our family is provided with the best chance of staying together for as long as possible… and this is something that just simply wouldn’t have happened without that diagnosis. The reasons behind this paragraph is to let you know that it is Marfan Syndrome Awareness Month this month, so read up on it, take five minutes, you may well know someone who is affected by it, or if not, when that time comes you can have a little understanding and perspective for what can be an all encompassing, and what is, a life threatening condition to live with if not treated.

A Brief Hiatus…and now she’s 5!

I never do like having to begin my posts with an apology, but here you have it, sorry. Things were not good at the end of last week, I had to be plugged into a mobile heart monitor over the weekend, and despite a doubling up of medication my heart rhythms were terrible leaving me feeling worn out at the end of every day. So I opted for bed, rather than the 1/2 hour or so that it takes me to get a post written here. Things have been much better over the last few days, so I’m back, not to share any worldly wise wisdom with you but to give you an idea of what I was up to on Sunday (when I should have been getting a bit more rest in!)

As is always the way for parents I guess, where did the time go? It literally seems like months, not years when I was first holding that lovely long baby in my arms, and also getting to know the parents of so many other not so little ones who were at the party too, who are suddenly this (pretty large actually) band of free thinkers! They all know their own minds and it makes for much hilarity when they get together.

It’s not exactly what I had in mind for the cake protector, but there you go! MrGT and I kept things simple, the pirate ship is the new trailer, which was decorated with sheets, rugs and wallpaper in about an hour, we played pass the parcel and musical statues, and the children (and plenty of the adults) had homemade chips and french bread pizzas for lunch. Which might sound lots of work for a birthday lunch, but seeings as we were outside the whole time, I felt that I really couldn’t serve up cold food, I was only left with a few pieces of pizza and a tub of cucumber and tomatoes, which was fairly distributed throughout the family lunch boxes over the last week, so there really wasn’t any waste, so the economist / ecologist in me can’t say fairer than that. The cake, oh! The Cake, how proud am I of that blinding flash of genius – so simple; just a large and small cake round cut up, stuck together with some homemade jam and covered in chocolate icing. I acquire a secretly smug little grin every time I think about it. It might not be anything special for a culinary wizard, but for a worn out woman at 10:30 at night I don’t think it’s half bad.

As ever I had to have at least one crafting activity for the children to do, last year I had crown making and biscuit decorating (which required a lot of preparation) so this year a simple kit for making your pirate parrot was all I did, I simply printed out the parrot picture onto some card, left crayons, feathers and glue for the children to decorate them with and then taped them in place on their shoulders when they had finished them. In all honesty most of the children were so busy playing that they didn’t want to stop to make one, so rather handily  they became an extra little something to put in the party bags, which were also very simple, with sweet stuff, cake, crayons and homemade pirate drawing books (more on those another time I think). Even though in my mind I hadn’t put in half the effort that I was able to last year, it was still a good party, and most importantly the Tallest got to be the Birthday Queen for the day.

So here’s to another 5 years flying by, and ( I hope) to pop back real soon and get back to the regular blogging again as I have to admit to finding it rather cathartic.

Enjoy your weekend, and I’ll see you on Monday.