It's life Jim, but not as you know it...or want it to be...

First off I'd like to say I've noticed that there are a small handful of followers here and I know I get a certain number of people reading from around the place.
It's nice to know that I'm not just blogging out into the ether and lovely to get comments from people too if what I've said strikes a chord, makes them think or whatever.

So thanks people for letting me know I'm not totally alone out here :-)

And so that said I have no idea how to sum up this one.
All the euphemisms of it being an ultra marathon, a roller coaster ride, waiting for the other shoe to drop and anything else you can think of don't quite sum it up.
It's been a veritable hail storm of shoes lately and I think I have the stitch in my running of this ultra marathon.

When I get news of varying descriptions I usually sit and process for a bit, maybe do a whole lot of reading, maybe throw a mental tantrum, rant and rave it's just not fair, kick a few walls in my head - and then you just have to get on with it.
That usually, for me, means more reading, thinking through the issues or new concern and how to manage it in the context of our day to day lives - and then picking up and doing it.

It's the only way when the kids are depending on you.

But you do need the headspace to do it in - and sometimes the shoes are falling so fast you get dizzy and just don't have time to process.

And so it has been this week.

T went and had his scope and biopsy last week and the very quick chat I had with the surgeon said that the oesophagus looked okay. So no scarring, no surgical problem - great news.
So then what's the problem??? The possibility of EE (eosinophilic oesophagitis) I thought had vanished too as there are usually tell tale signs in the oesophagus to be seen on the scope.
So - as per my protocol I start to do more in depth reading and discover that in 9 - 32% of kids with EE they don't have changes visible on endoscope.
So it's still a possibility - a rare presentation of a rare condition, um, yeah, that'd be us. Having talked to the dietitian this week as well she said that at the early stages of the disease there often aren't changes anyway - and if T has it that's where he'd be.
So we wait for the biopsy results which will tell us definitely yes or no.

On the basis of the endoscope being fine and knowing there isn't any scarring or narrowing and so the impaction risk is really really low we decided to give in to T's wishes and try him back on normal food.

That would be an epic fail to put it nicely!

We started on Monday with just some bread which he loves and hasn't had for about 2 months - this whole saga's been going on for nearly 6 months now. That resulted in hiccups and an attack of the 'gloopies' like we hadn't heard in ages.
But he was happy enough and so we gave him some bread the next morning.
That morning we had an appointment with the surgeon for N (that joy will be discussed in a later post!) and T was still cheerful although saying he was a little sore.
He happily declared to the surgeon that bread didn't hurt and the surgeon commented that T had more colour in his cheeks than he'd seen in some time. Certainly T's energy levels improved dramatically once we gave him something more solid than rice bubbles!

But it all turned to custard later on that day with loud, audible gloopies, frantically busy one moment and lying on the floor crying and resting the next and complaining of increasing pain. But the time P came home T was doing his last round of frantic activity running round and round the coffee table, laughing like crazy trying to catch one of his brothers. And then he absolutely hit the wall - screaming crying hysterically, totally inconsolable. He was complaining of a lot of pain in his tummy and chest too. In the end we put him to bed with no dinner eaten and his night feed on and loaded with a dose of pain killers. He needed another one around midnight that night too as the pain woke him.

I guess, at least he showed us that it wasn't all in our minds.

But P was taken by surprise at the mercurial changes in T's mood. I've got used to these sudden collapses over all this time as I have to deal with it most often but it had been a while since P'd experienced one first hand.
And so we emailed the dietitian that evening - only to get a call to come in for an urgent appointment the next morning.

End result is that he's now on 3 tube feeds during the day as well as his overnight ones. This way he won't be on the pump all night and we can keep his energy levels up during the day. BUT...and there's always a catch...he can't sustain much of a flow ate so even though we're starting on 100mls a time it's still taking a good 3/4 of an hour to get it down. So that seriously limits us in doing anything outside the house at the moment.

We're on day two of this new regime and in fact he has increasing pain levels, eating way less orally and actually quite miserable.

So my biggest fear - that with day tube feeds we can kiss goodbye to the oral eating skills we have worked so hard on and fought for - look like I was right. We'll see, it is only day two and he does have to learn to adapt.
But it's so depressing to be at this point after all we've been through to get him to eat.
He wants to eat, he cries to eat, but then he cries in pain as well.

His self report of pain hasn't matched with what I can see and suspect are the real pain levels and so I've just introduced a faces chart for him to indicate how sore he may or may not be. Interestingly he says he's only a little bit sore and then points to the 3rd or 4th face out of 5. I have double checked with him to be sure he understands the scale - it's a proper paed scale they use in hospitals etc that I've printed from the net and designed for kids slightly younger and older than him.
I've also been looking at pain rating scales that medical people use for assessing pain in kids who can't tell you how much pain they are in and my reading of those would rate his behaviours at about the same pain level as the face he is indicating rather than his verbal self report.
But so sad for him that he's experiencing pain like this.

The whole situation makes me feel heartsick. The child's journey has been so difficult and so full of painful experiences. I can only hope we find the light at the end of this particular tunnel for him soon.
Even if the final diagnosis is EE, at least we have an answer and can relieve the pain for him.

It's all such a long journey, one that I'm tired of, we make progress and then have it all snatched away.

I should be grateful for the tube - the tube I fought so long and hard to get for him. But I'm not, maybe I'm greedy but I want a kid who can eat as he wants, who doesn't live with pain, who doesn't wake at night, tell you he's in pain but "I can ignore it Mummy".
Why Thomas? Why us? Why can't things just go right for once for us and him??

But for now I have a little boy, sitting by my feet, groaning and who needs cuddles and care.

Life changes everything

Apologies for the corruption of the song title - and apologies to Les Mis!

But the last while, probably the past 6 months or so have been a time period of some realisations round here.

Life changes and moves on as kids grow, develop, need you less intensively but more in other ways and so on. Like many stages in life you have expectations of how and when those changes will occur. When they don't happen in the way you expect, to the level you expected or at all then there is a process to go through and part of that includes grieving.

It took me quite a while to realise and recognise the grieving needed after a premature birth - never mind repeated ones! And then it seemed we just kept getting hit - the expression used in the Prem Community is waiting for the other shoe to drop, sometimes you wind up being pelted!

But we have done the grieving process around the kids' various diagnoses, we recognise and know how our lives are different, forever changed, won't follow the paths we watch our friends with kids follow.

But we have also come to realise that the grieving is an ever evolving things, just as discovering new faces of the losses is ever evolving.
The kids' surgeon said recently, in trying to reassure me that he would get to the bottom of T's problems, 'Life won't always be like this for you, you know'.
It's a lovely sentiment and I took it at what he meant - this week will be the 6th time in 3 years he's had one of my kids on his operating table!

But I continued to think about it.

Now, he's right, but he's also wrong. Our current problems may not be what we will be taking forward with us in the future but, because of the nature of the kids' issues we will be taking forward different faces of related problems.

The battles we faced with W at 5 and point blank being unable to cope with me parking in a different spot at school are no longer an issue. But, since his voice has broken he's lost a lot of expression in his speaking voice - it's a stressful rah rah rah sound. I had always been thrilled we had avoided the Asperger's 'robot voice' but here it is and I have no idea how to teach expression!

I discovered the other day when I asked him about 1 detail of something that he couldn't short circuit the explanation - he had to run through the first we do..., then there's...etc. I butted in and said I just needed him to confirm the end times of the relevant swimming lessons. Total blank. Almost slack jaw territory.
He had a script in his head and couldn't short circuit it.

Just different faces from the same cause.

N's food battles rage onwards as yet unresolved and we have also come to the realisation that he is going to need an involved and aware liaison between home and school once he goes to school and particularly through secondary. Even before we pulled him out of school he was mucking round, caught half the instructions, figured out the rest on his own and finished before the others and so continued mucking around.

At home he often needs things repeated 3 times, often not because he talked over the top - which frequently happens too - but because maintaining focus for 'boring' stuff and actually knowing which are the details to catch is an issue.

He will need guidance and actual teaching how to organise himself, to make sure he knows what he needs to do for homework, which books to bring home, when things are due in. A lot of the NZ secondary education assessment is done with internal assessment so organisation and knowing how to plan are going to be crucial - and skills which will be more challenging for him to pick up.

With T his speech is struggling again, possibly due to his current health problems. Depending on what his scope shows up on Friday we may be looking down the barrel of a significant and life long health problem.

I remain extremely unconvinced by the SLT's theory that T's speech delay was due to lack of input because we were dealing with his health issues. 2 other SLTs have said there is something in his language processing at fault. So the question is where that will show up again, if it will.

Currently I'm battling just to keep his learning moving along. It's being delayed again because of lack of energy and pain at the moment and he certainly hasn't picked up all of what he lost developmentally between 2.5-4.5.

I had thought that by the time I had T at school I'd be doing a refresher to go back teaching or re-training for something else. As recently as 6 months ago I was looking at requirements to do nursing training or paramedical work.

But both P and I have come to understand that the kids are always going to need more than others. That gradual release parents do is going to have to be a lot more gradual, the work beforehand lot more intensive - and the release never as complete as other parents, particularly in W's case.

In order to get the best outcomes for the kids this does mean that they are my career path. Even if/when they are in school the home/school/medical liaison is going to be time consuming.

P has come to realise that the succession plan at work of him taking over from his parents is not going to work due to the kids demands. There are other changes afoot which significantly change our lives but will be revealed later. But it is in large part due to the children's demands and will make him more available for them and me.

I have recently had a wake up call - P came home with a nasty bug which I caught. He was sick but a course of antibiotics cleaned up the dregs for him. In my case it managed to turn to mild pnemonia which didn't respond to the first course of antibiotics (apparently resistant but wasn't actually tested) and I'm now far from well but definitely improving considerably everyday. The fact that I could be wiped out so easily by a bug that I'd have fought off fairly easily in the past is a reminder of the impacts of arthritis and the associated meds, life stress - and the horrible fact that I'm actually not in my 20s any more.

I had a GP recently say she doesn't know how I do all I do - and that she wishes she could just write me a script for a holiday.
The kids' paed said this week that she's amazed I keep up with all that I do and that the kids' demands are a full time job.
Yup, they are my job, my career path, I am a professional mother.

But both P and I have had to realise recently that this is actually it.
This is how it is, it'll change fronts but the base fires will always be there.
Some more hopes and dreams have to change, won't actually be possible.
And with those adaptions comes my own awareness that I now need to set up ways of future proofing the demands, for my own health as well as the kids' well being.
Saying you actually can't do everything is not easy. But this pneumonia has shown me I do actually need to sort something lasting and effective. But even having to think about this is another loss.

Life changes, we grow, life changes everything.