Silver lining to the unemployment cloud

I've now been unemployed (outside the "gardening leave" state) for just over a week.

While it's utterly annoying to be without work, it came at a good time for Holly. It meant that I was able to attend her intensive therapy sessions without worry of missing work or having to take holidays. Unfortunately Sue could only attend the days she didn't work (Tuesdays and Thursdays).

We're looking at booking more intensive therapy in 4 to 6 weeks. I really hope I'm not still job hunting at that point.

Intensive therapy for Holly

Over the past two weeks we've been doing intensive therapy with Holly. Given that she's only one year old, this really means doing an hour a day for four days a week (she has Wednesday as a rest day).

Sue and I were sceptical and hopeful before we began the sessions that they would aid Holly overcome her movement related issues. At the beginning of the session we had to list some goals we had for the two weeks.

Happily enough, one of the goals - Holly sitting unaided for a small amount of time - was achieved long before the end of the two week session.

Both Sue and I are really ecstatic with the progress Holly has made and we've seen how tiring it has been for her to do the work, even for the hour session. Now that the two weeks is over, Sue and I have our homework to continue what we've learned, while going back to having the one hour a week session (plus the hour a week NHS session).

Sue and I were so happy with how things progressed that we're eager to book in another two weeks. This won't be for another 4 to 6 weeks, to give Holly time to take on board everything she's gone through these past sessions.

MMR jab for Holly

Let it be said that scare tactics do work.. sometimes.

In the case of the measles outbreak in Wales and its impact on our decision to get Holly the MMR jab, job done.

Sue and I had really been humming and hawing about whether to get the jab for Holly (it should have been administered about 3 months ago, around her first birthday), but all the horror stories of it opening the floodgates to autism were all too real for us to want to proceed any further.

It's really the lesser of two evils - the horrors that can come with infant measles (which are NOT nice) or a lifetime communication problem.

This hasn't stopped us videoing Holly in an attempt to remember the good times (and to have evidence if the worst does happen). We realise the evidence linking MMR to autism has been discredited, but when you read about people winning lawsuits, it makes you sit up and notice.

We're hoping for the best with Holly in all this, and if Emily wasn't an Autie, we probably would have no concerns. Time will only tell if we did the right thing. I'm hoping this is not yet another instance where I wished I had a suped-up Delorean.

Cease therapy for Emily

We've started Emily on the CEASE therapy homeopathic treatment. We've read up about it, and had a consultation and at this point we're willing to try anything to alleviate her symptoms, increase concentration, etc. etc. etc.

The only problem is (well, so far anyway), there's a LOT of pills for Emily to take in a day and a few of them are "horse pills". I've crushed them up and boiled them, but I still have to come up with incredibly inventive ways of getting them into her system.

Yesterday I added a stupid strength amount of squash to the pill mixture that would have drowned out just about any other taste known to man. That combined with one of her beloved bendy straws saw the entire mixture downed.

Not sure if I'll have the same luck today.

We're also supposed to start seeing some signs that the therapy is working. Others would call them side effects, but apparently as Emily releases the toxins and pathogens from her system all kinds of crap can happen (I mean that literally as well).

Here's hoping we get something meaningful out the back end of all this.

Therapy is paying off for Holly

Sue just called me with two pieces of excellent news.

The first is that Holly not only sat up by herself (which she CAN do when she really wants to) but she then sat unassisted for just over two minutes! This is fantastic news really. Her trunk is the part of her body that's letting her down and will most likely be the cause of issues for her in later life, so if she's able to control it already, things are looking up!

The second piece of good news is that BUPA have agreed to pay for another set of sessions. We WILL have to look for some money to continue the private therapy, but at least we have another 6 or 7 sessions sorted out!

All around good news then.

Emily's annual review

We sat down at Rainbows with a collection of professionals in Emily's life today to talk about her progress and to map out the next year.

All in all, I think everyone involved - head of Rainbows, teacher, and therapists - were quite happy with Em's progress. There's obviously a LONG road ahead, but we're no longer in the starting blocks.

Sue and I got to air some of our concerns that we noted recently with Emily - mainly the flicking of book pages and stabbing her thumb through them and pushing adults out of the room once she'd got what she wanted from them - usually a book or a Richard Scarry video on the TV. Everyone involved is going to work on some strategies to help Emily overcome these "issues".

We have a four point plan that we're going to work against over the next year that will hopefully push toward fulfilling more objectives on her statement of educational needs.

Holly died a year ago today

Holly, one year ago.

It was exactly a year ago today (3 March 2012) that we raced like maniacs from Sutton B&Q to the resuscitation unit at St. Helier's. It was a year ago today we were told that Holly was brain dead and there was no activity behind the eyes. It was a year ago today we were THEN told she was successfully revived. It was a year ago today we began our month's residency with the amazing folk at Evelina Children's Hospital.

I keep thinking sometimes that in a parallel universe somewhere (OK, I've been watching WAY too much Fringe lately) Alternate Sue and I are visiting a grave today and wishing beyond wishing that what happened hasn't actually happened. I can't begin to imagine what our lives would be like, what mental state we'd be in had the alternate reality happened. Thankfully we haven't had to find out.

Not to say the past year has been without it's problems due to this - we've had medications, therapies as well as a diagnosis of Choreoathetosis, which is a type of Cerebral Palsy where there are too many unwanted movements. At the moment, we've been told worst case scenario is wheelchair and never walking - but that's worst case.

It's been a long year and we made it through. I'd like to thank everyone again one year on for their wishes and prayers and I would be utterly remiss not thanking all the professionals and specialists who have been working with us to ensure that Holly's little brain recovers as much functionality as it possibly can.

DLA application

There's nothing more disheartening than filling out an application for Disability Living Allowance for a child. You really need to pour it on thick - without lying - and explain how helpless, and utterly incapable of living a normal constructive life your child actually is. All for a measly couple hundred quid a year.

The problem isn't having to write it down, the problem is seeing a condensed booklet of your child's disability and everything it means all in one place. Reading how they can't brush their teeth, or dress themselves, or cut their own food, or go to the toilet by themselves or even communicate using more than one word.

It really makes your heart sink seeing it all ... written down.

Still, I hope Em's case is strong enough to enable her to continue to receive the scraps from the government.

UPDATE: Sue found a website that publishes a guide to help fill in the DLA. Hopefully this will help us navigate the minefield.

Dancing with my mummy

Today is Emily's first school ball.

From 4.30 - 6p, her school is having a Valentine's Ball and students from Rainbows have to be chaperoned by parents. Sue's looking forward to a bit of a boogie with Em, who will most likely be doing the pogo, as she normally does.

The entry is a paltry £2 per ticket and that includes unlimited drink and a packet of crisps.

I keep wondering if the theme is Enchantment Under the Sea and if Marvin Berry and his band are playing. Probably not to both of those, but it's quite funny that our little 4 year old is going to the ball.

Holly's additional therapy

Sue started Holly's additional therapy today. After a bit of a harrowing start (getting lost, having Emily's nappy on not quite right resulting in "leakage"), so finally found the place and got on with the job at hand.

We were wondering initially whether Holly would benefit from additional therapy, but I think the session put our wonder to rest. Sue regaled me afterwards about what transpired through the session.

Thankfully, BUPA are giving us 6 sessions as part of our membership. After that, we're not sure what happens. The specialist said she'd try to shake the tree from her end to see if the PCT (Primary Care Trust) will help us out (even though our own doctors have said no, as we're already receiving treatment on the NHS - although this kind of treatment is really unavailable anywhere else).

The most gut wrenching thing was Sue telling me Holly might have Cerebral Palsy. I realise those two words separately loosely mean brain damage, and that we're living in cloud cuckoo land if we think she escaped dying with no lasting injuries. It's just when you say terms like "Cystic Fibrosis", "Multiple Sclerosis" or "Cerebral Palsy" it sounds so final. I guess it's the label and the society baggage that comes along with it.

The therapist was not eager to label Holly yet, but said signs points to this being the diagnosis. On a positive note she was really impressed with how bright and alert Holly was and some of her movement were also good.

Here's hoping. Here's hoping.