If you let it creep in

Three weeks prior to Christmas Zack got his usual bout of winter cold/nose blockage. Compared to previous years he has had it quite easy. He missed quite a bit of school but then I don't think he was too bothered and lets face it, isn't the last week of school before Christmas just where you bring in Operation or Buckeroo?

Trouble is Zack's cold goes something like this. Cold, nose blockage, can't sleep, sleeps, wakes up snorting, back to sleep, snorting and so it goes on and on and on. This time it's gone on for about six weeks. Plan is to now contact ENT to see if there is anything we can do. Not sure if there is but surely it can't be right that it continues for several weeks.

Last night Zack decided to stay awake in bed until 1.30am. Yep, we happened to have friends over. He knew that. Why should he lie upstairs in his bed listening to the gossip downstairs? Several rounds of chat from me to him about the fact it was late, go to sleep and it's bedtime, made no difference. Coming downstairs in a blanket helped. He went to sleep within five minutes after he tried to suss out who was in his living room.

Christmas and birthdays are tricky times. Magnified now that Scarlett is growing up, it's lovely to see the excitement in her keeness to rip open her presents, well, just rip paper really. And although Zack does like his present opening it's hard to know what to buy a little boy with such complex needs. He did do very well though. He got a fab dragon that roars and moves with only a touch of a button, a pimped up noise producing flashing light car, plenty of noisy sensory toys and a TV for his bedroom. And whilst he obviously takes pleasure in these toys it's not to the extent that his sister does. If you let it creep in, that emotion that you feel in watching the ever increasing difference between the two siblings is a bit like an underlying sadness that just simmers beneath your foundations. You know it's there but you keep it buried, underneath the concrete. Sometimes, like at Christmas it knocks and you have to acknowledge it if only for a while, then it goes and you can carry on focusing on the present.

I guess what I am trying to say is, and I think other parents of children with special needs will understand, is that there are certain times of the year that make you look and sometimes wish that the circumstances were different. But for me this glimpse is brief and then I go back to see the totally fantastic individual he is and I think he is the only Zack I would want to have in my life. Not a normal ordinary little boy but my extraordinary miracle.

Here's our Christmas. We had a good time. Hope you did.

Ooooooooh the presents

Yes me and daddy are in us onesies

Ben 10 woohoooo

Dog on a stick

You're not that funny Zack

Loving my sister

I is going to eat all the food.

Nice gravy jug

Happy Christmas

Happy Christmas one and all.


We have had a lovely time, children spoilt and Zacky pants got himself a TV DVD combo for his new pad.

Will post pictures soon. 

But for now here is Zack enjoying a donkey ride through Santas grotto and meeting the man himself. I mean what else do you do on Christmas Eve eve. Thanks to The Donkey Sanctuary Manchester.

Well it would have been a nice picture if it had worked!!!!

So look who's gone shopping

When Zack was little going to the supermarket on my own, meant pushing him round in his specialised buggy whilst balancing a basket full of essentials (I never go in for just one thing) on my left arm.

I used to envy the other parents pushing round their toddler in the supermarket trolleys. Well check this out.

A while ago I posted about a brilliant test product from the research and development department at Cerebra. A portable seat that could be used in supermarket trolleys, on dining chairs, in fact with most furniture that allows an individual to sit. Shift forward a good few months and a company called Leckey that produces equipment for children with disabilities have took it one step further and launched the Firefly Go to Seat. Firefly is a brand belonging to Leckey, they design and manufacture products to support special needs family participation.

So look who's gone shopping to Costco for his bumper pack of washing-up powder, best kitchen rolls in the world and free taster food, the Pants.

Oh and me of course, and his dad, and his sister, who refused to sit in the trolley, why do that when you have huge ailes to run around?

The Firefly Go to Seat is part of a collection of products that Leckey are developing to help make life easier and more inclusive for families who have a child with a disability. 

Lets just pause for a moment. Wait, a company that is actually producing products to make life feel a bit more normal. Finally, someone is listening. 

Getting back to the chair. The improvements and development of the product are very good. It is still lightweight, extremely light in fact, easily carried with one hand.  You can pop it into your car or carry it onto a train or bus, it takes up hardly any room. More importantly (for me as a woman) the colours are good, not garish and ugly but pleasant, light green, blue or pink. 

There is a five point harness, padding to the chair and what I noticed compared to the original design is the back has some flexibility from the base, in that it gives slightly. 

The pants is a bit of a bigger boy now so this seat will probably serve us well if we want him to sit on a chair in a restaurant or even perhaps travel by plane....ooooh the very thought. 

But I can still get him into a trolley. Even if he does look bemused by the whole process of me faffing about tightening some straps.

Whilst the harness does keep him secure it doesn't provide him with total trunk support so he tends to lean slightly. This however wasn't a problem, a bit of a nudge, encouragement to hold onto the bar of the trolley and hey presto he was sat up and enjoying the ride. Who said a spot of extra therapy can't be thrown into any situation.

This seat really does make shopping easier. It makes life a bit easier. What's more I think the price of the product at £125 is reasonable. I just wish this was around when Zack was first born it would have probably allowed me access to a simple task that most people take for granted. 

Negative comments

In the beginning doctors, specialist and therapists would have nothing positive to say about Zack.  In fact, I would be reminded that Zack had suffered a severe injury to the brain and would most likely be profoundly disabled. 

When I had heard that for the tenth time that month, I often wondered whether the medical wonder that uttered the same phrase to me had also suffered some form of slight brain injury. Did they think I just hadn't got it? 

As time went on, the appointments got less. Actually, I learnt to weed out the ones that were unimportant and stick to the ones that provided the most value for Zack.

Why, you may wonder am I writing about this now? Well, over the past month I have had copies of two letters sent from consultants to my GP about wonder boy.  Usually letters follow a set pattern of fact then negative comments.

But within these, in between the usual diagnosis was the odd, and yes I read them twice, positive comment. 

Comments such as Zack is a responsive young man, Zack is more aware than you would assume, he very medically stable.

Essentially I think one more or less said, given that he is at the top end of worst case global brain damage you can have he can actually hold his head quite well, and in laymans terms I take that as being do you know what he is pretty dam good.

Of course I knew this all along. I don't need to hear someone else say that.........but it does put a smile on my face. 

A new vantage point

Strange things are afoot. Literally. We are talking moving legs and feet.

Over the summer Zack started to take steps with his legs. This miraculous account seemed unbelievable at first. I put it down to tone, using the high tight muscle tone in his hips forcing him to lift them. But he has performed this little piece of theatre several times, getting stronger and better with each practice.

We discovered it together. Innocently in the back yard, outside, playing with his sister. I stood him up, holding him underneath his arms. Zack loves to stand, he likes nothing more than to stretch, I encourage him to push, to bear weight through his legs. On this day he chose to lift his leg up and place it down, followed by the other. As I got more excited and shouted words of encouragement, Scarlett did laps. This was followed by such joy and laughter from Zack that he nearly threw up due to screaming with delight.

We told his new physio. I suggested we try him in a walker. She suggested we wait and let her assess him. Okay I agreed. I joined Zack at a recent physio session, the walker was out, a base with four wheels, with a frame and moving seat. She placed Zack in it, and whilst he reasoned not to show his new skills, I could see the delight in his face. The pleasure of being up, being straight, the freshness of a new vantage point. He loved it.

I agreed that she would try him occasionally in it and see how he goes. All the while in my mind I know I will continue in agreement with his physio but encouraging his movements. And one day, soon, I will buy him his own walker.

Zack has pushed me into believing in him. I think I stopped. For a long time I think I had given up, I stopped believing. I accepted the situation, thought this was to be him. He showed me it isn't and to get up and fight again. To believe in him. Always believe he can achieve more. Sorry I doubted you.

Change to the parking procedures

The pad is almost complete and King Zack has his own en-suite. I don't even have my own en-suite.

I'm really pleased with his room, it looks great. Lots of light and space in his bedroom and his bathroom, whilst accommodating his needs, doesn't look clinical. Completed pictures coming soon.

At the moment we are mid snag list. We are living with no kitchen and looks that way for at last another month and a half. Our makeshift island looks fabulous....if you like shabby chic that is and microwave meals.

Zack continues to do well at school. Seems like he has settled in as have I. Already he has managed to get hit by a car (not to worry it was more of a push and no damage taken) this resulted in a change to the parking procedures. Also, I have managed to have a row with his new physiotherapist about the amount of physio he receives. It ended well, I think. Either way he seems to be getting more now than he did before so that's a bonus.

Scarlett has started pre-school. She has unleashed her independent spirit (a.k.a downright defiance). Each morning I go to collect her with a slight dread at what reports I get. I can hear myself saying, we do discipline her you know, I mean she is just so strong-willed. All the while I bet the staff are thinking yeah, yeah, yeah, heard it all before. Secretly I like her fire. I think a bit of fire in the belly is a good thing. Zack's burns with determination and stubbornness, Scarlett's sparks with absolute certainty of her own mind.

Think things are going to be harder with these two, not easier.

I am left with the small one

He's in. He has started school. My little baby is now a big boy.

All smart and gleaming he began a new chapter in his life and joined the masses at school.

He did half days last week. The first morning that I collected him he was not too happy. Throwing a sulk in his chair, thrashing his arms, generally getting agitated. The teacher told me he wasn't too happy in his school chair, so she got him out and he sat on her knee for a bit.

...........wait a minute, he's been there five minutes and already he has people getting him out for a knee top cuddle.

The rest of the week I heard how he had been smiling and giggling, something he refuses to do for me when I collect him, whereupon he puts me proper in the doghouse for a good half hour.  This week he is in for full days, he is going to be shattered and will also probably hate me.

Now I am left with the small one, but fear not, if all goes to plan she will be in pre-school three mornings a week, and me, well, I have enough projects on to last me until 2030.

Here is a picture of my superstar.

Hoarders from Hell

Zack's pad and our new kitchen is continuing to move forward with minimal stress. Well, I am now down to a third of the old kitchen with a metal sink that seems to be following me around the house.
 
The builders are doing a good job of keeping us in a liveable condition and the extension is now built and complete with roof. This week the double door opening is being created which means knocking through into our dining room, the plasterer will be, well, plastering and the floor will go down.
 
The back of the kitchen that needed to be levelled for Zack to have complete access has been knocked down as it stood on hardly any footings. This is going to be rebuilt this week. Our lives reflect a very upside own house, a spare room that wouldn't look out of place on Hoarders from Hell, a make shift kitchen and mdf board all over the shop. As for mopping, I am now an expert, and still the dust follows me. I keep repeating, it's not forever, it's not forever, it's not forever.

Here are the latest pictures.

Knocked down back of kitchen next to new kitchen

 

New kitchen, nice doors.

 

Inside new kitchen

Our old kitchen or how we are living now.

Blubbering wreck

That's it. It's is over. Complete. My baby boy is no longer my baby boy. Today was his last day of Nursery. That fabulous, wonderful place called Sandy Lane Nursery and Forest School.

Two years ago I remember taking him with trepidation and a likes and dislikes list as long as my arm to hand him over to complete strangers. It took a few months for him to settle in and he still hates his chair but it has done him the world of good. 

We are lucky to have such a fantastic facility in Warrington, with such excellent staff. We are going to miss it and them a lot.

And so we go to school. Baby boy becomes a big boy now as he moves on to Foxwood School. A special needs school close by to where we live. He will be in a class of five other children who have similar educational needs. 

We have already had three visits all of which went very well. At the moment I feel really happy with how things are going, but I bet come September I will be a nervous blubbering wreck. Walking to the school with trepidation and a list of do's and don'ts as long as two arms.



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One iffy day

We've been away to Devon. Exmouth. Had a very fun packed busy time. Seven days in a caravan, trust me, by the end of it I would have quite happily taken a vow of silence and booked into the nearest convent just so I could have some quiet time to myself.

The weather was good. One iffy day that required a visit to the World of Country Life...you have to say that with a Devon accent otherwise you won't get the full appreciation of just how Countrrrryyyy this place was. Honestly, it was a lovely day out, I suppose one would call it quaint. In fact, lets see it seemed to sum up Devon. It really wanted to try and be a touristy, holiday destination but doesn't quiet have the fizz and sparkle, it's a bit half hearted in it's attempt. It would probably get a C+ for effort.

I was impressed as they let me get in free. Only because I happened to be touching Zack's wheel chair at the point of payment of tickets. It was good of the girl to state that carers get in free, usually you have to ask and some places don't offer at all.

We walked into an apparent reproduction of Victorian England in the countryside. It was dated. Yes I know it's meant to be historical but the displays were dated. I mean there was a giant bear made out of matchsticks...look.

What I loved though was the fact that they had obviously used shop mannequins as their display dolls for the cabinets. They had even drawn on a pretend moustache on a female mannequin pretending to be a soldier from WW2 or it could have been WW1. I loved it. Check out my photo of Wedding Dress posse and scariest doll ever.

Seriously the rest was great fun. Loads of play areas for Scarlett, a free Birds of Prey show which was brilliant but slightly stressful due to the fact that I had to keep a two year old sat down and quiet for 30 minutes otherwise the Hawk thing would have eaten her.

There was a pen that you could go and sit in that had sheep and baby goats to stroke. Scarlett did not like it. Nor the wait for her brother. Zack did not like the enourmous amount of baby goats that stuck their heads out of the railings at him, nor did he like the bird of prey called Zak.


Actually writing this I think I am the only one who really loved it. Big up for the World of Country.

The rest of the days where spent going to Exmouth, Lyme St Regis, on the beach oh and eating, eating and eating.

Big news of the holiday was that Zack, my son, who could never stand the car and required Chloral Hydrate to go on car journeys of great length was amazing. He did the whole journey there and back with no sedation, he was well behaved, in fact they both were. Okay small one had Dora on the ipad but it got us there with not much stress.

Great holiday.

Waiting for daddy and Zack to come out of the sheep pen.

He is so not impressed that the bird behind him is called Zak with no c.

He hated those goats.

This picture sums up our holiday. XX

Don't take it personally

This week we attended Zack's transition meeting. Not that he is changing into a butterfly or anything, he is just growing into a big boy and will be off to school in September.

His Dad and I met with his new teacher, his existing nursery teacher, school nurse, vision teacher and his two physiotherapists.

It went well, we basically outlined a summary of Zack. Went a bit like this. Can be lazy. Don't be fooled. More there than you think. Make sure you push him. Will tell you if he doesn't like something. Will smile and laugh a lot if he is enjoying things. Will also sulk and ignore people. Don't take it personally.

Nursery teacher was lovely and explained how much he has grown in the two years he has spent there, how he is a lot more capable, stronger and definitely ready for school.

We decided upon some trial days for Zack, whereby he will go in for an hour or so and then one where he will go for a couple of hours and have his lunch there. This gives me the opportunity to talk with the nurse about his blended diet (so not the norm for tube fed kids) and his care plan. This will be about his epilepsy, which again can be summed up as, can have some quite bad days, often he is very good, just has a few seconds of stiffening his whole body then he relaxes, not bothered by them, don't worry about it.

Seems when he starts school he will be straight in to full on days. Oh what a year of changes this is. Don't think my life has ever been quiet since I had Zack. I often think it would be extremely dull too.

Wagon Wheel anybody?

It has started.

The extension and adaption is fully under way. I came home Monday lunch time, opened the back door and there was a man in a hole up to his shoulders.

Hello I said, you work quick.

Yep, he replied, we're like moles.

Indeed they were.

I now have footings. A dodgy back part of my existing kitchen that may or may not get knocked down, a choice of brick to make, a kitchen to decide on and it's only three days into the little project.

What do you do when this happens? Book a holiday for a week's time, that's what. Yes, we are now going to Devon for a week.

And, Scarlett has the chicken pox. Seems she wasn't the carrier, her adorable brother was. Compared to her he had it mild. Poor little girl is covered in them, which equals a lot of agitation. Which means me giving in to her bad food choices, Wagon Wheel anybody?


Here are some pictures of the beginning. Read this blog in three months time and I'll either be checked in to the Priory, an alcoholic or pleasantly relaxed and enjoying a new kitchen.

Before. Back of house. Note tree growing out of neighbours chimney

Hole.

Brick stuff.

Chicken Pox, Shmicken Pox

Honestly, life is never just quiet for me. Drama, drama, drama.

Two weeks the Pants has been granted, two weeks release from Nursery for half term. When did half term get to two weeks, I never had that luxury. First week, weather not so great. Second week oh hello sunshine and hello Chicken Pox.

Yes the boy got the Pox. I had been dreading this, wondering if this childhood virus would send his seizures soaring, cause him distress, the list in my head goes on. But Chicken Pox, Shmicken Pox, Zack seemed to have stuck two fingers up to it.

I noticed two spots on his back last weekend. Thinking they were bites I just ignored them. Next day some more spots and the classic blistering. Great. He had been a bit off for a couple of weeks, nothing serious just a bit stroppy and the couple of days before the spots appeared, teary and wanting to be cuddled all the time. In fact the night before the big outbreak he was not for sleeping until in the end he had firm words off Dan and I. Major guilt the next day for telling him off, when we realised what was wrong.

So yes a bit of Chicken Pox. How's that for fun? Oh Zack hadn't finished. This weekend he decided that it would be really funny to pull out his Mic-Key button, complete with blown up balloon. Having only watched the nurse do this procedure, and never completed one myself, I attempted to reinsert the button. Would it go in with ease. No. That would be too easy.

Zack and I went on an afternoon trip to Alder Hey A& E. Could the nurse get the button in, nope. We had to try to widen the hole slowly using suction tubes. Four hours later, one fantastic nurse, one upset little boy and one stressed mummy thankfully had a button back in its rightful place.

And now to add to the dramatic twists and turns of our lives the building work begins on Zack's adaption and our extension next week. Hello mess. Expect pictures, lots of pictures, it's going to be like Grand Designs, except not that grand, or have that posh bloke saying he doesn't think we are going to do it all within budget. Come on, I'm ready.

An unfamiliar skunk

Zack tried out a shower come toilet chair yesterday. It's a Smirthwaite one. It's to go over his new toilet in his new bathroom, you know the one that will be built in about 15 years.

When he sat in the chair with not much support I hasten to add, it was the most comfortable I have ever seen him sit in a chair. Whilst discussions between the rep and the Occupational Therapist were taking place I was thinking could I realistically have my son use a shower chair for school?

This is the one we tried.

Smirthwaite toilet and shower seat


Zack has also been testing out his requirements for future pets. We went along to a Families United F.UN Club and Home Safari came along with a menagerie of animals.

This included a couple of snakes, Zack a big fan of these. One Skunk, which got its tail wafted at Zack, not really the place you want to be with an unfamiliar skunk. There were some hedgehog thingies, a bearded dragon and a Raccoon yes a big Raccoon. Oh and rabbits which Scarlett really liked. Though the cats bring home one or two of these a week, unfortunately they are usually dead or about to be eaten.

Here are some photos.

 

 

We were looked after

Seriously lacking in the posting department. Also seriously lacking in the time department.

We've picked a builder. We still haven't started though. I feel like one of those Geisha girls doing tiny little steps, shuffling forward bit by bit. Almost there. Just a few bits of paper work to complete, wait a week or so, wait for a start date then D Day.

In the meantime, we've been on a little break. Well, we went in Easter to the Children's Adventure Farm Trust

A lovely place, down the road from us in Altrincham. Zack's favourite part was the huge Buddha Bags found in our little abode and in the Sensory Room. Think his dad liked them too......in fact think they both liked them too much.

The Children's Adventure Farm Trusts offers holidays and respite to families and children with disabilities as well as children who are disadvantaged or terminally ill. It's a beautiful place, has it's own sports hall, music room, sensory room, adventure park, sensory gardens, alpacas. Our days were packed, but equally we had time to do our own thing. We were looked after and fed well by the ladies that work at the Farm, who were tremendous given the fact that they were short staffed. So this is a big thank you from us, we had a fantastic time.

Here's some photos of our time at the farm.

Cuddles on the Buddha Bag

The Alpacas, note goofy on the left.

Outdoor sensory musical garden

In the Music Room

Grandad would be proud

Yeah........glad he isn't taking it up for real

Spot of rebound therapy

Can someone get me down now please?

In the walk through birdy bit, neither child was keen, they may have seen the Birds