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

New Plan

Happy New Year. Bit late I know but we've been very busy.




Despite Zack's sedate nature we had a lovely Christmas. Even managed to have a Christmas lunch, just Dan and I whilst both children slept. That never happens.


Zack had started responding well to the medicine but the side effects were awful, floppiness, sedation etc. This all lasted for about eight days then whack the seizures crept up to the 80s and 100s again. We nearly took him in to the hospital but to be honest I thought there was no point. It was a Bank Holiday and probably skeleton staff on, all they would do is give him rescue medicine. 


I waited until the next day and spoke to the epilepsy nurse who in turn got hold of his neurologist, who in turn came up with a new plan.


The thinking was that the Clonazepam had done it's job for a bit but then his body got used to it very quickly. His new drug, Keppra wasn't up to the required limits so that needed to be upped a bit quicker. 


Thus far we've kept the Clonazepam the same and upped his Keppra. We were meant to up it again on Saturday but we hung back because his seizures have slowed down. Today he's only had about 15 which is brilliant compared to what he was having. I am going to ask about doing a slower increase again just to see if we can knock off a few more.  I am hoping that it stays this way for a while but you never know with epilepsy it can all go to a bit rubbish at the drop of a hat. 


On a good note Zack continues to sleep well and is in a lovely mood. Here's some pictures of our Christmas time. Enjoy.

Oh Happy Days

They're all mine

Loving the bike

Mmmmmpfffff......that's what the horse is called.

Loving the truck

Christmas.....it's hard work

He actually made him self sick with laughter

Well, it's beginning to look a lot like Christmas.....and somebody has some extra special presents coming his way and (her way).


Seizures are a bit better around 20 -25 a day rather than 80 odd. Still quite fuggy. Nurse suggested we drop one of the Clonazepam doses see if he doesn't need it. We did that. He needs it. 


Noticed he isn't as groggy as before but still quite floppy. However he is finding everything hilarious still. 


For example. Something was so funny this afternoon that he actually made him self sick with laughter. Yep, vomit all over me and all over him. Mind you Christmas cannot officially begin until you've been vomited on by a child. 


Glad he's in a good mood and can't wait for us all to have our Christmas dinner together. Scarlett's first one and Zack's third, he's beginning to be an old hand at it now. Will post Christmas photos after I have recovered from Turkey dinner, chocolates, trifle, mine pies, drink, chocolates, cheese and crackers. 


Happy Christmas everybody have a lovely time.
XXXX

Zack has remained happy

Tis the start of the party season and Zack has already enjoyed the festive spirit with the F.UN Christmas party. His sister was allowed to tag along, she wasn't impressed with the whole party scene at first until after supping her milk. Then there was no stopping her. She also tried to unwrap Zack's Crimbo present from Father Christmas. My goodness little girl, there's a limit to how much the Pants will take.


Here's a pic of Zack with his daddy and his huuuuuge present.

Alongside the festive goings on we have noticed an increase in Zack's seizures. Started at the weekend with lots more of his extended body seizures. They have been steadily increasing but not bothering him so a few calls in to the local epilepsy nurse and an appointment next week should see us with a new plan. I am thinking he has got a bit bigger and heavier and therefore needs to increase his Lamotragine. 

On a good note Zack has remained happy. In fact he is changing a fair bit, he is starting to find lots of things funny. Such as saying hello to him, tapping a plate with a fork, brushing the side of his face, all hilarious. Long may it continue.

Oh and before I go I would like to give a little hello to a lovely lady who reads this blog who has announced some exciting news. 

Congratulations Ms Harvey the Pants approves. XX

Thank God it's all over

Christmas has been not full of the joys of jingle bells but full of the woes of plague.


We all managed to get through Christmas Day and Boxing Day, Zack got spoilt rotten with too many presents. Then I managed to get ill with an awful cough and viral infection that wiped me out for ten days.


By New Years Eve the Pants had caught it and I have never seen a boy so ill in all my life. He was burning up, wretching and coughing. Managed to get him to the docs and we were given the usual course of antibiotics. He is only just on the mend now but lets just say that was the longest New Years Eve of my life, not one I would like to go through again.


Still there will be other Christmas times but unfortunately this post is not full of ho, ho, ho but moan, moan, moan. Thank God it's all over and roll on Spring is all I can say.


Here are some pics of Zacky Pants second Christmas. 

It's great when you can put someone in fancy dress and they really don't mind

Spoilt

He knew something was different

It's wrong

I think Dan enjoyed making this more than Zack

Look how much my boy has grown up

He thinks Mummy is so funny

That's the what are you doing lady look.

Does three phone calls in a week equal stalking?

(Say this in a Geordie accent). Day 5, Linzi is hitting Zack on the head with a tambourine. Zack is enjoying being tapped on the head with a tambourine. Linzi has full blown cabin fever and did not realise that today was Friday and tomorrow the weekend. Outside is still frozen.




My venture (you can stop reading in a Geordie accent now) into the outside world has meant a meandering stroll down the street. Well, not so much a stroll, more of a sliding my Ugg boots down the lane as though ice skating. Zack knows when he gets taken out for his walk, he sits quietly in his pram, contemplating the numerous ways he can exact some punishment on me in ten years time for making him wear a pumpkin outfit, elf outfit and blow drying his hair into a quiff. I know when it's time to turn back by the colour of Zack's nose tip, a pale shade of pink usually means it's time to return home. Although I am hating the snow and frozen road, it is beautiful here. Everything is so quiet and peaceful, only disturbed as you gaze out of the back window at the cat eating a captured bird in two bites. (This consumption was also followed by a large rat being left by the garage door).


So what's a girl to do when housebound......phone up and harrass people of course. Yes. I have been chasing the Speech Therapist. Does three phone calls in a week equal stalking? I still haven't found out when Zack's next appointment is, in fact, either no-one at the hospital has seen the woman or she is avoiding me. One hopes it is not the latter. 


I also telephoned Social Services about getting Direct Payments. These I think can be used to gain support and help when caring for someone with a disability. Bingo. I was in luck, a lovely girl phoned me today. I think my over-eager telephone manner gave away my mental state of being house-bound. She apologised  for not being able to come round due to the snow etc. Apologise, don't apologise you called me, why we are practically best friends. We had a nice chat about the weather and how we both agreed it was better for it all to thaw out before she came for a visit, I mean I am more concerned about her safety than sorting Zack and I out. I told her all about how I used to work at St Helens College (she lived in St Helens), my whole life story in fact. Just kidding, I'll save that for when she visits, mwahahaha! She suggested that perhaps we can get me a Personal Assistant. Long Pause. A Personal excuse me....thoughts ran through my head of some young girl running round getting me faxes, picking up dry cleaning and answering the phone. No that can't be right, this isn't The Devil Wears Prada. She continued "you know someone to help you with Zack."


"Ohhhhhh, well I'm okay with him I could do with some help around the house you see."
" Oh, right, yes that's fine. What I'll do I'll bring all the information with me when I come and visit, after it's all thawed out."
"Okay, after it's all thawed out."


So I expect to see her in June.


I brought all of Zack's toys downstairs today. We had it all drums, maracas, tambourine, books, wrist toys the whole shahbang. As a special Christmas present I had made Zack a Sensory Book so he could touch and feel lots of different textures. When Dan come in tonight we were just putting things away when he picked up the book.


"Aaaaaah, look you've even written a little story for each picture"
I had. I was very creative.
"Aaaaah Honeycomb....but no busy bee. Fly to the moon space boy. Oh, no. Dinosaurs in your book."
He continued flicking.
"A patch of leather. Christmas tinsel. A shiny disk." He looked at me and his face said it all.


I realised that I had become less creative as it got nearer to Christmas. And to be honest, after wrapping up 45 presents it's hard to think of some witty story to go with a patch of leather.


Right back to the telephone book.......ooooh cold weather payments, not seen them yet, who do I speak to about that.

all of sudden big smile and a gggghhhhhhhh

We think Zack enjoyed his first Christmas, well, we think as much as guess he enjoyed it. One thing is for sure he got spoilt rotten. I have never seen so many presents, of which, I obviously had to unwrap for him. It was never-ending, so much so I got a sweat on, Zack on the other hand had his usual I am totally not bothered about any of this look on his face. We had all just about got dressed and sorted out when Grandma and Grandad Gould visited along with Great Granny Fairhurst. This meant more presents. After an hour of more treats we went off to Nanny and Grandad Price as we were having our Christmas lunch with them. Well you can't expect me to cook, I have a young child now. Plus I would never have gotten round to the cooking given the amount of unwrapping I had to complete. We had a lovely meal and Zack was very well behaved, graciously having a nod in his bouncy chair whilst we ate.

On Boxing Day we decided to brave the sales at stupid o'clock in the morning. I know how very sad. Zack thought the whole thing was amusing and spent the morning asleep and then awake smiling at the Christmas lights. Or he could have been smiling at the fact that there was a mile long queue of people trying to get into baby Next. Now that is ridiculous. And no, I did not queue.

In the afternoon we went to Nan and Grandad Gould for more eating. Again Zack was very well behaved and even cracked a few smiles here and there. Unfortunately his Grandad missed them but his Great Granny got three.

The rest of Christmas has been a bit of a blur but it has been lovely having the three of us at home and not having to go to one single appointment. It made me realise that I am definitely not going to do more than two a week. At the very most I only want one a week so come the new year, the foot will go down firmly.

We had some more laughing from Zack. Today in fact. Dan was on his way out in the morning and said that Zack wasn't giving him any smiles when all of sudden big smile and a gggghhhhhhhh. Oh. So I started to rub Zack's hand again (it's a new thing we found he likes) more ggggghhhh so I shouted for Dan and he actually heard and saw the laugh. Zack laughed quite a few times and I am so glad Dan caught it. Here's to lots more giggles in the New Year.