Having her nappy changed is more exciting than swimming

Made two attempts at family swimming. 


First attempt. Disabled swim session at a pool in Partington. The water was freezing. This lead to Scarlett shivering and being taken out within thirty seconds of getting in. Leaving Zack and Dan to enjoy a bit more swimming as The Pants wasn't arsed about cold water. 


Second attempt. Duckling swim session for pre-schoolers at Woolston. Really nice swimming pool. Asked to use the disabled changing facilities at the side of the teaching pool. All fantastic and lovely and lots of room. I was getting Zack and I ready. Dan was getting Scarlett and himself sorted out. Then Dan was getting Scarlett dressed again as he had forgotten his swimming shorts. 


Aqua Zack really enjoyed our swim. The water was very, very warm. And Dan sat upstairs with Scazlah watching. I think our family swim time is somewhat cursed. Reading this you would think aaah poor Scarlett she's not got to go swimming. Trust me. She really isn't that bothered about it. Having her nappy changed is more exciting than swimming. Zack on the other hand loved it.


The moral of this tale is, you must take responsibility at all times for bag packing. Do not assume that when you say, your swimming pants are downstairs that they will be collected and put in the bag. Here endeth the lesson.

I did say pigeon poo

We've all been off on a little jaunt to Sussex. After almost a year and half we returned to the Advance Centre to continue with the therapy that we started with Zack when he was a baby. So I don't bore you please look at my previous posts about this therapy if you want to understand what it's about.


Anyway, we had an extra companion this time, Scazzzahhhhhh. Double trouble on the journey down, which wasn't too bad as journey's go. I also booked us into an apartment for three nights to give us more space and a kitchen area to do his lordships blended diet. Well, you can't exactly mix up a shepherds pie concoction in a travel tavern, premier lodge....whatever those places are called.


Apartment was nice. Girl let us in, all looked good, she said goodbye, we settled in by shoving our backsides on the sofa and trying to get the TV to work. Dan came back five minutes later to say that he had dropped the keys down the lift shaft. Good start, quick call to nice lady and she told us just to get a spare set cut from the spare set we had. Right then, all unpacked, we notice we are attached to Asda. Perfect.  We are in the middle of Crawley town centre. Ooooh great (sarcastic great not as in yay great). We have six locks on the door leading into the apartment. Hmmmm, okay, well could just be overly cautious or we're going to die in Crawley. I don't want to die in Crawley. I needn't have worried it was all quite nice actually. Apart from the fact that the cleaners had left the windows open and the pigeons had shat all over the insides of them and it hadn't been cleaned. Go me cleaning and disinfecting window sills. Just like a home from home.


The day we left I mentioned it to the girl who tutted and said she's told the cleaners loads of times not to do that (by that I mean leave the windows open not poo on the window sills). After we left I got in the car turned to Dan and said I did say pigeon poo didn't I and not the words there was pidgeon shit all over the window sill. I still can't be sure of my correct phrasing. 


Dan said, "How come bird crap is somehow less offensive than dog shit?" "What are you on about?" I asked him. "Well, if you told her that there was dog shit all over the window you would have gone absolutely mental over it. But bird poo, it's all okay."


He does make a good point.


So the apartment aside the therapy went well and we managed to concentrate on picking it all up whist minding two children. Zack wasn't really interested in it at all, in fact he was having a three day off week. Scarlett had a fan club. A lovely little boy who would come in each afternoon. Run over too her and shout "Hellllloooo little baaaaby." I think he was autistic. I let him have a cuddle with Scarlett, he was very good with her, until he covered her eyes with his hands. She wasn't that bothered by it, she just tried to bite his arm instead.


Whilst we were away Scazlah received her first DVD. Yep. Mickey flippin Mouse Clubhouse was purchased to keep her entertained in the pigeon poo flat. She also used Zack's little floor seat for some extra good T.V watching.

Zack did some extra good sitting.

Slept in his own room. Had his mum get in bed with him until he fell asleep. This has since lead to unasseptable behaviour (I know it's spelt unacceptable but I like to spell it as Super Nanny phonetically pronounces it), ahem, yes, unasseptable behaviour at bedtime. Bringing us back to square one with bedtime fights again. I gave in a couple of times and let him fall asleep on me. Dan caught me and asked me what was occurring, I lied and said he just fell asleep when I read to him. He knows I lied. I don't care. He was very cuddly cute.






So far we've managed to do the therapy almost every day. And Zack has fought bedtime almost every day. Reasonable success and a pigeon poo free home equals good times.

Surprise, surprise he can hear.

Eye. Eye. Hear. Hear.


Zack's had them both checked out. He went to see his favourite eye lady for some black and white paddle waving. You have to give it to the young man he was on form. Full of smiles and very cheeky. Eye lady was so pleased with him and his behaviour that she said it had made her afternoon. She did the usual showing him a light, showing him some paddles to check his tracking etc. He did do some following and then decided not to bother. He decided to check her out by coyly looking round and peeping at her, smiling then turning away. 


Upshot of it all was that she thinks he knows exactly what to do to be able to use what vision he has, he just sometimes chooses not to. Whether that's because it is hard or whether that's because he can't be bothered (I  think it's the latter excuse) is really down to him. As I had thought, his vision is variable. Some days  it's good, other days it's not so good. I also confirmed with her that his right eye is much stronger than his left and we discussed the use of a patch. At this point in time we both agreed that to use one now may take away what good vision he's got, we may rethink the use of them at a later stage. Shame. I had a whole pirate outfit planned for Zack's patch.


Hearing got checked out too. Oh. Surprise, surprise he can hear. You don't say. He still has his glue ear which is affecting his hearing but he should grow out of that by about seven or eight years of age. The doctor (a new audiologist doctor who was very nice) did the newborn screening test on him again. The one which they click little sounds into their ears. I remember when Zack had it done and failed it. I remember when Scarlett had it done and passed. We were told that she wouldn't need to have it checked again until she goes to school. Both Dan and I looked at each other in surprise we were kind of used to not good news when our children have medical tests. 


Anyway, this time he passed his newborn clickety test. Well, on his right side anyway. The left side had a lot of background noise so wasn't that conclusive. I asked why his hearing has changed and she suggested that her thoughts were that the whole problem with his hearing has been the glue ear. There is nothing wrong with his ear drum, or any other ear bits and he doesn't have an auditory sensory processing problem.  Woohooo good news for Zack. The advice was to face him when talking to him and to keep background noise to a minimum.  I have known all this for ages. I have to creep about when he is in bed as one squeak of the floor board and he wakes up and starts shouting.


The past few months have been really busy. Scarlett is starting to want more of my time and just today I realised how good Zack has become, how he is growing up. I remember when we first brought her home and we had a couple of months of him not wanting to be put down on his own, wanted all my attention. Well now, he is so good if you sit him in his chair, or leave him on the floor with toys, or in his standing frame. He has the patience of a saint. I think he has accepted that Scarlett needs more attention and he just waits his turn. 


Scarlett loves her brother. If you leave them alone together on the bed and go out of the room I can hear her chatting to him. I'll come back in and she has turned over on to her side to face him, has hold of his hand and is gently cooing at him. If someone else she doesn't know touches him or if we play some rough and tumble with him, she watches him like a hawk, sometimes even gets upset. I am amazed at how she is already forming such a protective relationship with him. He on the other hand, puts up with her occasional hair pull or poke in the eye. He does get kicked in the body a lot by her. In return when he goes to touch her he tries very hard to control his arm so as not to be rough. And if they have a cuddle he responds with a massive grin. 


God help him when she finally crawls. Might spur him on to find his legs and get out her way. Either that or he better start saving up for a power chair.

He slept through until the morning. Bliss.

Zack's ability to switch on and interact has a lot to do with the amount of sleep he has during the night. 


As you avid readers will know we have huge problems with Zack sleeping and now, well we got to a stage were we said enough was enough. No more picking him up, no matter what time he stays awake until.


And we decided to go hardcore on him, we put him to bed and said whatever he does we do not pick him up and cuddle him to sleep. He stayed awake until 4am the first morning but I didn't given in, nope I stayed strong and he eventually gave in to sleep. We got him up at the usual time of 7am so the poor little man had only three hours of sleep. That night he went to bed at the same time, followed the same routine and was asleep by 8pm. He slept through until the morning. Bliss.


We have been following this regime now for about two weeks. He doesn't always fall asleep at 8pm each night, sometimes we have 1ams or 2.30ams but we still do not give in. He isn't screaming the place down, just moaning, we go in and pat him on the back every twenty minutes or so until we don't hear much from him. Then we know he's gone to sleep. 


The big difference is if he has had a good nights sleep he is brilliant the next day. He's so alert, smiley, happy, and very interactive. The other day he had a great nights sleep and was in a wonderful mood. So much so he didn't stop laughing all day. He was even making different noises and playing games. Simple games. Where I would go out of our bedroom, he would pretend to cry then I would go in saying "Did you shout me?" to which he would laugh hysterically and even try and make a mmmmaaa noise. It was the best day ever. I love it when he's like this as that is the Zack I know. The cheeky one, the funny one, the sociable Zack. 


I think the other thing that's made a big difference is his epilepsy medicine is making an effect.  He isn't having as many seizures, probably about 3 to 5 a day, which is a difference to what he was doing before which was around 15 - 20 a day. 


At the moment things are pretty good. Stable and progressing. This is where we like to be and what I hope will continue. 

Best day ever.

The other day I think Zack had his best day ever!


He woke up in a lovely mood, had a nice breakfast consisting of one yoghurt, one bananna, one weetabix, 14 almonds and some milk.


Got dressed in his summer white trousers. He looked all Miami Vice (even wore his flops, that's flip-flops to you and me).


Then he went off to see two of his little friends for a play-date. I am sure if their mummy is reading this blog she won't mind me posting about it. They are two gorgeous, lovely little boys, the same age as Zack and I think that they are so wonderful with him. 


Zack was lying on the grass happy as anything and one of the boys walked by Zack and he just grinned, in fact he spent most of the morning grinning. He had a go on their trampoline and loved being bounced up and down. He watched Mickey Mouse Clubhouse with them, smiled through that, stroked their doggy. He loved it all. And the sweetest thing was when the boys were playing on their little trucks that they sit on and push round they even brought Zack one over to play on. 


This is all very interesting to me because I haven't really seen Zack react to children like our little mates. He really loves being with others and it was great to see him so happy and relaxed. 


Then we came home. Had a spot of lunch and played in the garden until the early evening.


Later we all went for a long walk and Zack went in his Tom Cross Stroller. Amazingly he loved it and didn't moan at all. 


Here's a picture of Zack relaxing after his best day ever.

Now the bad news. Best day ever ended when the Pants wanted to carry on best day ever until 3am. Yep. 3am. That's when he called time on it and finally went to sleep. Little git. Made him get up at 7am though. He is presently asleep in bed and has been since 8.30pm. Mwahahahahaha. Sucker.

Class sizes were good

We checked out another school for Zack. This one we had heard mixed reports about so I wasn't holding out much hope, neither was Dan.


Well, well, well very pleasantly surprised. It was really nice, not too big, not too small. They answered all my questions and gave an answer to everything that I asked. Alleviating my fears and worries. Class sizes were good, they viewed communication as really important to all children. And they are updating parts of the school to help accommodate children with visual impairments. 


Even Zack liked it. It felt right. So now we have two schools to choose from and just one more to look at. The decision on where he goes is still tough and I have to consider mainstream school. But come September, he's off to nursery, I'll get through that first. I am sure there will be tears. Mine probably, not his.


Small Update


Zack continues with his conductive education. Continues to dislike it but did do some pushing through his legs when standing and when in a crawl position moved his hand forward and then his knee. Small steps but progress none-the-less.


His seizures are coming down a little with the increase in medication. As we were increasing the dosage I did notice a slight change in Zack. He just didn't seem himself I couldn't quite put my finger on it but he wasn't right. Mind you he had also been ill on and off with a cold or cough or vomity virus thing. He seems back on track now so perhaps the sudden increase just threw him out of kilter a bit. 


Sleeping. Well, sleeping is errrrm here and there. We sometimes have a good week of reasonable bed times and then we have a series of bad nights. The doctor said that if we have three bad nights in a row to give him some chloral hydrate which is a sedative. So this is what we have done tonight and bingo fast asleep. We are hoping that this will give him a good nights sleep, he will feel better in the morning and we can get him back into his rhythm again. That's the plan. 


Having Scarlett has lead me to approach feeding Zack again. I am weaning Scazzzah we are currently trying apple, bananna and baby rice. Whilst she is sat in her high chair I pop Zack in his sunbeam chair. Whatever she tries he tries. And do you know what? He is having a good go. The other day he had pureed apple and ate about four spoonfuls. I just think if he has a go he has a go if he doesn't want to or it causes him distress then no bother we stop. No stress.


And that's were we are all up to. Think I need another holiday.

We left at two in the morning

Zack's been on his jollies. A staycation in Cornwall, Mullion to be exact. This time he had a little companion, his sister. Not sure if he was too impressed at sharing his vacation time with one so young. 


Journey down there wasn't too bad and both children were quite well behaved. The Pants decided that a day of travelling and a poorly tummy would keep us local on our first day. So we had a nice stroll around Mullion and some lunch at a lovely pub. 


Zack also slept in his own big boy bed for the first time. No travel cot. Scarlett had stolen that so he was in a room on his own. This meant we had two bad nights of getting him to sleep. Mind you it didn't help that the flipping Naval air base is right near by and they decide to take out the massive search and rescue helicopters for a midnight flight until 2.30 am. Or the fact that when it rains it throws it down and you feel like someone is tipping a tonne of uncooked rice on the roof.  Apart from that Scarlett and Dan were the only ones who slept well.


We took them both to the Eden Project on the Wednesday. It was amazing. Apart from the sheer scope of the eco conservation biomes, the biggest conservatories in the world, it is home to an indoor Rainforest and Mediterranean gardens with their own specific climate control. The Biome containing the Rainforest was humid and hot. I quite liked it, Zack loved it and Scarlett fell asleep. 


"I think I could live in the Rainforest" I said to Dan. "Really, and what's Zack going to do?" 


"Well, he seems to like it and we could live in that hut over there, plus there's a cool room so if we get too hot we can sit in there for a bit." I thought I looked like I was on safari in my khaki pants and vest top. Dan said I just looked sweaty, like a sweaty David Attenborough. I contemplated leaving Dan for the actual Rainforest but then decided that I don't like snakes, ants or spiders.


The best bit for Zack was the land train (a.k.a tractor) that took you all the way up to the top of the centre. He loved it and probably was the best bit of his holiday. Scarlett just liked it all and was very happy all of the time.


I have to add at this point that the Eden Project is really accessible to those with a disability and I was extremely impressed with the facilities and helpful staff.  Whilst I am on the subject of pleasant people, Cornwall has an abundance of friendly welcoming folk. Everything is done with a smile, a bit of banter and nothing is too much trouble. Great holiday. Long way, but worth it.


The journey home wasn't too bad. We left at two in the morning. It was like we were on the run. Don't know who from, I mean I had already paid the caravan people. Still it was exciting for the first hour, then it just became a really, really, really long journey. 


Here are some photos from our trip. Enjoy.

Testing out my big boy bed

What's your problem? I is having a beer with my daddy

Rainforest. Zack's new home.

Knackered and asleep after visit to the Rainforest.

Hi mummy I is having a lovely time.

Errm excuse me I would like my breakfast now .

God, this holiday is brilliannnnt.

Do the furnishings clash with my pretty dress?

Happy Father's Day

Now I know there are lots of amazing, brilliant Daddies out there. But I think Zack and Scarlett have a Daddy like no other. And as it's Father's Day I just wanted to do a little blog about their Daddy. He pops up now and then in these blogs, usually with a humorous quip or a comedic moment but in the dark times he is our strength.


Zack's Daddy was with him at the very beginning of his life. When he was born and put into the incubator it was Dan who got to see him first. He was there when the medical team were trying to stop him fitting. It was Dan who sat with him and stayed with him throughout his first hours and it was Dan who went to him when I couldn't. I sometimes wonder if that bond between the two of them was what kept Zack with us. And I am forever thankful to him.


Sometimes it might seem like Zack prefers me. I do, after all, spend the most time with him and he is a mummy's boy. But Zack adores his Daddy and vice-versa. He is brilliant with him. And is often a voice of reason and logic when I sometimes leap over to panic mode. He is fantastic at doing all the horrid bits like taking him to get injections, or down to theatre when he has a General Anaesthetic even sleeping in hospital chairs when he has had to stay overnight. 


He is Zack's biggest protector and probably chief of his fan club. I think that if Zack could list the favourite things about his daddy it would go as follows:

1. I love it when my Daddy plays the Silly Bears tickle game.
2. I love it when my Daddy pretends I am on a car race track when I am in my standing frame
3. I love it when my Daddy plays rough and tumble with me.
4. I love it when my Daddy does my bath time.
5. I love it when my Daddy lets me cook with him.
6. Most of all I love it when my daddy and I get up on a Saturday and it's just us and we have our breakfast and watch Raising Hope. It used to be Eastbound but that's finished now and Mummy said the swearing wasn't suitable for my ears. 

And now there is Scarlett who funnily enough has now gone from begin Scazzzzzahhh to Scarly Bum. His Princess and the second lady who makes his eyes light up. The other being one of the Kardashians, not sure which though!!!!

So Happy Father's Day Daniel Gould. Thank you, our crazy, different, special family wouldn't be the same without you.

XXXX

oh yeah, you're all b@£%^*!s

Our second trip to Rainbow House and Zack was back in the classroom for his conductive education lesson.


This time he decided to pull out the big guns and moan throughout the whole process. At one point he was the only child moaning. He hated it. I think it is now known to him as Torture School. (It's not actually that bad he's just a bit of a whinger sometimes).


This time we decided to try some arm splints on Zack as he tends to keep his bent (arms that is, not splints). The splints wrap around his arm and keep them in a nice straight position. Oh dear, oh dear, oh dear. Cue extra moaning. 
On top of the crying he tried to go to sleep (another trick he uses to get out of things). Nope, wasn't getting out of it that easily, we did some crawling at that point, this woke him up. Again not happy.


When he was sat on his little chair at the table (very cute, reminds me of baby bear waiting for his porridge), he moaned, stopped and looked round at everyone. I think he was plotting how he could murder each one of us. Having forgotten he was crying, he started again as if to say, oh yes, I was protesting about something, what was it now, oh yeah, you're all b@£%^*!s.


Tell you what though, on the way home, not a peep from him. He sat with his arms straight all the way back (no splints, God I'm not that bad), didn't look at me once. I got him out of the car and he would not speak to me. Had his lunch and then went to sleep. 


Later, when he was back talking to everyone, he was really switched on, relaxed and as if to show off he kept his arms straight. Dan then got worried that he couldn't bend them any more. He can, Dan was just being ridiculous.


We have the splints to use at home so he gets used to them. I tried them today. He didn't mind, in fact when he has them on and is lying down his arms go up and out to the sides of him. You can do his overhead stretches very easily. I think he is getting a lot of sensory feedback from wearing them which is in turn making him realise where his arms are in relation to his body. 


Dan came in and saw them on him. Initial reaction was aaaaaah little man. Then it was, well, they are doing him some good aren't they? That's what we need, tough daddy.

He can't do it as quickly

Oh the differences in child development. Scarlett is making it abundantly clear how easy it is for children that don't have a brain that is moth eaten to develop along a normal path.


Sounds like a I am being incredibly cruel about Zack but they are the facts. You look at his MRI and it's patchy all over. Little bits of missing pieces where the cells have died. The injury that will affect him for the rest of his life. I can quite easily sit here and type this without getting emotional as it doesn't upset me. I can't change what happened, I can only accept what happened and live our lives with as much fun and happiness as is possible. I think we are doing a pretty good job at that. Zack is a happy little man.


However, it is wonderful to see Scarlett just carrying on developing as a baby should without much effort at all. And good for her, she is doing brilliantly. 


The other day I had her on the changing mat and I was playing with her legs I put her feet flat on the mat and she lifted her bum up and pushed herself backwards. I did it again and she repeated the same action. She loves this game. It makes her smile a lot. She waits for me to say Go and then she does a massive push. Easy. 14 weeks old and it's a piece of cake. 


Zack loves this game too. He waits until I say push, concentrates really hard and then pushes back with his legs. He can't lift his bum. He can't do it as quickly and he wasn't doing it when he was a baby. But he gets the same enjoyment out of it. He understands the concept. 


I suppose what I am saying is their differences highlight the struggle he has. But I don't sit their and think oh how sad for Zack it just isn't fair, why is life so unfair, why can't he be normal, I wish he was normal. Nope I think ah well, Zack is doing what he can in his own way and I don't think I can love him any more than I would if he could do what Scarlett does. I love them equally. And they are both fabulous. 

Zack went straight to sleep

I've been looking at getting Zack a sleep system. 


At night he tends to curl up in a foetal position and his hip rolls over to the side. He has always slept on his side at night and probably finds this position the most comfortable. It isn't helping his posture. Some children with Cerebral Palsy require sleep systems to put them into a position to make them more comfortable and to lesson any future damage that could be caused through their posture during sleep.


With this in mind the physio has organised some reps to bring out some sleep systems to look at. The first of which we saw today. It was Peacocks snoooooze system. Take a look at their PDF, if only to see the very, very creepy doll they use to demonstrate the system.


Snooooooze System



Basically then this one is a roll that goes around Zack and between his legs, along with a funny star shaped pillow. 


The rep demonstrated the system using not scary puppet, but scary Zack. 


As if to demonstrate how snuggy and comfy the system was Zack went straight to sleep. No moaning and crying (which he is doing at the moment in bed) but fast asleep. Not bad, not bad at all. Question is though when he is moving about at night and trying to get to sleep he may knock it all off so little unsure about that one. 


The rep left with his sleep system. Undeterred Zack continued to sleep whilst I chatted to the physio. 


Physio left. And Zack opened one eye and then woke up. I see, was this all just a con so he wouldn't have to do any physiotherapy? Sometimes I wonder if his avoidance techniques have gone to new levels.


I'll get him tomorrow, Conductive Education again. I can feel the pout forming already.