Yes SANTAAAAAAAAAAA complete with presents.

Tis the season for lots of parties, troll-la-la-la-lahhhhh la la laa laaaaah laaaaaaaaaaaaaah!!


Zack went to the first of three Xmas parties today. Yep, three. He's not even two years old and his social calendar can be likened to an A-list celebrity, well more like Z list but it's good to have a goal.


This one was at a rather nice hotel in Warrington and was organised by Families United. What can I say. It was brilliant. Lovely venue, gorgeous food for both adults and children. Children's entertainer and Santa.


Yes SANTAAAAAAAAAAA complete with presents. Oh and lets not forget the Mayor and Mrs Mayor. 


Zack had his new party outfit on and was looking very dapper. He started off the afternoon with a power nap whilst getting a PEG feed. Who needs to be awake to eat. After the twenty minute power nap, he woke up and looked in shock. I think he forgot that he was out and not at home. But it's okay, just change my bum and I will be ready to party.


He sang, or rather shook his musical instrument to some Christmas Carols. He met Santa and the Mayor and got a present, he even gave Santa a festive grin. He watched a puppet show, got bored with puppet show and decided to check out the other children. 


Finally he was kidnapped by another parent who wanted to meet him and have a cuddle. But what a brilliant afternoon. Oh well one down, two to go. Here's some pictures.

The Pants meets the Santa

He goes in for the present

OOOOOh what have we got dad?

Ho!Ho!Ho!

What's going on?

Oh hi dad, I got me some raffle tickets

He's just beaming

Zack has yet again managed to have a busier social life than myself. 


Wednesday morning meant an early get up for a spot of light Hydrotherapy. The sessions have been introduced by the wonderful ladies in the vision team (you know the ones that also run the play group for children with visual impairments.) Honestly they go beyond what they are meant to be doing and if it wasn't for them, we wouldn't have these much valued groups.


The hydrotherapy session was taking place at a special needs school in Warrington. They have a small pool there which children can use to get some extra therapy in very warm water. By the way it isn't just the water that's warm the whole blinking place is set to tropical heat weather. 


Zack and I arrived all bundled up having faced the windy, rainy weather outside to get changed in a changing room that was so hot I thought I was going to explode. One of the teachers took him to the pool and at first they laid him on a floaty mat. I knew he wouldn't like that as Zack likes to be upright in the water so he feels safe and secure. Sure enough grabby hands appeared, I suggested we put him in his swimming seat ring. Just a normal baby swim seat but Zack loves it. Once he was sat in his throne he could have quite happily floated around the pool for hours. Unfortunately a child can only stay in for twenty minutes due to the heat so having enjoyed his relaxing water therapy out we got, dressed and thrust once more into the great british autumn weather.  For once I was glad of the cold, Zack and I looked like beacons in that school.


This week Zack got fitted for some Piedro boots. These are to boots made to help support his ankles and feet when in his standing frame. Amazingly they also arrived this week so having been measured, fitted and tried on we are now the proud owner of some funky little shoes. Picture below.

On a secondary note to our visit for the shoe fitting. We had to go to the hospital for these appointments and normally it is an absolute bugger to find a parking spot. Well hold on, Zack now has his own special blue badge, therefore, when his chauffeur is driving (that's me), we can park in a disabled parking spot. Hallelujah. First appointment we parked right outside the door, second appointment, again, right outside the door. Wow, this badge thingy makes life really simple.




And to finish the week off on Saturday we took Zack to the Elisabeth Svendsen Trust It's a charity that specialises in providing donkey riding therapy for children with disabilities. They have a few centres across the UK and one in Manchester, which is where we found ourselves on Saturday morning. 


Dan took Zack in to the arena to meet his new friend, whose name I can't quite remember. Zack was the smallest child, youngest child and had the smallest donkey. At first his little legs couldn't fit over the saddle so he rode bare back, check out cowboy Zack.  The staff also gave him a supportive vest to wear to steady his posture, Zack that is not the Donkey, I mean it's not like the Pants is a hefty weight. 


I have never seen a child look so bewildered, he knew something was going on but he couldn't figure it out. Part way through the little session they took the vest off and he seemed to relax more. He had to ride his donkey around the arena and collect different colour rings then place the rings on a pole.


Then they ran a little with the donkeys. Zack loved this, his face lit up and even the teacher who was with him was saying, look at him, he's just beaming. He did nearly end up on the donkeys neck though but she didn't seem to mind. After it had all finished the lady leading the donkey said it was an excellent first ride, he had done brilliantly. 


What a fantastic charity, you can see how much all the children that take part gain from it and to think it's only down the road from us, we shall definitely go back again. But Zack nor his daddy will not be having a donkey of their own. No way, no donkeys in my back garden. They don't half make a noise.

Hey look at me

Took Zack to two play groups this week, the lucky boy. 


First one was the monthly group run by the vision specialist team. It was good, they had a bonfire theme but Zack was more interested in a little girl a year younger than him. She is very sweet but gets upset a bit as babies do, well he was fascinated by her crying. Wasn't interested in the fact he had a furry hat placed on his head or was shown a branch to represent the bonfire, nope, he was all about the ladies.


That same lady came along to play group number two run by one of the mummies from play group one (are you all keeping up).  Zack had the best day ever at this play group two, he loved it, he was smizing at everyone (smizing = smiling with his mouth and eyes, see Americas Next Top Model for reference). He even rolled over from his back to his sides, the little show off. 


At one point I put a little plastic frame over him that had toys dangling down. Toys, I don't need toys. Watch this, and he grabbed hold of the side and tried to pull himself up, all the while looking at his new little girl pal. If he could speak I'm sure he would say, hey look at me, look at meeee, look what I can do (in a Stewie Griffen voice, in my head that's what Zack sounds like). 


He was even a good boy in his car seat. What a delight.


Feeding is continuing to go well and I have now stopped giving him that horrid Infatrini Energy and no sick. Nope no sicky. It's fantastic. We still get a teeny bit here and there but over all it's a great improvement. We are now on three meals a day, two drinks of whole milk and a pump feed of just water at night. Amazing. He is even going to bed at around 8pm and sleeping through until 6.30am. Although I can't help but think that as I type this next week I will be saying oh God, what's with the waking in the night, or oh no the sickness is back. But for now, the Pants is just brilliant and amazing. 

The ipad

Perhaps the Pants might get one of these when he is older.....seems like they are a good tool for communication.

http://www.nytimes.com/2010/10/31/nyregion/31owen.html?_r=1

Strip just from the bottom half

What a hectic week. 


We went to collect Zack's new wheels, a Tom Cross Stroller from Wheelchair Services. It took a while for them to set it up as they had to make sure all the seating was set right for his measurements. 


The buggy is a special needs buggy aimed at supporting Zack in a better position and I have to admit once he was in it, he was extremely happy, sat upright, looking around at the world. He even smiled at us all. 


I on the other hand found it slightly upsetting. The buggy is bigger than I imagined and it was a bit of a shock to see him with a little chest strap on in this small chair surrounded by a big frame. When he is in it you know he is a child with a disability. It's hard to explain but seeing him in this type of chair makes it even more concrete that he does have additional needs. And I know he does and have accepted that he does but when it's as vivid and real as another piece of equipment in can be difficult to adjust to it.


Having said that I am now getting used to the chair. Here's a picture of him in it. See quite happy. Oh the last one was just before he decided to be a bit sick. 

We are going to test drive it this weekend. We need to purchase a hood and a rain cover for it before we can do winter adventures. 




We also went to see the Orthopaedic doctor at Alder Hey. He was really nice and had a good look at Zack to see how tight his tone was in his body. He said the likelihood is that if a child isn't sitting by two then it's unlikely they will walk. To be honest I have heard statements like this before and I take it with a pinch of salt. He's right Zack might not walk, then again, he might. He did say that he thinks he will probably be able to get around the house quite adequately but for his independence he will probably need a wheelchair. And if he can manage a power chair then we have to make sure his hands and thumbs don't get tight. Ha. Zack in a power chair I can see it now, he'd be zooming down the street up to no good. 


The doctor sent us for a hip x-ray. Dan took Zack in to the room. He came out ten minutes later, I asked if it all went okay. "Yep, fine" he replied, "The woman told me to put on a lead apron and strip just from the bottom half. I asked her if she meant me, she said no, just Zack." Dan continued to tell me that they just got his position right on the table and he decided to pee all over it, (Zack did, not Dan) the nurse said it happens all the time. Bet she loves her job. 


After the X-ray we went back to see the doctor. One out of two children with Cerebral Palsy usual have a problem with their hips and sockets because they aren't moving like a normal child should, so there bodies aren't being allowed to develop naturally. What you get are hip bones that aren't ground in properly to the socket. Zack's right hip is slightly on the edge so in order to stop it getting worse and dislocating they will consider doing botox injections so that the muscle has chance to move better and in effect move the hip socket into the correct position. 


The doctor showed us an x-ray of a six year old child who has similar conditions to Zack but has not been seen with regards to his hips. His was almost out of the socket and so he will need reconstructive surgery. I suppose by picking up on this now we could attempt to correct it. He also said that his standing frame and physio is good for him and to continue doing it. Oh and the other good thing was he hasn't got a curve in his back, he just slumps over a bit because of his lack of good head control. All babies start off curved and then pull up as they get stronger in the neck and back, Zack's curve may improve. It has so far and I think it will continue to do so. 


When we had finished the appointment we stopped in reception so I could put Zack's coat on. I looked down to see that his shoes where on the wrong feet. Yep, Dan had taken Zack in to get an X-ray and managed to get his shoes on incorrectly. I pointed it out. "Hmmm" Dan replied, "I thought they were hard to get on his feet." Poor child, what hope does he have of walking if his dad can't even get his shoe on the right way.


I am hoping that after this busy week we will calm down. In fact I said to Dan the other week I am not putting in any more appointments until after Christmas. Here's to the wind down.

Jealous me. Not much.

Right the thing is I put in all the hard graft with Zack. I do all his therapy, his physio, play games with him, take him to playgroups, take him for walks, show him things, read to him etc etc. I don't mind doing all of this, in fact I love it and I am very lucky to not have to go to work so that I can spend my time helping him. 


But, why, when his dad is out working hard to look after the pennies does he get rewarded with the good stuff. Yep. The other evening Zack decided that now would be a good time to show how he can roll from his back to his side. 


I have been trying to get him to roll from his back to side for ages. I didn't believe that he could do it. So Dan showed me or rather showed off at how he got Zack to roll. And the little bugger did it again, both sides. It's was brilliant and a huge step forward.


Oh and before that Zack was on his mat and Dan was chatting to him and Zack was giving him lots of smiles when he did an agoooo noise back. Right. Now you decide you'd like to chat with your daddy as well. Hmph.


Jealous me. Not much.


(Very proud of Zack though. The sod hasn't done any rolling for me since the other night may be he's saving sitting, walking and bloody talking for his favourite person, Daddy!)

Halloween II

I don't think Zack quite appreciated his choice of Halloween outfit this year. I think it's fabulous.


He went to the Halloween party at F.un club and had a lovely time. Here's some pictures before the party.

Why mummy, why?

Daddy, please don't take me out the house like this

Spider squats

Spider box

I hate you. And you have got your manky tea-towels in the shot, silly woman

I wonder if she' ll give me a sticker next time.

Have been continuing with the torture routine and Zack is now getting used to it which means less screaming and carrying on.  He is doing well but I still can't help but think that when I am doing his stretches he is deliberately not allowing me to move part of his arm or leg just to show he's the boss. 


Managed to get back to doing his Advance therapy which has been hindered due to his reflux. In fact have managed to do quite a bit thanks to having some home appointments rather than outside visits. 


We had the physio round this week and she has put in the recommendation for Zack to have some Piedro boots fitted to give him some more stability in his legs. She mentioned that he might be better having leg splints to keep his feet and legs in-line as they are turning out slightly. I am not so sure about them, not because it's more "extra" special needs equipment but I not sure I like the thought of his legs being held in a position all day by splints. However having spoken to other people whose children have splints it seems that they are a good thing and some wearers aren't bothered by them at all and actually stand better in them. For now I think we are going to try the boots and see how we get on.


Zack's new car seat has arrived. The Mini Carro. I sat him in it in the house as a trial run and he was very happy. I took him out in it in the car and he HATES it. Oh my lord I thought he was going to explode or have a heart attack. Still, he was a little better on the ride home and as usual I will persevere as it has to get better. His mood improved when I started singing to him, but how many renditions of the Wheels on the bloody Bus do I need to go through to stop him having a fit of rage in his expensive car seat. 


In defence of this seat I have to say it is much better than our other one, more supportive and comfortable for his highness.  Maybe he just hates cars. I think it's the one time I wish he could talk and tell me what the problem is, I am not giving up though, he will get better. Fingers crossed. Either that or I'll just have to use public transport. Oh the thought of it.


We had gone to the dentist in the new car seat. Dentist likes to see the children early so they get used to them (early in their lives that is, not early in the day). She was very gentle and had a little look in his mouth and feel of his gums. His teeth, all three and a bit of them, are fine. She told me to brush them twice a day and that she can feel the other bottom four coming through. And that was it, see her again in six months.  Don't know about getting him used to it but I think by the time we finish visiting I'll have gotten over my fear of dentists. I wonder if she' ll give me a sticker next time. They had a nice selection.

It looks like a torture video

We took Zack to Brainwave this week for some extra help with physio. The place itself is only down the road  so it made a change not having to drive hundreds of miles for some therapy. 

Errrm where are we again?

Oh God there is no escape.

Brainwave offers a tailored programme of physiotherapy and we went for a two day assessment. They put together a short programme of exercises for us to do at home with Zack and assessed where he was in terms of his development.


It was really good to have a physio and occupational therapist for two full days just with Zack. I say two full days, but young man decided that he would take two naps throughout the day. 


It became clear that Zack is completely unaware that the things at the end of his arms are his hands and that he can use these to his advantage. His head control was good but he has a lot of stiffness in his hips and is stiffer in his right side than his left. The exercises we have combine stretching with play. At first I was a little unsure as to why we were doing similar exercises that I do with our NHS physio but by the end of the second day everything was much clearer and I now understand why we are doing what we are doing and to what affect this may have on Zack. 


Now the boy on the other hand was not at all happy being put through his paces. The first half of the DVD shows him screaming and crying his way through the stretches, it looks like a torture video. He was crying because his body hadn't been put into these stretches before and they were uncomfortable. The second half of the DVD he was much happier although at one point we had to stop filming as he decided he wanted to have a sleep. 


Before we left we were given all the equipment we needed to complete the therapy which included a new gym ball that smells like cat litter and a foam wedge for his tummy time, which by the way he is very good at. 


The overall idea is that the therapy will help Zack to decrease his stiffness in his legs, begin to roll and move around on the floor and to play with his hands open. We go back in six months for an assessment and tweaks to the programme to take into account any changes.  


We've tried the programme twice at home, he still cries through the stretches but I've learnt to ignore them, after all it's for his benefit.


Next weekend is Halloween and boy have we got a great costume this year, but you'll all have to wait for the pictures. What a cruel parent I am.

He was fine, didn't even cry

Short update.


Zack has been to Rainbow Legacy House. It's in Chorley and they do Conductive Education sessions as well as run a fantastic nursery that caters for disabled and non-disabled children. 


The Pants went for an assessment there and whilst he moaned a bit at first by the end of the session he was smiling away. The conductor said that she thinks he would benefit from the sessions, unfortunately there isn't any space at the moment. So we wait.


We also took a look at the nursery which did look good so may be thinking of sending him there for a couple of days so that he can have his conductive education sessions in the morning and afternoons in the nursery. But I don't think this would be until next year and even then very part-time. 


Physiotherapy


He had a good physio session on Monday. Was quite smiley throughout and did a lot of work. The physio then checked him out in his standing frame and adjusted the height. (Must be his new diet making him grow). She also made the frame more upright so that he is having to work harder. Zack didn't mind at all and the physio was impressed at how good he is in his frame. She mentioned that he is holding his neck better which is a good thing. He gets a gold star for that day.


Finally, today his daddy took him for his MMR jab and booster. I am still a wimp when it comes to needles. I was expecting him to come back upset and moaning but no apparently he was fine, didn't even cry. Dan said he smiled after the first injection. That's my boy, tough little cookie. (Am surprised though, as sometimes he can be a right drama queen).

Goodnight Ozzy

We need to say goodbye to someone. One of our cats, Ozzy was hit and killed by a car on our road last week. This is the second cat we have lost on the road. It's not a busy road, a quiet road but every so often you get some idiots speeding down without a thought for animals or people walking their dogs. 


Ozzy was a wonderful cat, a real character, I love all our cats (we now have only two) but Ozzy was special, had him since he was six weeks old and I miss him dearly. He will always be in our hearts. 


Since Zack was born he took, shall we say an active interest in the new addition to our family. The active interest usually meant sleeping in every possible Zack related item, prams, strollers, his cot, on top of him. I always said his full name was Ozzy Noooooooo! 


Anyway I don't want to dwell, I just want to say goodbye, you went too soon and you will always be in my heart. 


Farewell to an amazing cat.