They also suggested feeding him slowly over-night

Another busy week. Can't remember half the things we have done but it's been busy.


We met with the gastro doc and full feeding team at Alder Hey. To be honest we didn't really get much further other than the suggestion of putting Zack back on his reflux meds. He prescribed a new one instead of the Losec so we don't have to mess about dissolving medicines that won't go down tubes (another story). They also suggested feeding him slowly over-night. Other than this and trying out different milks the only other option was on operation called a fundoplication, which in simple terms means that they tie the stomach inside to prevent vomiting.


The Dr. wasn't recommending this and the feeling we got that it was something he didn't want to do as we might end up with a child that just wretches a lot. I know for other parents it has worked well for their child but I think for now we are going to continue down this path of the meds and the slow feeding.


We have given it a go for two nights so far. Oh, it's so not good for my sleep. Zack has woken twice in the night to puke, usually about 5am. The problem is once he is up then, he's awake and won't go back to sleep, worse still he wants you to get up so that you can chat to him. And if you don't he just pummels your back with his arms or legs which amazingly stretch like Inspector flippin Gadgets.


We said we would give it a week of trying this technique. If it doesn't work I  am going back to the old pattern and maybe it's just something we will have to live with. Apparently it is all to do with muscle tone, Zack's internal muscle tone isn't strong enough to hold down his food, quite common in children with CP.
Zack has also not put weight on and may have lost a little. Will be asking the dietician for something I can add to the milk for extra calories as there is no way he will tolerate more liquid.


What else? Oh yes, Zack went drumming on Saturday morning. Yep, our friends at Families United organised a man to come along to the Saturday Fun Club and bring with him a load of different drums. The Pants loved it, he loved listening more than playing, but it was a really good session, plus we met some more families which is always a good thing.

I am still ticking the same yes he can't do that on his own boxes.

First things, Zack baked. 

I ate the cakes! Delicious.

On to more important things.....


Zack and I went to check out some wheels the other day. You see he has a lovely Quinny pram that he doesn't much like any more and a really cheap stroller that he loves but doesn't support him very well. He tends to end up leaning to one side in it, so we prop him up with some rolled up blankets which isn't a good look for such a cool little dude. 


We went to visit the good old NHS Wheelchair Services and after being kept waiting for half an hour we met with two very pleasant physios one who cuddled Zack a lot and told him what lovely hair he had and another who looked through a catalogue (Zack decided he'd do a big spit cough in his face, well you should pay more attention to him.) 


It was decided that a Tom Cross Buggy would be best for Zack. I asked if there was a choice or if I could put some pennies towards one. They advised me that whilst I could as they offer a voucher scheme, it might be best to wait a bit as Zack is still little and growing. I could end up wasting my money on something that might not be of any use to him in a years time. Whereas if they get it for me and he doesn't like it, then I haven't lost any money. Also if anything goes wrong with it then all the repairs are done at the offices. 


Here's a pic of one (scroll down until you get to Tom Cross Stroller), the bits of padding and support can be taken away depending on what the child needs, for instance Zack won't need a middle pummel bit. 




Tom Cross Stroller



We just have to wait for six to eight weeks until it arrives. I am hoping Zack will like it as it will offer him much better support and perhaps mean we can go out for longer walks too.


After that appointment we dashed over to a physio session. All the stretching and rolling about on a gym ball meant that Zack decided to throw up a bit of food on the physio and mat. Well he was doing a lot of lying on his tummy. 


Talking of this puking, the new food we are on is finally going okay. He is still sick but the quantity is a lot less. I have stopped all his reflux meds as they were not making one dot of difference and have finally got an appointment to see the gastroenterologist at Alder Hey. I am hoping we can try something to stop the sickness and to get to the bottom of why it all got so bad after he was ill.




I am having to fill in Zack's Disability Living Allowance form again. We have to do this every year and one year on I am still ticking the same yes he can't do that on his own boxes. If you dwell on the fact that in the eyes of the DLA not much has changed it's pretty depressing reading. But then they don't have boxes for the fact that his vision has improved, his hearing has improved, he smiles and laughs with us, he likes to stand up in his standing frame, he can tell us that he wants us to carry on playing the same game. The form is just interested in the basics, movement, care, illness. Still if it means he can get some financial support that will help towards equipment or therapy then I can fill the form in without sliding into mild depression.


One last thing, Zack has become a right stroppy bum over the past couple of weeks. We can't work out whether its his teeth, his tummy, or if he just wants to be constantly entertained. One things for sure this boy can cry like no other baby. It's almost as though we have been spoilt with a child that's been perfect for a year and half and now he's decided to show us how temperamental children can be. In some ways it's good, it's good that he knows what he wants, it's good that he is becoming so self aware and a little bit frustrated. It's not so good for my ears or my back (he likes to be carried round the house, it's the only thing that will shut him up).


Oh and finally, finally. Zack went to his first wedding at the weekend. He just went to the church bit, where he then fell asleep throughout the service, woke up at the end and then decided to cry all the way to his nan and grandad's house. Still he looked nice. 

I decided not to take him to the whole day that would have just annoyed him even more. There were a lot of young families there and they had their children sat at the table, Zack could have come too if we wanted but it's just a bit tough on your own. Daddy was best man you see. Sometimes I wish it was easier to take him to places on my own and that he could experience things as other children do but what's the use in thinking that it doesn't change the situation. I still have the coolest son ever.........no one can top his hair or his eyelashes or the fact that he always smiles at me in the morning. But most of all I love him just the way he is plus I got to enjoy a lovely meal  without him sat on my knee. 


Here's a pic of him with his daddy.

And one of him working his Amish look...

Until next time so long readers.

I swear if he could stick two fingers up he would have done

Today Zack went for another check up on his eyes. We first visited the eye lady who holds black and white paddles in front of Zack. She had a student with her and told him how fantastic Zack was doing and how he really responds at playgroup etc. 


Zack took it upon himself to completely ignore her and the black and white paddles, in fact, he even did a couple of yawns to show how bored he was, not very impressive. She put the drops in his eyes that enlarge his pupils, he really didn't like that. 




We went back into the waiting room to wait for the eye doctor who actually looks behind his eyes. This time when we went back in he purposely tried to avoid looking anywhere but her shiny light. In fact they thought he was very clever at all his avoidance techniques. 


She said that it's difficult to say what he can see but his visual impairment is cortical meaning that there is nothing wrong with his eyes it's just that the messages are not getting to the right place via his brain. She asked if I wanted Zack to be on the visual impairment register. They explained that it means it will help to ensure that he gets all the support he needs, especially with regards to school. Paddle waving lady also mentioned she thinks that you can get your TV license half price. Well where do I sign up then?


That wasn't really why I signed up, I did it because if it means it makes it easier for us to get him the help he needs or into the right school then that's great.


So now Zack is registered blind. However, he was taking the mick that day, as soon as we had finished I picked him up and over my shoulder he opened his eyes wide and looked at them all. They all stood there and said oh well look at him now he can do it when he wants to. And with that he left the room and smiled at them. I swear if he could stick two fingers up he would have done.


What's more when his dad came home he went over to say hello to him and didn't say anything just looked at Zack and smiled. Zack recognised him and smiled back. So much for the register!

You get a photo taken

Well Zack went to get his feet measured at the weekend and ended up with his first pair of shoes. 


We needed to get his feet measured for some Piedro boots which he might need to wear when he is in his standing frame. What we weren't prepared for is the excitement of the first pair of shoe buying. The nice lady in well known shoe shop which shall be not be named ( no free plugs here, ha! as if I have a million readers) did the measuring. Three and a half H he is and nice lady brought out a selection of shoes to try.

We picked him some cute ones and then she suddenly appeared with a camera. Apparently, when it's your first shoes you get a photo taken and it's then popped on a card saying first shoes. The Pants looks sharp as a button on it, Dan looks in shock!  I think the shock may be at the price of the new shoes that I seem to easily be purchasing. "They cost more than mine!" he commented, "Oh come on" I said, "they're his first shoes, look he has a picture." The Pants and I were very excited about the whole thing, Dan was still wondering how much wear he would get out of the nice shoes. 


Oh whatever, look, here they are.....very cute. (Also note my scummy foot)

As promised here are some pictures of Zack in his standing frame. Notice, standing in new shoes! 

This is my 100th post. I feel that there should be a fanfare or trumpets or at least a party popper. Go on stop reading and throw a streamer.

Zack's Christening

What a lovely day we all had. Granted the first part was spent hoping Zack didn't puke up over his gorgeous outfit or the Vicar. He managed a good cough in my face though, had hiccups all the way through the service, but all in all he did brilliantly.

The church was small and intimate and it was lovely to share this day with all our family and friends. Zack received so many wonderful cards and gifts I was overwhelmed by the generosity and kindness of people.  A huge thank you to everyone. 

The get together afterwards went down well and I was so pleased with my boy for  being so good.  He was past about a lot and he didn't cry once, plus he wasn't his usual self as he had been out of sorts for a few days.

Towards the end he did crash out and I think the picture below says it all.....

Baptism......job done.

I knew in my heart he wouldn't leave me

Tomorrow Zack is being Christened for the second time in his life.

The first time was done in a cloud of despair and failing hope. He was only twelve hours old. Doctors told us they didn't think the signs were very good. In my morphine hazed head I didn't want him to leave us without being baptised.

I was wheeled up to his incubator, they put up a blind to hide us away from the eyes of other parents. They will have heard the desperate baptism though, knowing why we were doing it. It was over within minutes and I knew in my heart he wouldn't leave me.

So tomorrow we do it right. How it should have been from the start, with friends and family. In a church, at a font and with hope.

The Pants is oblivious to the whole thing and has been having an off day today intermingled with puking. Hope he doesn't throw up in the holy water. That would be very rude.

And of course he aspirated

We've had a busy week. This will be a long post, stay with me if you can.

New Speech Therapist.

Thanks to Cerebra, that fabulous charity for brain injured children, we have been given £500 in vouchers to spend with a private speech therapist. After a bit of searching we have found a lovely lady who is going to help us with Zack's communication skills.

She came round on Saturday for an assessment. We went through all the of Zack's little ways that he communicates now, how he anticipates certain games, how he laughs in amusement at things, how he shouts at us with intention when he doesn't want t go to bed. All good building blocks to start off with.

Dan was explaining how Zack doesn't like his nose to be pinched and usually pushes you away with his hand. Speech therapist tested the theory out. Zack made his daddy look stupid as he smiled at the nice lady as she pinched his nose. Twice.

Oh that wasn't all, it seems he took a real shine to her. He was playing in his little room and we pulled him out so she could take a closer look at him. She took one of his hands and shook it whilst saying the words "Shake, shake, shake." Well, that was it. Very, very funny. She then took his other hand as he lifted it up and shook them both together. Ohhhhh absolutely hysterical. She kept dropping one of his arms to see if he would lift it up again to continue the game, which he did. Several times. She explained that this could be him just reacting without realisation and we are teaching him what it is so that he does it again. In this instance the shakey shake game. Dan and I think he knew exactly what he was doing and was doing so on purpose in order to carry on his flirtation with his new best friend.

Favourite teacher is now coming back for a therapy session with lots of activities for Zack and I to do. I am sure he can't wait. The tart.



Videofluroscopy - so not a good day.

We took Zack for his videofluroscopy on Monday. In a word, it was terrible. The test was to see where the food is going when Zack eats orally, to see if it is going to his stomach or if he is aspirating and allowing food to go into his lungs.

When we got into the room we were told he would have to be seated into a tumbleform chair. I knew as soon as I saw it, he would hate it. The chair is quite far back and positioned a bit like a car seat.  I explained we usually feed him sat on a knee, but we were willing to give this a go for the purpose of the test. I put him in the seat, and what was most heartbreaking of all was he gave the SALT such a beautiful, trusting smile. Poor Zack.

His dad fed him the first two bits of food which he swallowed safely. But he was getting agitated in the chair, Dan asked if he could sit him on his knee. They told him to sit him with his back pressed on Dan's chest. One therapist was holding Zack's head up and another was spooning large blobs of nasty stuff into his mouth. And all my baby was doing was sitting there staring at these five people in front of him completely bewildered by the whole thing. He wasn't even concentrating on what was happening, food was literally falling out of his mouth. And of course he aspirated. So they stopped the test.

I did make a point of how I thought it was confusing and unfair as he is fine at home when we feed him. He looks at us, we do small spoonfuls and I wait until I hear a swallow. The whole process during the test was unnatural and upsetting. Needless to say we are now in limbo as to what to do about his feeding so have an appointment with the SALT on Monday to discuss everything. I want to carry on trying with him, but at the same time I don't want to put him in danger of aspirating and causing him to get very poorly with a a chest infection. By the way Zack so far has never been in hospital with a chest infection caused by aspiration therefore we must be doing something right.


The great Switcheroo

And with the downs came the ups. Zack's physio and his vision teacher paid a visit this week to take a look at Zack in his standing frame. The vision teacher brought a long a switch and adaptor for us to try.

The switch is a big round button that is connected to a box. The box is then connected to a piece of equipment, in this instance it was a small fan. Every time the button is pressed the fan comes on, teaching the child cause and effect.

I wasn't holding out much hope that Zack would get this but boy, did he prove me wrong. Once the teacher showed him what to do he really tried his best to move his arm and hit the switch. He did it consecutively three times. At one point he moved it with one hand over to the other, he even tried reaching out with two fingers to it. I was amazed. I couldn't really believe it. I turned to his teacher and said is he really doing this. "Yes" she said.  "Oh I have no doubt how aware of everything he is, he'll get bored of this quite quickly. We can work up to having three or four switches that make different things happen."

Eh? Hang on a second, are you sure? But she seems confident and he did love the fan when it came on. So now mummy is tracking down some switch toys to borrow, rent or buy.

But after such a crappy start I was so proud of how he got it straight off the bat. Pants you really are a clever little cookie.

Zack is definitely an under responsive child

Zack went to play group on Monday. They had a seaside/beach theme. Zack wasn't too impressed with the sand or the stones or the fact that he sat in a chair and couldn't reach the table. It was quite busy with some new children and parents. 


His physio came in for a visit which he gratefully received by leaving a bit of spit/puke on her hand. Well, she had been moving him about and he just wasn't in the mood for it. As usual Zack was more interested in scanning the room and taking in the situation rather that playing with any toys. He was particularly interested in some young dad who had brought his son along. Not sure why but he wouldn't stop looking at him. Perhaps it was the shellsuit he was wearing, the dad that is, not Zack.


Zack wasn't that responsive in the playgroup, he seemed to be having one of his switched off days. He has them from time to time. It used to bother me that not every day was one filled with him taking things in and responding but now I understand that for Zack some days are just off days or duvet days. When he's like that we just do nice things like cuddles and sleeping.


After the playgroup we had a dietician appointment. Zack, amazingly has grown 4cm in six weeks yet not really gained any weight. The dietician (a new lady the other one has disappeared) isn't concerned as he is growing so we are going to see what he is like in five weeks time. She suggested that because he was poorly a month or so ago he may have lost weight then so it is better to wait and see how he is in a few weeks and then make a decision as to calorie in-take. I personally think we should have increased it a little but I am willing to wait and see.


I went to a seminar today about sensory integration. It wasn't bad, I came away with a good understanding of what it's all about but I would have liked more information on what type of things you can do for your child. However I did clarify that Zack is definitely an under responsive child. That is, he needs a lot of forceful stimuli to get through to him. Some children are very over-responsive and the slightest thing will set them off and make them highly anxious. Zack is the opposite, which is why he likes loud noises, rubbing his arms and legs, rough and tumble, jigging up and down. I think they key is to just choose one sensory input, for example, his hearing and make a huge increase in the stimulation you give in this area. If you included all the other sensory areas at the same time, this would just over-load him and he would find it too confusing and would be unable to comprehend what was going on.


I also discovered how important vestibular activity is (movement and body awareness in space) as it is strongly linked to visual and auditory pathways. I guess this means more swinging in the garden for the Pants.


Had a chat with the epilepsy nurse today about Zack getting this new medication. He had a day or two with increased seizures, yet today he has only had a few. As it is up and down at the moment we agreed that I will keep a diary of them over the rest of this week and call her on Monday to discuss it further. I think if they remain increased then we will definitely be giving him the new drug. 


Oh and finally not sure if I have mentioned this previously but Zack has two teeth popping through. At bloody last. Two little ones on the bottom. They didn't half take their time, mind you, Zack takes his time with everything but then what's the rush? He has all the time in the world.

The pep talk worked

Zack has a standing frame. I have been pestering our physio for one for a while as it seemed like Zack was enjoying pushing himself up on his legs more and more.


Finally one arrived from a magical place called Stores. I am delighted to say it came in a charming bright yellow colour and clashes beautifully with his wonderful orange sunbeam chair. Why can't manufacturers make special needs equipment in tasteful fabrics do they think everyone's house is painted bright orange (apologies if your house is painted bright orange, but seriously, you should know better.)


Yes, it arrived, it was a bit grubby so I cleaned it up. I went out for a bit. I came back and Dan told me the physio had called to say it should have been delivered to the Child Development Centre and not our house as she wanted to try Zack in it first. She told us not to try him in it and hang on until Monday for our appointment. Okay I thought, I'll wait but it isn't leaving the house. Ever.


Monday came and with it the Physio. We tried Zack in the frame and there he stood, arms out front, head up, looking at his toys. The physio was both impressed and surprised. We tried him on three seperate occasions in the frame and he really liked it. The physio thought he wasn't going to take to it and might get a bit stressed about it all but no he was one happy little boy. Zack got lots of well done comments and clever boy statements, I was very proud. I also knew he would like it. Plus I had a word with him the night before and told him to not let me down, this is a team effort and he needs to put in a bit of work otherwise we aren't going to get to keep our magic yellow standing frame. The pep talk worked.


Will post some pictures of him in it soon. I agreed with the physio that I would just try him in it for five minutes a day so that he can build up his tolerance. The frame will help him to bear weight through his legs, hold his head up and strengthen his back and chest. 


Parents Views


Warrington Council have set up a Parent and Carers forum as part of Aiming High for Children with Disabilities. I went along to one of the forums last night and was astounded at the lack of representation of parents with children who have multiple disabilities. All the parents that came along had children who were autistic or have aspergers and it seems that Warrington is very heavy in this area of disability. Another area I noted was that much of what had taken place so far in discussion or previous forums has centred around children from five upwards, there did not seem to be a lot going on for early years. I have put myself forward to become a parent representative. If the local council have been given a large sum of funding for this area then I want to ensure that at the very least I can be a voice for my child and other parents who have children with profound disabilities and complex needs. 

Zack went to Space

Zack went to Space. No, not space, space but Space a fantastic soft-play multi-sensory centre in Preston.

It was arranged via our lovely friends on the Special Kids in the UK forum so there was about four families who went along. There was a ball pool that Zack enjoyed sitting up in whilst taking in the light show on the walls, a sensory wall, water bed and bubble lamps. Best of all was a huge soft slide which I think I enjoyed more than Zack. Here take a look.


Space Videos




Dan decided to let Zack try and bounce up the big steps which he though was very amusing before flying down to the bottom, which I think he was a little unsure about.


We loved it there and I think that Warrington are converting an old Playbarn in Woolston into a sensory play centre so soon we shall have our very own little bit of Space.

I've sliced my stomach open

My mornings worth of phone calls are paying off. Already had one apology and an email so willing to back down a little and passively wait for some more positive outcomes.


Zack's daddy has been working from home. It isn't out of choice but it's quite odd as I have to ignore the fact that he is in the house and remember he's at work, otherwise I find myself wondering in with Zack and plonking him on his knee. 


Oh the reason for the home working. Well a week ago Dan had a small mountain bike accident. He impaled himself on the handle bar of his bike and slit his stomach open. I can hear the ewwwwwghhhhs already, you're lucky, I could show you all photographic evidence of his injury.


He phoned me from the ambulance, "Hi, I've had a slight accident." 


Me. "What kind of accident, are you okay?" 


"Well, I'm in an ambulance"


"An ambulance......oh God, what have you done?"


"I've sliced my stomach open. I'm okay though, they are just going to take me in to get it checked out."


"Oh no, which hospital?"


"Rochdale." 


"Rochdale. Oh God."


I don't know which was worse the injury or the thought of travelling down the M60.


Seems the toning down of the incident didn't stop with Dan. His two friends that were with him calmly told me he was fine and in good spirits. Then I got to the hospital to find Dan in A and E waiting to be taken down to theatre where they would cut him open to check for any internal damage. 


Fortunately he suffered no rupture to any internal organs and no damage to his bowel, which was partly coming out of his five inch wound. They stitched him all back up again and he spent five days in Rochdale hospital. The first two of which he was on Morphine and completely out of his head. I know this to be true as he called me at 7.15 am on Sunday to see how I was and then couldn't remember doing so a day later. Oh and he also spent that day phoning round suppliers for a protective body suit. Nothing like some hard hitting pain killers to give you that joie de vivre when chasing important biking equipment.


Granny and Grandad Gould where away on holiday and thankfully they didn't phone as I would have to have done by best fib to save them endless worry whilst on their jollies.


Nanny and Grandad Price had to come to the rescue and looked after the Pants whilst I went to visit Dan each evening. By the end of it they had worked out Zack's little whinge times and took no notice of them as they were quite short lived. In fact, I lived five days as a single parent and Zack was the best behaved little boy. Ever. No difficult bedtimes, slept right through and a good boy in the day. Thankfully all was good at home.


So now the patient is here. Apparently whilst I popped out yesterday a nurse appeared to take out his staples from his stomach. No appointment. No warning. There she was, complete with staple snippers. I asked if it was okay, he said it wasn't bad but didn't like being caught unawares. He said he needed to prepare. He had Zack, needed to change out of his pyjama top,  and have a pee. He told her she'd have to wait a second. I hope she didn't get all that information too. All I could picture was some woman sat downstairs with large metal cutters patiently waiting whilst Dan was running round upstairs like Goldie Hawn, simultaneously changing pyjama top and peeing.


Aaaaah it's just like Carry on Doctor round these here parts.