What a nasty man

Aaaaaaahhhh the joys of a holiday in a caravan. Cheap, cheerful, full of fun, exciting times when you are a six year old. Like you've fallen on hard times when you are a forty-something. 

Alas, that is where we spent five cosy days during the first week of the Easter holidays and we had a brilliant time. All shacked up together in a small plastic cabin and not one argument between us. 

We hired a rather nice adapted static caravan. Excellent ramp straight to the door, not so excellent flushed access from the ramp and over the threshold but better than lifting over several steps. Lots of room inside and a large bathroom with a shower seat.

It was during the evening of day one that Dan first pointed out the height of the sink and cooker or lack of it. Of course, adapted means everything is lower for wheelchair users. 

Beds were a thing of torture but bearable yet it allowed us to have an adventure and spend time together which we haven't been able to do for a while. 

As it turned out Zack was much happier at base camp than going on a tour of beautiful North Wales. 

We visited a few towns, which, whilst quaint in nature seemed to have not moved past 1959. And don't get me started on lack of internet facilities. Day two of my unplanned digital detox had reached fever pitch by my cries of "Why is there no wifi?" By day three I had learnt to accept my holiday life and was a much more relaxed human being. 

Swimming was a daily activity, adventure was a given and falling into a dress rehearsal for a musical was a fortunate event. 

Pottery was painted and a child's gambling habit brought to the forefront by a determined father to win at the Trolls grabber machine even if it left him destitute and penniless. We were never successful and probably twenty quid out of pocket. 

There was a lot of eating. A lot of eating. But most of all, a lot of laughter. 

We encountered back to the dark ages disability discrimination from a lady of a certain age in a tatty old shop. 

This equated to a stand off between her, Dan and Zack. She being of the mind that he was not getting down the corridor of tat and Dan specifically telling her he was and he will and by no means is his son being forced out of a shop. End result, said lady of age going back behind her counter and in a loud voice making the statement, "What a nasty man." 

Ding, dong, round two. Now I'm involved defending the 'nasty man' and trying to explain that it wasn't very nice to not try and make the shop a bit more accessible for people with disabilities. She didn't care, she worked there six days a week she told me. I walked away knowing you can't educate the ignorant.

All that didn't matter when we watched a show that included children who were on holiday, one of which had cerebral palsy like Zack. The staff working in the show (are they entertainers? well you know the type, theatrical, sing a lot) made every effort to include her and she had the most beautiful voice when it came to her line to sing. 

You can't always get equality, but it's there in between the dark, pushing through. 

Disability equality aside, our staycation was a massive lump of joy. These are our good days and our lucky days. And when you have a child like Zack you treasure them even more. 

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.

Disability is a strange concept to come to terms with.

Zack went to the dentist the other day. He has no weggies yet so he just sat in the waiting room with his daddy offering moral support to his mummy who was on the verge of running out of the waiting room. 


The anticipation of having a broken tooth removed via a cut made into my gum was a little unsetting. However, I remained brave and went and sat in the dentists chair. The dental nurse asked me how old Zack was. Oh, he's nearly one I replied to which she asked if he was walking yet. 


Now I could have quite easily said oh no, not yet, but I didn't, instead I said, no he isn't, he has cerebral palsy. When you tell people this the usual reaction is an oh and then nothing.......no questions, just an uncomfortable silence, which I usually fill in with a, but he's doing very well. This is usually to make the other person feel less uncomfortable. The thing is, I wish I could say, look it's okay, you can ask me what you like, don't be frightened about talking about it, it isn't tragic, I'm not going to get upset and most of all I am not disappointed, embarrassed, ashamed or even down about it, which is perhaps why I didn't just leave it at the no he can't quite walk yet answer. 


This little incident made me think that now Zack is getting bigger it is becoming more obvious that he is different to other children. You see no-one expects a young baby to be doing much, but now he is nearly one and you tell people his age, you can see them wondering why he isn't sitting up and joining in with the world. And because he looks so (and I am biased) perfect, I can also see them thinking well what's wrong with him, wanting to ask but being too polite to ask. 


Sometimes when we are carrying Zack he rests his head on our shoulder as he can't hold it up for a long time. He looks like he is sleeping so we get lots of aaaahs and oooh is he tired? In my head I am saying no he isn't bloody tired he can't lift his head up because he has brain damage and poor muscle control but he is trying his best, now sod off and just carry on with your shopping. In reality I just smile and say mmmmm he must be a little tired. 


Disability is a strange concept to come to terms with. It generates so many different feelings, a lot of them negative. People who are not affected by disability in their life I would guess find it uncomfortable. I was one of those people. I used to wonder how parents coped with children with severe disabilities and think I could never do that. I used to think that the people who choose to teach children and adults with special needs were amazing because I couldn't do that. I know differently now. I know the good and the bad. I understand that a lot of it is just fear that holds us back from understanding and fear that holds us back from asking the questions to the things we want to know but are too afraid to ask. 


It is the same with family and friends. Some have been fantastic and are very comfortable with everything and are not afraid to ask me or Dan questions about Zack and his condition. Others I know are unsure about whether it's okay to ask about him. To them I would say please don't be afraid to talk to us, he isn't any different to other children, he just has a few special extras. He's just a little boy who wants to experience the world the best he can. But for an hour and half on Monday morning it was in the dental waiting room, asleep, with a mummy who was working on not passing out in the dentist chair.

Zack has discovered the best place on earth

Friday didn't bring good news. We had a call from the doctor to tell us that the little episodes Zack was having are most probably seizures. As they weren't distressing him we decided between us to leave things until Monday when the doctor speaks to our consultant about it all. 

I was upset at hearing the results but I suppose it was inevitable, given Zack's very rough start, that he was not going to get away without suffering some form of epilepsy. 

The trick now is to find some form of medication that stops his seizures but doesn't have many bad side-effects. ie. doesn't sedate him so much that we can't progress with him. 

Having done a little bit of research and in speaking with other parents it seems that although there are side-effects to the medication some people have found that when they get their child's seizures under control their development has improved greatly. One parent has told us that infants who suffer infantile spasms have a specific brainwave pattern that is pretty much making the brain behave chaotically, therefore, once this is under control then you can start moving forward.

I am glad that Dan and I have picked up on this pretty quickly, I think the longer you leave it the more damaging effect it can have on the brain. I am going to ask the doctor for an appointment with a neurologist so that they can explain in detail the ins and outs of it all and what this means for Zack. Mind you I expect that this will be all doom and gloom as doctors don't usually have any words of hope or guidance for you, you have to find that deep within yourself.

On a lighter note, Zack has discovered the best place on earth, apart from on my shoulder that is........he has been spending time in his new little room. Yes, the little box arrived this week. It is basically a box with three sides and a perspex top with holes in it. It is based on the Little Room theory by Lilli Nielsen:

http://www.lilliworks.com/prod04.htm.

Dr Nielsen was an expert in educating children with multiple disabilities and the Little Room is used to allow babies to develop their senses within a smaller contained area. Oh, check out this link for more details, it will stop me babbling on:

http://www.lilliworks.com/about_dr__lilli_nielsen.htm

So, I popped Zack on his changing mat and slid him inside the box. I had already hung three little toys down through the lid. There was some protest at first but then he started moving his arms about and kicking his right leg. Vision lady (who delivered the box) explained that babies start to reach out by first accidentally hitting things, after a while they then realise that they can control their own hands and arms in order to grab and reach for things. 

Zack stayed in his little room for a good 30 minutes bashing away at his toys, every so often he would stop and turn to his left to see what he was hitting on the other side. Loving the box and we have until September with it, then it's over to Grandad Price to build him his own (even though his Grandad doesn't know this yet.)

Today in Warrington, it was Disability Awareness Day. This is a huge event for everyone and includes lots of exhibitors with information and advice, as well as your usual entertainment of pub singers, dancing girl groups and some bloke under a tent with several birds of prey. We picked up lots of information about various groups and charities that can help Zack. One that looks interesting is Stick and Step, it's a charity in Liverpool that offers free therapy to children with cerebral palsy. They have a mum and babies group which I am hoping to take Zack along to so we can find out what it's all about. 

Zack's big operation is next Wednesday and I am still terrified. Dan isn't and Zack certainly isn't but I can't wait for it to be all over and to have him home with us. I pray every night that he will be okay. I know it is only a short operation but that isn't going to stop me thinking something awful could happen, I may be being a little morbid and negative but that's my baby boy I am giving to someone else to look after. He was in hospital for seven weeks of his life and going in again, even for just one night, brings it all back. Roll on this week I can't wait for it to be over with.

So I'll start at the beginning

This isn't really my blog. This is Zack's blog, I suppose for the moment I have hi-jacked it, temporarily that is, until one day he might like to tell me to shut up about what he's up to, or take over himself. 

Zack is four months old, he arrived 7 weeks early which gives him a another age of two months corrected. I like to think that buys him a little time in reaching certain developmental milestones.

A lot of people ask me how Zack is doing, and a lot of the time I get to repeat myself until in the end I just say, oh he's fine. Fine is a word I use a lot, it represents a whole host of real feelings and things I would rather not talk about. So, I have created a blog for him, for people who might be interested in how he is, for me to record a new chapter of our lives and for all those amazing parents who have children with special needs or disabilities.

So I'll start at the beginning.......

Zack was born on 13th February 2009 at 5.53am.....my pregnancy had been plodding along nicely, I had gotten to 33 weeks when I was diagnosed with pre-eclampsia. A two day stint in hospital got my high blood pressure under control and I was sent home with tablets to keep it so until it was safe for Zack to venture into this world. However, life is never how you expect it to be, and that same week two days after I left hospital, I was being driven back to the labour ward in the early hours of the morning with severe abdominal pain. To cut a long story short, the pre-eclampsia had gone from mild to severe, my blood pressure was sky high and needed to be rectified before I could have a c-section. Whilst this was happening, Zack's heartbeat started failing then I started to bleed, by the time I was rushed into theatre, Zack had no heartbeat. A placental abruption had cut off his oxygen supply, this was the source of my abdominal pain. The doctors managed to revive Zack and then he began his fight. When I came too, we were told that he was not going to make the next 12 hours, we had him christened. I always think I did quite well to remember all his names, considering I was away with the fairies on morphine. Zack was ventilated, was given medication to stop him fitting and cooled to minimise the damage to his brain.

Seven days later he was taken off the ventilator and breathed for himself, he surprised everyone, no-one thought he would get that far, I always knew he would. We remained in the special care baby unit for 7 weeks, Zack came off all his medication but was unable to suck and swallow properly, so he was fed via an NG tube. His dad and I learnt how to pass the tube and we eventually got to take him home five days before his actual due date, 31st March.

Zack had suffered severe damage to his brain, this will effect his motor skills and possibly his vision and hearing. We don't know what he will be able to do or not do until he develops and grows but I count each and every day with him a blessing. 

He is our first child, we imagined the glossy kodak image of our family life, we imagined what he may be like when he was five, ten, a young man......our lives were completely and utterly shattered. This isn't how motherhood was meant to be, visiting your child in hospital for the first 7 weeks of his life, learning to pass tubes down his nose, visiting speech therapists, physiotherapists, hospitals and paediatric consultants. But this is our life......and this is a new life, one that is teaching me patience, acceptance, introducing me to people I would never have met, and most of all allowing me to see miracles in life that would have passed me by had our lives turned out 'normal'. I don't want to sugar coat it all and say how lucky we are, or think we are special to have been given a child such as Zack. Life is difficult and full of worry, but I wouldn't have it any other way. I love my time with Zack, I love talking to other parents with children who have disabilities, their strength of character amazes me. I suppose what I am trying to say is, this life, now, is one I never ever imagined but one that I am most grateful for, it's opened my eyes to what it means to be happy.