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.

HAlarious

I fear that Zack may explode from laughter. I don't know what was up with him today but everything was HAlarious. 


Revolving doors where daddy works. HAlarious.
Playtime in his little room. So HAlarious.
Combing his hair after bath time. Yep. HAlarious.


Even me. Me. Extremely funny, so was the word ready and showing him his comb. Here take a look at the Pants in his Little Room.

Photo and video editing at www.OneTrueMedia.com

Do you know what is not so HAlarious, the NHS. I spent the morning chasing and emailing for appointments and equipment, the details of which I won't bore you with but needless to say a lot of things had not been done and it just isn't right. As a parent looking after a child with special needs it is hard enough the last thing you need is a few extra hours thrown in to chase people who are not doing there jobs. Okay, so it may not be that important to them but in our world it is top of the list, so come on, we know you have a busy job but please at least do what you were asked to do. Rant completed.

True happiness is the pants and his garden swing

Then came what shall be known as car doorgate.

So Zack went to hospital for his appointment with the neurologist about his epilepsy. We hadn't seen a few of the familiar doctors and nurses for a while (which is a good thing as it means Zack is behaving himself) but this meant we had a good half hour of, oh my he's shot up, look at the hair, look at the hair, it's crazy.


Even his neurologist commented on his hair, oh and most importantly how good Zack's posture was. Yet another professional stating that his posture had improved. More proud mummy moments. 


We discussed that he is now only on his Vigabatrin and that he has been on it for six months and we were concerned that it might start affecting or damaging his peripheral vision. Since Zack's eyesight has much improved we don't want to take the chance of making things worse. So a new plan was agreed that we would wean him off the Vigabtrin. If his seizures go up, that is, he starts having more than his usually, barely there 3 - 5 a day, then we introduce a drug called Lamotrigine, which has less side-effects.


We are now in the process of weaning him off his Vigabtrin over a course of two months. I can't see him being medication free but you never know, stranger things have happened. It was also suggested to us that we could cross over the medications, take him off his old one and introduce the new one at the same time. But how will we know if he really needs it if we don't give him a chance to be medication free?


I guess here we are again in unknown territory and only time will tell. At least we got lots of very happy with Zack and things are good for him and very pleased, so that's nice. Oh his paediatric consultant came and said hello and gave us a thumbs up (I think this means good and well done from him). 


All in all a very good day. Then came what shall be known as car doorgate.


Oh my god. I have injured my child. Yes I am mortified. 


Thought I would pop out to Tesco with the Pants to get a few bits. Surprise, surprise no parent and child places left, (well there's only eight and for God's sake most of the people that shop there have kids so come on, by the way I would never have said that, six years ago, I would be cursing those parent and child spaces).


So we park in a normal spot and it's a tight squeeze, and it starts lashing down with rain, I go to get Zack out of his car seat and out of the tiny gap between the car and the door, when he drops his head forward and, whack, he bangs it on the car door. 


Ten second delay then desperate screaming from Zack. You know you get that feeling in the pit of your stomach and you feel sick, magnify that by at least a 100. I get back in the drivers side with Zack who now has tears running down his face and take a look. Oh God, there is blood, he has gashed his eye. Oh God, his eye is swelling up. I am no longer a good mummy. Five minutes later Zack has stopped crying is back in his car seat and we are going home.


A call to Dan equals me in blind panic. Do you think he needs to go to A and E? Will his eye ever go down? What do I do? 


Two hours later Zack is laughing in his little room. His eye has gone down. He just has a scratch. It only bled a couple of dots mopped up with a tissue paper. Today it's almost healed. Okay, slight over-reaction. I still feel like I let him down. He still loves me. Dan still reminds me he fell down the stairs with him. Oh yeah I recall, may be I'm not so bad after all. 


Lesson learnt, when getting a child with special needs out of a car seat be super, super careful with their head. Just because they have good posture and head control doesn't mean you can get cocky.

He did his tongue out smile

Zack and I went to play school on Monday. It's the one run by the vision specialist team so includes lots of toys for visual stimulation. I took Zack into the room and sat on the floor with him, he was fascinated by the whole room and his eyes went really wide, soaking in all the good stuff.


One of the teachers brought over a long orange tube, which was quite heavy but is good for children to use for body awareness. When you turn it on it vibrates. Zack had his hands on it and the teacher switched it on, well, he loved it. He did his tongue out smile (that means oh I really like this), big eyes, the whole shabang. 


This is what we mean:


Vibrating Snake


Oooh only £12.99 might get him one of them. He'll probably be board of it by Thursday.


Overall conclusion of the day was how amazed everyone was that his posture has improved, his head control is much better and his vision is even better than the last time. 


Well done Pants a successful play group. However at the end I did catch him giving the Skunk eye to a little boy of about the same age, hmmm, maybe he thought it was too much competition for the ladies, the flirt.

So long illness

Dare I type this? Three days. Three whole vomit free, Zack back to his usual self days. Brilliant. 


We are almost back to normal. Okay he is on his third lot of antibiotics to combat a supposed chest infection but he has been the smiliest, happiest little boy in the world.  


Feel like we have been in limbo for a bit but glad he is getting better. As for Dan, well he has had man flu for a couple of days, but that managed to disappear when he went off for a few hours on Tuesday with his trusty steed.


So now back to plans for the weekend, fun stuff to do in the diary and plans for the Pants and his baptism. 


So long illness, lets hope we don't see you for a while.

I honestly thought I was going to see his stomach fly out of his mouth.

I am writing this in the relative safety of the lounge. I say safety as it seems being within 12 inches of Zack will result in being coated in regurgitated milk. 


It all started on Friday morning when Zack's tube got blocked. It took me a good twenty minutes of pushing and pulling water back and two with a syringe to unblock it. After that the scamp puked.  Later that night he switched it up a gear and threw up continuously eight times. I honestly thought I was going to see his stomach fly out of his mouth. Zack had become a very poorly boy.


By the morning he wasn't looking so good and was breathing quite rapidly so I put a call in to the local hospital as we have Open Access to the ward. The sister I spoke to didn't recognise the name (in my mind that's a good thing, shows Zack is, in the main, well) anyway after explaining we are in the book, she told me to bring him in. We did. We waited. A doctor who looked about twelve (when did they get so young) came over to ask all the usual questions, then examined Zack. She tried to look into his mouth but he wouldn't really open it and just gagged a lot. She sounded so surprised when she said she couldn't get a look at his throat. Errrrm yes he has cerebral palsy and can't open his mouth very well. As for the gag reflex, good that isn't it, considering when he was born doctors thought he didn't have one!


One chest x-ray later and five impatient visits to the nurses station by moi, I told them I wanted to take him home. I knew his x-ray was fine and his chest was clear which was my main concern. However the Pants had an ear infection and possible stomach bug. I eventually got us out of there with a bottle of antibiotics. 


Four days later, the antibiotics haven't worked and Zack is still puking and not keeping much food down. A visit to our GP showed that he still had an ear infection and we were given new antibiotics to try. She reassured me not to worry too much about his food as long as we keep him hydrated that will be fine. I am not reassured. Zack has now developed a dry cough. He coughs so much that he vomits whatever is in his stomach. How long will this illness go on? 


Tonight the coughing seems to be easing so I am hoping the antibiotics are working. Have also dosed him up with Calpol and got a bit more food down him. I can handle most things with Zack but I hate it when he is sick. I am not good when he is sick it makes me worry, a lot. Dan is not worried. Dan is more worried that Zack's teeth still aren't there and that he might get some strange looking fangs. Funny how men think differently to women. 


Here's hoping we have a vomit free day tomorrow.