I did say pigeon poo

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


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


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


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


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


He does make a good point.


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


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

Zack did some extra good sitting.

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






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

Zack has been in a good mood over the past few days

The germinator is better. Back to his usual self and just in time for his mini break to Sussex for his second round of therapy at the Advance Centre for the Scotson Technique.

We travelled down on the Sunday. All in all it wasn't a bad journey and the hotel was really good, much better than the last place we stayed. The room was a good size, comfortable and able to accommodate Zack's entourage of gear. The boy does not travel light. During our stay all I could think about was what the hotel cleaners were thinking when they emptied the bin full of Zack's feeding syringes. I hoped that they didn't presume Zack's parents were junkies.

Zack had his little carry-cot to sleep in, we managed to settle him down for the night, he knew something wasn't quite right. We lay him on his side and he gave a quick look back and two over his shoulder almost as if to say...."Waaaait a minute, this isn't my cot at home, this isn't my bedroom..." then off to sleep he went, lulling us into a false sense of security. By 3.30am he was up and having none of this going back to sleep business so we started our first session at the Advance Centre having only had a few hours kip.

We were there for two and half days (not continuously, they did allow us back to the hotel). Zack seemed to really enjoy it, he was relaxed and allowed us to practice some of the new exercises on him with little protest.

The exercises were slightly more complicated than the first set we had learnt but by the end of the last session it all became clear. Now we are home and having done the set over the last two days, it is all very easy to understand. We even have a white-board to mark off what we have done. However the purchase of the board caused a row about who was going to draw the chart, I think the final words in the conversation came from Dan, "Well I did buy it so I should draw the chart." Pathetic isn't it.

Whilst we were in the South I discovered Dan's knack for hoarding. He was desperate to take home the hotel mini shampoos and shower gels. Now from past experience of his visits to hotels I know what happens to these little extras. They don't get taken to work for use in the showers as promised, they remain in the bathroom and get skanky and forgotten about. I refused to take any. He remarked that they were Elemis and rather nice. I still wasn't taking any home. I started packing the bag ready for our departure when Dan said, "Errrmmmm, you might notice that there are some little things that are coming home with us." He'd made a secret stash of bathroom products in the bag.......I gave up the fight.

I felt really positive when I came back from our short break. It was refreshing to go to a place where you feel that you are helping your child rather than having someone just tell you what's wrong with them without offering much support or help.

Zack has been in a good mood over the past few days, he is continuing his interest in my annoying pestering of him. This usually involves lots of kissing and talking to him in stupid voices, I'm sure he is just humouring me. The other day I came downstairs, Zack was lying on his changing mat checking out the floor as usual, I walked past, he noticed and smiled. So I stopped and said hello, and another smile, this called for a lot of kisses, Zack was no longer smiling......too much kissing.

Every day I am starting to understand Zack more and more. I know his personality and I know for definite he knows me. In his own way he is starting to interact with me and it's wonderful. I get him. Other people may see him and think he isn't doing much but they don't know him like I do, they don't get the chance to see the little expressions, the difference between contentment and annoyance but I do and that means more to me than anything in the world. I never knew that you could love another human being like this, sometimes it's so intense it's frightening. I am really fortunate to be able to love Zack for just being him. He doesn't come along with attachments of my dreams of what I might want him to achieve or gain, I don't need him to show me how clever he is, how talented he is, all he needs to do is be him and nothing more and because of this I get to love him purely for who he is, not what he does. To me, to love someone for this reason alone is a very fortunate gift.

The germinator is getting over his cold. He has done an excellent job of infecting me and Nanny and Grandad Price. A second course of antibiotics seems to have done the trick and he is getting back to his normal self, so it's good to see him being a bit less sleepy and more alert again.

We have had to cancel a lot of his appointments due to him being poorly. Luckily he hasn't had many booked in this week so we had a good week of not dashing about everywhere. 

The vision specialist lady came to see us but Zack wasn't doing too much apart from coughing. We went through his little development journal. They gave me this gigantic folder which breaks down his development milestones in to small bite-size chunks. It's quite a good idea, instead of the usual milestones that babies reach the journal is broken down into, well, baby steps. As we went through it I discovered that in his own way he is communicating with us and becoming more aware of his body. Apparently, when he completes section 1a he gets a certificate!

We are off to Sussex on Sunday to take him for his second session at the Scotson Advance Centre. We are looking forward to the little break, I have booked us into a nice hotel only five minutes away, it has a gym, pool and spa.......you can see my thinking can't you. 

Dan has taken to calling them Dipety Doos

We are back to normality. Zack is so much better now and I have had a really good week with him, in fact he's been no trouble whatsoever.

I am starting to discover that Zack is very good at telling me what he doesn't like. He isn't yet smiling so his opinions move from comfortable and content to you'd better stop what you're doing right now and take your hands off me. Take for instance nappy changing, he has now discovered that having this done first thing in the morning isn't such a good idea and tries to push your hands away and kicks you in the stomach at the same time. In fact, he is starting to turn into a spoilt little boy. You know you're in trouble when the frown appears on his face followed by the bottom lip being pushed out. I hope over the next few months he can also express joy and laughter but I think we are a long way from that, so I'll be happy with the contented Zack.

His medication for his epilepsy has increased. It is having an affect but it hasn't cut out his seizures yet. We don't call them seizures in our house, we used to say episodes but now Dan has taken to calling them Dipety Doos, I don't know, maybe it makes them sound less threatening. Every day he comes home from work and asks how many Dipeties Zack's had, I give him a number which in turn gets a worried or an elated reaction depending on how high or low it is. I am starting to think we should use his Dipety Doo numbers as next week's lottery, you never know, we could be sitting on a small fortune.

Zack still isn't on his full dose of his medicine, in fact we are only half way toward the full dose. The epilepsy nurse seems to think that it's good that he is responding to the medicine and that the episodes are decreasing, however she wants him to be seizure free so we still have a way to go in getting them under control. The good news is we are heading in the right direction.

We went to the feeding clinic the other day. Zack had his usual way in and length measurements, I give up with being interested in the curve in the red book now, I am sick of looking at plots and graphs. Zack is putting on weight and he is growing and that's all that is important. Stuff the chart. We mentioned to the Speech and Language therapist that Zack has been a bit disinterested in his water of late. She suggested we leave him be with trying it for three months so he doesn't get an aversion to it all. Dan went on to tell her how he has been waking up for food and that when he was in hospital after his operation he was so thirsty that he sucked all the water off a gauze. She wasn't sure whether to send him for a video fluroscopy. This will show us where the fluid is going when Zack swallows so we can check it is going the right way and not into his lungs. By the end of the session we agreed that we would try him on solid food in 8 weeks time. I'm already doing that now, he has a bit of pureed apple here and there and loves it. I take what they say with a pinch of salt, over these past few months I have come to trust my own instinct with him. I know not to push him too hard and at the same time I know not to give up trying with him.

Zack's had a fitting for his hearing aids. It was all over in five minutes. They just squirted some putty in his ears to make a mould. This is then sent off and made into special Pant's hearing aids. They told me that they will test his hearing with his hearing aids in and keep re-testing his hearing without them to see if there is any improvement. We should get them in the next couple of weeks, I bet Zack can't wait for Lady GaGa!

We were due to have a physiotherapy session at home on Friday but the woman didn't turn up. When I called to find out where she was she said the session was at the clinic even though at the last one we discussed her coming to the house. Great. No physio for Zack. We rearranged and she made no apology for the mix up. I'm not too bothered that a mistake has been made it just annoys me when she didn't apologise. Mind you all she does is the same exercises I do with him every day, so he is not missing out on too much. I will see how we get on over the next few weeks and then may look at some other form of physiotherapy for Zack.

On a few positive notes, Zack is LOVING his Little Room. His Grandad Price has now bought him his very own one for keeps (told you he was spoilt). These aren't cheap to buy so we are very grateful to his Grandad as this is a really valuable piece of equipment. We have put some toys down the sides of it now. The other day Dan and I were in the kitchen when we heard some loud banging, Zack had discovered the rattle at the side of the box and was taking great delight in batting it with his hand. He can spend a good hour in that box and not get distressed, it's fantastic.

We are carrying on with his Scotson technique and it seems to be doing him some good. He is getting more relaxed and a lot more vocal ( this last benefit is not good for our ears). He opens his mouth a lot more when in full crying mode which is great as he never used to do that. We are due to go back there in October and I am very much looking forward to it.

Zack's ability to move his legs and arms is getting better. His feet are not as turned up as they used to be and it is easier to bend his legs which is something he does of his own accord. We do some baby massage after his bath each night which he quite likes now and this give us a good chance to get his feet moving and encourage him to stretch his muscles.

Next week we have no appointments, not one hospital appointment or nurse appointment, nothing. I am really looking forward to it. I suppose for others you would call that normality for me I call it a treat.

Dan thought we had gone on our holidays to Platt Bridge

Zack's been on his holidays....to East Grinstead! It wouldn't be my first choice of exotic destinations but what can you do when the Pants wants to go to Sussex for a few days. We travelled down last Tuesday, not for a break but to start some therapy for Zack. I mentioned in my previous post we were going to do the Scotson Technique. 

So there we were on a Tuesday evening driving down to Sussex, the journey wasn't too bad. Zack was reasonably well behaved and so was his dad, I didn't hear too many "are we nearly there yets". Not until we got to our base camp for the next three nights. I thought I had been really smart and booked us into a very reasonably priced hotel. And it was lovely, very clean, great staff, absolutely stinking hot in our room, oh and did I mention it was at the back end of a council estate. Dan thought we had gone on our holidays to Platt Bridge. I reminded him that it wasn't a holiday and that if he can do any better on a small budget then next time he should book the accommodation. It wasn't as polite as that, there was some swearing involved, but we had been trapped in a car together for over four hours.

    The Barrington Lodge in all it's glory.

  The craphole where it lives....I feared for my life!

We went to the Advance Centre on Wednesday and began our training. The technique is very gentle, non-invasive and relaxing. It involves positioning your hands at different points on Zack's diaphragm then gently pressing down and releasing. We learnt eight exercises in total and the next time we go back (three months later) we will learn another 18 or is it 24, I can't quite remember but it's a bit more intense than this session. 

The therapists and the lady who developed the therapy Linda Scotson, are lovely, very friendly and extremely informal. Dan and I were even treated to a back massage off one of the therapists, yes, hard work all this therapy stuff.

  Zack is developing moobs and I need to update my QVC hands

 Therapy is such hard work

On Thursday we took a trip into Brighton, it was 34 degrees at 4.30pm, thank God for air conditioning in the car. We took Zack for a stroll round, he seemed to quite like Brighton, did lots of little smiles whilst being pushed about. I love it when he tries to smile, he still isn't smiling yet but I know it's coming, I can't wait for the day he does a huge smile. Although saying that, this morning I went into his room to get him up and tripped over his jungle gym, this made one of the little bells ring and I caught him giving a sly smile in response, obviously he found it amusing that I nearly broke my neck making my way into his room.

The journey back home was horrendous, the M25 should not be allowed to exist, it's just wrong I tell you. One hour and 50 minutes we were stuck on it, with me in the back saying how sick I felt and Zack saying how annoyed he was to be in his car seat. The whole journey took 7 hours with stops off at service stations, I think it was just a bad day to travel there seemed to be lots of accidents and hold ups.

We have continued with the programme we learnt and are trying to fit it in with day to day life. It isn't too bad at the moment. We don't know what results we will see, and we are not expecting miracles or for him to suddenly jump up and do cartwheels. We just hope that in a few months time we can see some small developments. We spoke to another parent at the centre who couldn't praise it enough, her daughter is epileptic and she said it has really helped her daughter a lot. 

Before we went to the centre I wasn't sure that we were doing the right thing. Having been there and learnt some of the process I am more convinced and have a gut feeling that this will help Zack in some way. Well I hope it will anyway.

 

 

 

She suggested we up his oral fluid in-take to 10mls of water

This has been a busy week for the Zacky Pants, it's been full of appointments, travel and has given us all plenty to think about it. 

Monday was Feeding Clinic day

This is a visit to the Child Development Centre in Warrington. Lovely place, friendly staff, nice building, I think we are lucky to have somewhere like this in our borough. We met with the Speech Therapist (ST) and the Dietitian. What usually takes place is Zack gets naked, shouts a lot, gets weighed and then the Speech therapist pops her finger in his mouth to see how his sucking is coming along....you can see how he loves going to these sessions!

This week, he did brilliantly. He has put on some more weight and is now 9lb 3 and has grown a little more, 52cm in length. But the best thing was his sucking has improved a great deal. ST was very, very pleased with his progress, she thinks he is developing nicely and it seems, in her opinion, he is delayed developmentally, which although isn't perfect is good as he can catch up.  ST was so happy with his progress that she suggested we up his oral fluid in-take to 10mls of water. Ten I shouted are you sure. Mmmmm. Okay seven. Seven! Okay I tell you what go with 5mls before each feed. 

And so 5mls we have been trying before each feed and he is doing great with it, having a good go and swallowing it all I am so proud of him. 

Tuesday we went to see eye lady 

Again we were at the Child Development Centre. We got taken into their nice sensory room and met another lady who specialises in working with children who have visual problems. 

Before we go in we have to take our shoes off.....so now we are all sat in this white plastic room looking at a bubble lamp and I am wondering if its my feet or Dan's that smell really stinky. 

Anyway, Zack seems to be enjoying the bubble lamp and eye lady is very impressed with his intense watching of bubble lamp....then Zack decides to do his usual trick of falling asleep. Appointment over with in less than 15 minutes. However, new lady suggests she comes to our house for a visit and will bring with her a new house for Zack. Personally I think the one he lives in is fine and was quite offended that she thought he needed a new one.

It seems Zack will be the proud owner of a cardboard box house! Apparently there is a theory that to encourage visual development babies are better off with no other sensory interaction, so by popping them into a box with visual things for them to look at it cuts out all of the other distractions. Great, in the middle of Zack's pretty nursery is going to be a cardboard box, never mind, by the time I've pimped it up it will look fabulous.

Following visit to eye lady, I went off for a visit to the dentist, to be told I am to come back in a couple of weeks for root treatment and some fillings, fantastic.

Then we went over to meet a lady whose little boy has had a gastrostomy. (By we I mean Zack, Dan and I, not the dentist, I am sure she wouldn't be that interested.)

The little boy who is two has a Mic Key button, slightly different to the PEG but the principle is the same. She was very nice to chat to and showed us what Zack will end up with which isn't that bad and will be much better for him than his NG tube. She also told me that gastrostomy's heal very quickly which is good to know, as I was wondering how easily they are to reverse. 

Wednesday - Visit to the Advance Centre for the Scotson Technique

I suppose any parent with a child who is disadvantaged will look to find the best therapies that can help them. Sometimes we are all looking for a wonder cure that may just perform a miracle and help your child to become more, and I hate using this word, 'normal'. 

We just want to help Zack, and I will do everything I can to make sure he has every opportunity to develop to the best of his potential. This has led to many hours researching therapies, talking to other parents who have had success and failure to varying degrees with different forms of therapy. 

By chance I came across the Scotson Technique, 

http://www.scotsontechnique.com

It is a therapy developed by Linda Scotson and works on the theory, and I quote here from the website:

 "develops the potential of the uninjured brain by enhancing the respiratory and circulatory systems to deliver oxygen to the body tissues. This is achieved by the gentle manual delivery of breath and pulse-like pressures which copy the effects of breathing on the body tissues and circulatory systems."

Huh! 

Yes that's what I thought when I first read it. I'll put it into language I understand.

Basically, a child's growing brain needs a lot more oxygen to grow and develop, most children who have suffered a brain injury also suffer with their respiratory system, therefore if we can help to develop a correction in breathing, more oxygen will go to the brain helping it to develop. 

Typing this here makes it all seem a bit pie in the sky, but I do understand where the theory is going. I'll never forget the day Zack was in the incubator and for some reason he had a funny turn, his oxygen levels started to drop so the nurse gave him a quick burst of oxygen. This was when he opened his eyes for the first time and the nurse, commented on how he liked the extra oxygen. For Zack this was the turning point, this was when he started on his recovery to come home. I am a strong believer in oxygen being necessary for the healing and development of the brain. However, the therapy costs a lot of money. Whilst I would happily sell my soul to the devil to do whatever is needed for Zack I don't want to just throw money away on a whim.

Hence our road trip to West Sussex. I took to the wheel for the journey down. Dan got off lightly as Zack decided to sleep all the way there. This was not the case on the way back when i was stuck in the back seat with the Pants who decided now was a good time to be wide awake for the next four hours and have a hissy fit. 

The centre is in East Grinstead tucked away behind two buildings. we know this because we did five laps of the one way system before we got directions to the building. We met with Linda Scotson who explained in great detail the theory behind the practice, she also took a look at Zack and showed us how his back is curving and how he is using superficial muscles to try and do the things that most babies would naturally do, the problem with this is that they won't support him forever and when he is older they will collapse due to his growing height and weight.  I know Zack doesn't breathe well he sometimes, when he gets stressed, pants quite fast, almost like he is hyperventilating, he also doesn't like being on his back and tends to roll to the side when you place him there. Linda pointed out that he probably likes to be held a lot, which is true, this is because it makes it easier for him to breathe, again I have to say this is true, when you hold him, his breathing becomes calmer and more rhythmic. She also thought he was very alert and suggests that a lot of his problems are physiological rather than neurological.

We left with a lot to think about. Usually I am quite good at making a judgement call on places or people, I get a feeling about it, (I am starting to sound like that woman off the Apprentice who believed she had the gift of intuition). Anyway, with this place I don't know I just couldn't say for definite whether it will help or not. Dan and I have spoken about it over the past two days and our conclusion is the same. We can sit here at home and not go and then wonder if we did go whether it would have helped him. Or we can go, spend the money, spend our time and invest in it and it can either do nothing or it could help him a great deal. So we are going. We are taking the chance and giving it a go, at the end of the day it's only money and time. If it doesn't work it doesn't work but at  least we will have tried. 

Friday - And mummy rested

No she bloody didn't. She got up fed the Pants, winded the Pants, dressed the Pants. Went into town so Zack could pick up a Father's day present. Got back, cleaned the house, cooked the tea and finally sat down for two minutes to write this blog. There is no rest for Mummy!