I was expecting Gene Hunt to burst through the door

We have just returned from an epic trip to Sussex to continue Zack's therapy at the Advance Centre.


I was dreading the trip down and was not looking forward to four hours in a car with Zack shouting his head off. We had a plan. It involved waiting a couple of hours after feeding him and a dose of Calpol.


We packed up. Got in the car and put the Pants in........cue screaming and a right paddy......for about twenty minutes then whack the Calpol kicks in and one fast asleep little boy for a good 100 miles. Quick stop at the services, one short feeding session later and asleep for another 80 miles.


Zack has been absolutely perfect during our stay. Just brilliant. Not on the car journey home though. The last 70 miles was awful, plenty of crying and nothing could console him except being out of the seat. But his good behaviour far outweighed this small blot.


We stayed in a four star hotel. Yes, I did very well and got us an excellent deal. The Copthorne Effingham Hotel, where dead people and golfers go for their holidays. It was a massive place and the grounds it was set in was lovely but oh my God, it was like sleeping in the 1980's. I was expecting Gene Hunt to burst through the door at any given moment. 


Down an exceptionally long corridor were two blood red mounds that looked like some bad papier mache design of Tracey Island, within which were huge pellets. They looked like giant cat litter trays. I mean what the hell is that about. 


Dan and I hardly got any sleep as the room was so blinking hot and I couldn't stop staring at the bad furniture. As for Zack, he slept like a baby in his fancy travel cot. 


Our sessions at Advance meant that we learnt some new techniques that covers more of the lung area and diaphragm. All seemed a bit confusing at first but having finished it became quite clear. We also had an assessment of Zack and compared photographs of him when we first started to now, and there is a vast difference.


The curve he had on his back has straightened out, he is sitting better, his chest has expanded, his neck is more elongated, you can really see the difference.


It is hard to tell whether this therapy alone has been the over-arching factor that has helped in Zack's development or whether it has been a combination of things. Well, here judge for yourself. The images on the left are Zack when we first went to Advance and on the right is the Pants after doing the therapy for nine months.

Zack's shoulders have now dropped down and his neck is more elongated

 

Zack's chest was rounded at first, now it has taken on a more defined shape with an expansion across his chest.

I love these next ones.

Look at how well the amazing Pants sits now. Just one hand supporting him. His feet are not as turned out and look at his left leg it was very turned out, much better now. Can I also bring to your attention his 'fro?

 

Sitting again. Look only one hand, much more control and a lot straighter.

 

Zack was very rounded and had a curve on his back, now much flatter and no curve. This was the image that impressed me the most. 

Well done Pants.

Two hours later, we were still walking.

The Pants had a very busy weekend. Saturday was F.UN club time, I think he enjoyed it again. He painted a picture of a frog, completed with a bit of help from his daddy. Then he sat on the floor with the other children to listen to a story. I was watching him sat on his dad's knee and he was having a good look at the floor because it was a brightly coloured mat. Then he suddenly sat up, turned his head and listened to the story. He did some good sitting and some good old listening.


On Sunday we tagged along with Daddy to Wales, Llandegla to be exact. This is where Dan goes Mountain Biking some weekends. The hour long journey there was not so great. Car seat problems meant that we had to stop, puke and then get put back in the chair. (Oh, not us, the Pants). However I have now discovered the difference between I feel really sick face and the I am throwing a right paddy face. 


First off, Zack gets really stressed when he is going to be sick, his face goes red, he crunches over and he pants. When he is having a paddy it's a different story. He does the old kids trick of extending himself into a board, arms go straight out, legs go straight and he tries to lift himself out of the chair, in the end he just pushes himself downwards and is even more uncomfortable than when he first got in. He also shouts at us, it's a combination of shouting and crying.


Dan tried to console him by giving his foot a little wriggle. I told him (in my best super nanny impression) to just ignore him and not reward the bad behaviour. It didn't work. By the time we got to the car park, he was sat on my knee happy as Larry peeking out of the window and taking in the scenery.


We met up with Brett, Sarah and their children Leo and Sadie, who were keen to show us their bug collecting kit, (the kids that is not Brett and Sarah, although they may have penchant for insect collection, who knows).  Dan went off on his biking expedition with Brett (whoooo gnarly...yeah!! Apparently that's what 30something biking men say to each other) and Sarah, myself, Zack, Leo and Sadie went off for a nice leisurely stroll.


Leisurely my backside. As soon as we set off we had to climb a steep hill. I couldn't breathe, nor speak. Two hours later, we were still walking. Still big blimmin' hills. I swear Sarah was secretly trying to train me for some epic fitness challenge. So glad Zack was in his off-roading pram. He did very well, moaning only when we stopped. At one point he was sick but after we stopped and sat down for a well needed break, he fell asleep and off we went........again. How that child didn't wake up as we surged up a steep hillside I will never know. Nor can I understand how two young children can power round a forest and not get tired. Are they super-human?


I must also add that we had a map. Now those that know me, know that I don't do maps. I don't like them, I can't read them and I make no attempt to read them. All those squiggles and confusing colours, no, just no. Sarah did a good job of trying to keep us on the orange route oh, sorry should that be called the 'if this doesn't kill you then try the purple route' route. By the end of it we managed to hoist a pram over a fence and work back along the road....do you know what? There was still at least three flippin' hills to the cafe. 


Having said all that we all had a good time. We enjoyed the fresh air, Dan enjoyed his bike ride and showing us his me-time and Zack found the cafe highly amusing. Plus as a bonus, we set his feed up in the car and he fell fast asleep.....all the way home, how's that for a cherry on top!

Congratulations Sarah

Zack is still doing his continuous round of applause for his Aunty Sarah who completed her half marathon in a super fast time of 2 hours and 36 minutes. 


Sarah's fantastic efforts have raised £360 for Zack's fund (must also say thank you to Nanny Price for raising £150 in sponsorship).


We are so, so proud of Sarah and apparently she LOVED every minute of her run and is now contemplating her next challenge. 


So a big massive thank you for your efforts Sarah, I know that the money raised will go a long way in helping Zack. 


Here's some pictures of the running lady below.

The end is in sight.

Sarah and her proud family, husband Brett, son Leo and daughter Sadie.

He loves nothing better than chewing my little finger.

I have noticed over the past couple of days that Zack has been doing some new things. They are only tiny things but still a move in the right direction.


The other day he was in his walker chair (which he likes...a lot) and it has a little bar across the table with some toy rings on it. He had his left hand on top of the bar holding it and his right hand underneath it, he moved his right hand from underneath and placed it on top so he could steady himself.  Purposeful movement, brilliant. 


Second thing I have noticed is that he is opening his right hand a lot more. Usually when he is on tummy time and he props himself upright his hands are in a fist shape but I noticed on his right hand that he has been putting two fingers out flat. When I picked him up for a cuddle he opened his hand up flat and put it on my shoulder. 


Third thing and this is due to his teething but he has taken to eating my finger, thumb and arm. I had Zack sat on my knee with his back to me and he was resting his mouth on my arm when I heard him sucking away. I gave him my hand and he launched himself on to the side of my thumb he was like a little vampire. Zack never bothered with sucking before but now he really has a good go at it and chomping too. He loves nothing better than chewing my little finger. 


He is also able to prop himself up for longer periods of time and he really pushes himself upright with his right arm. 


I am so pleased that he is using his mouth a lot more and I have even noticed him trying to suck his hand. This is all a good step in the right direction and we can definitely say he does NOT have an oral aversion.


Zack's Nanny and Grandad Gould bought him a ball pool for Easter. We got some more balls for it and filled it to the brim. I nearly lost Zack in it but he found it all very amusing, especially when you cover him in more balls. He is a very lucky little boy to have so many fantastic toys.


Dan and I went out on our own the other afternoon. Zack stayed with Nanny/Grandad Price and were given their first go with the food machine. I set it all up for them and went through the on/off start/stop instructions 10 billion times. I phoned them later, I wasn't worried about Zack I was more worried about them. All was fine, though they did drain off the excess milk in Zack's tube into a mug. That still amuses me. In fact everything was so fine, that Zack didn't even speak to me when I came back. He did later though, he was all smiles and laughs. Ha. He knows who loves him.

He is currently at 120% ratio of weight to height

Zack is enjoying  a few days with both mummy and daddy this week. Dan has got some time off work so we are getting to do lots of fun family things, like mowing the lawn and cleaning the house. 


Only joking, we just did a bit of that in between Dan experiencing a day in the life of Linzi and Zack. 


We went to our dietician appointment today. This includes measuring and weighing the Pants. Zack continues to put weight on and has grown in height. All good stuff so we carry on as we are. Any more fast weight increasing and someone will be a right old porky pig. He is currently at 120% ratio of weight to height which means tubby. He needs more stretching and less widening but who cares, he'll catch up soon enough.


We went swimming this afternoon. Zack enjoyed his swim support ring thing. He was more bothered about looking at everything than us pulling him round the pool. Dan enjoyed taking him swimming but not as much as last time as whilst we were there Zack had a few of his infantile spasms, which also caused Dan to go into worry mode.


He has had quite a few today (Zack's spasms not Dan's worries). I think we may be giving the consultant a call just to see what he thinks. We aren't sure if the 2mls of Sodium Valproate Zack was on was just keeping an edge on them or if he needs a new drug. It's so hard to tell.


I have been having a look at a few sites about tube feeding children and in particular weaning kids off being tube fed. There is a place in Austria that specialise in weaning children, known as Graz


They do it by reducing the amount of tube feeds that a child gets so that they start to experience hunger and thirst. They also allow kids to play with food rather than forcing them to eat. 


They let the child naturally request the food. They have a very high success rate but I think a lot of these children are not necessarily kids who have disabilities such as the brain injury Zack has, they seem to have a bit more motivation to reach for food and toys. 


Zack doesn't do any of that (yet) so I am not sure how it would work for him. However there is no doubt that Zack can be motivated by thirst and hunger. When he had his PEG fitted and he came back from the operation, he was so thirsty that Dan gave him a gauze with water and he sucked it dry. 


I just think that our NHS don't have the encouragement or the time to focus on getting children weaned off feeding tubes. They seem to see them as solving a problem for a child that can't eat. I think we need to take a new approach to trying to encourage Zack to feed as I am pretty sure the problem now is not because he struggles with his swallowing. 

It would be a good idea for Zack and for myself to have a bit of separation

Zack had his physio this week. He did very well, good head lifting during tummy time and he even moved his head over to the left to look in the mirror. He tends to like his head on the right side so we are trying to encourage movements to all sides including alignment in the centre. He also tried to throw himself over from his front to his side. He would throw his head back a bit to try and shift his weight. His physio was impressed as he was doing this of his own accord rather than due to a muscle spasm.


The Pants also got to have a go of the physio's gym ball. She shifted his weight from right to left whilst he was on it to get him used to correcting his balance. I told her we have one of these gym ball things (bought when I thought it would be of valuable use in my fitness regime that lasted all of two days). She advised me to give it a try and perhaps just steady it against the couch. Hmmmm, little did she know that previously we had been rolling Zack all around on the gym ball. Whaaaaaat? He likes it.




Today we went to visit Zoe's Place in Liverpool. It is a hospice for children with life-limiting conditions as well as complex disabilities. They offer parents respite care for their children aged from birth to five years.


When you hear the word hospice you imagine a sad place with sick children but it isn't like that. They have a fantastic facility that is open 24-7. It has two little bedrooms each with three cots, a fantastic sensory room, a hydrotherapy pool, a massive play room and it's all set within quiet, beautiful grounds.  


I have been thinking of late that it would be a good idea for Zack and for myself to have a bit of separation. It won't be long before he will be able to go to a nursery class a couple of afternoons a week and at the moment I am very nervous about leaving him with anyone other than family. But I know it will do him and myself good to get used to being in situations without each other. I mean lots of people put their children in to nurseries. But I feel so guilty about leaving him, I guess I am extremely protective of him because I see the barriers and difficulties that his disabilities can create. 


Sometimes I feel that I am the only person who understands they way he communicates. I suppose I am though because I spend so much time with him. However, I have to let him try to experience new things without me, perhaps this is another way that may help in his development. 


They gave me an information pack to complete. Effectively it is like a little handbook for Zack. It lists all his likes and dislikes, his way of communicating, his condition, his medications, his typical day. This way they can put together a care assessment for him so that when he does go and spend time there they know exactly what he needs. Every child has a one to one person in the day and at night time the ratio is one person to two babies. I don't think I could ever leave him there overnight. For now I think I will try an afternoon but even the very thought of it makes me feel quite sick. 

The teeth growing is taking ages

Zack has been a bit under the weather this week. His infantile spasms have increased slightly. I had got used to seeing hardly any at all so a sudden jump to about ten a day makes you question the reason for the increase. It could be because he has been a bit poorly, it could be because he seems to have five top teeth coming through, or it could be because he is now off the Sodium Valproate.


We have decided to wait a couple of weeks to see if they decrease. That way if they do we can assume the increase has been due to him being not quite right health wise. If they continue to increase then we are back to the drawing board and I am afraid a new drug may be introduced.


Yes, these teeth things are causing a lot of bother. For ages and ages I thought Zack was never going to get any teeth. I thought he would permanently have his gummy smile, that he might be the first baby in the world to never grow teeth. Now, his top gums look all swollen and you can see the tips of quite a few teeth. Nothing on the bottom though which is weird. But then Zack doesn't do things in any normal fashion. The teeth growing is taking ages, he has been extra drooly and the whole thing is compounded because he can't put anything in his mouth to chew and break the gums. 


To help we have taken to giving him our finger to chew. He really does give it a good old chew when you pop it in his mouth. But what he loves more than anything is a bit of Marks and Spencer chocolate mousse. Oh yes, not your plain old Tesco mousse just the good stuff. 


Come to think of it I think it was the chocolate mousse that made him a bit sick the other day. Maybe I should re-think that one.


Anyhow, here are some pictures of the mess. Along with a video clip of an amuse chocolate covered pants. Enjoy.

Can I just point out here that at the end of this giggle fest is what I think some video footage of Dan and Brett shaking their booty to Womaniser, their favourite tune. It was a complete accident how that got on there and now do you know what? I just can't get it off.....oooopsey.

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My Montage 4/3/10 at OneTrueMedia.com

Here's a mushy little treat for you Zack fans. A montage of his first year from birth. Makes me realise just  how much he has come on. Here's the amazing Pants.

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I don't think she was that keen on him

Zack went to Saturday Fun Club today. He had a power nap. Decided it would be a good idea to relax on a stuffed snake, look at some toys, get covered in a bright pink feather boa and fall asleep. 


Met some more families at the fun club, it is part of the sessions run by Families United. Nice to talk to lots of different people about themselves and their children with disabilities.


An Easter Egg hunt had been set up. All the smaller children went first. Their goodies were hidden in the ball pool. Zack had never been in a ball pool before. Even though he now has his own. Nanny/Grandad Gould bought it for him for Easter but we haven't set it up yet. He liked the ball pool. He found a stuffed bunny rabbit, he's called him Edward. The Pants was entranced by another little girl around about his age, but I don't think she was that keen on him. He moved on. Back to living it up in the ball pool. He also had a cuddle off a nice lady who said she would like another one next time. I don't think he'll refuse.


Appointments have slackened which is so much better for the two of us. We can now do lots of fun stuff, get his therapy completed and have more play time. Lately I have been trying to get Zack to sit upright. It's coming. If I have him face me and he straddles my legs he can almost keep himself upright. He's quite wobbly but at least he is experiencing falling from side to side to encourage his understanding of balance and movement. Sometimes he really likes it if you move his arms up and down very quickly. He gets so excited, he smiles, his eyes get really wide and he looks straight at me. It's so great to see joy in his eyes.