Off I went down the M62, yet again

Slight problem last Sunday when another dash to Alder Hey was needed. Thankfully this time it didn't involve the body of a two year old, this was more to do with my obsessive cleaning habits.


I decided to put the extension tube to Zack's Mic-Key button (the bit that we attach in order for the food to go down) in to the steriliser. Well I thought it would give it a really good clean. It did. It also melted the top so we could no longer attach the syringe. Bearing in mind we were only given one of these, mild panic set in, it was Sunday night and it wasn't like I could pop to the chemist and pick one up.


I know I'll phone the local hospital. Nope they ain't got one, why not try Alder Hey. Bingo. A nice nurse in one of the wards found one for me and so off I went down the M62, yet again. At least now I know not to steam clean the tubes but maybe they should come up with one that doesn't melt in the steriliser.


We went to see the dietician the other day. Zack got weighed, he is still the same but 2cm taller than last time. I am sure the scales aren't right, I mean he is getting really heavy to lift and is starting to hurt our backs. I also had the discussion with the dietician about his blended diet. She still couldn't recommend it even though he's stopped throwing up during every meal. 


I asked why. One of the reasons given is that Zack wouldn't always be getting his nutritional needs met through a blended diet. I said I didn't understand the point and the dietician explained that through a blended diet you cannot be sure of the calorie content. Well hang on, does every parent feeding a child that eats normally count the calories or even know how many calories their child should have. Nope. They just feed them. I on the other hand know how many calories Zack needs, how much fluid he needs and I give him a diet that is probably healthier than most children as I can get all sorts of veg, and good things down his PEG. 


Anyway I just nodded, explained all of the above and said it was a shame more health professionals couldn't get on board with this method of feeding. We agreed that I didn't need to come to more appointments just for weighing as he usually gets weighed at the hospital and that if I need to see her I can just get in touch. Works for me. And off we went back home to some blended cottage pie. Nice.

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.

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. 

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!