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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,
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."
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!