Hi All, it's been a while!!! I have been extremely busy with having my Cheeky Boy on his new Ketogenic diet, having RozArt's new look and connections in social media turn 1, having two Cheeky Children have their birthdays and of course coping with all the everyday runnings of a house, business, school activities and the numerous therapy sessions for the Cheeky Boy each week! So do you feel exhausted reading this??? I have been exhausted coping with cooking twice as many meals a week and having the Cheeky Boy adjust to eating the food has me kept extra busy and needing to funnel my left over energy into his needs and of course my family is ultimately my priority so the Blog has had to wait.
Let me tell you a little of how things have been with starting his new diet... we arrive at the hospital with him acquiring a viral cold from screaming his lungs out the night before when he had a hair cut. He unfortunately he doesn't like having his hair touched for any extended periods of time so he doesn't have haircuts often. So before going to hospital I have help to cut his hair as it was too long and lucky we did do it as he had an EEG at hospital which is easier to do and easier to get all the goo out of the hair (from were they attach the electrodes) after the procedure is complete. As you may also guess, EEG's can be a trauma, as they evolve touching his scalp... this time he didn't struggle too much :-)
Anyhow, after a couple of days in hospital a gastro bug breaks out in the ward and the Cheeky Boy is effected :-( no food staying down and thank goodness the vomiting only went for three hours. Unfortunately for him however is the fact that the start of the new diet causes their glucose levels to drop and for him, it was at its lowest when the gastro hit. So his glucose levels were tested every hour and he ended up on a drip to keep him hydrated and on a gastro nasal tube to feed him liquid meals to keep his ketone levels up.
For most of you who do not know what a Ketogenic diet does, here's a simple explanation: by eating certain foods that are high in fat (good fats like olive oil) and protein, with reduction of carbohydrate foods (breads, pasta etc) to very low levels the body produces ketones instead of insulin to give the body fuel. This change in processing energy by the brain can enable people with epileptic seizures to have a reduction in seizure activity and in some cases no seizures at all. So the Cheeky Boy is on a three month trial of the diet and could be on it for a couple of years. The diet needs to be monitored carefully by Doctors and Dieticians as it is not a diet that can be just started at home and a person on the diet can only do it for a couple of years at the most.
To help contain the gastro with in the ward, the ward was put into lockdown so we were kept in our room and no physical contact with the outside world until discharge. I was only able to go and use a designated toilet and shower and touch nothing else. We were lucky, we had a bed near the window so at least we could see what was going on outside. So what we thought would be about a five day stay in the hospital became a ten day stay.
As he diet had changed, it had become less yummy to him, especially when you are in lockdown in a room and you can not even heat his food without waiting a very long time for a nurse to be able to do it for you. So you do what you can and as time progresses, you have to fight to get every mouthful in him, if he would eat it at all! So the decision was made easily to release us from hospital and have me cook him appropriate meals to get him to eat.
Over the first few weeks out of hospital were quite difficult in terms of convincing him the food wasn't hospital food and now I am limited to cooking him each meal as he won't eat any of the meals that are easy to prepare!! so hopefully as time passes he may be a little more agreeable to different varieties of meals. Fingers crossed!!
On the good news front we have seen a reduction in the severity of his drop seizures for the most part. So that is definitely a step in the right direction. The past week has not been a good week for seizures but we have had a slight adjustment in the amount of calories (increase) in his meals so that may help. We shall just have to wait and see.
One great thing that the Cheeky Boy has been able to do is go and have a visit to Pegasus, where they have riding for the disabled. He has never been near a horse before and I told the instructors that he will not be afraid as he trusts that I will not put him anywhere that is not safe. He of course was not at all scared of the pony that was much bigger than him and he even sat of her back :-) As usual he charmed all that met him :-) He was however more interested in wanting to play with the sawdust on the arenas floor than staying of the pony!
Pegasus does such wonderful work with people with disabilities and the influence that an animal can have on a person with disabilities is incredible. So if you would like to see what great work they do or even perhaps sponsor a horse please click on the following link: http://www.pegasusact.com.au/
As for RozArt, I have been busy making pieces for happy clients and here's a photo of Harry, a gorgeous westie who is wearing one of my Four leaf clover ID Tags :-)
Well I hope you have an enjoyable week :-) I will look at making a new entry every couple of weeks now as you can understand I am even more time poor than ever :-/
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