What next?

Well its seems when I am deep asleep at night my alarm goes off. I don't hear it but Mammy does. My heart rate drops low but not to worry I am going to see the cardiologist at the end of the month so we will see what happens.
Sure its always something I have to keep them on their toes.

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Went back to see Dr K

Went back to see Doc K the other day. Well she was twisting my legs and arm in all different directions. She is very happy that the botox shots have worked very well in my ankles, right hamstring and my left arm/hand. Now my left hamstring is another story but it looks like I will have to go under the knife and get that fixed but not right now later on.

Maurs was sick and Mammy took her to the doctor so she got some meds. She has that nasty horrible cold with a terrible cough. Now Mammy is barking a bit she must have gotten it from Maurs.
While at the docs office with Maurs the doc asked about me and wanted to talk about the blood work I had done at my yearly check up. Yup there is a problem it seems my thyroid stimulating hormone (TSH) is off the wall high. So I now have to go and see a new doc with olgy on the end of his/hers name. I think I will have seen all the "olgy" docs that a boy has to see. Oh well the appointment isn't until April so we will have to wait and see what happens then

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Another Angel get his wings

Caleb Moody got his Angel Wings on Saturday February 10th 2012 at the age of 7 years old.

Rest in Peace Caleb.


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I am a tubie "Feeding tube awareness week"

You see the white button on my belly? That's my g-tube button. Mammy hooks a tube on to it and then the food goes straight into my belly. I got it a few years ago as I wasn't gaining weight and I didn't like my seizure meds and kinda would spit them out. Mind you Mammy tried everything to keep me eating like most people but because of my seizures I wasn't able to swallow and would suck most of what went in to my mouth down in to my lungs and then I would sound all junky and she would have to give me more meds to get rid of the junk in my chest so I wouldn't get really sick. At first when I got my tubie I only got my meds and one feed over night in it but as time went on and they started me on the Keto diet they said it would be safe if I got all my feeds straight into my belly. The Keto diet is high in fats and it would make me very sick if that got into my lungs. Mind you I have sucked a bit down the wrong pipe when I would throw up.
Mind you plenty of people gave off to my Mammy when she said I was getting my tube. They thought she was taking the easy way out but I had to have surgery and that is not fun. But when you are supposed to get say 5mls of meds to help stop my seizures and I spit out some of it cause it was yucky was she to guess how much I spit out and give me more? She couldn't do that so it would be much better to put them straight into my belly. Well I didn't get to taste the yuck meds any more so I liked it.
You know Mammy was more afraid of my feeding pump than me getting the g-tube. She was afraid she would mess it up and maybe give me too much.
Mammy says getting me my feeding tube was one of the best things she did for me and you know she is right.
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Finally getting OT

Can you believe it? I haven't had occupational therapy since I was in school and that was August 2010. They finally found someone. I'm not too sure I am really excited about it but Mammy sure is and so is Luz my PT. Mammy and Bonnie have been doing the stuff that my OT's from EI showed them. Mammy is the one to push me I complain to Bonnie and she will stop. Hehehehe I have her wrapped around my little finger. I don't think my new OT will let me get away with too much if Mammy is around. Mammy sure does push me all she will say is "do it again" then she will say okay do it 2 more times and that will be it. Oh no its not she will make me do something else.
Today I was at the peds office for my yearly check up everything looked good. They gave me the PPD and then they started poking me to get blood out of me. It wasn't too bad they got it on the first poke. So we will see how things are when the results come in.
When we got back Mammy took me out of my carseat and then she made me stand up on the footpath until Bonnie brought my buggy around. Well I wasn't too happy with that but she made me do it. Luz my PT would have been happy to see that.

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On Sunday I was being called snaggle tooth but on Monday I looked like this

Tada now they are calling me big space

And my new teeth are all ready coming in so soon my big teeth will be here hopefully

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Lost another one

Yup on Monday morning when Bonnie was putting my shirt on my snaggle tooth fell out. So now I have a huge space where my 2 baby teeth used to be. Will get Mammy to take some pictures and post so you can see me now.

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