Saturday 3rd October 2015- Full of laughs and smiles… :)


This morning the nurse told me that Leo had pulled out his feeding tube out of his nose during the night, she did not look too impressed that I did not hear him doing it but he must have done it so quietly and secretly like the normal Leo does when he is up to mischief, he can be like a little mouse…

So this morning was not nice at all to hear the nurses pushing the tubes back into his nose to go right down into the stomach, I had to step outside the room as it was horrible to see that being done to your little baby and hearing his pain noises again.

Anyway after that bumpy start Leo had a really nice day smiling a lot with his big sister, although Sofia was confused as to why Leo had one side of his hair long and other side short. I told her a bit more how Leo had something in his head that the doctors had to take out, she even asked me why Leos doctor did not notice it if he had it since he was born…she is a smart cookie and of course I had no answer for that. ..I just called his doctor a silly sausage. lol.  Sofia is frustrated and very upset with the whole situation which the psychologist said is normal, it would be worrying if she wasn´t.  She made a comment today and said ´Mummy its like Leo is dead, he can´t do anything´ I told her never to say that, but Leo is her best friend who she shared everything with and played with everyday so I can understand a little bit why she said that after how she sees him now.

We sang lots of songs together and Nana and Grandad visited him which he liked very much and he was full of smiles.

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The nurse tried to give Leo some drops of water in a tiny syringe, he was not too pleased at the beginning as he associates the syringes with medication. They did not know if he could even swallow or not but he did manage to eventually swallow a few drops of water.

Later in the evening another nurse tried another few drops and he would not swallow, she thought that he could not. It is going to be a very very slow process as the nurses advised us that first he has to have a few drops of only water from a small syringe, then a medium one, then a large one, then a bottle, then another liquid……….I did not actually realize until today or even think about it that they do not know if Leo can swallow or not. Lets see how he goes with it tomorrow.. I think it will be like the same process as having a newborn baby. But thank god he is still here that is truely the main thing.

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As Leo is having more control of his left hand one of us has had to sit with him all the time so he does not try and pull the tube out of his nose again. The nurses tried to restrain him by tying his arm to the bed but he just got mad and annoyed. (typical Leo). Then we tried to put a cushion on it, and he thought it was a game to try and lift the cushion up with his hand which of course he could, so plan B didn´t work either.

I bought a glove for him to go over the bandage so lets hope that works tonight!

Now for a good nights sleep in the apartment with my baby girl without hearing hospital monitors going off every five minutes.

Ohh thank you to all the people who have made donations on the crowdfunding website. There have been some substantial donations there without a name so we do not know who to thank but thank you to each and every one of you even if it is 1 quid or 500 quid we appreciate every single penny. xx


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