Thursday, 12 January 2012

New Year, not so new Lewis :s

I wanted to try and update the blogs at the beginning of each month at least, but i have been so busy and just don't seem to get the time! so anyway it's after midnight and here i am doing a quick update before bed!

Lewis has gone back to being Lewis, not much of an interest in food again at the moment, so yeh the CDH rollercoaster is still going on here, 10 steps forward, 50 back, but we just have to keep on working at it and hopeing next time he goes through his interest phase, it'll stick!
Lewis had a great xmas, spoilt rotten as usual, didn't even bother when he was told to say goodbye to the xmas tree a few days later as santa was coming for it while he slept cos he needed it back.
His speech is even more amazing now, i can understand most of what hes saying and he's onto stringing some 3 words together!
We took delivery of a backpack today for his feeds, so he can now be pumpfed at his 3 feeds through the day, we're working at finding a rate he'll tolerate though as he's only tolerating 43 mils per hour through the night at that's when he's sleeping and relaxed, started him a bit higher today but nope didn't like it so had to turn it down, hopefully an increase of 1 or 2 mils at a time will work, fingers crossed! he was good at keeping the backpack on although a few times kept coming to me and saying 'pump off' like he does when he wakes in the mornings, but some quick distractions soon fixed that :)
I sort of felt that going to pump feeds through the day was something we always tried to avoid as that way seemed like he would be on continuos feeds due to his lack of toleration of amounts so feels like we've gone backwards a few steps too but a the same time i was rather excited about it but only because he always protests getting his feeds throuhg the day, we have to practically hold him down on the sofa while he screams and kicks, and then feed goes everywhere and it's really just not a nice experience for him to associate with feeding, perhaps giving him more fear about anything that fills his belly up!
He is also getting a little more 'clingy' to me, like he won't let daddy put him to bed etc and if he's taking him downstairs he looks at me with sad eyes crying saying mummy lol so cute and maybe like once a day he'll give me a cuddle when i ask for 1 and a kiss and says love you, and maybe couple times a day he'll sit beside me and lay his head on me or put his arms wound me without being asked, waited over 2 years for any kind of affection willingly without prompting from him and it was really worth the wait :)
Just realised it's now 12th January, 2 years ago today we brought our beautiful sunshine warrior home after only being told the day before, 'how about home tomorrow' omg really :) and here he is, still faced with many CDH related challenges, but still battling on like the warrior he is :)

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