Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Tuesday, September 27, 2011

Good day sunshine

I'm sitting at our dining room table, relaxing with a cup of tea with the oldies station on, while Charlie sleeps and Matt reads a book. All very idyllic, if my thoughts weren't consumed by DCM and the constant worry that entails. I am trying to enjoy these moments, I really am.

Yesterday was a great day. Charlie ate a lot out of each bottle, ate all (!) of his cereal, and didn't barf. He hadn't barfed in a week! This was a new record for us. I should have known it was all going to go to shit the next day. I will say, though, that I am getting better at taking it day-by-day - I really did enjoy the good day while it lasted. I went to bed last night feeling at peace.

This morning, Charlie was still ok. Then, he didn't want his 11am bottle nor his cereal (he took two spoonfuls before making the adorable 'no thanks' face (posted below - you know that phrase about 'a thousand words'?). Then, he barfed. A small one, but still - I become so hopeful that he's going to keep everything down and use those calories. Once I got over the initial clean-up, though (this one didn't even require a change of clothes on either of our parts!), I realized that there were other reasons he might have gotten sick, including the tube going too fast, or the water we use to syringe the NG tube afterwards might have been to fast, or too cold, or both. In any case, his 3pm feed went well and the nurse who visited today says he's doing fine.

It's hard to take the good days with the bad ones. Obviously, I just want every day to be good, and maybe one day we'll get there. For now, though, I am willing to take the good ones with the bad no matter how hard it is - at least he is having good days! The first lyric of the below really speaks to me: "I need to laugh..."

**The 'no thanks face' is not a recent picture, so here are TWO pictures for your viewing pleasure - the second is our recent apple-picking adventure.**













"No thanks!"



Happy apple picker?


Good Day Sunshine - The Beatles

Good day sunshine
Good day sunshine
Good day sunshine

I need to laugh, and when the sun is out
I've got something I can laugh about
I feel good, in a special way
I'm in love and it's a sunny day

Good day sunshine
Good day sunshine
Good day sunshine

We take a walk, the sun is shining down
Burns my feet as they touch the ground

Good day sunshine
Good day sunshine
Good day sunshine

Then we lie beneath a shady tree
I love her and she's loving me
She feels good, she know she's looking fine
I'm so proud to know that she is mine

Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine

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