Have yourself a merry little christmas...

Oops. Sorry. It's been 6 weeks since my last update and there is lots to tell. Christmas, g-tube update, and general Charlie ridiculousness. Let's go.

Christmas: amazing. When you are the only grandchild on BOTH sides, have doting parents who are still slightly sympathetic about your heart condition, and an aunt and uncle who both have unlimited budgets when it comes to babies...well, it's a pretty good christmas, isn't it? Charlie got spoiled rotten. I couldn't begin to list all of the presents he got. On top of that, Christmas Day was the best day I think we've ever had with Charlie - he was in such a good mood (who wouldn't be?), played all morning, had a good nap, ate well...it was lovely. Children really do make christmas so much fun again. I can't wait for next year and the year after, when things start getting really fun!

G-tube: our dietician (Louise) recommended we try Charlie on only clear fluids overnight (so, 700mls of PediaLite rather then formula) and see how he does, eating-wise. We just finished day two of what Matt and I are calling 'The Hunger Games' and its going better then I predicted, certainly. He's not miraculously eating 1000 calories a day or anything, but he is holding his own. Tomorrow we'll find out if/how much formula to reintroduce, and go from there. It's pretty cool, though, that we are working towards getting rid of the tube. Charlie is certainly hungrier and more willing to eat textured foods then before, which is nice. He also now has a bedtime snack!

General Charlie ridiculousness: he is talking up a storm these days. He loves to repeat anyone and anything, including family, friends, and random grocery store strangers. It's almost like having a very large parrot sometimes. And it's adorable. He's short, but I have a feeling we aren't going to be able to hold him back from much. Charlie is also developing his sense of humour quite a bit, slamming doors in people's faces and shouting 'bye!' at every opportunity. That's fun until you get a door in the face.

Other stuff: we had an appointment at SK in December, and it seemed generally hopeful. They've booked Charlie for a sedate echo in April, so that will give us more information about his hearts recovery, and they also took him off one of his medications (Lasix, the diuretic). It totally freaked us out that he was just 'done' with one if his meds, and I don't think Matt and I will react well if/when they take him off his heart medications.

Also, during that appointment Charlie was fitted with a Mic-Key button, which is supposed to be easier then the g-tube he has now. Unfortunately, it ended up being a terrible weekend of 'Mommy? Tube? Ow? Mommy?'. Annnnd then he tried to yank the new button out of his skin. Good times. So, back down to the hospital we went and the procedure was reversed. A very expensive, annoying mistake. :( But, Charlie is comfortable again and that's what's important.

That is the update from around here. Please keep Charlie in your thoughts, but even more so, one of our buddies named Wesley who is currently fighting brain cancer at our hospital. He needs your thoughts more the Charlie right now, and I'm sure Charlie is willing to lend his fans to Wesley to help him on his journey to good health.

Have Yourself A Merry Little Christmas

 

Have yourself a merry little Christmas,

Let your heart be light

From now on,

our troubles will be out of sight

 

Have yourself a merry little Christmas,

Make the Yule-tide gay,

From now on,

our troubles will be miles away.

Here we are as in olden days,

Happy golden days of yore.

Faithful friends who are dear to us

Gather near to us once more.

Through the years

We all will be together,

If the Fates allow

Hang a shining star upon the highest bough.

And have yourself A merry little Christmas now.

Posted with Blogsy

Did I make you cry on Christmas day?

Charlie's first Christmas has come and gone. It was a day filled with all the good things a first Christmas should be - being spoiled by parents and grandparents and aunts and uncles, staying up way past our bedtime and enjoying good company all day long. I thought it would be more emotional for me - I thought I would spend the day thinking about future Christmases and where things were headed with Charlie, but, for once, I was able to live in the moment and enjoy every part of being a parent on a child's first Christmas.

Charlie got over his 'flu' as we are now calling it (the week-from-hell of not eating, crying unless he was being held, unable to sleep through the night) and immediately dove head first into a cold. When it rains, it pours. With the 'flu', we did end up taking him to the hospital, and they did wome tests (examines him blood work) and assured us whatever charlie had it was NOT heart failure related. Whew! But he had lost a bit of weight, so to keep food in him they changed his formula mix to regular strength, rather then the hyper caloric mix that is his standard. It did help him keep down his food, although the poops continued. I expect he lost a bit more weight but that it was nothing compared to what would have been the case had we not gone to the hospital and followed their advice.

So, about the cold. Who knew so much snot could occupy one little snub nose?! The poor kid can't breath worth shit, has given his dad the same cold, and is snorting and snarfing all over everything. I had to change my pajama top last night because the shoulder was covered - COVERED - in boogers. Appetizing, I know.

This second adventure-in-illness has made me so thankful we have the NG tube. He is literally unable to eat by mouth because he can't breath through his nose, so we have been tubing everything into him. He's keeping most of it down (two tiny barfs today - one, an ill-timed sneeze and the other was a I'm-crying-so-hard-because-I-want-to-be-with-the-people-so-I-puked barf) and I'm sure he's back to gaining. He is trying to eat each time we get out the bottle, and that's what's important to me.

So, second christmas comes tomorrow (i.e. the in-laws) and then we are having a dinner party on Thursday night. We go back to the hospital on Friday just to make sure we are back on the right track, and then it's really vacation time. The whole next week Matt has off (I know, us teachers are spoiled!) so we are planning on just relaxing. All in all, so far, a successful Christmas vacation.

Merry Christmas.

Did I make you cry on Christmas?/ Sufjan Stevens

This time of year you always disappear
You tell me not to call
You tell me not to call
And when the door is closed you're wearing different clothes
Or hiding in the paper, pretending not to hear

Inexpensive wine
I buy it all the time
You tell me take it back
You say you'll take a nap
But I can see it now
You always tell me how
I could do so much better
You said it in your letter

Did I make you cry
On Christmas day?
Did I let you down
Like every other day?
Did I make you cry
On Christmas day?
Did I let you down
On Christmas day?

The bed that isn't made
The broken window shade
The radiator's on
I loved you along
But I can see it now
You always tell me how
I could do so much better
You said it in your letter

I stay awake at night
After we have a fight
I'm writing poems about you
And they aren't very nice
I didn't mean to yell
I said I couldn't tell
I only grabbed your wrist
Or would you rather we kissed?

Did I make you cry
On Christmas day?
Did I make you cry
Like every other day?
Did I make you cry
On Christmas day?
Did I make you cry?