Happy New Year!

Okay, so I'm a little late.  I'm thinking no one is surprised.

Unfortunately, 2012 started a little rough.  Nothing major.  It was just a harder weekend than usual.

On Friday night, Harlie had her BEST meal yet!  She willingly ate almost every single bite!  She was cooperative and it was a joyful experience.  I was so happy!  I thought to myself, "This is IT! This is the turning point"!

Then on Saturday morning, she had one of the worst feedings yet.  Ugh!

That is one of the harder things (I think) about having a special needs child.  The highs are the highest of highs and the lows are the lowest of lows.  It messes with you.  And it is exhausting.

It didn't help that I spent almost the entire day (Saturday) in the kitchen.  And I don't even cook!!!!  Or pretend to like to.

First, there's breakfast.  That's an ordeal in itself because none of my family eats the same thing for breakfast.  Tom and I don't really like the same thing for breakfast (he's on a health kick and I like scrambled eggs with cheese, pierogies - thank you Maryann - and maybe a bagel, with a Diet Coke, of course).  Cooper has his eating issues (picky, picky, PICKY!) and Murphy seems to only want pancakes lately.  Then there's Harlie...

So, after everyone eats, there's cleaning up to do.  And we were running low on Harlie's food.  So, I made some things for her and pureed them.  There's the pureeing, the pouring, the labeling, and the clean up.  Make something else, and do it all again.

Keep in mind that while I'm doing all this - Tom was outside taking the Christmas decorations down and cleaning up the garage.  So, I'm getting interrupted every two minutes to encourage sharing, take Harlie potty, help with Play-doh, change Cooper's diaper, fix the boys snacks, give Harlie water and meds, etc.  And I had to take down the inside Christmas decorations.  No problem!

The next thing I knew it was time to feed everyone lunch.  That made a mess, of course, and after everyone was fed, it was time to clean up - yet AGAIN!!!

And after all that bleeping time in the kitchen pureeing Harlie's food - she REFUSES to eat it!!!

The worst feeding EVER came Sunday morning.  It was the first time that we had to pretty much quit.  It's so important to end a feeding with Harlie taking a bite.  I don't think that happened - for the first time ever.  She flat out refused to open her mouth.  Despite all motivators, etc.  She REFUSED to eat.  It was the worst.

And I can't explain how frustrating that is.  She needs to eat 40 ounces per day to maintain/gain some weight.  I can't just let her skip a meal.  And she would starve herself.  The "no kid has ever starved themselves" advice does not apply.  And while we're dealing with her issues, Cooper and Murphy are there - needing something.  There is no such thing as uninterrupted time when all three kids are home.  And Harlie's feedings are now back up to the 45-60 minute time frame.  The more she fights, the longer it takes.

So, Tom's frustrated, I'm frustrated.  We're both feeling the stress and so then we do what anyone else would do.  We yell at each other.  Well, it's not really THAT bad.  I'm just saying it's stressful.  And it's no fun.

Luckily, I got to leave.  I went and met two of the girls that I trained for the marathon with - Niki and Kat.  We are all nursing injuries, so we wanted to run just an easy three miles.  It was the first time since November 20th that Kat or I had run.  She's also got an IT band injury.

Well, let me tell you how great that was!  It was raining (and I don't run in the rain) but I didn't care.  It felt so good to put my running clothes on.  It felt so good to be running with friends and seeing other runners out.  It felt so good to talk to my friends again - that's therapy for all of us!  I knew I was missing running (have been on strict rest orders to let my IT band heal) but I really had no idea just how much.  It was so healing physically (stress reliever) and mentally!

That afternoon we went to watch the Steelers game at a new place.  The place that the club (Steelers fans) watched the games before just closed.  So, they found a new bar/restaurant, and this weekend was the first time there.  It is non-smoking (woohoo!) so I wanted to go to check it out and see if it would work to take our kids there in the future.  We've never been able to do that because of the smoke (a total NO GO with Harlie's trach and lung issues).  Personally, I loved the new place.  And they won, so the weekend ended on a good note.

Oh!  And Jennifer (one of Harlie's nurses) and her husband came up to watch the game, too.  During half time there is a give away for club members.  I gave her one of our tickets and she won a Steelers scrub jacket.  How funny is that?  She hasn't been to a game in forever and I've never seen them give away a scrub top.  Funny.

Anyway, I'm glad the weekend is over.  And I'm thrilled that the kids went back to school today!  YAY!  We were all more than ready to get back into routine again.

And to end this post on a positive note - Harlie had a better day eating today.  I'm not going to read into it anymore (yeah, right).  I'm just going to enjoy it when it happens.  We'll see...

Thanks,
~Christy