And that, gentlemen, is Bermuda Hybrid #5.

I loooooooove that movie. Who doesn't love some Dennis Quaid in baseball pants?!

Bruce Update :: Infusion went great. Too early for final hearing exam results but round 1 shows mild to moderate hearing loss from the meningitis. Judy at PT was impressed with rolling over but still pushing for more results - I like that about her. 

Momma Update :: New camera. It's Spring. I'm already worn out from the rain and appointments this week but I'm home and can work the online marketing galaxy in my pjs.....life is good. 

Papa John Update :: Got his new boots and they don't make his feet look big - his words, not mine. But his feet ARE big - my words, not his.

Daddy loves baby.

Baby loves bananas.

A lot.

Momma loves a happy baby.

 And chunky baby legs.

And Papa John's new boots (:

Top o' the mornin to ya!

Happy St. Patrick's Day! I've gone from celebrating in a bar with green beer to waking up to Bruce's own special pot of gold! Who doesn't love giving a cute baby a bath after a morning diaper blowout?!

It's been a great week so far! A couple nights ago, I was working on supper and John laid Bruce down on his back in the living room. When he walked back in after a few moments, little man was on his belly! After a few months of PT, we have a roller! I immediately gave up on creating a culinary masterpiece and hid behind the door to catch him on video...within a few minutes, I had plenty of proof!

The next scheduled infusion is Monday and I can't wait to see the looks on their faces after Bruce shows them his new trick!

The Feeding Saga :: Parents 1 pt , Bruce 0

Each day, feeding time is a like a box of chocolates. You just never know what you're gonna get with Bruce. 

So when he refused his bottle for the third day in a row, we added a little chocolate. 

That's right. Breastmilk + formula + thickener + chocolate malt Ovaltine.

I ended up spoon feeding it to him so he would have a taste of it and practice the spoon some more. 

This is the result! 

I don't think we solved the bottle drama but at least we know he's a chocolate malt kind of kid :) 

Sometimes you just need a good cry...

When I was supposed to be researching material for a blog that was due yesterday for work, I came across a story of a young family in Kansas who lost their little girl when she was 11 months old to cancer.

You can imagine the state of my eyes right now. And my work blog is not getting anywhere near done.

We are coming up on a year of all that we went through with Bruce. His first birthday is right around the corner in May and I should be so excited to start planning a great party for him. And I am. That little boy deserves nothing but the best and as his momma, I intend to do my best.

But I have so many emotions I thought I checked at the door when we checked out of Children's a few months ago. There is something to be said about anniversaries and I think looking back, I'm even more scared of what we went through as a family than when I was when we were living it daily.

There have been some issues with the enzyme treatment that Bruce receives for his Pompe Disease due to a shortage within the manufacturing company. Our AMAZING doctor called me yesterday when we were at the salebarn watching the second round of calves this year sell to fill me in about her trip to Boston last week to meet with the drug company suits. And any other doctor would have been mortified to their patient's mother answering the phone with an auctioneer screeching numbers in the background but not her - she knows how we roll and has seen a cow or two in her lifetime.

But her call was to inform that she has procured enough of the drug to last til his first birthday. Then he will start a new drug - the same exact drug as the first but because it is made in a bigger/different bioreactor, the FDA has not approved it and Children's has start a clinical trial and Bruce is the star of the show. The mountain of paperwork is underway and by time May comes, it will be smooth sailing.

Sometimes our doctor tells me too much info. I didn't even know she was flying to Boston to meet with the company. And I damn sure didn't know there was a shortage. But when I brag on her and say what a great doctor she is, I don't mean it half-heartedly. She's a bulldog. She will fight for Bruce until her last day because she is passionate about medicine and helping children. And I am grateful to God that he sent us to her. He knows, and she does too, that we can handle everything that has been put before us as parents to this little boy who has to live his life navigating through uncharted waters with a brave and happy heart.

He'll have a bad day now and then but because his momma is getting them out of her system now, she'll be there for him.