Thursday, April 22, 2010

It's a Festivus miracle!

We've finally gotten our TV and internet setup, so we can be back on the blog. The move to our spacious 2 bedroom, 2 bath, 900 sqft, resort style apartment has been excellent. And by resort style, I mean last resort. Andi and Bella have one room, Piper has the other, and Belinda and I have the living room/master suite all to ourselves. That's right, we've got our bed in the living room. But hey, it's cheap.

Wednesday, April 14, 2010

Just checking in

We have finished up the move, but don't have TV, phone or internet, so posting will be a bit spotty until we get that setup. Move went as well as could be expected (thanks to all that helped).

Sunday, April 11, 2010

Piper's back home

Just wanted everyone to know that Piper came home this afternoon. She is doing well, with her brand new 2010 Johnson and Johnson Turbo-charged feeding tube. We're busy finishing up packing the house (we move tomorrow) so we'll have more later.

Saturday, April 10, 2010

Speaking of Policies

I was looking for just the Naked Gun quote, but this will have to do.

Another midnight checkup, another upset nurse

If you've read the post about making the ER hate you, then you know we take a very pro-active approach when it comes how our kids are treated by medical staff. So, here I sit, surfing, flanked on both sides by a sleeping wife and sleeping baby, when in comes the nurse (nurse in training I think) for a midnight check-in on Piper.

Friday, April 9, 2010

Advice to all parents - or - how to make ER hate you and why that's a good thing

Ever heard the story of the 5 monkeys in the cage? You know the one where they try to climb up the steps to get the bananas and get sprayed with water? Well, unfortunately it's not too far from the truth, even in the medical profession. So, what's this got to do with why the ER hates us?

Piper's out of surgery and doing well

That's all we have to report right now. The surgery went great and she is currently sleeping.

Thursday, April 8, 2010

Surgery in the morning

Just wanted to let everyone know that we have decided to have the feeding tube (G tube) placed into Piper and she will be having surgery in the morning. This will allow us to pump food and medicine into her after she loses the ability to suck on her bottle. It is essentially a necessary evil, given her condition.

Club C-Med

Just wanted to provide everyone another short update on all that is going on. We're still chilling at Children's Medical Center, or Club C-Med as I like to call it. Unfortunately, last night we got booted out of the VIP section (ICU) and put into the Shoebox lounge (because it's about the size of a shoebox and smells like feet). But on the bright side, they did provide what amounts to a lawn chair that unfolds into a slightly less uncomfortable recliner. Think I'll get a few of these bad boys for the house. And what the hell is the deal with the nurses coming in, seeing that Piper is asleep, deciding to check on her IV to see if it's still bothering her (hello! If it was still bothering her she wouldn't be asleep!), waking her up, then leaving me to deal with a crying baby. Jackasses! But you didn't come here to hear me rant. That's why I have a rant page.

As far as the next few days go, Piper is getting an upper GI exam tomorrow, then we should have her scheduled for surgery on Friday to put in a G tube so we can feed and medicate her easier and do a muscle biopsy to try to identify the exact gene that caused the disease so we can check the other girls. Also got a smile from her today so you can check that out.

Also, my dad has a website that has a ton of pictures of the girls from birth to today. Feel free to check it out at

Tuesday, April 6, 2010

Back in the hospital

Just wanted to give everyone a quick update. After going through several of Piper's episodes last night, she started running a very high fever so we once again took her to the ER. They worked with her to get her fever back down and as we came to discover, her "not breathing" issues were actually a different kind of seizure than she had previously been experiencing. After stabilizing her, they transfered us to downtown Dallas where we've been since last night. She is doing better, but still has a lot of respiratory issues. Now we are just waiting for her condition to improve further before we get to the next set of decisions.

What are those you ask? Well this is a blog, so I guess I'll tell you.

Sunday, April 4, 2010


Waiting. We've all had our share of waiting. Waiting in line for a cocktail at a crowded bar. Waiting in line for a table at your favorite restaurant on a Friday night in Dallas (1 hr min, what the heck?). Waiting in line at the doctor's office. Waiting for your child to die.