More baby pics

Since apparently these kids grow like weeds, I figured I'd show you a few new pics of the girls.

Here's Bella (I think)

Here's Andi

Here's both of them (Bella on the left)

Bella being a bad girl.  Don't you drink daddy's beer.

Mom, Piper and Nana.

Please excuse my hair, I just got up.

Happy Holidays

I hope that everyone is doing well and getting ready to share in the holiday fun.  I know it's been a while, but I figured I would give you an update to close out the year.

Andi and Bella have turned into little monsters.  They have found their words, but amazingly don't seem to want to say please and thank you.  Shocker.

As far as Piper goes, things are pretty much the same, maybe a little worse.  Back in October we went to Houston to see another specialist.  She confirmed the diagnosis (not that we expected anything different) and suggested a different formula to put her on.  It's called an elemental formula that is essentially partly or fully digested so it's easier for her to take in.  That seems to have helped some.  She also had a good 4-6 week run where she was waking up multiple times throughout the night.  I'd get up with her and try to calm her down.  After an hour, I'd hand her off to Belinda, etc.  Fortunately, she seems to have gotten past that for now.  She hasn't gotten up that early in probably a month or so.

Let's see, what else.  We put her on some new seizure medicine, but found out that it was causing crystals in her urine and that could lead to kidney stones.  Talk about kicking somebody when they're down.  So we switched to a different seizure medicine and that seems to be working.  We've also gotten hooked up with hospice to provide help and relief as needed.  So far we haven't needed a ton, but they do hand deliver her medicine, so we've got that going for us.  Which is nice.  Lastly, and this is a new thing, she's been suffering from some choking issues.  We think she is having a hard time swallowing her saliva, as it seems it is  building up in her throat then it seems like it either gets caught up in there or goes down the wrong tube.  Then she'll cough and cough and sometimes gag as she is trying to clear her airway.  Definitely not a pleasant turn of events.

Belinda is still in contact with the doctor in Cali and we are hopeful that the genetic test will come back positive and we can get her into the drug trial, but there is still no word on when that will be done.

Pictures of the girls

Belinda told me that I needed to post more pictures of the girls, so here you go:

Here is Andi (in red) and Bella back in June.

Here's another of the twins playing in our cool pool (Andi is standing)















And here are a couple of Piper.  Just chillin'

Last season on "All You Need is (Young) Love"

(if you want the full effect with music, turn up your volume, right click the "Soundtrack" link below, and select "Open in new window"

Soundtrack

When we last left our fearless family, we had just sold our house and were settling into a palatial 900 sqft apartment waiting for construction to finish on our new home.  Things have been moving pretty fast since then.  Andi and Bella have learned how to walk, are starting to jabber it up, and are learning how to manipulate their parents.  Ah, the good times.  Nothing like an infant that cries as if they've been shot in the foot, who is suddenly the happiest baby in town after being picked up by mommy (I'm looking at you Andi).  They've also learned how to poo four times a day.  Must be some kind of record.  I mean seriously, put a plug in it.  There will be plenty of time for that tomorrow, and the next day, and the next day...  I why must you scream bloody murder when I try to change your diaper.  Hello!  I'm not doing this for me.  How about a thank you next time.

And then the other shoe drops...

How does it go, "The good Lord giveth and the good Lord taketh away."  Well, I guess in our case, the good ole government giveth and the good ole government taketh away.  Or more appropriately, the FDA giveth and taketh.  What the heck am I talking about?  Well, we got a call from our doctor at Stanford (we'll call him Dr. A) last week and he informed us that because we didn't have an official "genetic" diagnosis for Piper, the FDA is not going to allow her to participate in the drug study.  Needless to say, we were not happy with this news.  Now I'm going to get into some of the scientific mumbo-jumbo to explain this more in detail, so if science gives you tired head, then all you need to take away from this, before you skip to the next paragraph, is that the FDA is a bunch of lazy assed, incompetent, pencil pushers who are more interested in collecting their union pension than doing their job and probably can't find their F'ing DA from a hole in the ground.

On the surprise ending

Well, it looks like my definition of "tomorrow" and yours is probably different, but here is the news you've all been waiting for.  About 3-4 weeks ago, Belinda posted about Piper's condition on a website where you can post questions and Dr's will read and provide input/answers to your questions.  So after Belinda posts a question about Piper, she is contacted by a doctor at Stanford University who is researching mitochondrial diseases (including Leigh's.)  One thing leads to another and it turns out he is leading a trial for a new drug that is showing some promise helping children with Piper's condition.  After talking with him some more, he tells us he want to include Piper in his study.  Now from what we've been told, they had another, unofficial study with about 1/2 dozen patients that showed "remarkable" progress as they went through the study.  This time around they are an official FDA approved study including about 3-5 children and Piper will be one of those.  We are still working out the details, but hopefully in the next couple weeks Belinda and/or I will start taking weekly flights to Stanford to begin treatment.  We're not getting our hopes up (at lest not a whole lot) but it is wonderful to at least have a way to fight back.

On a somewhat related note, without the tireless efforts of researchers like our Dr. at Stanford and Dr. Pascual (our specialist here in Dallas) these potentially life saving treatments would not be possible.  If you want to be part of the team striving to find a cure, you can help by visiting www.childbrainfoundation.org, a non-profit organization run by Dr. Pascual and his wife Albertina helping to raise money for research.

We're back!

Hello all!  Sorry for the long absence, but with apartment living, crazy work schedules and even crazier babies, I haven't had all the time I've wanted to keep the blog updated.  So, I'll give you a quick recap on our latest events (with a surprise ending.  ooohhhhhh!)

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.

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).

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.

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 Texags.com, 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.

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.

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 http://www.gdyounglove.net/triplets.

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.

Waiting

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.

Piper's Story

Piper Kate Younglove was born February 7th, 2009 at just 30 weeks along. Our little "chubster" was the middle of a set of triplets (Andi Elizabeth, Bella Ryan) and weighed in at a whopping 3lbs 4oz. She and her sisters came home after spending about 7 uneventful weeks in the NICU in Plano, TX. At first things seemed normal, well as normal as they can with triplet girls, but after about 3-4 months, her mother and I started noticing that things were not quite right.