Piper Kate Younglove 02/07/09 - 01/16/11

Just wanted to pass along to all of you that follow the blog, that Piper passed away this afternoon, peacefully in her mother's arms.  I wish there was more to say, but thank you for all your prayers and messages.

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.