tag:blogger.com,1999:blog-10036933432079105842024-02-18T23:26:07.050-06:00All You Need is (Young) Love.The best freakin' blog on the interweb.
Trust me.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-1003693343207910584.post-66847539663641568452011-01-16T21:51:00.000-06:002011-01-16T21:51:33.738-06:00Piper Kate Younglove 02/07/09 - 01/16/11Just 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.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEILixyOh7QFaFrrGEs-V0JLBt5w7vAjUyGIzKaNKp0NiUsqoNauO3ybvPfkoABQjXet4qvlXfSIDhDQsT7I4iH2QDt1a0jiVGgdsgve20T8pQQ8XgkFwcmtjYDR7JXNimKkDwsBBRqkMe/s1600/Piper2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEILixyOh7QFaFrrGEs-V0JLBt5w7vAjUyGIzKaNKp0NiUsqoNauO3ybvPfkoABQjXet4qvlXfSIDhDQsT7I4iH2QDt1a0jiVGgdsgve20T8pQQ8XgkFwcmtjYDR7JXNimKkDwsBBRqkMe/s320/Piper2.jpg" width="317" /></a></div>Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com34tag:blogger.com,1999:blog-1003693343207910584.post-52330576083993993672010-12-13T22:58:00.001-06:002010-12-13T22:59:37.122-06:00More baby picsSince apparently these kids grow like weeds, I figured I'd show you a few new pics of the girls.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimytW31qEKL0fYymWJM_iX_O5ywNsrkXmr6UKpRZ-on7vCdtX0ep13yzSiHJTcGXcjTXg9Ctteurt01XsjMcaufL1_qatGXXZ6DtZHX46gFMlDguQG_zJLm5NlcjLJj9odHKW0i7uNrl_p/s1600/ChowTime.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimytW31qEKL0fYymWJM_iX_O5ywNsrkXmr6UKpRZ-on7vCdtX0ep13yzSiHJTcGXcjTXg9Ctteurt01XsjMcaufL1_qatGXXZ6DtZHX46gFMlDguQG_zJLm5NlcjLJj9odHKW0i7uNrl_p/s320/ChowTime.JPG" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's Bella (I think)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL3BQFghbgdXR9yKgJJed0V_NXC-RcrvrwmDp6We2Ty7my5DSzssY8SS5DPpgdGejGdIZmSkMroEc8jAMhPp3ntX8iiteRXw29epWo_wd2sxOLQvl3Cbst9Xf3EIArvMrp-Hi8eiW71yjH/s1600/ChowTime2.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL3BQFghbgdXR9yKgJJed0V_NXC-RcrvrwmDp6We2Ty7my5DSzssY8SS5DPpgdGejGdIZmSkMroEc8jAMhPp3ntX8iiteRXw29epWo_wd2sxOLQvl3Cbst9Xf3EIArvMrp-Hi8eiW71yjH/s320/ChowTime2.JPG" width="174" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's Andi</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBF0PKsK7mVOJG0aOykYlMZfQ4C0gKYZ8jgSAV9ydO68LN3-D6dQbrxAES_ORvAeN9BqTKZwJCRYzTOi2TfH-uZiQ2HYGGFHwsw8HIfWQdohAUup6t-2sVEmXxt79NmdCnSWI2NYNHUUFO/s1600/IMG_4866.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBF0PKsK7mVOJG0aOykYlMZfQ4C0gKYZ8jgSAV9ydO68LN3-D6dQbrxAES_ORvAeN9BqTKZwJCRYzTOi2TfH-uZiQ2HYGGFHwsw8HIfWQdohAUup6t-2sVEmXxt79NmdCnSWI2NYNHUUFO/s320/IMG_4866.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's both of them (Bella on the left)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtiGlQ9X1Or9trWiY5n9ACSKTTZeKIQX9D7JmmwmxwJbqyrbQo-cksQ381Pd_-27deUc1wmTE54RhZsz4N9OLwL-Vuz_hrsUHvBygK03dLy5YPqRuyUiKg-6Hbhze-3pLoBlOy5VHcioAy/s1600/IMG_4867.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtiGlQ9X1Or9trWiY5n9ACSKTTZeKIQX9D7JmmwmxwJbqyrbQo-cksQ381Pd_-27deUc1wmTE54RhZsz4N9OLwL-Vuz_hrsUHvBygK03dLy5YPqRuyUiKg-6Hbhze-3pLoBlOy5VHcioAy/s320/IMG_4867.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bella being a bad girl. Don't you drink daddy's beer.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI59yez3XUtV7b9qoV9-bifbotvOgJxB1IQ76PDcdEobWZFGNMXpTYOTGsfFfl1UswseUjG3Q_XMQQOVnDySxnUkn11sVQzflOkNFUG-ZZcDme4wiYeHMrdz8k2qwLJbxun8ASGNhbJ0pU/s1600/92.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI59yez3XUtV7b9qoV9-bifbotvOgJxB1IQ76PDcdEobWZFGNMXpTYOTGsfFfl1UswseUjG3Q_XMQQOVnDySxnUkn11sVQzflOkNFUG-ZZcDme4wiYeHMrdz8k2qwLJbxun8ASGNhbJ0pU/s320/92.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom, Piper and Nana.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWlYflT6KQfpWGCibvIyizw4QGfD4Heoa4yYQj8yB58NUG-l2Wre1tgo0pgLXpSWrf5CslDMpkoTuIhyWUGgZ7ayVOGdFJSKsWuO_OVI7u_ES7vQtr4fm3F58LC2P0BuenOu_EVu1xa5fe/s1600/86.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWlYflT6KQfpWGCibvIyizw4QGfD4Heoa4yYQj8yB58NUG-l2Wre1tgo0pgLXpSWrf5CslDMpkoTuIhyWUGgZ7ayVOGdFJSKsWuO_OVI7u_ES7vQtr4fm3F58LC2P0BuenOu_EVu1xa5fe/s320/86.jpg" width="317" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Please excuse my hair, I just got up.</td></tr>
</tbody></table>Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com1tag:blogger.com,1999:blog-1003693343207910584.post-82928787563207696662010-12-13T22:46:00.000-06:002010-12-13T22:46:52.668-06:00Happy HolidaysI 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com0tag:blogger.com,1999:blog-1003693343207910584.post-9276261032956039892010-07-27T22:27:00.002-05:002010-07-27T22:29:23.286-05:00Pictures of the girlsBelinda told me that I needed to post more pictures of the girls, so here you go:<br />
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Here is Andi (in red) and Bella back in June.<br />
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Here's another of the twins playing in our cool pool (Andi is standing)<br />
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And here are a couple of Piper. Just chillin'<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSS0LbhPoP7z0a4F3CGc6DRGXYSCyQ078x7eLL9PZj3GINU7FSY1yWru0LpSx7EoP9hhigcwFzdZax1Oz-4wTT87E41c71RNAKhvfkzeF2l8gtPfYT_a2whwbVuhXBG-tMW5X3V_TIDXs4/s1600/img_3363.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSS0LbhPoP7z0a4F3CGc6DRGXYSCyQ078x7eLL9PZj3GINU7FSY1yWru0LpSx7EoP9hhigcwFzdZax1Oz-4wTT87E41c71RNAKhvfkzeF2l8gtPfYT_a2whwbVuhXBG-tMW5X3V_TIDXs4/s320/img_3363.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ1Tb7IgwTHdsNfPvAiNqN8czP1Oy289apuOy1MSNJoHsiCvVe6iQIuNmfbOVqpQ46r77fbluIgaH946H9dnW4bQ73jjb-wlxUUdjgx4fREtOeebWF7PMy-ZZ3-y7O4MwLMWAAtFevYX-V/s1600/DSC00917.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ1Tb7IgwTHdsNfPvAiNqN8czP1Oy289apuOy1MSNJoHsiCvVe6iQIuNmfbOVqpQ46r77fbluIgaH946H9dnW4bQ73jjb-wlxUUdjgx4fREtOeebWF7PMy-ZZ3-y7O4MwLMWAAtFevYX-V/s320/DSC00917.JPG" /></a></div>Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com2tag:blogger.com,1999:blog-1003693343207910584.post-59552179038309417332010-07-22T22:32:00.064-05:002010-07-26T22:05:08.789-05:00Last season on "All You Need is (Young) Love"<blockquote>(if you want the full effect with music, turn up your volume, right click the "Soundtrack" link below, and select "Open in new window"</blockquote><br />
<a href="http://love-my-oldies.freehomepage.com/music/oldies/Issac%20Hayes%20-%20Shaft%20Theme.mp3">Soundtrack</a><br />
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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.<br />
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Anyway, Piper is stable as she can be. She hasn't gotten any better, but she also hasn't gotten any worse. Belinda has just finished taking her to a sleep study to see how her breathing and oxygen intake are going at night and we should have the results back pretty soon. She also has scheduled an appointment this October in Houston with another doctor to see if they have any different treatment options they can recommend. And finally, we are still waiting on the results of our blood tests and muscle biopsy's to see if we can get Piper back into the drug study in California. We still have a place reserved, just need to "official" diagnosis, so wish us luck.<br />
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Lastly, on to Belinda and I. Unfortunately I have some difficult news to report. After five years of marriage, we are still madly in love. (gotcha!) Okay, so madly is pushing it a little bit, but how about happily married. There's always things to work on, but we seem to be weathering the storm as best we can. She's still the best thing that happened to me (not counting Levi, but hey who can compete with man's best friend) and I hope she feels the same way too. Or at least reads this and I get some bonus points. And speaking of bonus points, for our five year anniversary I surprised her by taking her back to where we got married and had father Tony and the rest of our family meet us there to renew our vows. Ha! Bonus points for life!Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com3tag:blogger.com,1999:blog-1003693343207910584.post-25920548621757662382010-05-25T22:59:00.005-05:002010-05-25T23:08:01.878-05:00And 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.<br />
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<a name='more'></a>Now, what do they mean by an official "genetic" diagnosis? So Leigh's syndrome is a mitochondrial disease caused by a genetic defect. The mitochondria are part of the cells of your body and convert the energy of the food we eat into ATP, which is what powers your brain, muscles, etc. Since this is a genetic disorder, they should be able to identify which specific gene is defective and causing Piper's issues. However at this point they have not be able to identify her specific gene abnormality. Also, they estimate that there are probably two dozen different genes that can cause these disorders, but they have only specifically identified about half of those. So even though both of our specialists, including several other neurologists, after examining Piper, her MRI's, blood tests, etc. have confirmed that she has Leigh's, the FDA in its infinite wisdom won't let her into the study without the positive genetic test. Here endith the (science) lesson.<br />
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While this is definitely a set back, all is not lost. When Piper was having her G-Tube inserted, the surgeons also took a muscle biopsy that has since been sent to Columbia for genetic testing. If they are able to identify the specific gene that is causing the disease, then we should be able to get back into the study. Also, Dr. A is just starting up a gene sequencing study that will analyze over 500 different human genes, and he has asked us along with Piper, to participate (which we have accepted.) The hope here is that as they analyze all 500+ genes, they will find a mutation or abnormality with one of Piper's genes. With that "proof" our doctor hopes he can use that to convince the FDA to allow Piper to participate. Now personally I think that most of this issue is due to the fact that Piper is a female, because we all know that it's impossible to find genes for a woman (rimshot!).<br />
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All joking aside, I really want to thank the tireless efforts of Dr. A as he has fought, wrangled, bartered and begged to try to get Piper in, and he hasn't given up. We greatly appreciate his, and everyone's dedication, drive, prayers and support as we go through this journey. <br />
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So, in summary, "Dear FDA. Go **** yourself. Sincerely, me."Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com4tag:blogger.com,1999:blog-1003693343207910584.post-14771518570750535492010-05-18T00:37:00.001-05:002010-05-18T14:18:21.067-05:00On the surprise endingWell, 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.<br />
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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 <a href="http://www.childbrainfoundation.org/">www.childbrainfoundation.org</a>, a non-profit organization run by Dr. Pascual and his wife Albertina helping to raise money for research.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com1tag:blogger.com,1999:blog-1003693343207910584.post-88261634632724262092010-05-12T00:02:00.000-05:002010-05-12T00:02:52.050-05:00We'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!)<br />
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Ever been to the mall? Of course you have. Ever taken the elevator? Sure. Ever got stuck in the elevator with three screaming babies? Well looks like we've got one on you. Two weeks ago we took the girls on another excursion to Northpark mall and as luck would have it the Good Humor God's decided to play a prank on us and lock us in a 6x6 tin box for about 20 min. Fortunately the girls didn't scream too badly and we got out of there after not too long. After we got out I asked the mall staff if we could get a few coupons for the trouble. Apparently it takes more than 20 min in the hot box to earn a free slice of pizza at Sbarro.<br />
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Speaking of food (and malls) a few weeks ago we met our good friends Jeff and Kasey (with their 15 month old twins and 3 year old in tow) at the Galleria for a little kiddie play time and dinner at Mi Cocina. You should have seen the look on their face when we showed up and asked for seating for 6 plus 4 high chairs. As we say back in Mexico, Aye Carumba! And what's up with babies and their eating habits? They act like a starving man at a pie eating contest. Food all over their face, hands, floor, you name it. Not that I mind the mess, but that freakin' quesadilla cost $12 and you threw half of it on the floor! Why don't I just give you a stack of hundies and a book of matches and just cut out the middle man. Jeeze these kids are expensive.<br />
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Speaking of malls again, who took their kids to the mall for pictures with the Easter bunny? (As an aside why, do you ask, do we spend a lot of time at the mall? We'll it's air conditioned, free (sometimes), and the crowd noise covers up three screaming kids.) Yeah, we ended up at the mall on Easter Sunday with the kids and found ourselves in line for a picture. It's really funny watching how serious some people get about this. One lady in front of us must have spent close to 10 minutes trying to get the "perfect" picture of her kids while the line stacked up like I-635 on a Friday afternoon. You know, maybe, just maybe, if you want the perfect Easter picture, you should fork over the cash for professional pictures instead of waiting in line for 30 min to get that once in a lifetime photo with Crazy McBunny. Seriously. Check out the eyes on that freak. Probably all hopped up (get it? hopped up) on Grey Goose and carrot juice. He and Snoop Dog probably sit around smoking doobies singing, "Sipping on Goose and Juice!"<br />
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Well I know I promised a surprise, and I will deliver, you'll just have to wait until tomorrow because it's late and I've got some Lost blogs to go read.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com1tag:blogger.com,1999:blog-1003693343207910584.post-54207860480228668422010-04-22T21:41:00.000-05:002010-04-22T21:41:12.134-05:00It'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.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com0tag:blogger.com,1999:blog-1003693343207910584.post-1056619365093505642010-04-14T14:56:00.000-05:002010-04-14T14:56:58.487-05:00Just checking inWe 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).Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com0tag:blogger.com,1999:blog-1003693343207910584.post-56249221140052057482010-04-11T20:50:00.000-05:002010-04-11T20:50:25.984-05:00Piper's back homeJust 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.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com3tag:blogger.com,1999:blog-1003693343207910584.post-14547413979007941582010-04-10T01:21:00.007-05:002010-04-10T01:45:32.717-05:00Speaking of PoliciesI was looking for just the Naked Gun quote, but this will have to do.<br />
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<object height="240" width="450"><param name="movie" value="http://www.youtube.com/v/k4ui_eQF4oE&hl=en_US&fs=1&"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/k4ui_eQF4oE&hl=en_US&fs=1&" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="450" height="240"></embed></object>Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com1tag:blogger.com,1999:blog-1003693343207910584.post-74842746843894350942010-04-10T00:19:00.004-05:002010-04-10T01:29:44.149-05:00Another midnight checkup, another upset nurseIf 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. <br />
<a name='more'></a>I check her out from the corner of my eye, ready to intercede if I think she's going to disturb Piper. She uses a stethoscope to check her breathing. Then she grabs a flashlight and checks her IV, squishing Piper's arm around. (I start to get up.) Then she messes with her incision sites. (I get to the bed side.) She checks Piper's feet. (Piper's eyes open.) I ask the nurse, "Did you wake her up?" "Yeah, I think so," is the response. (Geof's starting to get upset!)<br />
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Now, for those of you who've had extended stays in the hospital, you're probably very familiar with the "big board" You know, the big monitor next to the bed that continuously reads out the patient's heart rate, blood oxygen concentration, respiratory rate and blood pressure. Well Piper's got one of those hook-up's too, so I start to think, is all this really necessary? Isn't her getting a good night's sleep, especially since she hasn't eaten in 24 hours, more important?<br />
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So the nurse finishes giving her some pain medication, which unfortunately doesn't seem to help, and I tell her I have a few questions. We step outside and I ask her what's the schedule for the rest of the night. She tells me that they will be coming in every 2 hours to check her and that they plan on taking blood at 4 am to check the level of her seizure medication. (Now, we had already talked to the specialist about this and they plan to monitor this over the next several weeks so they can appropriately adjust the medication depending on how quickly she's processing it. So to my tiny brain, I think, 4am, 7am, what's the difference?)<br />
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Now the fun begins. I tell both her and our main nurse, that I want them to check with neurology and see about moving the blood test to 7am so that we don't disturb Piper. Then I tell her that I don't want them coming in and disturbing Piper every two hours, because she needs her sleep. The nurse in training objects and states that they need to check her IV, among other things.<br />
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"Why," I ask.<br />
"Because it's our policy," she responds.<br />
"I don't care about your policy," I retort. "If you need to send someone else down here to talk to me about it, I'll be happy to discuss it with them."<br />
"It shouldn't be an issue," says the main nurse. "We'll come by and talk to you if there is a problem."<br />
"Thank you."<br />
(Nurse in training walks off and is consoled by main nurse)<br />
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And there you have it. (Well not quite. The main nurse comes by a few minutes later and explains why it's really important to check the IV and make sure it isn't backflowing or something like that. It sounds like fair rationale and I tell her that sounds good. I don't have a problem with them checking on that and I apologize if I was rude or insensitive earlier. See, we're not unreasonable.)<br />
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And 1 hour after it started, Piper is still crying.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com6tag:blogger.com,1999:blog-1003693343207910584.post-77933350496925937122010-04-09T17:25:00.006-05:002010-04-10T01:32:25.158-05:00Advice to all parents - or - how to make ER hate you and why that's a good thingEver heard the story of the <a href="http://www.mwls.co.uk/anecdotes/5monkeys.htm">5 monkeys in the cage</a>? 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?<a name='more'></a><br />
Well at some point in your life, you are going to have to make a trip to the ER. In our case, sometimes it's been because of true urgent situations and other times it's because our specialists need to run some tests on Piper and going through the ER is the easiest way (for them, not for us) to get admitted to a room. Now I don't know about you, but it can be a bit intimidating what with all the activity and official looking people taking temperatures, blood pressures, ordering tests, putting in IV's, etc. And unless you are a doctor, nurse, or been through this eleventy billion times (here!) you tend to believe that everything they are doing is necessary and vitally important. And why wouldn't you? These are trained medical professionals.<br />
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But a funny thing happened on the way to the ER for what seemed the 100th time. We started to ask the question, "why?". (I must give credit to my beautiful wife Belinda as she was the first to ask this question and informed me so with a text message while at work stating that, "the ER hates me.") Now, as the story goes Belinda took Piper to the ER, under the direction of our doctor, to have a nasal feeding tube inserted (NG tube) and for them to show us how to take the tube out and reinsert it, if necessary. So, after she gets to a waiting room in the ER a nurse enters, and what is the first thing she wants to do? Anyone? Bueller? That's right. She wants to put in an IV. And that's when Belinda asked "why?" This was a non-invasive procedure and she wasn't in any medical emergency, so why do you want to inflict pain on my baby, who's already going through enough of that, when it doesn't seem necessary.<br />
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Nurse, "It's our policy."<br />
Belinda, "But we're only here for you to show us how to insert and use an NG tube."<br />
Nurse, "Well it's just what the doctor order in the chart."<br />
Belinda, "Well it doesn't seem necessary and I don't want you to do that."<br />
Nurse, "uhhh, Ok. (visibly irritated). I guess I can go talk to the doctor and see if we <span style="font-style: italic;">really</span> need to do this"<br />
Belinda, "Thanks"<br />
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-- 5 min later --<br />
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Nurse, "I talked to the doctor and he said we don't need to do this."<br />
Belinda, "Thanks. (a small victory smile appears)"<br />
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Later another nurse comes back and tries again, this time attempting to take her blood while she's asleep, but now we've seen the man behind the curtain. If it doesn't feel right in your gut, then challenge it, because if you won't nobody will. The nurse leaves without her blood.<br />
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Now, I could go on and on with all the different stories (like how we had our anesthesiologist replaced right before Piper's surgery), but I think you get the point. I guess the bottom line is, don't be afraid to ask "why" or say "no". Why are you doing this procedure? What is that medication you are giving her? Does she really need it? Why do you have to come in every 2 hours and wake her up to check on her? Make them explain to you why they are doing something and apply common sense. If it sounds okay, go with it, if not, ask more questions. They may get frustrated with you. They may start to hate you. But don't let that stop you, because in the end you are looking out for your child.<br />
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Lastly, please do not take this post as a bash on doctors, nurses and other medical professionals or the jobs they try to do. They perform a somewhat thankless job, where miracles are expected but rarely delivered. And even though they really are looking out for the best interests of your child, nobody's perfect, mistakes can be made, and you're the last line of defense for your child's welfare. <br />
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So thanks to all the doctors, nurses and medical professionals who have helped us along the way. You've taken an unbearable situation and made it barely tolerable.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com3tag:blogger.com,1999:blog-1003693343207910584.post-69306092816191387872010-04-09T16:44:00.001-05:002010-04-09T16:45:39.975-05:00Piper's out of surgery and doing wellThat's all we have to report right now. The surgery went great and she is currently sleeping.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com2tag:blogger.com,1999:blog-1003693343207910584.post-86053041172428267042010-04-08T23:57:00.002-05:002010-04-09T00:00:45.689-05:00Surgery in the morningJust 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.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com5tag:blogger.com,1999:blog-1003693343207910584.post-7501296886657991532010-04-08T00:52:00.003-05:002010-04-08T01:40:17.302-05:00Club C-MedJust 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.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikKSQPhxwN69ph3IhKaf74hnDiys2c_PRFu7pYN5EbeLQEHBZb5jr5FRuJfuwHGlG5Fqm98dW3R20Y7SZAfHgGTV3C_TfiKcPY7TWIzuMIbehwDj1RBIcedpW5kmP3j9Knrn_Mwu_-Ybx-/s1600/IMG00108.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 236px; height: 178px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikKSQPhxwN69ph3IhKaf74hnDiys2c_PRFu7pYN5EbeLQEHBZb5jr5FRuJfuwHGlG5Fqm98dW3R20Y7SZAfHgGTV3C_TfiKcPY7TWIzuMIbehwDj1RBIcedpW5kmP3j9Knrn_Mwu_-Ybx-/s320/IMG00108.jpg" alt="" id="BLOGGER_PHOTO_ID_5457652558479816930" border="0" /></a><br />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.<br /><br />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 <a href="http://www.gdyounglove.net/triplets">http://www.gdyounglove.net/triplets</a>.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com2tag:blogger.com,1999:blog-1003693343207910584.post-82032903459340105772010-04-06T01:07:00.004-05:002010-04-10T01:35:25.307-05:00Back in the hospitalJust 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.<br />
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What are those you ask? Well this is a blog, so I guess I'll tell you.<br />
<a name='more'></a>Because this is a degenerative disease, normal body functions either don't work at all or deteriorate over time. For example, Piper has never been able to roll over or hold her head up. She can drink from a bottle, but that skill is starting to diminish making it difficult to get her the nutrition she needs. We also need to give her all of her medication by mouth, which includes two different presciptions to control her seizure, but with her declining ability to swallow even this is becoming a challenge. So the only real option we have at this point is to have a G tube (gastric tube) surgically placed into her stomach so that we can feed her and give her medication.<br />
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Here's the rub. She needs the G tube so that we can continue to feed her and give her the medication to help with her seizures and reflux, etc., but because of her condition, she is at high risk to not even survive the surgery. Further complicating matters is that the doctors won't perform surgery on her unless her condition improves. So assuming her condition improves, we can take her home and continue to feed and medicate her and maybe get her strong enough for surgery. But if her condition worsens, we may not be able to perform the surgery, which means we won't be able to give her the medication, which means her seizures will keep getting worse. Or we decide to have the surgery as soon as we can and risk her not surviving.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com0tag:blogger.com,1999:blog-1003693343207910584.post-54355760054324756742010-04-04T15:30:00.008-05:002010-04-10T01:37:02.624-05:00WaitingWaiting. 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.<br />
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It's funny how we came to be in this place. From no kids, to three kids, we lapped all of our friends with one splitting of an embryo (except for one crazy set of friends who think 4 kids is a good idea. Just had to out do us, didn't you.) We had weekly appointments with OBGYN's and Maternal/Fetal doctors. Enough sonograms to wall paper a nursery (we'll I thought it was a good idea). A case of absent diastolic flow with Bella that led to 6 weeks of hospital bed rest and daily monitoring for my wife Belinda. An emergency delivery at 30 weeks including an all expenses paid stay in the hotel NICU. But from there things actually got better. We thought we were really lucky. No real issues in the hospital, aside from a few personality conflicts with the nursing staff. Our kids were "feeders and growers" as they say. We learned to change diapers, feed babies from a bottle, give baths, the works.<br />
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Seven short weeks later, we were bringing the girls home to a whole new world. Mommy and Daddy had to learn how to juggle three babies (Not literally. Seriously. You can't prove anything.) We had to learn how to survive 3 am feedings x 3. We had to learn how to balance feeding them as fast as possible (I need my sleep people!) with making sure they got enough to eat. We had to learn how to swaddle, how to burp, how to quickly change a diaper in a truck stop. And now almost a year to the day from when we brought them home we sit waiting. Waiting for Piper to die. <br />
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Starting last night, Piper stopped breathing. It lasted about 10 seconds. She just stoped breathing and stared into space. Then she started breathing again. It's happened 4-5 more times since last night, the worst lasting about 30 seconds. It's probably only a matter of days until her little body just decides it's had enough. Until then, we wait.Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com0tag:blogger.com,1999:blog-1003693343207910584.post-17479540785944174272010-03-31T22:27:00.002-05:002010-04-02T22:58:45.965-05:00Piper's Story<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBy9aFK8VggMqRDVv4fgPEf20vG4fb-CcbtPty5wNYsUthQA4rq3jNvuwMtDUpAqUpLU0QLmDbmBI5hEUPT_5ijKwmBk7q3WGrbrn2Sa-uAejKyVYPjTQDGSLorMHpvl8qgEBXuix5ZcDt/s1600/triplets-10-piper.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBy9aFK8VggMqRDVv4fgPEf20vG4fb-CcbtPty5wNYsUthQA4rq3jNvuwMtDUpAqUpLU0QLmDbmBI5hEUPT_5ijKwmBk7q3WGrbrn2Sa-uAejKyVYPjTQDGSLorMHpvl8qgEBXuix5ZcDt/s320/triplets-10-piper.jpg" alt="" id="BLOGGER_PHOTO_ID_5455006630722741666" border="0" /></a>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.<br /><br /><a name='more'></a>She started to not take her pacifier any more and was not developing along with her sisters. We took her to several doctor's who all told us to wait it out a little more, as premies tend to lag behind in their development. But we just felt that something was not right, and at our 9 month check-up our Pediatrician confirmed that she agreed with us and thought that Piper had Cerebral Palsy (CP). Needless to say we were heart broken, but unfortunately this was not the worst of the lot for Piper.<br /><br />So we got her into therapy, and more therapy, and we started seeing neurologists, and gastro-interologists (for her severe reflux), and speech therapists to perform swallowing studies, and all things in between. She had blood tests, urine tests, X-Rays and MRI's. At first the therapy appeared to be working. We started to see improvement, but that was short lived. Then the real downhill slide began.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj5SKJCWm28j-ja6H0oSAFVukdYjrPEKGRiSbc_5z42qtciggaTKRQFR5PNYqvBamaufoZwh7JXufzIm8aMHF-ZjQu485tDgOctJfmQPEE-ENp2s5XUFY26tBj1qP0_wfhxrURIUQMPnOA/s1600/Piper3.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 201px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj5SKJCWm28j-ja6H0oSAFVukdYjrPEKGRiSbc_5z42qtciggaTKRQFR5PNYqvBamaufoZwh7JXufzIm8aMHF-ZjQu485tDgOctJfmQPEE-ENp2s5XUFY26tBj1qP0_wfhxrURIUQMPnOA/s320/Piper3.jpg" alt="" id="BLOGGER_PHOTO_ID_5455008672533030354" border="0" /></a>In February 2010. we took all three girls to their 12 month check-in with the developmental pediatrician. After going through the basics with Andi and Bella, who were progressing fine, we starting talking about Piper. We mentioned that we had just had an MRI and were awaiting the results, expecting a CP confirmation. The developmental pediatrician made a few calls and was able to get a hold of the MRI results. Unfortunately, after she tolds us what the MRI showed, we began to wish she only had CP.<br /><br />Piper was diagnosed with <a href="http://en.wikipedia.org/wiki/Leigh%27s_disease">Leigh's syndrome</a>. It is a mitochondrial disease that affects the bodies ability to provide energy to its cells. Basically your body takes the food it eats and converts it into energy to fuel the cells in your body, like brain cells and muscle cells. In people with Leigh's syndrome, the mitochondria do not work properly and thus do not create the energy needed for your body to function properly. This leads to a loss of motor control, irritability, continuous crying, lack of ability to eat, etc. Over time, cells that use lots of energy, like brain cells, can't continue to function on the limited amount of energy that they receive, and as a result they start to die. This leads to a continued degeneration in function and ability and eventually death. There is no cure for Leigh's syndrome and most infants typically die within the first two years.<br /><br />Devastated does not begin to describe it and I won't go into details (see my rant page for that). Let's just say that it literally sucks the life out of you. Since then we have been sent to the ER three times, Piper has had more blood taken, a spinal tap performed, spent 2-3 nights in the hospital, had more X-rays taken, several IV's started, a camera put down her throat, a nasal feeding tube inserted, which irritated her so much that she subsequently vomited out resulting in paramedics coming to our house, and also started having seizures (minor miracle here as there is medication to control this). So that's where we stand as I write this, April 1st, 2010. If only this were an April Fools joke...<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2gejdUhLGnhJqHzLuJLa6i0fQmWpOFvWu5GjsAUEaUlDXSRi3S_F2FftN2QgNn4tDKq9nlk9uzAs3QPtb0wy2lTyB4oOkAjVSQrGiGwLzwQWwGiXdRlU6tWQHMu5GyJWJZ4m-Dn3l2n6Y/s1600/Piper.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 207px; height: 155px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2gejdUhLGnhJqHzLuJLa6i0fQmWpOFvWu5GjsAUEaUlDXSRi3S_F2FftN2QgNn4tDKq9nlk9uzAs3QPtb0wy2lTyB4oOkAjVSQrGiGwLzwQWwGiXdRlU6tWQHMu5GyJWJZ4m-Dn3l2n6Y/s320/Piper.jpg" alt="" id="BLOGGER_PHOTO_ID_5455007857727482834" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz4V0g7yuOPIQ00G0iJ1FCLFo-i44cH7vG6O_sauwPa5wElcWOqCYjaw0Hz7uD1VMw6g3aPk1yj94EKr2vgSgL49P-n1fJ-qJpZszF3Gy754SIcdyWWTxmGnjGt5ZCmxvFsvhgKVolEBHJ/s1600/Piper2.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 154px; height: 154px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz4V0g7yuOPIQ00G0iJ1FCLFo-i44cH7vG6O_sauwPa5wElcWOqCYjaw0Hz7uD1VMw6g3aPk1yj94EKr2vgSgL49P-n1fJ-qJpZszF3Gy754SIcdyWWTxmGnjGt5ZCmxvFsvhgKVolEBHJ/s320/Piper2.jpg" alt="" id="BLOGGER_PHOTO_ID_5455008524763328082" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZNJOKoWZ6mqf3LwK-Dv4gcrOAZVf6WsvXkczE4a2H8mkSTrcA2KApRm5eNXgaGz2COMN6XkemwRqU6vMx-FvhzpDfHnmUIPAd-rPpzF5M2lis7NKPtE1TDTxjbAVR-0LGRXeshmfRYyWs/s1600/Piper2.jpg"><br /></a>Geofhttp://www.blogger.com/profile/08396235415020182924noreply@blogger.com0