tag:blogger.com,1999:blog-75482188857770044002024-03-21T21:17:12.729-07:00Miracle WolfDanielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-7548218885777004400.post-89090537660793331392013-05-16T12:15:00.004-07:002013-05-16T12:56:30.448-07:00The Many faces of Wyatt<div class="separator" style="clear: both; text-align: center;">
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Happy Wolf </div>
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Satisfied Wolf </div>
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Grossed Out Wolf</div>
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Pensive Wolf </div>
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Joyous Wolf</div>
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Nervous Wolf </div>
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Amorous Wolf </div>
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Appreciative Wolf</div>
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Barely Contained Excitement Wolf </div>
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Apprehensive Wolf </div>
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Imitation of a fusky Wolf </div>
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What I think of Stanford Wolf </div>
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Astonished Wolf<br />
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Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com0tag:blogger.com,1999:blog-7548218885777004400.post-28676467238719663292011-07-22T09:24:00.001-07:002011-07-22T09:24:56.058-07:00Wyatt's First Steps<object width="400" height="300" ><param name="allowfullscreen" value="true" /><param name="movie" value="http://www.facebook.com/v/2302432523014" /><embed src="http://www.facebook.com/v/2302432523014" type="application/x-shockwave-flash" allowfullscreen="true" width="400" height="300"></embed></object>Juliahttp://www.blogger.com/profile/00088522977671891163noreply@blogger.com1tag:blogger.com,1999:blog-7548218885777004400.post-74729811302778833922010-07-19T22:38:00.000-07:002010-07-21T20:30:50.710-07:00Wyatt: A TestimonyI was given the unique opportunity a few weeks ago (July 4th, actually) to share Wolf's story in front of our church, <a href="http://www.hopecca.com/">Hope Community Church of Anaheim</a>. I talked about God's faithfulness to our family in the midst of the uncertainty surrounding our son's birth. I have not watched this video, mainly because I'm too embarrassed to watch myself on tape, but I invite you to watch it and let us know what you think:<br />
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(video courtesy of <a href="http://www.hopesermons.com/">Hope Sermons</a>)Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com2tag:blogger.com,1999:blog-7548218885777004400.post-12432203913096935912010-07-19T00:50:00.000-07:002010-07-19T18:43:53.682-07:00OI Conference, Part IIContinued from <a href="http://ourmiraclewolf.blogspot.com/2010/07/oi-conference-part-i.html">Part I</a><br />
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9:30 AM: After the opening remarks, we met Julie and her daughter Shayla. Julie is an OI support group leader from Portland. We got connected with her through the Oregon Ducks fanblog I frequent, <a href="http://www.addictedtoquack.com/">Addicted to Quack (ATQ)</a>, when several members of the blog worked together to put on a fundraiser to send more people from the Portland area to the conference. Julie helped us organize the scholarships and get them out to people who needed them. I’d like to take this opportunity to once again thank everyone over at ATQ who was involved in the fundraiser. They came through in amazing ways. I’m happy to say that I got to meet several people who received the scholarships, and I am very glad I could be a part of the whole thing. It was awesome to be able to meet Julie and her daughter in person and get to know them a bit better.<br />
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10:00 AM: Our first session – Managing OI in moderate children. This was mainly about the different treatments available for children with moderate OI, and what kind of effects they have. We’d heard a lot of this before, but it was interesting to hear about some of the other types of treatments that are now being used. Pamidronate is still the big one, but there are several other treatments now being administered. The main one, Zoledronate, seemed like it has some potential.<br />
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Definitely the most controversial thing about this session were the views about treating OI kids. If you’ve followed this blog at all, you know that the advice we’ve gotten from two different doctors, one with Kaiser and one with the L.A. Shriners, was to hold off on the Pamidronate. Wyatt has been growing and developing well, and they didn’t feel it was necessary to put him through a pretty hard three-day treatment when it didn’t seem necessary. The theory is that we can always start treatment if Wolf gets more fractures, or if he struggles with early development. Julia and I felt that was a reasonable approach. And one of the doctors who presented this session seemed to agree with that philosophy. <br />
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The other doctor who presented is a big proponent of starting the treatment early in infants, even though there may not have been any problems yet, so as to take advantage of as much vital development time as possible. Many other parents we met with agreed with him, as Pamidronate has done wonders for their children. I understand both sides of the argument. The main thing for us is doing the best thing for Wyatt. And I get that Pamidronate is generally helpful with extremely rare long-term side effects. But the treatment is also three days long, and can be pretty tough on infants as young as our son – usually accompanied by flu-like symptoms and requiring an IV. And when you throw in that he’s doing so well as it is…<br />
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It’s something for us to think about. Right now, we’re still of the opinion that we'll hold off for now, but as soon as he breaks again or if he seems to be lagging behind the development curve substantially, we’ll start on treatment as soon as possible. But I appreciate all the advice we got from parents who are glad they started early. We’re keeping that in mind. <br />
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11:15 AM: Got a call from the day care where Ben and Micah were spending the day. Apparently Micah hadn’t stopped crying since we dropped him off. Fantastic. I made my way down there and tried to comfort him. It took awhile, but I finally got him distracted by a little bowling set. So I snuck out the door, thinking I was home-free. And then I heard screaming and wailing and pounding on the door behind me. It appears that my absence was noted. It broke my heart just to keep going, but it would have been worse if I’d gone back in. I hope he’ll forgive me someday…<br />
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11:30 AM: Our second session, on splinting. This was not at all what we hoped it would be, although it seemed useful for some people. We were hoping for some instruction on how to do splints at home in case of fractures. It wound up being a demonstration of a certain brand of casting material. We left a bit early to pick up the boys and go to lunch.<br />
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12:30 PM: We met up with Jen and Cory for lunch at Pizza Shmizza in downtown Portland. I think they went a little heavy on the Shmizza.<br />
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2:00 PM: We dropped the boys back off at daycare, with more drama, and went to our next session, which was regarding exercise strategy for children. This was a good session, as we learned a lot of useful things about how to help Wyatt exercise to develop well and to recover fully from fractures. The presenter emphasized the importance of working in water, and how it’s a great way to build strength without putting bones at much risk. Given how freaked out of pools Ben and Micah are, this gave me hope. Maybe Wyatt will be my little swimmer, although water polo may be a bit out of his range. We’ll see!<br />
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3:30 PM: Our last session of the day was also the most emotional. This was a sharing session for parents of young OI kids. We got some great insights on a few different things we’d never thought about, especially with regard to researching and obtaining the available benefits for sending Wolf to school. We also got to hear the stories of a lot of parents who went through the same type of ordeal we did, and how they are handling everyday circumstances in the care of their fragile children. There were some interesting discussions of the social aspect OI; how do you let other kids and parents know about your kid's condition, all while striking the balance between ostracizing your child and putting him or her at risk. We got to share our story as well. It might have gotten a bit dusty in the room.<br />
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5:00 PM: Pick up the kids and get back on the train. Micah did a lot better on the second go-round of day care. I guess the day care supervisors discovered his weakness for snacks or something.<br />
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6:30 PM: After an aborted attempt to find dinner at a rather questionable restaurant in a sketchy part of town, we took the advice of Big Ben (who was joining us again), and went to Cart-topia. The best way I can thidescribe it is a hippy version of a mall foodcourt. Definitely very Oregon. I had a spicy andouille sausage. Little Ben ate an entire giant hot dog. Big Ben shared a large tray of poutine, which consists of French fries, cheese, and gravy. It doesn’t get much better than that. Wyatt clearly wanted some of the poutine, but he got formula instead. Sorry, Wolf, we’re going to make you wait until you’re at least one before you start clogging your arteries. Some of us got crepes for dessert, while I shared a mini apple pie with the boys. Good stuff.<br />
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8:30 PM: We got the kids to bed and played a few rousing games of Zooloretto. For any of you who like playing boardgames, I would heartily recommend it. It’s a great family game. It can get a bit intense though, especially if an un-named sister of mine steals one of my kangaroos.<br />
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11:00 PM: To bed in our hot stuffy room with the barely functioning air conditioning.<br />
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<strong>Saturday, July 10th</strong><br />
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8:30 AM: After taking the train over and continenting our breakfast (I switched it up and threw some granola in my yogurt, just for fun), we headed to a session on lower extremity surgery. There was some interesting stuff here about the different types of rodding procedures that help straighten and strengthen bowed leg bones. That kind of surgery, as far as I know, is almost never done on children under two, so we have awhile before this comes up. Still, it’s good to know what’s out there, and given the shape of Wolf’s femurs, this is definitely something that may be in our future.<br />
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10:00 AM: One of the OI parents was kind enough to put on an impromptu home splinting demonstration for us new OI parents. She even made a couple for Wyatt to use in case one of his femurs fractures. She talked about keeping a “break bag” on hand to use in situations where it’s tough to get to an orthopedist. This was very helpful for us.<br />
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11:30 AM: A session about clinical trials and some information on growth deficiency in OI. There was some good information here, but nothing earth-shattering.<br />
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12:30 PM: Lunch at good ol’ Carl’s Junior. We decided we’d had enough Shmizza for one trip.<br />
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2:30 PM: After lunch, we headed to a local park for a meetup with some of the guys from ATQ. I got a chance to finally hang out and chat face to face with guys I’d been commenting with on the internet for the past year or so. Guys who, though never having met me, put on this great fundraiser on behalf of Wyatt. I know I’ve mentioned that a lot, but I think it’s important that we emphasize great things people do. <br />
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We had a fun time drinking some beers, throwing a football around, talking about beer, watching our kids play on the playground, having a roundtable discussion about the nuances of beer, getting eaten alive by swarms of mosquitoes, and then drinking more beer. It was basically like what we do on the blog, only in real life and with more bugs. I had a great time and so did the rest of my family. If any of you from ATQ are reading this, thanks for coming and hanging out! If you’re ever down in SoCal or we get back up to Portland, let’s do it again!<br />
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6:00 PM: We left the picnic and headed to the conference dinner. We didn’t have time to get back to the hotel room, so we went in our grubby park clothes. We sat near the doors so we wouldn’t look too out of place.<br />
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7:00 PM: A mom and her son with OI joined us at the table, as well as a friend of theirs. They were from Maine and New Hampshire, respectively, so we had a good time talking about the vast differences in the places where we lived. Julia chided me for bragging about being able to barbecue in March.<br />
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When we began eating our salad, the waiter came over to us with a couple bowls of fruit. For the kids, they would substitute the fruit for the salad, which had been placed at every seat beforehand. Well, Micah happily accepted the offer of fruit, but then the waiter looked at me questioningly. It seems that Ben was eagerly demolishing all the tomatoes and carrots in his salad, and was already halfway through it, with no signs of letting up. I told the waiter not to worry about the fruit. Talk about polar opposite children…<br />
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8:00 PM: The boys had finished their desert and the dinner was wrapping up with some awards being presented. Wyatt was being great, as always, but our older sons were obviously not happy with the lack of entertainment options presented at this dinner. They like a bit of theater after their meal, and an award ceremony just wasn’t cutting it. Pretty much our only regret about the whole conference was that we couldn’t stay longer to chat with our newfound friends and take more pictures. Such is life raising small children. It’s okay, we still love ‘em.<br />
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8:30 PM: Back to the hotel and to bed with the boys, mom and dad shortly thereafter.<br />
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<strong>Sunday, July 11th</strong><br />
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8:00 AM: I made the mistake of telling the boys that we were going to a science museum after we checked out of the hotel. I’ve learned that there are many rules about children, but one is that they will never be ready at the same time as you are. Either you have to drag them by their feet to get them moving, or you get them so excited about something that they get themselves ready in about two seconds and nag you about leaving until you finally go. Of course when I told them about the science museum, they decided they wanted to go RIGHT NOW, and to heck with all our belongings that needed to be packed. This did not make things more efficient.<br />
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9:45 AM: We finally got out of the hotel and went to OMSI, a science and discovery museum in Portland. It was a pretty good time for everybody, and certainly something we would get passes for if we lived in the area. Micah’s favorite thing for awhile was an old Pacman game that had been slowed down to simulate the effects of alcohol on your reaction time. I don't know what that says about him. Probably just that he likes video games. Ben loved the machine that took your picture and then aged your face thirty years. They both had a blast in the kids’ area that had a small playground and a room for crafts (they made some spin art). Even Wyatt got to play in a little nook that had some toys for infants. His favorite thing was looking at the colorful fish in the fish tank. It was a good way to end our trip.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_IzMg_MZY27At1qGcWlR9gtO7BffLD73xkK9drh3e7yKJn8BjpPI8bq4x-6PE1ZPJEgWzuX28zq0Wdy4vcolyv33oV-YJvntICw3fn45sOuYWBsWPQgAYM0z2F-tdv3Kx6eNXar_0WME/s1600/100_0685.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_IzMg_MZY27At1qGcWlR9gtO7BffLD73xkK9drh3e7yKJn8BjpPI8bq4x-6PE1ZPJEgWzuX28zq0Wdy4vcolyv33oV-YJvntICw3fn45sOuYWBsWPQgAYM0z2F-tdv3Kx6eNXar_0WME/s320/100_0685.jpg" /></a></div>
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2:00 PM: We left OMSI and headed back to the 5 freeway. We said goodbye to Portland as we left for home.<br />
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2:05 PM: Micah, whining, says, “I want to go back to the Red Lion hotel!” Seriously. Words fail me.<br />
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6:45 PM: McDonald’s again. To whoever owns the McD’s in Weed, California: You’re welcome.<br />
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<strong>Monday, July 12th</strong><br />
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5:30 AM: After 15 and a half long hours in the car, we’re finally home. It’s good to be back. <br />
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We had a great trip. We had fun, learned a lot about OI, and made some great new friends. Thanks to everyone who was a part of it!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5wfCbqUINcWK5YaMpoTOohl7t98fD-ibEENmaU0vAVoqV48wTu2BnRmcNKWUJ1qHXjepZerUCHTjaHNEWRD2qD3lUNio4yTikVZKKIFznECB-eTUCWdeUO4OWXIqbh8nguISwpBcI3tc/s1600/Portland2010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5wfCbqUINcWK5YaMpoTOohl7t98fD-ibEENmaU0vAVoqV48wTu2BnRmcNKWUJ1qHXjepZerUCHTjaHNEWRD2qD3lUNio4yTikVZKKIFznECB-eTUCWdeUO4OWXIqbh8nguISwpBcI3tc/s400/Portland2010.jpg" width="400" /></a></div>Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com0tag:blogger.com,1999:blog-7548218885777004400.post-55872630234442742052010-07-17T23:49:00.000-07:002010-07-18T22:33:53.611-07:00OI Conference, Part IOnce again, here we are, and I feel I must open with another apology for the lack of posts I’ve been putting up. I assure you, it’s not because I’m trying to shelter you from bad news, or anything like that. The truth is (aside from being busy), there just hasn’t been much to tell. Which is a very good thing! <br />
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I know, I should be updating you with good news as well, so yeah…sorry. Wolf has been doing well, still growing, still not breaking any bones. We haven’t been going to many doctor appointments lately because there just hasn’t been a reason. And we thank God every day for that. <br />
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But we did get back on Monday from a four-day trip to Portland, Oregon, where we attended our first OI Foundation National Conference. You can check out the OI Foundation through the link on the right of the page if you’d like. The OIF puts on this conference every other year. It is a gathering for people with OI and their supporters. There are fun social events and great speakers who address important aspects of living with OI. <br />
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We had originally thought that we wouldn’t go; since Wyatt was so young, he wouldn’t really benefit from being there and it would be a long trek up with our two other young boys. But given that the event was in Portland and we have some friends up in that area from our college days (go Ducks!), we figured we’d give it a shot. So we packed up the van, strapped down the children, picked up my sister, Jen, and her husband Cory (they decided to join us), and went on our way – 1,000 miles from Anaheim, California to Portland, Oregon. I’ll give you the story via running diary. <br />
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<strong>Wednesday, July 7th</strong> <br />
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2:00 PM: We leave the house, headed for Jen and Cory’s place to pick them up. We’ve got all the kids, clothes for five days, snacks for the road, and Mapquest printouts for everywhere we need to go. Yes, I am the last person in the country who doesn’t have a GPS either in his car or on his phone. Heck, we don’t even have a texting plan. I’m kind of proud of this, even if it infuriates all of our friends and family. <br />
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2:15 PM: Having picked up Jen and Cory, we hit the highway. Amazingly, the same freeway (Interstate 5) that passes within a few miles of our house also passes within a couple miles of the hotel where we’ll be staying. <br />
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2:17 PM: Our resident two-year-old, Micah, states for the first time that “he wants to go home.” This would not be the last time. <br />
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2:20 PM: See 2:17 PM. <br />
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3:45 PM: I curse for the first time (this trip) at a driver of below average intelligence who refuses to acknowledge my presence by vacating his current position clogging up the fast lane. I shake my head in derision as I pass on the right. Yeah, that’ll teach him! <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqFv4IWHBgUpyLmsxZZ8RGnq0-kucPX0hNo71PmsWlF0BNLe0v7gaOA8Kf5O5hfQHPgGvumfwI_moLWdqB4RFjsfn4k2DxFoX6ogYOf6gQaEZVnXMxSw8qUgpnZD3pm2m44z-eVVztgf8/s1600/100_0642.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5495382026229726386" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqFv4IWHBgUpyLmsxZZ8RGnq0-kucPX0hNo71PmsWlF0BNLe0v7gaOA8Kf5O5hfQHPgGvumfwI_moLWdqB4RFjsfn4k2DxFoX6ogYOf6gQaEZVnXMxSw8qUgpnZD3pm2m44z-eVVztgf8/s320/100_0642.jpg" style="cursor: hand; float: right; height: 320px; margin: 0px 0px 10px 10px; width: 256px;" /></a>4:30 PM: We stop for our first gas fill-up. The boys, who have been good so far, get out to stretch their legs. They manage to cajole their Uncle Cory into buying them colorful spiky rubber balls. These will be used to annoy various other passengers throughout our journey. I’m sure this was the designer’s intent. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSvI-H-8tN5YvvCuf8VGDno3rOq46Xq3BhqOBLAI8jrsSRrWE3CXKc7MzmgUTyI-TJotlJaEp73YhO5Udo2ezAEI8N6-jy-BMwjj8SLxqoMfCHOTDUjMAaT1WiUi3OKFSif_elwIxohRk/s1600/Potato+head.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5495386459154907058" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSvI-H-8tN5YvvCuf8VGDno3rOq46Xq3BhqOBLAI8jrsSRrWE3CXKc7MzmgUTyI-TJotlJaEp73YhO5Udo2ezAEI8N6-jy-BMwjj8SLxqoMfCHOTDUjMAaT1WiUi3OKFSif_elwIxohRk/s320/Potato+head.jpg" style="cursor: hand; float: right; height: 320px; margin: 0px 0px 10px 10px; width: 256px;" /></a>6:45 PM: Micah drops his Mr. Potato Head for the 796th time on the afternoon and whines inconsolably until someone picks it up and returns it to his lap, so he can drop it again. <br />
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6:46 PM: I remind myself how much more expensive plane tickets were. <br />
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8:00 PM: We arrive in the Bay Area where we will be staying the night. We stayed with a friend’s mom who lives in Danville. The boys had fun running around and playing with her two dogs. She cooked us a great dinner and put us all up for the night. Thanks, Connie! <br />
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<strong>Thursday, July 8th</strong> <br />
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8:00 AM: We get back on the road. It’s a long, 10 – 11 hour journey the rest of the way to Portland. We stop at McDonald’s for the first of what seems like 20 times on the trip to grab a quick breakfast. <br />
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8:10 AM: Julia offers up as a public service announcement: “Do not ever get the breakfast burritos from McDonald’s.” There you go folks. Come for news about Wyatt AND learn useful information about fast food. <br />
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10:00 AM: Speaking of Wyatt, the kid has been great. I think he may have cried twice the entire drive, and then only briefly. It’s not often you ask a four-month old to be a role model, but I found myself hoping that Micah would act more like his little brother. <br />
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12:30 PM: McDonald’s again to allow the boys to get some energy out at the play place they have there. I’m pretty sure McNuggets are allowed on my diet. <br />
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2:00 PM: We finally hit Oregon! Of course this means I have to slow down from the steady 83 MPH I was doing to under 75. Silly Oregon speed limit. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYcLlyo5Aie3UBt_oqbFmr8QqlBF9B8D-7CwH2OOvVrlIdIH3p2rVZa8gKwJpSUIgcbJ8aUYvGkVgJR8nNQCpm3OaLkEU_Fl9n4NqYIUkj2P8PxQr_l9IB4bfAbZo0VzoY_hCX0STlMUk/s1600/100_0659.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5495386469217466338" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYcLlyo5Aie3UBt_oqbFmr8QqlBF9B8D-7CwH2OOvVrlIdIH3p2rVZa8gKwJpSUIgcbJ8aUYvGkVgJR8nNQCpm3OaLkEU_Fl9n4NqYIUkj2P8PxQr_l9IB4bfAbZo0VzoY_hCX0STlMUk/s320/100_0659.jpg" style="cursor: hand; float: right; height: 320px; margin: 0px 0px 10px 10px; width: 228px;" /></a>6:45 PM: We’re here! We check into the Red Lion Hotel next to the Portland Convention Center. Ben and Micah celebrate by dumping their toys all over the floor and jumping on the beds. Just like home! Wyatt seems very glad to be out of his carseat for a bit. <br />
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7:30 PM: We meet a college friend, Ben (we’ll call him Big Ben, so as not to confuse him with our son), for dinner at the Barley Mill Pub. Forget the diet. Two pitchers of excellent McMenamin’s microbrew, two baskets of Cajun-seasoned tater tots, and a steak wrap later, I am one satisfied guy. Little Ben gets his first taste of Oregon culture as he notices the random, colorful, eclectic decorations adorning the walls. He spends much of dinner staring at a rather psychedelic mural on the ceiling. Ah, Oregon. How I missed you. <br />
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9:00 PM: Done with dinner, we walk outside into the stifling 90 degree heat. In a strange twist, it’s actually 20 degrees hotter in Portland than it was in Southern California when we left. <br />
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10:00 PM: Bedtime. Big day tomorrow. <br />
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<strong>Friday, July 9th</strong> <br />
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7:15 AM: We walk from our hotel to the light rail stop that will take us to the downtown Hilton, where the conference is being held. The boys enjoy the train ride, which is free within the downtown area, and I enjoy not having to find (and pay for) parking in the city. If anyone in the Orange County/Los Angeles Transportation Department is reading this, please take notes. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP3mpzvoYLWyMLghQHto_oUsKssTzH_wscLDinMw4Nbk_63NEWZuu00a5oRc1Ybpe5UzxgOmO9xh_MsKiFX1Kux1V5bBFktTa8EuMDSOyaVXCtX4oWis1a6kW1yHwrgFWC-tH4YE3Hjz8/s1600/100_0669.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5495390304316646274" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP3mpzvoYLWyMLghQHto_oUsKssTzH_wscLDinMw4Nbk_63NEWZuu00a5oRc1Ybpe5UzxgOmO9xh_MsKiFX1Kux1V5bBFktTa8EuMDSOyaVXCtX4oWis1a6kW1yHwrgFWC-tH4YE3Hjz8/s320/100_0669.jpg" style="cursor: hand; display: block; height: 240px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
8:00 AM: We scarf down a continental breakfast at the Hilton. How did the word “continental” get attached to a breakfast consisting of bagels, yogurt, and various fruits? How many different continents are actually represented there? Unless they shipped the cantaloupe in from Russia, I’m thinking just one. <br />
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8:30 AM: We drop Ben and Micah off at the kid’s daycare center and go to attend the opening session with Wolf along in the stroller. There are a lot of things going through my head at this point. The main thing I notice is the people. There are, of course, many people in wheelchairs, including lots of children. Others have walkers or canes. Even those who don’t need that kind of assistance are usually well below average in height. It took me until just now to realize that prior to that morning, I don’t think I’d ever met someone else who had OI, at least not that I knew about at the time. We saw another infant there who had a severe form of OI; he was only about half the size of Wyatt, despite being two months older. <br />
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For the first time, I felt something akin to guilt. Here we were, new to this whole OI thing, with our relatively normal looking, only-one-broken-bone-so-far baby. We were surrounded by people who had very difficult health issues, and parents like us who were afraid to even touch their children for fear of breaking them. I put on a self-imposed label as an outsider, not necessarily because I felt that we weren’t supposed to be there, but that it was almost like bragging by showing off our healthy boy. I was worried that others would consider us not part of the group, or that they would resent the relative ease of caring for Wolf to this point. <br />
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I cannot say this strongly enough – those fears were absolutely unfounded. Even though we were outsiders in the sense that we didn’t really know anybody there, all the people we interacted with treated us wonderfully. They were genuinely happy that Wyatt was doing so well, and gave us lots of encouragement. This didn’t stop me from feeling those slight pangs of guilt every now and again, but I think those were originating from my desire that ALL of the people who dealt with OI could have it as well as we did. Almost without fail, the community there was upbeat, helpful, and very welcoming. <br />
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Obviously I’m not finished, but this took me longer to write then I expected. Part II will be up by Monday morning. Thanks again for continuing to pray for us and encourage us! A large part of how easy this has been is attributable to the great support we’re getting from everyone. Stay tuned!Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com0tag:blogger.com,1999:blog-7548218885777004400.post-18302619406976498292010-06-10T16:14:00.000-07:002010-06-10T16:14:29.082-07:00Visit to Shriner's HospitalWe have more good news to report about our little Wolf! We went to see an OI expert at Shriner’s Hospital last Friday (she happens to be the same doctor who sees Atticus Shaffer, the youngest kid on the TV show “The Middle”). The news she had for us confirmed what we had been hearing from our Kaiser doctors.<br />
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According to the doctor, despite the different types of OI out there, they tend to categorize actual symptoms into three main categories: mild, moderate, and severe. After examining Wyatt and looking at x-rays, she called his symptoms mild, with the main risk at this point being additional fractures in his femurs because of the bowing. She definitely advised us NOT to pursue treatment at this stage since it doesn’t seem necessary yet. She expects him to walk without too much trouble, although it may be delayed somewhat. She said that we were doing a fine job with him and encouraged us to keep doing what we’re doing.<br />
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Even though we didn’t really get any new information, I’m really glad we went to see her. She’s seen many, many OI patients, and knowing that an expert has examined our baby is comforting. It also gives us an additional measure of comfort that our doctors at Kaiser, while maybe not having the most experience with this, have been pretty good with their assessment. Still, I think if/when it comes time to get treatment, we’ll go through Shriner’s. The free expert care is just too much to pass up, even if it’s not all that convenient to drive into downtown L.A. (Although with God’s blessing, we shouldn’t have to do that very often.)<br />
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As for Wyatt’s development, things are going well. He’s two and a half months old, but he’s been sleeping through the night for a couple of weeks now. Julia is thrilled about that! He’s on a normal growth and weight curve, and his muscle tone apparently looks good, although it’s a bit underdeveloped from the three weeks he had to spend in the harness. He’s spending more time on his tummy now and his neck is getting a lot stronger. <br />
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Our little boy is doing well! We’ll keep you posted as things go on.Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com0tag:blogger.com,1999:blog-7548218885777004400.post-35938830727013295712010-05-25T10:21:00.000-07:002010-05-25T11:28:15.991-07:00Wolf News (at last!)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4MT0dQ0OG41o_KkOJ6MZt-BLLhOFh1uySQA1qxlpumg49gX7eBonadKC_kLmiIy98W1t7d9NdroruTtnyCnm_J8S8HhAQ5Of26GrJuDLaL41w5vMa-xQkDkconAXk-AF58kvk4Ip5Jq8/s1600/100_0393.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5475268515661096850" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4MT0dQ0OG41o_KkOJ6MZt-BLLhOFh1uySQA1qxlpumg49gX7eBonadKC_kLmiIy98W1t7d9NdroruTtnyCnm_J8S8HhAQ5Of26GrJuDLaL41w5vMa-xQkDkconAXk-AF58kvk4Ip5Jq8/s320/100_0393.jpg" style="cursor: hand; float: right; height: 327px; margin: 0px 0px 10px 10px; width: 269px;" /></a>It’s been awhile. Sorry for the gap between posts – I know many of you who read this blog are praying diligently for Wolf and the rest of our family, and we really want to keep you abreast of the situation as much as possible. Sometimes, though, life gets busy. And when you have three children younger than 5, “sometimes” = “almost all the time.” There’s my excuse, take it or leave it. <br />
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But since we’re here, let’s have some news on our young Master Wyatt, shall we? I am pleased to report that the news is good! We have visited with geneticists three times since the last post, and the meetings have gone well. I’ll break down each of the three meetings: <br />
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<strong>Meeting 1</strong> <br />
We visited the local Kaiser geneticist who we’ve been seeing and she went through Wyatt’s diagnosis with us. The reason he has OI is because one amino acid mutated from adenine to guanine sometime during development. That’s it. In the millions (billions?) of different building blocks of Wolf’s DNA, one thing went wrong and caused this whole chain of events. Pretty crazy to think about, isn’t it? On the one hand, it highlights just how fragile the balance can be when just one slight change can result in something like OI. On the other hand, it reinforces the notion that God’s design (and the execution of that design) is incredible. <br />
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The doctor told us something else that amazed me: of all the blood tested by this lab (and this isn’t strictly a Kaiser lab; I got the impression that this lab is where you send blood to be tested if there is any question about OI), they have only seen this particular mutation 11 times. I’m an accountant, so forgive me for doing a little math here, but according to most sources, about one in every 10,000 people is affected by OI. There are 300,000,000 people in the U.S., which leaves us with about 30,000 people in the country with OI. I have no idea how many of those were tested by this particular lab, but let’s say 11,000, just for round numbers’ sake. Assuming these numbers are representative, that leaves us with this: Wolf not only had a .01% chance to get OI, but had a .1% chance among all OI patients to get this specific mutation. Doing the multiplication leaves us with this: any baby being born has a .00001% chance to get the same thing Wyatt has. <br />
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I don’t say all that to garner sympathy or to complain about how unlucky we are. Really I’m just fascinated by it. That’s insane! Anyway, enough with the numbers. The nice thing about having only 11 documented cases of this mutation is that the doctor was able to go through a brief description of each case, as far as it was known (a lot of the time, the lab didn’t have detailed facts on the patient whose blood was sent for testing, so not all the cases had a lot of information available). The descriptions were promising. All the children and adults could walk. Some walked later than average (I remember one was at 18 months), but at least they could walk eventually. One of the adults who had the mutation lived a normal life and only found out he had it because he took his child in to be tested and they tested him as well. (Fun fact: This man swam the English Channel!) Common among this mutation were prenatally bowed femurs similar to Wolf’s. Other symptoms, such as dentiogenesis imperfecta (weak teeth), blue sclera, fracture frequency, etc. varied from case to case, but all in all, the symptoms never seemed to be worse than moderate. Based on this very small sample size of affected individuals, Wolf has a great chance at living like a regular boy who does regular boy stuff (but who might just have to skip out on bounce house wrestling). This is very encouraging. <br />
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The downside is that the mutation is on a dominant gene, which means that Wolf will have a 50% chance of passing this along to any of his children (you can break out your Punnett Squares if you want to see how that works). Julia and I are having our blood tested to see if there’s any chance we passed this along to Wyatt, but that’s a pretty remote possibility, given our above average height and neither of us having ever broken a bone. But that prospect is at least 20 years down the road, and who knows what medical advances will occur between now and then? Overall the meeting was positive. We got some questions answered, we learned some new things, and above all, we found out that our boy has a good outlook. We also planned to start treatment, but I’ll discuss that further in… <br />
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<strong>Meeting 2</strong> <br />
This time we got to meet with another geneticist, one who had a good amount of experience examining and treating OI patients. He was up from San Diego and took the time to speak to us about treatment options, which we appreciated. His take was a bit surprising. <br />
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As soon as we were sure that Wolf had OI, we assumed that we would start him on Pamidronate. We had heard so many positive things about its effects, and there weren’t any significant risks as far as we could tell. The doctor talked about the details of how Pam works, how treatment would be administered, etc., but he was of the opinion that we might not want to start it yet. The reason we should consider holding off is that Wolf is doing so well. He told us that the last x-rays showed less bowing than the x-rays he had taken at birth, which indicates his legs are straightening out on their own. He did have the one fracture, but he hasn’t had any more, which is a good sign. Moreover, the one fracture he had is suspected to have been caused by the angle of the bent femur; therefore, if the femur is straightening, we would expect to see less fractures there anyway. <br />
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Overall, he liked the way Wyatt’s skeleton was growing, and expressed some concern that Pam, while definitely strengthening the bones, may actually hinder the bones from growing straighter. He told us that there was evidence both ways – some children on Pam had bones that grew straighter while others didn’t show that same tendency. But seeing Wolf’s improvement thus far, and given his still young age (he only turned 2 months a week ago), he thought it might be prudent to wait and see what happens. While the treatment doesn’t pose any significant long-term risks, it would be given via IV over a three-day period, and that would not be a comfortable time for Wyatt, or the rest of us for that matter. If improvement stops or fractures increase sometime over the next few months (or years), we can start the treatment then. This meeting was encouraging to us, as the doctor praised us for the things we were doing to keep Wyatt healthy. It was good to hear that from a well-respected doctor. <br />
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<strong>Meeting 3</strong> <br />
This was a pretty informal meeting. Basically, the geneticist we saw in meeting number 1 has been the doctor we’ve been seeing regularly since before Wolf was even born. However, she has told us she’ll be retiring sometime in the next few years, and she wants us to have some continuity in the geneticist we’re seeing for Wyatt’s treatment. So we met with another geneticist who will, from this point forward, be the main doctor to manage Wyatt’s care. <br />
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We had actually met this doctor once before – in the hospital about a day after Wyatt was born. That first meeting did not go well. He came into the room, introduced himself, and asked if he could take pictures for a meeting. Then he started moving Wyatt around, and rolling him on his side, and asking us to stretch out his legs. We were horrified! At this point, we had no idea how fragile or sturdy our baby was, so we were nervous even holding him. And here comes this guy, tossing him around like a football, taking pictures at his leisure! We quickly shooed him off and told him that we would move Wyatt if he needed to be moved (although we made it very clear by our angry glares that we did not think Wyatt should be moved at all). <br />
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This meeting went much better. The man was very nice, and even apologized for his unexpected hospital visit. Julia and I are comfortable that he’ll take good care of Wolf in the years to come. <br />
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<strong>The Plan</strong> <br />
So the plan has changed a little bit. We were set on starting Pamidronate as soon as possible, but with the good news about Wolf’s improvement, we’re putting that on hold for the time being. We do have an appointment with Shriner’s Hospital on June 4th, and they are considered to be experts at these kinds of conditions. So we’ll see what they say and weigh our options after that visit. All in all though, things are going well. Wyatt is growing (his weight and length are tracking nicely on the growth curve), he seems to be developing his motor skills, and we’re starting to give him some tummy time to increase his muscles. Thank you again for all your prayer! And thanks for reading this novel of a post. This is what happens when you skip three weeks of posting. But as a reward, here are some cute pictures of Wolf and the family from the last month or so. Enjoy! <br />
<img alt="" border="0" id="BLOGGER_PHOTO_ID_5475270971598415186" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm0pyRNeANEaTZdpVOFcdLlgwrJg0syENHgtWSXn8FQiCDvewyalFg1jQ_oDkRCS0cYVNCk2pRNC7Z6DTLfgT-x3Ni3sa-MvbeoygAAJhLjXnF8p4ZUA1_sjzZOVgcHxjV7s_9aqSZDMU/s320/100_0425.jpg" style="cursor: hand; display: block; height: 256px; margin: 0px auto 10px; text-align: center; width: 320px;" /><img alt="" border="0" id="BLOGGER_PHOTO_ID_5475270982126017426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiI9N1f-uaQ7IwJZBu0uUJchtm0AqLPILG81-69GoppgObZiKGd8o0EZY8drvu10-Ep0rsZwZu5w25QJE11-gy-Xe0hWH7YYspb3185e7QdYLT3m7Gcsw4_XvSprVg72J7hMi-Txs2ksI/s320/100_0430.jpg" style="cursor: hand; display: block; height: 320px; margin: 0px auto 10px; text-align: center; width: 256px;" /><img alt="" border="0" id="BLOGGER_PHOTO_ID_5475272259021944274" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgkDI8iVXd1FCvwUI9z_D1p3mDncoXwCXeP4ez57w25Vv_9oXER0rygRHTmokzaVgEXu_F0EMLSzup_nRy2pCKTp7xKEX_wRqU8kzSfV1Rir4hOIvN8W3KgNSiLdieQOLUQklKx9soGqk/s400/100_0454.jpg" style="cursor: hand; display: block; height: 352px; margin: 0px auto 10px; text-align: center; width: 454px;" />Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com6tag:blogger.com,1999:blog-7548218885777004400.post-43256741994784036452010-04-30T12:58:00.000-07:002010-04-30T13:01:39.139-07:00Test Results Are In...We got a call from our geneticist while we were at dinner last night, and she told us the blood test results had come back. Our suspicions were finally 100% confirmed. We have an official diagnosis: Wolf has Osteogenesis Imperfecta. (Speaking of Eagles songs, I kept singing to myself the first line from Don Henley's "Heart of the Matter" for the rest of dinner: "I got a call today I didn't want to hear, but I knew that it would come...")<br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB_LTIfvILgRKdn3NN9o7PjWUq6ORg6ha6NKQh8rTuHVizTfg7IMr-PlVWQmlD39y1gt5jwp1tJpZAq1K47dW75wbX78yDJlb_20zEPM_tmGgW7GCyNZmhhEW0jnfoq8CB3voGMU7Qx4jN/s1600/100_0352.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB_LTIfvILgRKdn3NN9o7PjWUq6ORg6ha6NKQh8rTuHVizTfg7IMr-PlVWQmlD39y1gt5jwp1tJpZAq1K47dW75wbX78yDJlb_20zEPM_tmGgW7GCyNZmhhEW0jnfoq8CB3voGMU7Qx4jN/s200/100_0352.jpg" tt="true" width="200" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">When we got the news, it was kind of a weird emotional situation. On the one hand, it reinforced the already prevalent mindset that Wyatt will always suffer from this and his childhood will be constantly interrupted by doctor visits, testing, and treatments. OI is a serious condition, and it's tough to think that a lot of the things that our other two boys do now (jumping on furniture, climbing all over everything, tackling me and each other) will be off limits for Wolf. On the other hand, we now know that what we're dealing with can be treated effectively. We know that there are support groups that can help us, and there are families dealing with the same issues that are going to change our lives. Things could be a LOT worse. </div><a name='more'></a><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">So the emotion was first a bit of disappointment and sadness, but that turned into confidence and determination. We have God on our side, as well as a veritable army of prayer warriors who have graciously taken it upon themselves to lift us up spiritually. Our family is not merely going to survive this. We are going to thrive and get stronger. And with help from the Lord, our testimony will touch hearts and affect lives. I imagine that God is going to work amazing things through our little Wolf, and no brittle bone disease is going to hold Him back. Our God is stronger than that.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjfBHRETW7nNpukUJDAcCAkP8VC_u2RH4n3BXg7uO3k4Dl1t6TlzF0hW_WPLYq7sSU0KZ4gqRNOKtpzA0JwskR5Uj29JSENeBxKDqeobol-YtYuehznS9Qh67eSGcynNFehViF9FEGTF2y/s1600/Ben+Wyatt+2010-03-26+100_0218_sm.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjfBHRETW7nNpukUJDAcCAkP8VC_u2RH4n3BXg7uO3k4Dl1t6TlzF0hW_WPLYq7sSU0KZ4gqRNOKtpzA0JwskR5Uj29JSENeBxKDqeobol-YtYuehznS9Qh67eSGcynNFehViF9FEGTF2y/s200/Ben+Wyatt+2010-03-26+100_0218_sm.jpg" tt="true" width="150" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">As for the diagnosis, we will be meeting with the doctor to discuss specifics sometime within the next week or so. There were, however, a couple of basic things we determined from the phone call. First, is that the mutated gene was a rare mutation (even for OI) that is normally associated with type IV OI. I won't go into the details of how that differs from the other types, but you can see that <a href="http://www.oif.org/site/PageServer?pagename=AOI_Types">here</a>, if you're interested. Let's just say we're glad it's not type II (which is what the prenatal diagnosis indicated it might be - type II is almost always lethal in infants) and even type III is more severe. Type IV is a bit tricky because it covers the wide range between type I, which is mild and for the most part only involves a marginally higher bone fracture rate, and type III, which involves severe, frequent bone fractures and very limited growth potential.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">So Wolf could wind up anywhere between those two extremes. We'll know more as he grows and develops. The doctor we spoke to at Cedars Sinai suggested that the experts on OI (of which she is one) are considering tossing out the types entirely, as most cases of OI are unique, making it difficult and uninformative to group them into broad categories. But for now, type IV is all we know about the severity of Wyatt's condition.</div><br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Second, the good part of this is that we can move forward quickly on a treatment plan. Right now, the idea is to get Wolf started on Pamidronate sometime in the middle of May. The first infusion will be given over a long period, maybe several days, to see how he reacts. If he reacts well, he'll get infusions every three months for as long as they seem to be helping, and they should only take a couple hours.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCBYnTS4cbfBLEsLnk_Y18Zl-A38WeeAT7W7lBQRiT5tsT2dPU2L40FNAVgM8CgxhzoV4twYxziCkTwYhWbIT-sDMfVSP2sdA-JAr5-vz8bY_CBDGrdNuWV153rWbvc4xGVxYBs-PdYJm7/s1600/Dan+Wyatt+2010-04-09+100_0259.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCBYnTS4cbfBLEsLnk_Y18Zl-A38WeeAT7W7lBQRiT5tsT2dPU2L40FNAVgM8CgxhzoV4twYxziCkTwYhWbIT-sDMfVSP2sdA-JAr5-vz8bY_CBDGrdNuWV153rWbvc4xGVxYBs-PdYJm7/s200/Dan+Wyatt+2010-04-09+100_0259.JPG" tt="true" width="160" /></a>Bad news and good. Good news and bad. That's okay, though, because God can handle it all. Wolf is getting stronger every day. All this does is make every little milestone he achieves, like lifting his head for 20 seconds straight, that much more of a miracle to celebrate. And celebrate we will!</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div></div>Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com16tag:blogger.com,1999:blog-7548218885777004400.post-39748667480231165442010-04-29T10:38:00.000-07:002010-04-29T10:38:42.693-07:00Freedom!Good news! Wolf is out of his harness! The orthopedist showed us the x-rays and said his leg was healed. So he took Wyatt out of the harness and let him roam. Well, not “roam” exactly, but he can move his legs again. Wolf kicked his left leg repeatedly in celebration, but he is still hesitant about moving his right leg. The doctor said that was normal, as babies will be cautious about moving a recently broken limb to avoid more pain. By yesterday night (he got the harness off on Tuesday) he was definitely moving his right leg a bit more. Hopefully he’ll be back to normal in no time!<br />
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It’s nice that he can move his legs again (I’m sure Wolf enjoys the freedom), but it makes us even more nervous to handle him. We were very careful with him while his harness on, but at least we always knew where his legs were, and we could pick him up without jostling him too much. Now when we handle him, we’ve got to worry about his arms AND his legs to make sure we’re not squishing anything or pinning anything in a bad position. It’s definitely nerve-wracking, but we’re doing okay thus far.<br />
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Now we’re still waiting for test results. We should hear about blood tests in the next week, and if those don’t tell us what we need to know, we’ll have to wait another three weeks for the skin tests. Waiting for answers is kind of a bummer. I dislike not knowing what’s going on. But it’s out of our hands, so wait we must. We continue to offer up to God prayers of thanks for our son, and requests for healing. Thank you for your prayers as well!Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com0tag:blogger.com,1999:blog-7548218885777004400.post-2070312885077652742010-04-26T21:14:00.000-07:002010-04-27T15:26:54.778-07:00Gratuitous Cute PicturesYeah, you guys know what's coming. My parents won the auction for the Chip Kelly signed football, and it came in the mail today. So I took the snap, gave it to Wolf on the zone read, and watched him go. <br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyksklN8YXaYIehEYLAO2JPT19rYdeBPTjUF-lMDxJvW4VS2bv6Rv55vV-eur9FJWJ-msoHzNPpTWgEBpV7m3CRvW13dkkzlfCxSbb4GE-_pcxuV0rlvTnkUiTyJemTZVdhPU6KGwd3lKz/s1600/100_0369.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyksklN8YXaYIehEYLAO2JPT19rYdeBPTjUF-lMDxJvW4VS2bv6Rv55vV-eur9FJWJ-msoHzNPpTWgEBpV7m3CRvW13dkkzlfCxSbb4GE-_pcxuV0rlvTnkUiTyJemTZVdhPU6KGwd3lKz/s320/100_0369.jpg" tt="true" width="320" /></a>Wolf takes the handoff cleanly and surveys the defense...</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDs22cI4zf0d9KdkzftPaX9HTITjg0ZGC3wqyWdW9a0asS94Q05eqGUwMHwJ99ZHk2zKmiOPIblWInJYKm1-5ALQG-ZbA932GLNJSQ_NfYdfInJgseW5xgcQfiJjhZX-Z4iWsZYbjDrKA7/s1600/100_0370.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDs22cI4zf0d9KdkzftPaX9HTITjg0ZGC3wqyWdW9a0asS94Q05eqGUwMHwJ99ZHk2zKmiOPIblWInJYKm1-5ALQG-ZbA932GLNJSQ_NfYdfInJgseW5xgcQfiJjhZX-Z4iWsZYbjDrKA7/s320/100_0370.jpg" tt="true" /></a>Uh-oh, he sees a seam...</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxezk0VnoqWS-qZXl08IEcxugKU_WPzhmYgSisbEfVyyUbpNRHHzNddgr4h-JdLO029gcfbzMPxYOwyw__LxoVI0kr4bWZSwwsumUHJW0Ez9bKTewZxaARsM3MH20H0ZMYxqlLCbTsE6K1/s1600/100_0371.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxezk0VnoqWS-qZXl08IEcxugKU_WPzhmYgSisbEfVyyUbpNRHHzNddgr4h-JdLO029gcfbzMPxYOwyw__LxoVI0kr4bWZSwwsumUHJW0Ez9bKTewZxaARsM3MH20H0ZMYxqlLCbTsE6K1/s320/100_0371.jpg" tt="true" /></a>He hits the hole like a freight train and trucks the inside linebacker! He bounces it outside!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx0GR7CPlNbW8GPwb6VgCygGIPFGectBYpmPUsN3JKn7z-P-ny3z0bZk5q0tUeDDqYgN6si8VMuyS1HhmSPz0GsqW9QwtbbT-ZDfJda2WWzPa0OjkJzPxrS2SYGrCZZzm9H72B81dbiHXJ/s1600/100_0373.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx0GR7CPlNbW8GPwb6VgCygGIPFGectBYpmPUsN3JKn7z-P-ny3z0bZk5q0tUeDDqYgN6si8VMuyS1HhmSPz0GsqW9QwtbbT-ZDfJda2WWzPa0OjkJzPxrS2SYGrCZZzm9H72B81dbiHXJ/s320/100_0373.jpg" tt="true" /></a>He's got one man to beat... TOUCHDOWN!!!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9ncD6un1VaER1R_JqzDGj66Cx6rNX20VdTvFHJns1QkDcMNbb4SL-Zx8PT_8536y6OeMWIz112q4dQxFNbX5wNTlNR2pqQMdJ3b2N-7KOJSUV11KdCX8Hxyry-FfOXCGPHnL7ZkTeHe3c/s1600/100_0374.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9ncD6un1VaER1R_JqzDGj66Cx6rNX20VdTvFHJns1QkDcMNbb4SL-Zx8PT_8536y6OeMWIz112q4dQxFNbX5wNTlNR2pqQMdJ3b2N-7KOJSUV11KdCX8Hxyry-FfOXCGPHnL7ZkTeHe3c/s320/100_0374.jpg" tt="true" width="320" /></a>But what's this? He's in the shotgun for the two point conversion! Back to pass... complete for two points! </div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLDq9574P2Io7O8d6TvafUMHtOQIQWOgqwZ792ZK4hns6vEmTOTAJJvpJBvFECXlDC3n_kr4DAFCbAyJmpI1uaPb4AtiCoiAFZQfxxDNsxup5L2S80Ut4GDF1cnSHGz62NJfzaNTVUia8E/s1600/100_0375.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLDq9574P2Io7O8d6TvafUMHtOQIQWOgqwZ792ZK4hns6vEmTOTAJJvpJBvFECXlDC3n_kr4DAFCbAyJmpI1uaPb4AtiCoiAFZQfxxDNsxup5L2S80Ut4GDF1cnSHGz62NJfzaNTVUia8E/s320/100_0375.jpg" tt="true" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">And that makes it Ducks 43, Huskies 3</div><br />
Thanks again to ATQ for putting on the auction, and thanks to Chip Kelly for the autograph! This will take a prominent place on the mantle...at least until one of the boys needs a football and accidentally throws it into someone's backyard where there lives a giant, sports equipment-eating dog. But I think we've got a few years before that happens.Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com2tag:blogger.com,1999:blog-7548218885777004400.post-27977699208685410742010-04-24T09:20:00.000-07:002010-04-26T11:41:30.128-07:00Hungry Like the Wolf<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheJnBCiqsEsY1Ug1EiL24Tw1bB3uSQ6MUBbq9IQ3oWB8ipf7giw3wl4vzImydaZUDIdMPA6rU6MKJryiLrpOe39D9RtRwM-q6lo4W21Or-JuJGfVRANeVyMDcUEX-vx72DZ27FlhjHhl02/s1600/Julia+Wyatt+2010-04-10+100_0269.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheJnBCiqsEsY1Ug1EiL24Tw1bB3uSQ6MUBbq9IQ3oWB8ipf7giw3wl4vzImydaZUDIdMPA6rU6MKJryiLrpOe39D9RtRwM-q6lo4W21Or-JuJGfVRANeVyMDcUEX-vx72DZ27FlhjHhl02/s200/Julia+Wyatt+2010-04-10+100_0269.JPG" tt="true" width="160" /></a>Julia and I were sitting with Wyatt in the waiting room on Thursday, eagerly anticipating our third doctor appointment in three days. (We're now one obscure doctor away from Obscure Doctor Bingo - if anyone knows a good kinesthesiologist, let us know.) Wolf began to fuss a little bit, so I started to sing him a song. But then I realized that I didn't know what to sing him. Each of our previous two children had "their" song; Ben had "Sweet Child of Mine" and Micah had "My Girl" (with the words changed to "Micah" instead of "My Girl" - either way, Micah never seemed to calm down when we sang; I think he knew that the song wasn't actually about him). So Julia and I began discussing what Wyatt's song would be. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Of course, the first thing that came up was "Hungry Like the Wolf" by Duran Duran. Perfect! </div><a name='more'></a><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
"Okay, so let's try singing that one."</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">"Ummmm...why don't you start?"</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">"Alright. Uhhhh...sing me a little bit to get me started."</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">"Duh duh-duh dum...hungry like the wolf..."</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Momentary silence. "Yeah, that didn't really help at all."</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">"Well that's all I know!"</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">"Let's see...[thinks and starts humming]...no, that's 'Ordinary World'...[starts humming again]...no, that's 'Rio Grande.' I don't know, I can't think of it."</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">And so it went, until we finally got into the doctor's office and figured out the chorus. By then, though, we'd realized that "Hungry Like the Wolf" was probably not an appropriate song to sing to a baby (Julia did not think it would be better if she did the moaning parts at the end of the song). Anyway, we're still looking for a good song for Wyatt (we also went through a bunch of Eagles songs, most of which were pretty inappropriate as well - "Seven Bridges Road" was our only prospect).</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">In other news, Wyatt saw a lot of doctors this week, but we didn't get many answers. The occupational therapist just took a look at the way he moved and responded to stimuli. She said he was doing okay in that regard and gave us a few tips on how to start developing his motor skills even though we can't move him around too much.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The endocrinologist was helpful. He talked to us quite a bit about Pamidronate, which from our own research we know is the medication that most OI patients obtain. Pamidronate helps strengthen the bones by hindering the bone cells that destroy bone (yeah, this is a bit confusing, but basically EVERYONE has bone cells that both build and destroy bone tissue - it's just that OI patients have too few of the building cells, which creates an imbalance that weakens the bone). It also helps straighten bones and make babies more comfortable. We have read quite a bit of testimony from other parents that says their children usually hit important milestones (crawling, standing up, walking, etc.) right after receiving Pamidronate. The doctor said that, assuming this is OI (which still isn't 100% confirmed), we would start pretty soon on Pam. He told us that the medicine is normally given intravenously over two hours, however, it could have some negative side effects in infants. To safeguard against the possibility of an adverse reaction, the doctors would probably stretch out the initial treatment to a day or more and keep Wolf in the hospital to monitor his response to the treatment. The good news is that there are no long-term negative side effects that they know of, and the treatment has been quite helpful in a majority of OI patients (possibly reducing fractures by as much as 90%!!!). The doctor said that we would receive the results of blood tests within a couple weeks, and assuming those indicated OI, we would start the Pam treatment within a couple weeks after that. He said that he would even be comfortable starting the treatment if the tests results weren't back yet.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The geneticist didn't really have anything new for us, and she was still skeptical about assuming that Wolf's problem was OI. She told us that if this was a rare type of OI, the blood tests might come back negative. In that case, we would need to wait for the skin sample tests, which will take an additional three weeks. Because the Pam treatment can be a little tough on babies this young, unlike the endocrinologist, she wants to wait until we get a firm diagnosis before starting it. She did tell us that she's never seen anything quite like this (timeline: positive it's OI, then pretty sure it's not OI, then back to almost positive it's OI) in anyone before. Apparently our child is medically unique and will be studied carefully by the Kaiser doctors.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">So really nothing new in terms of Wolf's diagnosis. We have a plan for treatment, which is good. And even waiting a month or two isn't a big deal - from what we've read, most doctors start the treatment in OI babies around three months. The sooner the better, I think, because his bones are so bowed, but it doesn't make sense to put him through something traumatic if it won't help. Overall, I think our doctors are being reasonable about how they're handling this. And when we told them we were going to send in an application to Shriners Hospital, where they have orthopedic experts, they encouraged us to do that. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Unfairly, my assumption was that our doctors would want to keep all his treatment in-house, either because of the money involved, or because their egos would get in the way. This is not the case at all. Our doctors genuinely want the best for Wyatt, and encourage us to take whatever steps necessary to see that happen, even if it involves seeing other doctors from a different hospital. When you hear horror stories about the way some patients are handled by the medical system, we expected the worst. It has been a blessing that the doctors we've seen have been high quality and not at all difficult to deal with. If any of our doctors wind up reading this, I apologize for the negative assumption! You all have been great! </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">At the moment we're still in a bit of limbo - waiting for test results and waiting to hear back from Shriners. In the meantime, Wolf is growing and has been feeling better and better. He doesn't seem to have any pain from his leg at this point, and we go in to get his harness removed next Tuesday. He still hates it when we change his diaper, but that comes with the territory. We'll see how the next month goes for him. Thank you again for all your thoughts and prayers!</div>Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com3tag:blogger.com,1999:blog-7548218885777004400.post-83587598952500867682010-04-20T09:31:00.000-07:002010-04-20T14:19:30.470-07:00Great Job! And Another Opportunity...Auction results are in and we were able to raise $408.01 for the OI Foundation (OIF)! Thank you to everyone who donated items, thank you to everyone who spent time organizing this, and thank you to everyone who bid, especially the four auction winners. We are touched that all of this would be done in response to our son. Because of your generosity, research will be funded and people living with OI will receive support. Thank you.<br />
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As promised, though, there is another way you can give, if you still desire to do so. Whether you lost a bid on the auction or are just hearing about this for the first time, you can still help out the OIF. Matt from ATQ contacted somebody who volunteers with the OIF and told her about what we were doing. Of course, the woman, Julie, is a Duck fan, so she was more than willing to help out. They worked together to organize a special donation. The proceeds of this donation will go directly toward sending people to the OI Conference, which is a three-day gathering in Portland, Oregon, of OI patients and their families, which includes informational sessions and fun social events. Julie, who volunteers in the Portland area, told us she knew personally of several people who really wanted to go but wouldn't be able to afford the entry fee of $150.<br />
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Last night Matt set up the donation account through Paypal, and then set a goal of raising $300, which would send two people to the conference. Well, within 12 hours, we've already blown by that goal, so Matt raised it to $600! If you would like to help out, you can read all about how Matt set this up (there is a link on that page to donate):<br />
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<a href="http://www.addictedtoquack.com/2010/4/19/1432078/oi-foundation-lil-gorby">ATQ: OI Miracle Wolf Scholarship Fund</a><br />
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If you want to donate directly, go here:<br />
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There are so many things that we read about that make us shake our heads in sadness for the state of humanity. Take a few minutes, push all those things out of your head, and consider this: a bunch of Duck fans who post stories and comments on a blog, whom neither Julia or I have ever met, have made the effort to honor Wolf by contributing time and money to a cause that they only heard about several weeks ago. These are amazing people, and I can't even describe how much they've blessed us through their generosity. They saw a need, they worked together, and they responded eagerly and selflessly to that need. Even though we have never met in person, I consider all of the people at ATQ dear friends, and I hope that someday we can meet so I can look each one of them in the eye and say thank you (and then break down in tears, most likely). God can work through anyone, anywhere, and He does. <br />
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Thank you, ATQ! And thank you to everyone else who has participated in this!Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com0tag:blogger.com,1999:blog-7548218885777004400.post-23822294812138845172010-04-16T13:34:00.000-07:002010-04-16T14:36:17.576-07:00Wyatt News, Auction News, Various and Sundry Other Items<strong>Wyatt News:</strong><br />
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We saw the orthopedist this morning, and he seemed fine with the progress of Wolf's broken leg. The x-rays they took were a bit fuzzy, but you could tell that the bone was still broken, although not as much as before. He should still be on track to heal fully within the next two weeks.<br />
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The doctor was able to answer our questions, and I feel a lot more comfortable with how we will proceed if Wolf should break a bone in the future (namely, get him some pain medicine and stay the heck away from the ER - proceed directly to orthopedics, do not pass the hospital, do not pay $250). As far as his current status, Wyatt seems to be feeling good other than scattered instances of discomfort, usually when we first put him in the carseat or when we change his diaper. Things are looking better for our little guy.<br />
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Stay tuned in the next couple weeks for updates from our visits with the orthopedist again, the pediatrician, the geneticist, the occupational therapist, the endocrinologist, and the ecclesiastiotomist. Okay, I made that last one up, but we seriously have appointments set with all of those other people. It's a little overwhelming, so I'm going to do what I do best - make a spreadsheet. It will be nice to have everyone's name, number, and title on a chart for our reference. Yay for Excel and accountants!<br />
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<strong>Auction News:</strong><br />
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Reminder that the auctions for the <a href="http://cgi.ebay.com/Authentic-Oregon-Chip-Kelly-Autographed-Football_W0QQitemZ260583488032QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item3cabfc7a20">Chip Kelly autographed football</a> and <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260583488358">autographed visor</a> will be done in two and a half hours (4 pm Pacific time), so get your bids in now! <br />
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The <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260583931905">Mike Bellotti autographed football</a> can be bid until Saturday at 1 pm Pacific Time, and the <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=150432918261&ssPageName=STRK:MESELX:IT">Ernie Kent autographed basketball</a> can be bid on until midnight on Sunday. <br />
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All proceeds from these auctions go to benefit the OI Foundation. I don't want to discourage bidding, but I understand that some people may not be able to afford those items and still want to donate to the cause. Matt from ATQ is working with someone from the OI Foundation to set up a special way to donate on Wyatt's behalf. The proceeds of these donations will most likely go toward scholarships that allow people to attend the OI Conference in July. So if you're thinking, "I'd really love to help out, but I just can't beat those bids!" then stay tuned. I'll get more information on this as soon as I have it.<br />
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<strong>Various and Sundry:</strong><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRR7hvdj62o0WHkUFSJXKEkGsj1RqkMmfqPskgM4q32ewF7kylwJ6AT1VRDpDMqSNGT2uXyKn0nAOjd6TfbDwGCHYOdE_FgX_Nw6HvZvDLI7JkRMWvVCxHCW0PyZ8lbLGR4o-QE5Tn0WA9/s1600/DSCF2568.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRR7hvdj62o0WHkUFSJXKEkGsj1RqkMmfqPskgM4q32ewF7kylwJ6AT1VRDpDMqSNGT2uXyKn0nAOjd6TfbDwGCHYOdE_FgX_Nw6HvZvDLI7JkRMWvVCxHCW0PyZ8lbLGR4o-QE5Tn0WA9/s200/DSCF2568.JPG" width="150" wt="true" /></a></div>I meant to post this last week, but kept forgetting. Here's a picture of Wolf and Julia at Wolf's first ever baseball game! We went with the whole family and had a fun time, except for the fact that the Angels couldn't get Wolf a win. Of course, they haven't been getting anybody else a win, either... <br />
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I want to say thank you once again to all the people who have helped us during this time - bringing us meals, taking care of Ben and Micah, praying for us - it's been incredible. So to everyone who has assisted us in some way, even the smallest way, know that we are extremely grateful, and know that we thank the Lord for you every night. May God bless you all!<br />
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Lastly, I just want to say how proud I am of Wolf's big brothers, Ben and Micah. Neither of them really understands what's going on, and neither is able to read this now. But maybe some day they will, and I want them and everyone else to know how great they've been. Julia and I haven't been able to give them all the attention that they need, but they've been good boys through it all. They have behaved themselves for people who took care of them during our hospital visits. They have been very gentle and kind toward Wyatt. Ben and Micah, we love you and we're proud of you!<br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOk2lJ0D-Iq6A2ljtSxBFg_OPzImj0FGnPTjQbDrJLKYaGM8jw6a22SH-8qJol0zx2D4k7uYJoV2gTZ_uSlspbM8mAMw8G7ANV1-bxIa8G-7BV9OKeK8m1p0qRrndeqK72uxfVNdkECdkh/s1600/Ben+Micah+Wyatt+2010-03-26+100_0219_sm.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOk2lJ0D-Iq6A2ljtSxBFg_OPzImj0FGnPTjQbDrJLKYaGM8jw6a22SH-8qJol0zx2D4k7uYJoV2gTZ_uSlspbM8mAMw8G7ANV1-bxIa8G-7BV9OKeK8m1p0qRrndeqK72uxfVNdkECdkh/s400/Ben+Micah+Wyatt+2010-03-26+100_0219_sm.jpg" width="300" wt="true" /></a></div>Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com2tag:blogger.com,1999:blog-7548218885777004400.post-77142137478349312232010-04-14T13:52:00.000-07:002010-04-14T13:52:51.576-07:00Reminder: Auctions for OI Foundation have two days left!Just as a reminder, there are a few auctions ongoing posted by the generous guys over at <a href="http://www.addictedtoquack.com/2010/4/8/1412319/little-gorby-auctions-up">Addicted to Quack</a>, with the proceeds going to benefit the <a href="http://www.oif.org/site/PageServer">OI Foundation</a>. The auctions run out Friday, April 16, at 4:15 PM. Hopefully you'll all have received your tax refunds in time to place your bids!<br />
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Links to the items after the jump (including a new item!).<br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Thanks again to everyone who donated items or spent time organizing this. Here's the link to the original post about the auction: <a href="http://ourmiraclewolf.blogspot.com/2010/04/wolves-and-ducks-living-together.html">Wolves and Ducks, Living Together</a>. Happy bidding!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgezJvRT_KVvFYOVriE1KhDt5OA3NVMiN-eXzh39yb_ny4xfBLMFF4Mlv5z6dYIyggq4bKE1SrWrG64nDonG9HXxq4rNOKBX-8aE1w1HXosyrLYBy7j1u70HXA3n0Rdpz1xq44LlltVz7NO/s1600/!BqbC5u!!mk~%24(KGrHqIOKiwEuZwZsFhzBLvp%2BvPkFg~~_35.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgezJvRT_KVvFYOVriE1KhDt5OA3NVMiN-eXzh39yb_ny4xfBLMFF4Mlv5z6dYIyggq4bKE1SrWrG64nDonG9HXxq4rNOKBX-8aE1w1HXosyrLYBy7j1u70HXA3n0Rdpz1xq44LlltVz7NO/s200/!BqbC5u!!mk~%24(KGrHqIOKiwEuZwZsFhzBLvp%2BvPkFg~~_35.jpg" width="200" wt="true" /></a><a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260583488358">Chip Kelly autographed Oregon visor</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Current bid: $106.01</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS0RTdI12DvmaGtQon-LHgTvn9MXTdVzYWwQXhwiEP5VsPVdmqnnWxcNoeET7NecUwib2EAxiDCvIwjIYb-oDtyt9Q1LiH_ymyCACSaLZBWyGsK9v-5a4DLRcNobVQaHMIDGfQecZjjrMz/s1600/!BqbDEvQB2k~%24(KGrHqYOKigEu,(f-,rEBLvq!2EhV!~~_35.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS0RTdI12DvmaGtQon-LHgTvn9MXTdVzYWwQXhwiEP5VsPVdmqnnWxcNoeET7NecUwib2EAxiDCvIwjIYb-oDtyt9Q1LiH_ymyCACSaLZBWyGsK9v-5a4DLRcNobVQaHMIDGfQecZjjrMz/s200/!BqbDEvQB2k~%24(KGrHqYOKigEu,(f-,rEBLvq!2EhV!~~_35.jpg" width="200" wt="true" /></a><a href="http://cgi.ebay.com/Authentic-Oregon-Chip-Kelly-Autographed-Football_W0QQitemZ260583488032QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item3cabfc7a20">Chip Kelly autographed football</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Current bid: $182.50</div><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwLiJa-RNHJnEvQzj6f00I9zHEOUDKWkoa96c-w86V2OKi70nTs3Ti2Z7tOm2xNL4gkoSrssfKfOipxG1ixj4AMsrISDm1RPBl4wBsM2OoL04HPX2Wm0WNzXxAGzjmucG4oYIO26DjvLLh/s1600/!BqnbIiQ!Wk~%24(KGrHqYOKioEu,g2RlL2BLwNh8OGWQ~~_35.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwLiJa-RNHJnEvQzj6f00I9zHEOUDKWkoa96c-w86V2OKi70nTs3Ti2Z7tOm2xNL4gkoSrssfKfOipxG1ixj4AMsrISDm1RPBl4wBsM2OoL04HPX2Wm0WNzXxAGzjmucG4oYIO26DjvLLh/s200/!BqnbIiQ!Wk~%24(KGrHqYOKioEu,g2RlL2BLwNh8OGWQ~~_35.jpg" width="200" wt="true" /></a><a href="http://cgi.ebay.com/Authentic-Oregon-Chip-Kelly-Autographed-Football_W0QQitemZ260583488032QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item3cabfc7a20">Mike Bellotti autographed football</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Current bid: $61.00 (this auction does not expire until Saturday at noon)</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiXQw5GhDcN80-q_2Ih-WhijRfbWhfOcxah5KxjqSoF1WK1sUX6qPmZYc27RGb_iLxQynrkKWKn6GoARCVzuqer6-MPRxg1X6Pend6sPysWgm2hf-c5IVvfAt-A5y-orCfOYTQw7XqeTYJ/s1600/!BqsVGGg!Wk~%24(KGrHqIOKioEuZmocM-sBLwhS,IKj!~~_35.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiXQw5GhDcN80-q_2Ih-WhijRfbWhfOcxah5KxjqSoF1WK1sUX6qPmZYc27RGb_iLxQynrkKWKn6GoARCVzuqer6-MPRxg1X6Pend6sPysWgm2hf-c5IVvfAt-A5y-orCfOYTQw7XqeTYJ/s200/!BqsVGGg!Wk~%24(KGrHqIOKioEuZmocM-sBLwhS,IKj!~~_35.jpg" width="186" wt="true" /></a>NEW ITEM! <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=150432918261&ssPageName=STRK:MESELX:IT">Ernie Kent signed basketball</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Current bid: $15.50 (this item was donated by thesportsbrewery.com and the auction is open until Sunday night at midnight)</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">That's $365 raised so far! Let's see if we can get the total to $500. Thanks for your support!</div>Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com0tag:blogger.com,1999:blog-7548218885777004400.post-1820044953810568262010-04-14T08:21:00.000-07:002010-04-14T08:21:25.265-07:00We're home!I mentioned this in the comment section of the last post, but it deserved its own space. We got home from the hospital yesterday afternoon. Wyatt is doing well; he has even let us change his diaper a couple times without screaming (which was rare even before he broke his leg). The pain seems to have subsided.<br />
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He still needs to wear the harness, but the doctor said he should be healed within a couple weeks. The great thing about babies is how fast they can overcome stuff like this.<br />
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It's great to be home with our older boys. We missed them a lot while we were in the hospital. Special thanks to grandparents who took care of them for the last couple days. And thank you to all of you who prayed for us - other than the first 16 hours or so, Wyatt has been able to be comfortable most of the time. Let's hope that we can avoid these incidents in the future!Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com3tag:blogger.com,1999:blog-7548218885777004400.post-28730708321735328952010-04-12T13:16:00.000-07:002011-07-22T09:22:58.650-07:00The first fractureGod is good.<br />
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Lately I've been saying that as a jubilant praise in response to the amazing power of the Lord. Today I'm using it as a reminder to myself that no matter what happens, it's still true.<br />
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Last night Wyatt broke his right femur (and possibly his left - it's difficult to tell on the x-rays). We took him to the emergency room and he got a harness put on this morning, but he's in a lot of pain. Tylenol helps some, but not a lot. We're going to be in the hospital for the rest of today and maybe tonight. We're praying that the bones can heal quickly and the pain would subside. I have to run, but I'll keep you updated when I can.<br />
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<strong>Update:</strong> Here are the details as they currently stand.<br />
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Last night around 8 pm, Wyatt started crying. This didn't really sound like a normal cry, but we exhausted all the normal infant options: was he gassy? No, he didn't seem to be gassy. Did he need to be changed? Oh my yes, but putting him in a clean diaper only exacerbated the crying. Was he hungry? Yes! Feeding him stopped the crying. <br />
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But much to our chagrin, that was only a lull in the storm. Immediately after he was done eating, he started screaming again. And that's when Julia noticed Wolf was favoring his right leg and seemed to be bothered whenever someone moved or put pressure on that leg. Afraid that he had broken something, we decided to take him to ER.<br />
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That was not a fun time. They took x-rays, which required me to stretch his legs out, and I can only imagine how painful that was for him. We waited for several different doctors before an orthopedist finally informed us that his right femur was indeed broken right at the hip, and they would need to put him in a cast or a harness. Meanwhile, they wouldn't give Wyatt any pain killers because they needed to rule out an infection as a cause for the pain. By the time they got us out of the ER and moved us to a new room, Julia and I needed pain killers for our headaches. We didn't get any either.<br />
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Finally they gave poor Wolf some Tylenol, and that seemed to calm him down enough so he could sleep. In the morning, the pediatric orthopedic surgeon came in and put him in a harness. The harness is this velcro strappy thing that goes over the shoulders and around the chest, which is all attached to stirrups for his feet to keep his legs in a stable position. He'd look pretty tough if we could attach grenades to it or something. Judging by the screaming that occurred while the harness was being fitted, Wolf did not seem to realize the baby-Rambo potential. The worst part was that the doctor let us keep the packaging it came in, presumably so we could figure out how it was supposed to go back on if we ever have to take it off. The picture on the package shows the happiest baby you've ever seen lying there in this harness. If THAT baby had a broken femur when the picture was taken, I wanted Wyatt to get whatever drugs he got. Needless to say, the picture completely annoyed me.<br />
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The doctor told us this morning that the fracture(s) lead him to think that this is probably OI. He informed us that the shape of Wolf's femurs puts additional stress on the hip area, which is what led to the break. Julia and I are unaware of anything that might have caused this. This isn't a final diagnosis yet, but the doctor has a pretty solid opinion about it. We are still waiting to meet with him again about how Wolf is responding to the harness and where we go from here to prevent this from recurring.<br />
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You remember when we talked about highs and lows in our welcome post? I'll give you three guesses to figure out which category this episode belongs in. Still, if there's anything positive to be gained it's that hopefully we're much closer to a firm diagnosis, and, consequently, a plan for treatment. I am also learning a tough, but valuable lesson - God's work isn't complete when I think it is. Sometimes He doesn't do these things all at once, and we need to continue to be faithful in prayer, just as He is faithful to listen. I am so thankful that Wyatt is here with us, but I am going to be praying extra hard that the healing work would be finished.<br />
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Thanks again for all your prayers. We need them today.Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com10tag:blogger.com,1999:blog-7548218885777004400.post-58749408089528121342010-04-10T10:18:00.000-07:002010-04-10T17:03:10.867-07:00What does Wolf have?As I mentioned in Wyatt's story, it's currently a bit of a mystery as to what is actually going on with his bones. So I thought I'd go through what we know and what we don't know to explain why this has the doctors bamboozled.<br />
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Before I do that, I want to mention once again that there is an auction taking place with the proceeds going to benefit the <a href="http://www.oif.org/site/PageServer">OI Foundation</a>. (Yes, I know we're not sure Wolf has OI, but that's not really important - it's a great organization and we've already used many resources they've provided. We fully support the foundation either way.) Chip Kelly, Oregon's football coach, was kind enough to sign a <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260583488358">visor</a> and a <a href="http://cgi.ebay.com/Authentic-Oregon-Chip-Kelly-Autographed-Football_W0QQitemZ260583488032QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item3cabfc7a20">football</a> (and we just got a <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260583931905">Mike Bellotti-signed football</a> donated as well). So go bid for a great cause! Thanks again to the guys at <a href="http://www.addictedtoquack.com/2010/4/8/1412319/little-gorby-auctions-up">ATQ</a> for putting this on (by the way, my screen name over at ATQ is Gorbachav5, so Wyatt is known as "Little Gorby" over there). Here's the <a href="http://ourmiraclewolf.blogspot.com/2010/04/wolves-and-ducks-living-together.html">whole story</a> about the auction. <br />
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What is osteogenesis imperfecta? You can find some good facts at the <a href="http://www.oif.org/site/PageServer?pagename=AOI_Facts">OI FAQ</a>, and it appears <a href="http://en.wikipedia.org/wiki/Osteogenesis_imperfecta">Wikipedia</a> has some solid information if you want a primer. The basics are these: OI is a genetic mutation that causes a deficiency in type I collagen. This collagen makes up the connective tissue in bones, so a deficiency causes bones to be brittle. There is a wide range of severity - some people go through life with only a few more broken bones than a normal person, while in others the disease is lethal.<br />
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So why do we think Wolf has OI? Here's what we know:<br />
<ul><li>His long bones are shorter than normal and bowed. His femurs are especially curved, indicating there is something causing the bones to be soft.</li>
<li>His skull and spine were thinner than they should be. During the two visits to the specialist that we made, she commented that it was unusual to be able to see the area around the brain and the spinal column at his stage of development.</li>
<li>His ribs were malformed, causing his chest to be smaller than normal.</li>
</ul>Why are we now questioning the OI diagnosis? Here's what else we know:<br />
<ul><li>Despite going through a natural birth, Wolf had no fractures. In fact, the x-rays taken immediately after he was born showed that what we thought was a prenatal fracture in his femur was actually just a bend in the bone.</li>
<li>He has a good temperament and doesn't mind being handled. According to the geneticist we saw, most OI babies dislike being held or moved in any way because it causes them pain and discomfort.</li>
</ul>Okay, so what IS going on with our little boy? We just don't know yet. Both the specialist we saw at Cedars Sinai and the doctors at Kaiser are performing blood tests on the umbilical cord blood. The specialist, who hasn't seen Wyatt since he was born but has looked at the x-rays, still thinks it's a rare form of OI. The geneticist we've seen thinks it's probably something else; one thing she suggested as a possibility was femoral hypoplasia, but there are inconsistencies with that diagnosis as well. Hopefully we will receive the results of the blood tests in the next few weeks and they'll tell us something about Wyatt's health.<br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The other thing we don't know is how this needs to be treated (or if it CAN be treated, or if it needs any treatment at all). Are his legs going to straighten out so he can walk and run normally? Will bisphosphonates (the most effective treatment for OI in children) help him? Will he need surgery? Is there anything we can do now to help his bones grow properly? We don't know yet. We may not know for quite awhile. We'll just keep doing what we're doing and pray that the doctors can solve the mystery.<br />
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As I watch our little Wolf looking around as he sits in his bouncer, I realize that I forgot one other thing that we know:</div><ul><li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkNtzaR7wd9v2G-FAD-ZrtDvqwHriH0oh-iWvE4T3Blgtz_4EyVk5rZpuGzh_2Hpz3MDg2rwirJfbfl78hS-_orhNbgMZHCoXuMmGtOvt7jHSGMyFITwYX9Op_rc3N253JYe3oY1GWypKD/s1600/100_0272.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkNtzaR7wd9v2G-FAD-ZrtDvqwHriH0oh-iWvE4T3Blgtz_4EyVk5rZpuGzh_2Hpz3MDg2rwirJfbfl78hS-_orhNbgMZHCoXuMmGtOvt7jHSGMyFITwYX9Op_rc3N253JYe3oY1GWypKD/s200/100_0272.jpg" width="200" wt="true" /></a>God is good!</li>
</ul>Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com3tag:blogger.com,1999:blog-7548218885777004400.post-50711566227880963012010-04-08T22:33:00.000-07:002010-04-10T16:07:12.851-07:00Wolves and Ducks, Living Together<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6fvt7ylKzLE68sWVY2JPh9YdTujo_Rc5XUMACGqKEt3tOZhCAYxsT86BLF-NlBsIaiUiwpo8_ZcKZobfH_Lsb0CKnR7lnMlmenuNWr4SoDJjaCeJ5j4BdwwH6w9yZEV2Ex-bzvV1BjXTZ/s1600/oregon_ducks_2-full.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="184" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6fvt7ylKzLE68sWVY2JPh9YdTujo_Rc5XUMACGqKEt3tOZhCAYxsT86BLF-NlBsIaiUiwpo8_ZcKZobfH_Lsb0CKnR7lnMlmenuNWr4SoDJjaCeJ5j4BdwwH6w9yZEV2Ex-bzvV1BjXTZ/s200/oregon_ducks_2-full.jpg" width="200" wt="true" /></a>In the wild, wolves eat ducks (I think...I may have missed that part of the National Geographic special). But in this case, our Wolf is an honorary Duck, since both his parents went to the beautiful University of Oregon. And because of his honorary duckiness, the great community over at <a href="http://www.addictedtoquack.com/">Addicted to Quack</a> (ATQ) has put together a little fundraiser on Wyatt's behalf.<br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">ATQ is a blog I frequent for Duck news, college sports commentary, and conversation with a fantastic community of Oregon alums, students, future students, and fans. When they heard about Wyatt's condition, many of them offered their prayers and best wishes. Then they went above and beyond.<br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcJDdCQRFV_ZCDpIs5KGjuZS3i11J8m-tWBO2QhVRCk_BGN_GwPfi1eDH3LRxLKAfxRFumC849rj9XehI7LTkGyXT5WsW1Q9KjbcJz6D8GvSNUaVvRTiLc3CLcFclyu623bW-OYrkTWVJR/s1600/chipkelly.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcJDdCQRFV_ZCDpIs5KGjuZS3i11J8m-tWBO2QhVRCk_BGN_GwPfi1eDH3LRxLKAfxRFumC849rj9XehI7LTkGyXT5WsW1Q9KjbcJz6D8GvSNUaVvRTiLc3CLcFclyu623bW-OYrkTWVJR/s200/chipkelly.jpg" width="200" wt="true" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">One of them, Will (axemen23), knowing Oregon football coach Chip Kelly loves to support causes like this, emailed Coach Kelly (pictured here in all his visored glory - no he's not really that mean, that's just his "I don't deal in hypotheticals" stare), told him our story, and asked if he might be willing to help. Coach Kelly was more than happy to oblige and signed a visor and a football. Will, with the help of Dave, Matt, and Quinn (other illustrious members of ATQ), then put these items up for sale on eBay, with the proceeds going to the <a href="http://www.oif.org/site/PageServer">Osteogenesis Imperfecta Foundation</a>, an organization that funds research and provides a community for those affected by OI (by the way, my screen name over at ATQ is Gorbachav5, so Wyatt is known as "Little Gorby," just so you know who they're referring to).<br />
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<strong>UPDATE: </strong>The items have been taken off of eBay for some reason. I'm trying to figure out why that is. Once they're back up, I'll let you know and update the links. Sorry about that.<br />
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<strong>UPDATE 2:</strong> Okay, the items are relisted and the links below should work again. Apparently because so many cool people in Oregon want to help the OI Foundation (and want sweet Chip Kelly autographed football stuff), eBay thought that there was a shilling scam. They know what's going on now, so that shouldn't happen again. Resume your bidding!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Here is the link to the visor: <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260583488358">Chip Kelly signed visor</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Here is the link to the football: <a href="http://cgi.ebay.com/Authentic-Oregon-Chip-Kelly-Autographed-Football_W0QQitemZ260583488032QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item3cabfc7a20">Chip Kelly signed football</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<strong>UPDATE 3:</strong> Quinn over at ATQ donated a <a href="http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260583931905">Mike Bellotti-signed football</a> for the auction. For those who don't know, Bellotti was the previous football coach at Oregon.<br />
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If you're interested in some sweet Oregon memorabilia for your collection, or if you're just interested in aiding a great cause for people affected by OI (or maybe a little of both!), go to those links and place your bids!</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5lOrqIfc-YkV2lzFEeGETC_xPjuEt6fSejJvWHelFUQka9SZChLNtInqDsi1hF4vTOcrEHz5R4bdYGo0C7sqO21rkihY9XYImxXMMEbm0-kMa45bAwIYewGkZGEygANGnaUyk0Nb31MxZ/s1600/Dan+Wyatt+2010-03-31+100_0227_sm.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5lOrqIfc-YkV2lzFEeGETC_xPjuEt6fSejJvWHelFUQka9SZChLNtInqDsi1hF4vTOcrEHz5R4bdYGo0C7sqO21rkihY9XYImxXMMEbm0-kMa45bAwIYewGkZGEygANGnaUyk0Nb31MxZ/s200/Dan+Wyatt+2010-03-31+100_0227_sm.jpg" width="181" wt="true" /></a>Thanks to all the guys at ATQ who put this together. You guys are awesome! Your support and encouragement has been very touching to me and Julia. Wolf shows you guys his version of Blue Steel in gratitude.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Thanks also to Coach Kelly, who took a few minutes out of a busy practice schedule to make a meaningful difference in people's lives. Oregon football is in good hands.</div></div><br />
Go Wolf! And go Ducks!Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com3tag:blogger.com,1999:blog-7548218885777004400.post-22525879249094561092010-04-07T01:41:00.000-07:002010-04-07T23:05:38.665-07:00Wyatt's StorySo just to get everyone caught up, here's the story of Wyatt so far. There aren't any shootouts at the OK Corral, but that doesn't mean it hasn't been a harrowing ordeal. There have been times when it seemed like a gunfight might have been easier to handle compared to the emotional roller coaster we were on. But that's getting ahead of ourselves.<br />
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<strong>The Beginning:</strong><br />
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This pregnancy started very similarly to our other two. We found out we were pregnant in July, Julia had an easy first trimester, and we went in excited for our 18 week ultrasound. The doctor was just as excited to tell us we were having... another boy. Yay for variety. Julia was not encouraged when I suggested that our three boy family would be like the Taylors from Home Improvement. I would be like Tim, only more likely to kill myself using power tools.<br />
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90's TV show references aside, after the appointment we joked a little bit about God's sense of humor and then agreed that we were blessed. They could all share a room and we wouldn't have to splurge on a bunch of new clothes. Besides, three boys would be fun. Right? RIGHT? Julia began looking for a therapist...<br />
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<strong>Warning Signs:</strong><br />
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We got a call from the geneticist's office shortly after that ultrasound. Apparently, there were some issues and they wanted to discuss their findings. Wyatt's long bones (his femur and humerus bones) were measuring fairly short for his stage of development. They had also noticed an irregularity in his heartbeat. It was probably nothing, the doctor said, but they wanted to be sure it wasn't something like Down's Syndrome. We had an amniocentesis performed to check for some of the indicators of a genetic defect, but all the tests came back negative.<br />
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We also saw a pediatric cardiologist about the heartbeat. He told us that Wyatt's heart looked very healthy and that the irregularity was just a random skipped beat every so often. It would probably go away on its own, but even if it didn't, there was nothing to worry about. Given this news, and taken in conjunction with the negative test results from the amnio, it seemed like this was just a bump in the road.<br />
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<strong>Then They Dropped the Bomb:</strong><br />
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The next two ultrasounds, however, did not go well. It was apparent on the monitor that his femurs were still VERY short, and they now displayed visible signs of bowing. The second ultrasound seemed to show that Wyatt's left femur was sharply bowed, so much so that it appeared broken. Could you imagine swimming laps in a pool and having your femur snap in half? That's essentially what had happened, which meant that there was something clearly wrong with his bones. The doctors told us it was almost certainly some form of skeletal dysplasia. They sent us to a specialist at Cedars-Sinai in Los Angeles to examine him.<br />
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I will never forget that visit. The doctor used a detailed ultrasound to show us all the indicators, and explained to us that our baby had <a href="http://www.oif.org/site/PageServer?pagename=AOI_Facts">osteogenesis imperfecta</a> (OI), also called brittle bone disease. She went on to say that because of the bowing of the bones, their extreme shortness, and the suspicion that there were fractures, it was most likely a very severe case of the disease. Wyatt's bones were abnormally soft and brittle, which meant that his ribs would not develop properly, and which would in turn hinder the development of his lungs, especially if there were rib fractures. The doctor gave our baby a very low chance of surviving, even suggesting that we consider aborting the pregnancy. Through our tears, we told her we would not be taking that course of action.<br />
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I cannot describe the devastation that Julia and I felt at hearing this news. The worst was the feeling of helplessness. As a father of two little boys, some of my favorite moments are the ones where I get to offer comfort after a fall and then help them get on their feet and back out on the playground. But this was my little baby, he was broken, and there was nothing I could do about it. Julia and I had to let it sink in that because of some random, unforeseeable alteration of Wyatt's DNA, he was, at best, going to be born with stunted limbs and in severe pain. He would probably never walk or crawl. That was the BEST case scenario.<br />
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The drive home from L.A. was at once interminable and fleeting. So much raw emotion coursed through us. How could this happen? WHY would this happen?<br />
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<strong>The Miracle Starts:</strong><br />
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When we got that prognosis, we had about three and a half months left in the pregnancy. These should have been months filled with tears, despair, doubt, and emptiness. I won't lie to you and say that we didn't experience those things. We did. I distinctly remember lying awake in bed many nights, asking God to let our son live, and then becoming angry with myself when the thought entered my head that it might be better for everyone if God didn't allow that. Those were not good nights. But we experienced those negative feelings to a far lesser extent than I imagined. And I attribute that entirely to God's peace in our lives.<br />
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Immediately following the bad news, we decided to reach out to our family, friends, and church and ask for as much prayer as they could muster. I am humbled by the response we received. So many people sent us emails of encouragement and told us they were faithfully praying for Wyatt, Julia, and I, as well as Ben and Micah. As one amazing display of God's work in our lives, when we went back to the pediatric cardiologist for a follow-up appointment, not only had the heartbeat irregularity completely disappeared, but the cardiologist laid hands and prayed for us right there in the exam room. Simply incredible. Because of the prayers of these people, we were able to continue with our lives on a somewhat normal basis. We had a great Christmas. Micah's second birthday party in January was a blast.<br />
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As for our own prayers, every night when we tucked Ben and Micah into bed, we prayed that if it was God's will, He would heal our little baby. If it was not in His will, then we asked that He grant us peace and love, and help ease any pain Wyatt might be feeling. I prayed some version of this prayer countless times during those months.<br />
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About a month before his due date, because we wanted to be sure that we were making the right decisions regarding Wyatt's birth, we went back to see the specialist at Cedars-Sinai. The doctor reiterated the diagnosis of severe OI, but gave us some hope in that his chest might be big enough to support functioning lungs. It wasn't certain that he would live, but at the same time, the other option wasn't a certainty either.<br />
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<strong>The Birth:</strong><br />
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Wyatt was born at 1:53 PM on Wednesday, March 17th. The first few seconds after he was born felt like hours as I waited for him to breathe. But then he took his first breath, the doctors sucked some fluid out of his lungs and put a breathing mask on him. We had agreed that if he could not breath on his own, we would not use a ventilator, as that would most likely break his ribs and cause more pain. As it turns out, it wasn't necessary. Wyatt was alive, and he could breathe on his own!<br />
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The doctors took him to the Neonatal ICU for monitoring and he looked great! He only needed extra oxygen for a few hours, and he ate like a champ when the nurses gave him some formula. The doctors took x-rays and found zero signs of fractures, even on his left femur. Yes, this baby, who months before had bones so soft that they appeared to break in the womb, had incurred no fractures during a natural birth, was in no pain, and was breathing without assistance. Praise the Lord!<br />
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He stayed in the NICU for 24 hours as a precautionary measure, but we got to bring him up to our room the following day and take him home the day after that. There were some interesting experiences with the nurses, since we needed to make sure that they handled him as gently as possible (we scared one nurse to the point where she almost refused to touch him, while another nurse was adamant that because he survived birth, he was obviously just fine). But there were no incidents and we got him home safely.<br />
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<strong>Current Status:</strong><br />
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So what happened to the OI that we were so sure of? Nobody knows right now. The geneticist we saw immediately after leaving the hospital is stumped. Because of the lack of fractures and his comfort level (most babies with OI greatly dislike being handled because it causes them pain), she is skeptical that he has OI, unless it is a rare form of the disease. Wyatt's legs (and arms to a much smaller extent) are still bowed, so there is obviously something going on with his bones, but no one seems to know what. There are currently blood tests being done to determine whether OI is still the most accurate diagnosis. Hopefully we will receive the results of those tests within a few weeks.<br />
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Wyatt is totally unconcerned with all of this as he eats, sleeps, poops, and grows (quite the life of ease, I tell you). He is doing just fine! We still handle him very gently as a precaution, but he seems comfortable being held. God has done a miracle in this child! We prayed for healing, and it happened!<br />
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<strong>Looking Forward:</strong><br />
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We have quite a few doctor's appointments coming up, as different specialists take a look at him to attempt to nail down a diagnosis and to determine if any treatment is necessary. We'll post updates on here as those happen. If you feel called to pray, please pray that God would give wisdom to these doctors. And pray that God would continue his healing miracle in Wyatt so that he would grow like a normal child.<br />
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Also pray that God brings people into our lives with whom we can share this incredible testimony. I can't even describe how amazing it is, after all that we went through, to sit here holding my little child as he sleeps. Our miracle Wolf.Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com9tag:blogger.com,1999:blog-7548218885777004400.post-27925746569357363102010-04-07T01:11:00.000-07:002010-04-08T07:48:12.137-07:00Welcome!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt26ku-PnfsM1zPBdp9ozUe646I8i_MrtULA59L89Xs_pv_0GqVbLfMIOREkPRT0m4TiiBwViUVyVNaGXWycHlveImcmzvxWdHsXT4WHdcy2SoSHBGGY2zPa-0Grug1XdlgZgfsyxhRWKr/s1600/Wyatt+2010-03-26+100_0213_sm.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5457312135995672530" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt26ku-PnfsM1zPBdp9ozUe646I8i_MrtULA59L89Xs_pv_0GqVbLfMIOREkPRT0m4TiiBwViUVyVNaGXWycHlveImcmzvxWdHsXT4WHdcy2SoSHBGGY2zPa-0Grug1XdlgZgfsyxhRWKr/s200/Wyatt+2010-03-26+100_0213_sm.jpg" style="cursor: hand; float: left; height: 150px; margin: 0px 10px 10px 0px; width: 200px;" /></a> <br />
<div>Welcome to Miracle Wolf - the blog dedicated to our newborn son, Wyatt. Why Miracle Wolf? Well, the miracle part is easy, considering Wyatt was given almost no chance to live more than a week or two past birth. He's our miracle.<br />
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</div><div></div><div>So why Wolf? His full name is Wyatt Lynn Flude. We liked the name Wyatt (I mean, who doesn't think Wyatt Earp is one of the coolest characters in American history? Plus Doc Holliday Flude sounded funny). Lynn is his grandfather's (on his mom's side) middle name. His initials are W.L.F. He's our wolf. After seeing him attack his pacifier, you'll agree that the moniker is appropriate.<br />
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</div><div></div><div>So why create a blog? Because we (Daniel and Julia, Wyatt's parents) have a ton of free time, what with our other two boys (Ben, 3, and Micah, 2) and Wyatt to care for. Wait...no that's not it.<br />
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</div><div></div><div>Actually, there are several reasons. The first, and most important, is that we have been extremely blessed by the outpouring of love and support, particularly in the form of prayer, our family has received during this time. This blog is primarily to keep you, our family and friends, apprised of Wyatt's health and progress. Hopefully the good news will encourage you and be a constant testimony of God's goodness in our lives and his faithfulness to answer prayer.<br />
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</div><div></div><div>Secondly, the sheer volume of support we have received is so widespread that we just can't keep track of it all! There are people we've never met in states we've never visited praying for us. Our sincere hope is that a link to this blog gets passed along to each of those people. It was just too much to try to include everyone in a mass email.<br />
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</div><div></div><div>Thirdly, it will be a great way for us to document our emotions and reactions during this phase of our lives. We have no idea where this journey is going to eventually lead, and it will be great to have a record of the highs and lows, the hopes and doubts, the exultations and the fears. <br />
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</div><div></div><div>Finally, it will be a great way for us to hear from those of you who we may not get the privilege of meeting. Please feel free to leave your comments. We will do our best to respond to as many of them as we can.<br />
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</div><div></div><div>We hope to get the design of the site customized here in the next few weeks, so bear with us. Enjoy what's here and don't be shy about offering suggestions or tips. Thank you for visiting! </div>Danielhttp://www.blogger.com/profile/16264246154526243474noreply@blogger.com3