tag:blogger.com,1999:blog-32234976875373200212024-03-19T11:34:55.044-07:00The Adventures of Carter BlazeA look into our life with Duchenne...Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-3223497687537320021.post-55283502958469815532012-06-07T10:22:00.002-07:002012-06-07T10:22:35.392-07:00Team Altura: Carter's Climbers Climb to CureDuchenne2012<br />
We are getting things together for our second annual Climb to CureDuchenne. I hope you can join us on June 23rd at Altura Credit Union on 14th St. We'll be there from 8am-1pm and will be hosting a bake sale as well as climbing Mt. Rubidoux. To make a donation or join our team, Please <a href="http://www.cureduchenne.org/goto/TeamAltura2012">CLICK HERE</a>!Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com34tag:blogger.com,1999:blog-3223497687537320021.post-75454966192043239602012-06-06T20:00:00.000-07:002012-06-07T11:20:27.984-07:00Update<br />
As always, it's been awhile. Lots to update on. Carter finished up with 2nd grade May 25th. Where has the time gone?!? He did very well again this year and again made the Principal's list every trimester (all A's, all year!). This year he took his scooter all year and it worked out great. He uses it outside the classroom for long distances and out on the playground to keep up with his friends. His strength is still pretty good and he's able to get around really well, but tired much quicker than his peers. <br />
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Medically, things were great most of the year. However, May 4th we had quite a scare and Carter was admitted to the hospital. He was running a slight fever the afternoon before, but it went away with Motrin and by bedtime he was just complaining of a slight stomach ache. We awoke a little after 3am to him crying that he had just vomited and that his chest hurt. The chest pain became intese and he was screaming in pain and started having trouble breathing. He's had muscle pain after vomiting in the past, but never anything like this. We rushed him to the ER and when we arrived his heart rate was high and ozygen a little low, but he stabilized quickly. The chest pain lasted about 25 minutes and once it wore off he was really tired but feeling okay. They did a lot of tests and his white blood cell count was 20,000; CPK was 19,000 and then 39,000 (it's always high in DMD, but Carter's levels have been under 10,000 lately) and he had myoglobin in his urine. We were admitted for observation and blood cultures to rule out a serious infection. His troponin (heart specific enzyme) was normal as well as his chest x-ray so they were confident it wasn't a cardiac event. After 36 hours in the hospital we were discharged and he was diagnosed with a bad virus and costochondritis (inflamation of cartilage in the chest). When we followed up with his Pediatricain, his levels were back down to his nornal and they agreed it was a bad viral infection. He gave us quite he scare but it was such a relief that his heart is okay. The mobility issues that come along with Duchenne don't scare me nearly as much as the heart complications. <br />
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In other news the stomach pain that was so common a year ago is mostly gone now. He complains occasionally but Mylicon or Tums seem to help. He's done better with his weight on the lowered Deflazacort dose but almost 4 years on steroids has started effecting his height more and more. Even with his growth hormone treatment he's slipped down the the 4th% for height. We're continuing to monitor his IGF-1 level as it's staying pretty high. We are getting ready for our 5th visit (Wow, time really flies!) to Cincinnati Children's hospital next month and I'll update again after that.Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-25016724030757688532011-08-31T01:01:00.000-07:002011-08-31T01:01:46.980-07:00Can't believe summer is over!!Like always, it's been awhile since I've updated. We've had a busy summer and I can't believe Carter's already been back in school for 3 weeks!! He had his first sick day today, was sent home with a backache and fever of 103. I think this is the longest we've gone into the school year before he's gotten sick! He tends to catch something the first week. lol. Just something we're used to with him.. His fever broke this evening and has yet to reappear. I'm staying positive that it's just a minor bug and he'll be back to school on Thursday. Please keep him in your thoughts. <br />
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We had a great summer. Hosted our first fundraiser, Climb to CureDuchenne Pick Your Peak 2011 on July 3rd at Mt. Rubidoux and raised $2367 for CureDuchenne. <a href="http://www.tinyurl.com/teamaltura">www.tinyurl.com/teamaltura</a> So thankful for all of our family and friends who helped out and supported us! The next weekend we were in Baltimore for our first Parent Project Muscular Dystrophy connect conference and it was just amazing to connect with so many other Duchenne families. Carter absoultely LOVED meeting up with all his friends and asks constantly about them. We will do all we can to attend every summer; it's great to be able to connect online and on Facebook, etc.. but nothing like being face to face and feeling so NORMAL and at home. <3 our Duchenne FAMILY. <br />
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I also recieved my first shipment of SAVING OUR SONS ONE STORY AT A TIME. Still have many copies to sell, proceeds will go towards paying off Carter's new scooter as well as next years appointments at Cincinnati Childrens Hospital and hopefully towards getting to PPMD again next summer. Please see posts below or email me at: <a href="mailto:cure4carterblaze@gmail.com">cure4carterblaze@gmail.com</a> for more info on getting your copy. I also have Carter's Climber's shirts still available from our fundraiser. Stay tuned for t-shirt/signed book packages! =) <br />
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Carter is now in 2nd grade, and it's a little bittersweet. He still has so much strength and is doing very well compared to other boys his age with Duchenne. But, he also has a lot of pain and isn't able to keep up around campus/on the playground at school so he started bringing his scooter for use outside this year. It has helped a lot but he still gets home very tired some days. We are trying to find a balance of letting him run and play as much as he wants while he can but also not letting him overdo it. Hard with a very active 7 year old who is determined to be just like his friends. Since his arms also get fatigued, he will be typing in the classroom and at home instead of writing most assignments. Before bringing his scooter, all of the 2nd graders got a little bit of information on Duchenne (Care of this great video <a href="http://www.youtube.com/watch?v=6wLnR7GJakY">http://www.youtube.com/watch?v=6wLnR7GJakY</a>) and it's seemed to helped with the response he's gotten from the other kids. He's said that they've been helpful and haven't teased him, which is something he was very worried about. <br />
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There is LOTS more to talk about, but it's 1am and my bed is calling my name. =) I will write again soon. <br />
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Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com1tag:blogger.com,1999:blog-3223497687537320021.post-7375906821456807752011-07-26T13:39:00.000-07:002011-07-26T13:48:00.538-07:00SAVING OUR SONS One Story at a Time<div style="text-align: center;"><a href="http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze" target="_blank"><img alt="" border="0" height="320" src="http://i420.photobucket.com/albums/pp284/mistyv/MV-SOSeBook3-Flat.jpg" width="245" /></a> </div><div style="text-align: center;"><br />
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I recieved my first copies of SAVING OUR SONS ONE STORY AT A TIME this weekend. Thank you so much to Misty Vanderweele for putting this book together!! It's surreal to see my story, Carter's Story, in print and I'm truly honored to be involved. Each personal story in the book brought me to tears. It's amazing how similar the heart of our stories are. All of our lives have been turned upside down by Duchenne. A disease that most of us had never heard of prior to our son's heartbreaking diagnosis. None of us planned on this life, but we are all striving to make the best of it. We are determined to give our sons a future. <br />
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Please, if you haven't already, order the book!! (<a href="http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze">http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze</a> or email me) It's inspiring and a real eye opener into what day to day life is like for our families affected by Duchenne. Proceeds from books I sell will go towards Carter's expenses not covered by insurance. Please email me at: <a href="mailto:cure4carterblaze@gmail.com">cure4carterblaze@gmail.com</a> with any questions.Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-46624744905551861002011-07-18T21:00:00.000-07:002011-08-31T01:08:14.653-07:00Thank You (from Carter)Please see Carter's post below for pictures and information on our fundraiser we held in July. He wrote this all on his own, so proud of him. He continues to ask me how we can raise more money to CURE Duchenne and has a lot of ideas. Carter is amazingly strong and I know he will do big things to make a difference for himself and others with Duchenne. <br />
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<a href="http://carter1b.blogspot.com/2011/07/thank-you.html">http://carter1b.blogspot.com/2011/07/thank-you.html</a>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com4tag:blogger.com,1999:blog-3223497687537320021.post-91661175174664795232011-06-27T20:28:00.000-07:002011-06-30T00:38:04.329-07:00Learn Carter's past, Improve his future!<div><div><div align="center"><embed flashvars="&p=54eb9bc4928caa4a54ac96&skin_id=701&host=http://www.onetruemedia.com" height="382" name="FLVPlayer" pluginspage="http://www.macromedia.com/go/getflashplayer" quality="high" salign="LT" scale="noscale" src="http://www.onetruemedia.com/share_view_player?p=54eb9bc4928caa4a54ac96" type="application/x-shockwave-flash" width="408" wmode="transparent"></div></embed><div style="font: 12px/20px verdana, arial, sans-serif; margin: 0px; padding-bottom: 15px; text-align: center; width: 408px;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt4" style="text-decoration: none;" target="_blank">Make an on-line slideshow at <span style="text-decoration: underline;">www.OneTrueMedia.com</span></a></div></div></div>This video is a little long, but I think it's the best way to show what Carter has been through so far and what our future holds. Carter has been fighting since he was born. It's so much easier to talk about what he's been though, what is behind us, because I know how that turned out. His time in the NICU was incredibly trying. It seems like so long ago, but then again I remember it all so well. That fear never really leaves you. We thought that Carter's fight was over, that he'd grow up to be a healthy little boy. Then came Duchenne. It is 100% fatal, with no cure. There are many promising treatments within reach for Carter and thousands of others in this generation of boys. But, we need funding to keep things going and speed research up. With a progressive disease like Duchenne, we are always fighting the clock. <br />
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Please make a donation today if you can. ANY amount helps. <a href="http://www.cureduchenne.org/site/TR/Events/General?px=1013680&pg=personal&fr_id=1050">http://www.cureduchenne.org/site/TR/Events/General?px=1013680&pg=personal&fr_id=1050</a><br />
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Thank you so much!! :)Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-6553956758442159602011-06-20T23:26:00.000-07:002011-06-20T23:26:39.109-07:00Please join us!!We are so excited to see our first fundraiser coming together. In less than 2 weeks we will be hosting our climb to Mt. Rubidoux!! Please see our team page to make a donation. <a href="http://www.tinyurl.com/teamaltura">www.tinyurl.com/teamaltura</a>. You can make a general team donation or click on one of our names to sponsor directly (all funds will go towards team goal). Carter would love to have some donations made in his name.. He raised over $150 for Jump Rope for Heart and he's determined to do better than that for Duchenne!! Please help him. :) <br />
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Please email me to RSVP if you plan on attending the climb (<a href="mailto:cure4carterblaze@gmail.com">cure4carterblaze@gmail.com</a>), we will be BBQing and holding a bake sale and raffle and want to make sure we have enough of everything. It's going to be a great day of fun for the whole family!! The trail is wheelchair/stroller accessible and we will be walking at at gentle speed. We hope you will join us! :) <br />
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I am taking orders for our Team tshirts. They are $8 each and come in every size from YXS-2XL. Email me: <a href="mailto:cure4carterblaze@gmail.com">cure4carterblaze@gmail.com</a> to place your order.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQTkagyLSNBIYNeePgRNXgn93wBRSZ-QeEGVkkS4jkoTsTr27sGx36koOkOQDUyejXjgouIYsc7QEoHdJz8O3ygQTT8GkeX2ET89dgzPbLxokUUoMFE6Fx6KI_maJiiFL8sncpFlgJrzkP/s1600/tshirts.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" i$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQTkagyLSNBIYNeePgRNXgn93wBRSZ-QeEGVkkS4jkoTsTr27sGx36koOkOQDUyejXjgouIYsc7QEoHdJz8O3ygQTT8GkeX2ET89dgzPbLxokUUoMFE6Fx6KI_maJiiFL8sncpFlgJrzkP/s320/tshirts.jpg" width="213" /></a></div> Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-28171208070664738572011-06-01T14:32:00.000-07:002011-06-02T23:03:34.668-07:00Team Altura: Carter's Climbers<div style="text-align: center;"><br />
<iframe allowfullscreen="" frameborder="0" height="349" src="http://www.youtube.com/embed/oALacqCfTig" width="560"></iframe></div><div style="text-align: center;"></div><div style="text-align: center;"></div>Most Duchenne boys will not survive their teenage years. Those that do are faced with muscle fatigue and pain and will likely need a wheelchair by age 12. The simplest tasks become difficult, and in their later stages, heart and breathing muscles begin to fail. Over 24,000 boys are living with the disease in the United States alone. The disorder knows no ethnic or social boundaries and effects 1 in 3500 boys born worldwide. <br />
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As many of you know, my 7 year old son Carter has Duchenne muscular dystrophy. It is devastating and 100% fatal. We were shocked to learn the diagnosis, less a month after I started at Altura in July 2007. I’ve been incredibly blessed by the support of my Altura Credit Union family throughout our journey (which is only just beginning) and I am thrilled to announce our next step! <br />
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Two years ago, CureDuchenne launched “CureDuchenne Adventure – Climb to CureDuchenne: Pick Your Peak.” Last year, over 200 people throughout the country chose a mountain, hill or tall building to climb, raise funds and increase awareness for the organization. Together they raised $250,000 – an incredible feat for a second-year event! This year, Climb to CureDuchenne: Pick Your Peak is scheduled for June 18 - July 17. The last two years, teams of adventures previously climbed tall buildings, big hills and even Mt. Shasta. It may seem ironic to use athletic events to raise funds for boys who are limited in their physical activity and no longer able to walk on their own by age 12. But our boys are no different than every child who has dreams of participating in sports, of being a baseball player, a football player and even a cowboy! With enough support and awareness, we can make those dreams a reality for Duchenne boys. <br />
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Team Altura: Carter’s Climbers will be hosting our first annual family-friendly 5 mile hike to beautiful Mt. Rubidoux in Riverside on Sunday July 3rd @ 2:00pm, from our 14th Street branch. The walk will be a 5 mile loop and is stroller/wheelchair accessible. It will be a day of fun for the whole family and we hope to see many of you there!! <br />
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You can make donations and register as a team member here. <a href="http://tinyurl.com/teamaltura">http://tinyurl.com/teamaltura</a> Registration includes a CureDuchenne tshirt and the ability to create an individual fundraising webpage, if you make at least a $25 donation. You don't need to register to join us, but we hope you will. <br />
Please contact me to get involved!! <a href="mailto:cure4carterblaze@gmail.com">cure4carterblaze@gmail.com</a> =) Stay tuned for more details!Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-76520692314577599032011-05-04T23:27:00.000-07:002011-05-04T23:27:58.396-07:00UpdateWe are getting ready for Carter's annual appointments in Cincinnati and I just realized I haven't really updated in a while on everything else that's been going on...<br />
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Carter's still been having frequent stomach aches. We saw his GI recently and he thinks that Carter may have an overgrowth of bacteria in his small intestine causing his pain. He is 'at risk' for this due to the surgery he had at birth and resulting short bowel syndrome. He had this problem about 3 years ago but that time he didn't have pain, just unexplained fevers.. We are trying the same treatment we did then. 1 week of Flagyl 3x a day, 2 weeks probiotics followed by a week off and then the same cycle one more time. Hopefully this will resolve his pain issue. If not then we need to decide how much the pain is interfering with his day to day life and if it's severe enough that we need to do an endoscopy and really see inside. It's so hard to say exactly how much the stomach pain effects him because he has a lot of muscle pain throughout the day also. So hard to see him in pain so often. It's just not fair and has been rough on all of us.<br />
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Since starting on growth hormone back when he was 2 years old we've had a mainly unexentful Endocrine journey. That is beginning to change.. About 2 years ago his IGF-1 level starting running high, we lowered his growth hormone dosage in an attempt to control it but it didn't help. When we saw his Endocrinologist in January, he had only grow a little over 1/2 and inch in almost a year but gained 10 pounds. We decided to go ahead and increase his GH dose since it was effecting his growth and not helping the IGF-1 levels. Hopefully he will start growing again, crazy to see how fast he slowed down and went from being about the same size as his peers in the beginning of kindergarten to the smallest in the class now at the end of first. The nutritionist at Cincinnati children's will review his 3-day food log and see if his weight gain is dietary. I don't think he's been eating more the past year then he did before; but we're looking forward to input. If his diet is okay then Dr. Wong wants to evaluate him for insulin resistance. It can develop as a result of the steroids he takes.. We also found out that high IGF-1 is common in boys on steroids and GH so we are less worried about that. There are studies beginning on IGF-1 as a possible treatment for Duchenne, I personally feel (and some doctors have said they agree) that the high IGF-1 has helped Carter. He still has great strength and has maintained in that regard over the past 2 years although he is getting fatigued easier now. <br />
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We saw Cardiology and Allergy/Pulmonary a few months ago, all is good in both departments. No changes in his heart or lungs yet. We will be re-testing his food allergy levels in his next blood draw. Keeping our fingers crossed we will see a decrease in his levels for milk. It's been a few years since we've seen where his blood levels are at. <br />
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Today we had his IEP meeting and discussed what he will need next school year. He will be using a scooter daily at school starting next year, we will do some kind of assembly for his classmates to talk about muscular dystrophy and general defferences/compassion/etc.. He had a problem with kids laughing at him when he was bringing his scooter this year and is very hesitant to take it again although he knows its necessary. He will also will be getting a more supportive chair with armrests and a foot rest to keep his posture better during the school day. He gets uncomfortable now and is always up and down in his seat. Next year we will also begin pushing typing over writing in class. We will meet again with his adaptive PE teacher, principal, nurse and new teacher before school starts next year to go over everthing again and make sure we have all the right tools in place for him to continue to be successful in school. He's very advanced academically and we want to keep school as a positive thing for him. <br />
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We are getting closer to the release of Saving Our Sons One Story at a Time, please view the link on the right to pre-order your copy!! I will have copies to sell in person as well once it's released. =) <br />
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I'm sure I left out a lot from my update, I really need to write more frequently! <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq6XgyBNzFhFGF9mWJBPF-2qG17urfFTjNLPOCd6OTi2pxTD8s7nbnKnDGhy-24gVmPhobmxNC8uGISQBha7QJaTTPIywwIY0JjqBJAhTkljDSAQxfz7ceQcKh0cSzTWu4FLlYIERTZCiX/s1600/April2011+060.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq6XgyBNzFhFGF9mWJBPF-2qG17urfFTjNLPOCd6OTi2pxTD8s7nbnKnDGhy-24gVmPhobmxNC8uGISQBha7QJaTTPIywwIY0JjqBJAhTkljDSAQxfz7ceQcKh0cSzTWu4FLlYIERTZCiX/s400/April2011+060.JPG" width="400" /></a></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-25712878286187644192011-03-09T19:59:00.000-08:002011-03-09T19:59:31.845-08:00Hope you enjoyed the post below. It was written 1/2 by Carter and 1/2 by myself. We actually took turns with the laptop writing each sentence last night. :) He's been inspired to start his own blog now, I can't wait to see how it develops and hope he keeps it for years to come. You can find him at: <a href="http://www.carter1b.blogspot.com/">carter1b.blogspot.com</a>. <br />
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We had an amazing time together Sunday hiking the mountain and although I'm still slightly sore, I can't wait to do it again very soon! We are thinking about Saturday and having a picnic lunch under the flag. The hike was 2 miles up and although it's not too steep, it's quite a workout when pushing Carter in his manual wheelchair. I wanted to stop a few times but he kept me going. We got disappointed when we'd turn a corner and see that there was still just trail ahead and that we weren't to the flag/cross yet but he kept saying, "lets think positive", "it's going to be so exciting when we get to the top", "we can't turn back now". Once we got up to the top we parked his wheelchair and climbed up some big steps and then rocks over to the flag and then same thing with the cross. It was a great time and so worth it!! Amazing how rewarding that hike was with Carter compared to if I would have gone up on my own. It made it that much more taxing physically, but was so empowering. Nothing like seeing the joy on my sons face after he was able to climb up the final bit to the top of the mountain himself. It was hard for him, and probably something Dr. Wong would frown on, but there are certain things that I just can't stop him from doing. Some things are priceless and I feel we need to let him experience them while he still has the ability. If we can figure out parking and some other logistics, we will be hosting a "Climb to Cure Duchenne" event at Mt. Rubidoux in June. Please stay tuned for more info on that.. <br />
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Carter recieved the 'Principal's Honor Roll' (all A's) award today for the second trimester at school (he recieved it last trimester also and for the full school year in Kindergarten). He's starting his academic career off great and we couldn't be prouder of him!! <br />
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Carter decided this year to take part in his school's fundraising efforts for the American Heart Associations Jump Rope for Heart. Although he isn't physically able to jump rope he is very excited to "raise money to help other people with heart diseases" and is really looking forward to the event. Heart health is something that effects us all and although Carter's determination is to help others; research in this field is of great benefit to him and all of the boys/men living with Duchenne. Please help him make a difference by making a small donation if you're able. <a href="http://honor.americanheart.org/site/TR/JumpforHeart/WSA-WesternStatesAffiliate?px=2712650&pg=personal&fr_id=1445">http://honor.americanheart.org/site/TR/JumpforHeart/WSA-WesternStatesAffiliate?px=2712650&pg=personal&fr_id=1445</a> Thank you! =)Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-78977925201401081332011-03-07T21:09:00.000-08:002011-03-07T21:09:03.587-08:00Mountain Climbers<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgqCXM7oL9SQUDmRHUReNcIc0bRgUqR4ZXb-gKUE71s4noyf4TrtFKx1CHzM94SftF_K6jNREA_qT6ngxA3ChK-2jMfQ7Rn3F2OtUEPULRFaKDTuEWn6tqxXwhmQDVH1AIzYu9TQbH9adQ/s1600/march2011+034.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgqCXM7oL9SQUDmRHUReNcIc0bRgUqR4ZXb-gKUE71s4noyf4TrtFKx1CHzM94SftF_K6jNREA_qT6ngxA3ChK-2jMfQ7Rn3F2OtUEPULRFaKDTuEWn6tqxXwhmQDVH1AIzYu9TQbH9adQ/s320/march2011+034.JPG" width="320" /></a></div><br />
I had to work Saturday, but Carter marked Sunday as "Carter & Mommy Day" on the calendar. We weren't sure what to do, but it was a really pretty day out. So we went to Mt. Rubidoux. It was very hard to find the place because we could not find a parking place. There's a beautiful paved 2-mile hiking trail. On the top there is a big American Flag and a cross. We climbed all the way to the top and sat below each of them for awhile. Next time we are going to the top and going to have a picnic. It was a lot more work to get up to the top than we thought. It was so pretty once we got up there; I forgot about the discomfort of pushing Carter up the mountain and was just so happy to be experiencing the moment together. I don't think I needed pictures to remember the day I think I could remeber it myself. But, we did take a lot of pictures, so we could show everyone just how beautiful it was. Here are a few: <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFPYEeggMXgRUWJPHdAPudDbXfZQwUEvzvF5dY3sBb-4Cn4FTFPvwYmJVmBqLbF9BJWUWCeMh5GNdbpu0a_I_sHwcMXHzHWQr-EplpJjex0ZjBnlWataS3XGsdCeDwA9QcXxpPdIlNjgqY/s1600/march2011+014.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" q6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFPYEeggMXgRUWJPHdAPudDbXfZQwUEvzvF5dY3sBb-4Cn4FTFPvwYmJVmBqLbF9BJWUWCeMh5GNdbpu0a_I_sHwcMXHzHWQr-EplpJjex0ZjBnlWataS3XGsdCeDwA9QcXxpPdIlNjgqY/s320/march2011+014.JPG" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div> By Carter and Rhiannon :) <br />
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<div align="left"></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-39735095026390688842011-02-06T17:16:00.000-08:002011-02-06T17:33:21.195-08:00Go Packers!!Such an exciting week for us!! Tuesday night Carter recieved a card from Make A Wish!! He is so excited thinking about his wish! Wednesday was Carter's 7th birthday and yesterday we celebrated with a party at the park with his friends. He had a blast. <br />
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We were also featured in our local paper yesterday. About Clay Matthews and what he's done for Duchenne awareness! http://www.pe.com/localnews/morenovalley/stories/PE_News_Local_W_carter05.2545db7.html<br />
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Starting tomorrow, you can also pre-order the Duchenne collaboration book I am a part of. "Saving our Sons One Story at a Time". :) We will earn money from orders that will be donated to Duchenne research and towards Carter's bills in Cincinnati. :) Words can't describe my excitement!!! <a href="http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze" target="blank">sos book</a><br />
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<a href="http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze" target="_blank"><img alt="" border="0" src="http://i420.photobucket.com/albums/pp284/mistyv/MV-SOSeBook3-Flat.jpg" /></a><br />
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Half-time is almost over.. Thank you again Clay Matthews, Cadillac and CureDuchenne!!! Our voice is finally being heard, we can make a difference in time for OUR sons. :) <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzhMMfHewclsfi_QUHWkWvUwfbYoe43mM7kEJCWW3EmSMk3laa20sSvY6sePdZuUaX8hGWpOMVmzI8pXcHJbYluoeFzZXoWOptkwDkrShZJcAIMd5AnOGDB39-Jk85HZlPMm8GiW84mtnB/s1600/539w.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzhMMfHewclsfi_QUHWkWvUwfbYoe43mM7kEJCWW3EmSMk3laa20sSvY6sePdZuUaX8hGWpOMVmzI8pXcHJbYluoeFzZXoWOptkwDkrShZJcAIMd5AnOGDB39-Jk85HZlPMm8GiW84mtnB/s320/539w.jpg" width="320" /></a></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-65011101407244724222011-01-23T19:24:00.000-08:002011-01-23T19:24:01.309-08:00Thank you Clay Matthews!!!Such an exciting and unexpectedly emotional day for me, watching Clay Matthews and the Green Bay Packers make it into the Super Bowl. I've always been a football fan, and was dissapointed in my Colts this season, but so much happier for all that has transpired. Clay Matthews has become a hero in our household as well as thousands of others across the country. He has become a face for Duchenne. Millions of people have been introduced to Duchenne thanks to him, Cadillac and the wonderful people at Cure Duchenne. (<a href="http://www.cureduchenne.org/">http://www.cureduchenne.org/</a>). <br />
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<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/bJOIUP8DlVc?feature=player_embedded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div align="left">The auction can be found here: <a href="http://www.charitybuzz.com/auctions/cadillac/catalog_items">http://www.charitybuzz.com/auctions/cadillac/catalog_items</a> Hurry though, it closes soon!! </div><div align="left"><br />
</div><div align="left">We've had a lot going on in our personal Duchenne journey recently. Carter is almost 7 and has just begun bringing a scooter to school and is having some endocrine issues. Although we have a lot to worry about, we are hopeful now more than ever that the world will finally listen and we will get more on board with us in the fight against Duchenne for Carter and so many other boys! This is the perfect time to get the national media involved, if you know anyone in the industry, please tell them the world needs to hear about Duchenne! I've stared small and emailed local newspaper editors, but have unlimited hope for the next few weeks and beyond. </div><div align="left"><br />
</div><div align="left">Together, we can CURE Duchenne! </div><div align="left"><br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7dOZ-SRBRrw5jaDTfDfbEh4aaaTPL8s0sKQH-Ji9X_z8dGvBCW9-kJ3UV23ESUqsAJyselObvanaRu9PWB4EfiD2R8u9ZWhqX5PrTdOwso0Yd2BKW03P2SOvUi9GHaCKcdeOvRxKIUm7E/s1600/photo.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7dOZ-SRBRrw5jaDTfDfbEh4aaaTPL8s0sKQH-Ji9X_z8dGvBCW9-kJ3UV23ESUqsAJyselObvanaRu9PWB4EfiD2R8u9ZWhqX5PrTdOwso0Yd2BKW03P2SOvUi9GHaCKcdeOvRxKIUm7E/s320/photo.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Peace" -Carter Blaze</td></tr>
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt6VBeLF-fvxnI7XyhF5LyqFesozav47WUVD-4OJUrhNqoixavNGhcxfoS2mxtHcXCcU54s_ByvBOPIkZklpnr2KL51DHM3EtvFHCr-mxXPOszKN5tzkmp5NqD4j0G7Mm7QHqppMePET9D/s1600/164623_10150165281028009_715513008_8099438_7372642_n.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt6VBeLF-fvxnI7XyhF5LyqFesozav47WUVD-4OJUrhNqoixavNGhcxfoS2mxtHcXCcU54s_ByvBOPIkZklpnr2KL51DHM3EtvFHCr-mxXPOszKN5tzkmp5NqD4j0G7Mm7QHqppMePET9D/s320/164623_10150165281028009_715513008_8099438_7372642_n.jpg" width="240" /></a></div></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-85748766143658113182010-12-14T22:31:00.000-08:002010-12-14T22:31:42.699-08:00Happy Holidays!!I'm not going to give any excuses for not updating sooner this time. We've been busy enjoying life. =) Married life has been wonderful. The wedding was beautiful and everything turned out perfectly! Couldn't have asked for a more beautiful day. Carter was the most handsome ringbearer ever and was able to use his experience again 3 weeks later for 'Aunt Lexi's' wedding. <br />
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Carter has been doing well. He had the abdominal ultrasound in October and everything was normal (for him) still not sure what the reason for his pain is, but it has seemed to decrease over the past few months. We had his 6 month appointment recently with his local neurologist at UCI and recieved a prescription for a motorized scooter. It's something we've been talking about for awhile now, but very bittersweet.. He will only be using it at school for now and we will still use his manual wheelchair for long distances when we go places. We don't want him to use it too often, but it will allow him to be more independent and keep up with his friends out on the playground. He is VERY excited about it. He wants "hot red". =) Aside from the scooter his appointment was mostly uneventful, just a follow-up to see how he's doing. His strength is still good but the issue is his increasing fatigue now, we have to limit him some to keep from speeding up the progression of his Duchenne but also want him up and active as much as possible.. it's a balancing act. <br />
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We will be busy the next 2 months, he has appointments coming up with Allergy/Pulmonary, Endocrinology, Cardiology, and his 2nd visit to UCLA for the DMD study at the end of next month. I wiill update on how all these appointments go. They're mostly standard follow ups, but we have a few things to discuss with his endocrinologist and will be talking to his allergist about testing his blood levels again to see if the milk allergy has changed at all. It's been 3 years since we last checked and I'm really hoping to see a drop. Not sure if he will ever outgrow it completely, but it would be great if we could get to a point where he's not as dangerously allergic as he is now. <br />
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I'll leave you with some pictures =)<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz-QrFgDAaWEY7ZqLhyphenhyphenSE8kOH7FauB7ZbQxrSeAcvmZ2lWffZxZK6dWtw57YVsO0GXg780xF-zLTyf0OVgyjGl5uvXXNYVM4RDlanHeUcqIoWEx5udw6vgS5dbTv4l1veHaQqGI9AjYpxf/s1600/photo3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz-QrFgDAaWEY7ZqLhyphenhyphenSE8kOH7FauB7ZbQxrSeAcvmZ2lWffZxZK6dWtw57YVsO0GXg780xF-zLTyf0OVgyjGl5uvXXNYVM4RDlanHeUcqIoWEx5udw6vgS5dbTv4l1veHaQqGI9AjYpxf/s320/photo3.JPG" width="320" /></a></div><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcE-5jkEJ0F2bVGZyrmkpJuW-ud8PTXDM96zfAv82kPrxfMx3Y03EFuGYLbMr_pxXzpHbrdhT9Ne7ngbfpThJTZkorIDzLBNonSdxvIyCzVXPhyphenhyphenpKJvVtklQRxqkSIBXuLWrlqZGupmgiK/s1600/IMG_1273.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcE-5jkEJ0F2bVGZyrmkpJuW-ud8PTXDM96zfAv82kPrxfMx3Y03EFuGYLbMr_pxXzpHbrdhT9Ne7ngbfpThJTZkorIDzLBNonSdxvIyCzVXPhyphenhyphenpKJvVtklQRxqkSIBXuLWrlqZGupmgiK/s320/IMG_1273.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4lJDisN1FmP-5500Da3usUDBVVxuUJVR1VmuFvcFUMEt24_xRSV0JvCke8lP_vKfP8Gt8W2WoOYkDMZ3KgIBHo9XsGCt-tWNLPmy0b_XrsQyU-88WbwJQYDKymj4dqTLrNZ81_9riK9Ta/s1600/IMG_1279.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4lJDisN1FmP-5500Da3usUDBVVxuUJVR1VmuFvcFUMEt24_xRSV0JvCke8lP_vKfP8Gt8W2WoOYkDMZ3KgIBHo9XsGCt-tWNLPmy0b_XrsQyU-88WbwJQYDKymj4dqTLrNZ81_9riK9Ta/s320/IMG_1279.JPG" width="320" /></a></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com1tag:blogger.com,1999:blog-3223497687537320021.post-69799024549368135232010-09-30T23:05:00.000-07:002010-09-30T23:06:30.261-07:00Counting downSo, as usual I've been neglecting this blog. I'm sorry. I have a good reason though, if that helps. lol We have been getting ready for the wedding and it's coming up QUICK! Only about a week and a half now until 10/10/10. We are sooo excited and Mr. Carter will be the cutest ringbearer ever! I absolutely cannot wait for our day to get here. :)<br />
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Carter started first grade on August 11th and has been doing very well academically!! The full day at school is harder on him physically and we will most likely be getting him a scooter to use there which should be a great help. It's an adjustment, but I know he will appreciate being less tired in the afternoon/evenings. <br />
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We just saw his GI Dr. again last week and will be scheduling an abdominal ultrasound soon. He's had some relief from his new stomach medications but still complains often of his stomach hurting so they want to take a look inside. If nothing shows up in the ultrasound then he may need an endoscopy. Hoping not to have to go that route since he'd have to go under anesthesia for it. <br />
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Although he's been getting fatigued easier and more often, he's hit a major physical milestone recently and is now able to swim short distances without a life vest!! :) Very proud moment for us and he's LOVING the water now! Here's a video: <br />
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<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzgdtEWZm-OVSACy-u1gtWNSdlUQc4Zv1eAkkUuodbVtMmeNnFXiJkZldvjrrTEJLyD4-kT5Y96rsWu1NR3kg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div style="text-align: center;">And some recent pics :)</div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDJUtdF7m0n-rw0iNyak9ylm1vE0PWEy5eFezdcAYj7elQ9KYwjh4r_jXhIzXX5mLf9EFtdSFuFfOMlZ6sY_YmhTstlpZA7AFo4BlA8x5Ua1C01V4zAoPYIh35S6FoNrmoSjYMxgNzD28A/s1600/june10.plantsweek5+031.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDJUtdF7m0n-rw0iNyak9ylm1vE0PWEy5eFezdcAYj7elQ9KYwjh4r_jXhIzXX5mLf9EFtdSFuFfOMlZ6sY_YmhTstlpZA7AFo4BlA8x5Ua1C01V4zAoPYIh35S6FoNrmoSjYMxgNzD28A/s640/june10.plantsweek5+031.JPG" width="480" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRkpGrsEwQU8q8Li-WW9CLP-9_pg2n6TtpdI4h2vUt6GZnuuIYJHiOL8YeWVAsENfWqrE4GGXTUWYPHFRAyeLvoR-ZVskHFpuSWg0datlWQqZbpWYQRKEZ7tfE3DV4CXXy1s8ZVpRRWGJH/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRkpGrsEwQU8q8Li-WW9CLP-9_pg2n6TtpdI4h2vUt6GZnuuIYJHiOL8YeWVAsENfWqrE4GGXTUWYPHFRAyeLvoR-ZVskHFpuSWg0datlWQqZbpWYQRKEZ7tfE3DV4CXXy1s8ZVpRRWGJH/s640/photo.JPG" width="480" /></a></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-10949788368702290902010-07-22T22:34:00.001-07:002010-09-30T22:16:01.720-07:00DMD Gait Analysis study at UCLACarter had his first appointment for the DMD gait study at UCLA on Wednesday the 21st. It went well and it was very interesting to see all the high tech stuff that they used for the different assessments. They also think he's probably going to be on the milder end progression-wise. He does have tightness in his legs and fatigues easily, but was able to do all the gross motor tests they had him try (except hop on his left foot 10 times). We were happy to hear that he is still strong and doing well. :) We'll go every 6 months for the next 3 years and they will see how he progresses during that time. <br />
We took a lot of pictures, figured they will explain things better than I can. In addition to the tests we did there he's also wearing a step activity monitor for the next week so they can see how active he is during the day at home. <br />
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<div style="text-align: center;">Getting ready for the first test</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXdYJHyWfe9FmvYBQvbT3lcz5CTu4PO3wyp0HFeojMSo2FNF4DYbjl7NMYXqBo4P9h9XrETqHDVsZWViSyKjIDbo4WxVqEJXchiRj2EPWBo-SxQVrnDzafQ52iEkOLFQ-3LcoASQjQSgLi/s1600/July2010+003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXdYJHyWfe9FmvYBQvbT3lcz5CTu4PO3wyp0HFeojMSo2FNF4DYbjl7NMYXqBo4P9h9XrETqHDVsZWViSyKjIDbo4WxVqEJXchiRj2EPWBo-SxQVrnDzafQ52iEkOLFQ-3LcoASQjQSgLi/s320/July2010+003.JPG" width="320" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">"Luke, I am your father" lol</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvYiZ3wyU-vvHjZvbt4Z-sIM-1FsEoJRxhEvqJUDNUxqggsi5vAYgD2DxVLxVa_i96BjzMwXn_sCBT61hcW8rBoyrY3nJUSH4R04d1qE1PM-nzpd6j5iHQzRSOruv0bcE9TZ4yU5jIWTg5/s1600/July2010+008.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvYiZ3wyU-vvHjZvbt4Z-sIM-1FsEoJRxhEvqJUDNUxqggsi5vAYgD2DxVLxVa_i96BjzMwXn_sCBT61hcW8rBoyrY3nJUSH4R04d1qE1PM-nzpd6j5iHQzRSOruv0bcE9TZ4yU5jIWTg5/s320/July2010+008.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG5WZzFc0gOKZ0X-l_tSbWOhffGoZipLcXt-d5cJqQOYq0YOQgVc62hN_mYPktT3VFUoI-Mgl0jtL0Gxgc4WmD6perUmGTnXPpFsGNX9XeSajaxpu6uAUPYcQrwPXlNQzrB4-hK1Rw6lu6/s1600/July2010+007.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG5WZzFc0gOKZ0X-l_tSbWOhffGoZipLcXt-d5cJqQOYq0YOQgVc62hN_mYPktT3VFUoI-Mgl0jtL0Gxgc4WmD6perUmGTnXPpFsGNX9XeSajaxpu6uAUPYcQrwPXlNQzrB4-hK1Rw6lu6/s320/July2010+007.JPG" width="320" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Energy Cost of Walking-<br />
Individuals will be asked to rest for 10 minutes and then walk for 10 minutes while wearing a mask over their nose and mouth (see photo). This will allow for the analysis of the amount of oxygen and carbon dioxide used during resting and walking.</div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVG5AtQRKUSb2TvsGPZePPff59SYAknyayC2mkJferdJgq0IAL2P0dj_fZy0FwGxjrDbN28ERUXD7ecflqM1jwNolGMujBszXYSL57kpHjVPgONTBBz8fIuxddR_TUPTnvEoKMKU1Y4QjK/s1600/July2010+010.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVG5AtQRKUSb2TvsGPZePPff59SYAknyayC2mkJferdJgq0IAL2P0dj_fZy0FwGxjrDbN28ERUXD7ecflqM1jwNolGMujBszXYSL57kpHjVPgONTBBz8fIuxddR_TUPTnvEoKMKU1Y4QjK/s320/July2010+010.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhso0xzaYGRj3JuUlyyyzhNd5g4hNVVLl6AMqRJgvQdsjHW-xmIkGIc9Wnv5t5-4bH9R9DWpmrNm_Cdkhq46J4eXmDCje2B7m6P2UBX1I6Wihug9XAgdQO-R4wcndWD-9_PcIyoLpk8AAfS/s1600/July2010+011.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhso0xzaYGRj3JuUlyyyzhNd5g4hNVVLl6AMqRJgvQdsjHW-xmIkGIc9Wnv5t5-4bH9R9DWpmrNm_Cdkhq46J4eXmDCje2B7m6P2UBX1I6Wihug9XAgdQO-R4wcndWD-9_PcIyoLpk8AAfS/s320/July2010+011.JPG" width="320" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCj49Yij117hbF6ScqwAl3TCvobFvInzZzQJW5FZkfgLHHtF1TH7De8qFGCpcYqSkgCqRBm11scwBMej0rP2sH8QBJwzfNhk5sgBiyD1vdpAna3cEgJ2sA30gCThXgpztMRzO_YbXeKXy-/s1600/July2010+021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCj49Yij117hbF6ScqwAl3TCvobFvInzZzQJW5FZkfgLHHtF1TH7De8qFGCpcYqSkgCqRBm11scwBMej0rP2sH8QBJwzfNhk5sgBiyD1vdpAna3cEgJ2sA30gCThXgpztMRzO_YbXeKXy-/s320/July2010+021.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-cy7VMN_SU6Lkl2WAOsUaOTXlFpFqZVA5wYczvUBiZEb8XYYODtkyOSydXblVCJIPSz_-kn-gLzTFlbHTcs1hXe0bGVb9JiHI_cFjtjQhFg0M80H9oK1V4_y9FF4-fQQvMxxWKcC4tyRT/s1600/July2010+022.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-cy7VMN_SU6Lkl2WAOsUaOTXlFpFqZVA5wYczvUBiZEb8XYYODtkyOSydXblVCJIPSz_-kn-gLzTFlbHTcs1hXe0bGVb9JiHI_cFjtjQhFg0M80H9oK1V4_y9FF4-fQQvMxxWKcC4tyRT/s320/July2010+022.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Gross Motor Skill Testing-</div><div style="text-align: center;">Individuals will perform a set of gross motor skills that go from easy (rolling on the floor) to hard (walking up a flight of steps). Individuals will perform as many skills as they are able.</div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdC99kKgjG5mDjCEwb9YaW_JJcrK587X2tsJPNA79J6YsoBjRCsD21gApQFywCaKaMjGObahfnJ8SvSI0VkNPKbTwhR87e0uaYmNm5H47snyWfBKA0iKKTsAg2OPGpUGwTsRj1mhk7-wHo/s1600/July2010+023.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdC99kKgjG5mDjCEwb9YaW_JJcrK587X2tsJPNA79J6YsoBjRCsD21gApQFywCaKaMjGObahfnJ8SvSI0VkNPKbTwhR87e0uaYmNm5H47snyWfBKA0iKKTsAg2OPGpUGwTsRj1mhk7-wHo/s320/July2010+023.JPG" width="320" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5Y3r4rCzzKLBas0Q6uDgdXxeKLYKeKCMLzDDchojRPdu64G_udrYSU8fhxTGYE11S8dzdULASCTD1SVC_WqcfDNl_nfmHTkHFwuLMh61vsV9zOqZbWdSxrgxA_7ACR2AO1kpw4beBty6I/s1600/July2010+027.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5Y3r4rCzzKLBas0Q6uDgdXxeKLYKeKCMLzDDchojRPdu64G_udrYSU8fhxTGYE11S8dzdULASCTD1SVC_WqcfDNl_nfmHTkHFwuLMh61vsV9zOqZbWdSxrgxA_7ACR2AO1kpw4beBty6I/s320/July2010+027.JPG" width="320" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">They told him to stand straight like a soldier. lol</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKC4UMABnI8ZkxfrgoNiCn7ZM-VWSsq7tGDLfEUmLJW4-DQ2Okw1kqsslx3K_GrPOWQGlnaIN-HimKJiGuDP9XkEbnFSK6zyZYoVr1sIHcT9S3f-65x895Fe5ion4KlNJ1dP7SE8vMmojs/s1600/July2010+031.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKC4UMABnI8ZkxfrgoNiCn7ZM-VWSsq7tGDLfEUmLJW4-DQ2Okw1kqsslx3K_GrPOWQGlnaIN-HimKJiGuDP9XkEbnFSK6zyZYoVr1sIHcT9S3f-65x895Fe5ion4KlNJ1dP7SE8vMmojs/s320/July2010+031.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Muscle Strength Testing-</div><div style="text-align: center;"></div><div style="text-align: center;">Individuals will be asked to push or pull using their hip, knee and ankle muscles. The amount of muscle force produced will be measured by a machine.</div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgod3jSz9-xM6MdtQlx2YBsf7kFs8PSqRcnJcdQFSjmKc4ak7lPcuMbxme3ev5rSwnUcWlLY-rooQrXcqEKgLWmE6l2LUh9iO8owqFM8O251wir9OkPLbN5U3Vls2QjLvJmnI250lPGbf1N/s1600/July2010+035.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgod3jSz9-xM6MdtQlx2YBsf7kFs8PSqRcnJcdQFSjmKc4ak7lPcuMbxme3ev5rSwnUcWlLY-rooQrXcqEKgLWmE6l2LUh9iO8owqFM8O251wir9OkPLbN5U3Vls2QjLvJmnI250lPGbf1N/s320/July2010+035.JPG" width="320" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoCt2n33glJ_a8j52YlzFf392hBgzKxcbW1YauevJgauD9f_0D7_0QIcTRAmIs2QWWtFRBuDTCpu7YURhov7xO3TwnQq5tlNQZ9k-Um10FVOLQw474kRO0AUbs8ZIT2-yrgKUd517PR1Tx/s1600/July2010+036.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoCt2n33glJ_a8j52YlzFf392hBgzKxcbW1YauevJgauD9f_0D7_0QIcTRAmIs2QWWtFRBuDTCpu7YURhov7xO3TwnQq5tlNQZ9k-Um10FVOLQw474kRO0AUbs8ZIT2-yrgKUd517PR1Tx/s320/July2010+036.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Computerized Assessment of Walking-</div><div style="text-align: center;"></div><div style="text-align: center;">Individuals will be asked to walk down a short walkway while wearing reflective markers. The marker information is hips, knees and ankles move during walking.</div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmEur9UzD7DOcB_hvKAn9UTanELoDfbFVggAhelBX3YVj0TK12Ot1iU__dLqaCHLL590UfIMFxBmQGweMelAF9JSPDSqsNSNnsCCwD8pD_qe2Dz_W6Xtx-L8AfFa1HxoOjox3GF9nvdiyz/s1600/July2010+074.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmEur9UzD7DOcB_hvKAn9UTanELoDfbFVggAhelBX3YVj0TK12Ot1iU__dLqaCHLL590UfIMFxBmQGweMelAF9JSPDSqsNSNnsCCwD8pD_qe2Dz_W6Xtx-L8AfFa1HxoOjox3GF9nvdiyz/s320/July2010+074.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">His hair is so long we had to pull it back to see the marker on his neck. lol<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmKjzz5wNKhr9jtLV4qJh0bO7vDsiFyjrAByN_m1meUjV6XgMxrW6CpDoo34rS0H0QcMkQVvO0AwLprFxgTdKx5h6IdO0C3kuRA50eJk2IgN8sZmYJrMSX9xDFgXzTEQb9rMByRuY2Sq8-/s1600/July2010+068.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmKjzz5wNKhr9jtLV4qJh0bO7vDsiFyjrAByN_m1meUjV6XgMxrW6CpDoo34rS0H0QcMkQVvO0AwLprFxgTdKx5h6IdO0C3kuRA50eJk2IgN8sZmYJrMSX9xDFgXzTEQb9rMByRuY2Sq8-/s320/July2010+068.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGP7sVZr_KVEyYHioSKCD2_xDulJIkeI6jdWTeEEIrq_tfcc3UkTGvxO-xGVQ9EuN7M-klpMoRACQDkYw89EmPsAllnHRGz-gv4CRDWZT9s4mVzqSiiBwv0GR9eRhvrl9G9XLitQwpqakh/s1600/July2010+070.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGP7sVZr_KVEyYHioSKCD2_xDulJIkeI6jdWTeEEIrq_tfcc3UkTGvxO-xGVQ9EuN7M-klpMoRACQDkYw89EmPsAllnHRGz-gv4CRDWZT9s4mVzqSiiBwv0GR9eRhvrl9G9XLitQwpqakh/s320/July2010+070.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_3J3L-Gg_RULeEES3IBRn_JfMEezFrwbtNbJfTf2idDrzmUflmLde7TxKzsGQ4ZMae-HqM_iIBuLAZvdEfDomSRWu6_zSCQQ17sEsXQm8a_Ll9JwEyNGR9osSJzk0xqXlzsVco7NW0shA/s1600/July2010+073.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_3J3L-Gg_RULeEES3IBRn_JfMEezFrwbtNbJfTf2idDrzmUflmLde7TxKzsGQ4ZMae-HqM_iIBuLAZvdEfDomSRWu6_zSCQQ17sEsXQm8a_Ll9JwEyNGR9osSJzk0xqXlzsVco7NW0shA/s320/July2010+073.JPG" width="240" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"> My amazing boy!! =)</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMsQ4QV3mYy8GrD-p5-aWKVOVhmxrza6fLuTFxqxVqSjNN9LhI__fr6EbXrLOVNQro-BuMm-NQul3cUKbvk6StamlNDQ7cD48Cn80c1EdZnH8nLn-_NudrVtYSESX4Iood6UvjormkQ757/s1600/July2010+075.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMsQ4QV3mYy8GrD-p5-aWKVOVhmxrza6fLuTFxqxVqSjNN9LhI__fr6EbXrLOVNQro-BuMm-NQul3cUKbvk6StamlNDQ7cD48Cn80c1EdZnH8nLn-_NudrVtYSESX4Iood6UvjormkQ757/s320/July2010+075.JPG" width="320" /></a></div><br />
<br />
Here's a link to the trial listing: <br />
http://clinicaltrials.gov/ct2/show/NCT00312247?recr=Open&cond=%22Duchenne+Muscular+Dystrophy%22&state1=NA%3AUS%3ACA&rank=1 <br />
<br />
And a flyer that explains in a little more detail: <br />
http://www.cdmd.ucla.edu/_assets/DMD%20Brochure-UCLA.pdf<br />
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<div style="text-align: center;"></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com9tag:blogger.com,1999:blog-3223497687537320021.post-89429069428169237252010-05-27T17:10:00.000-07:002010-06-08T18:00:50.003-07:00Long time..So, I'm terrible at keeping this updated! Going to try to stick with shorter, more frequent posts from now on.. After this one of course. ;) We've had a lot go on since February. <br />
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We were able to stop by MDA's fill the boot in April and Carter had a blast talking with the Firemen. One of them even let him try on their helmet! We also had the great opportunity of discussing Carter's story and DMD with a first year genetics class at UCI medical school. Debra Miller of CureDuchenne was also there and it was an amazing session. I truly hope we were able to influence even a few of them to study Duchenne during their careers! The students just loved Carter (doesn't everyone? lol) and he had a blast with all the attention. Here's a link to CureDuchenne's blog post about the event: <a href="http://www.cureduchenne.org/index.php?s=UCI">http://www.cureduchenne.org/index.php?s=UCI</a><br />
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'Quick' medical rundown: Carter had a stomach bug that led to a trip to the ER for stomach bloating/severe pain at the end of February. We were worried about an intestinal obstruction but xray's showed that all he had was a lot of built up gas. They said sometimes the gut needs a little more time to get back into rythym and to give gas drops. Mylicon helped for a few days but then he started having pain again while eating/after meals. We followed up with GI who think he has a slow emptying stomach and started him on medication for that as well as Prevacid to help protect his stomach from the steroid he takes daily. The medicine is helping and he doesn't complain as much about his stomach hurting but still a bit of an issue. Trying to focus on small meals throughout the day for now but may need to consult again with GI and have an endoscopy to see exactly what's happening. As of right now, he's keeping up his weight and is getting good nutrition, it's just the pain issue that we'd like him to be free of. <br />
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We continue to follow up with his local geneticist and endocrinologist. His IGF-1 level has been high so we've lowered his growth hormone dose consistently for the past year, he's gone from a dose of 0.8 to 0.5 right now. Hoping the level will go into normal range again soon so we can stop adjusting his dose. We see minor dips in appetite and stamina when we lower his dose and his height is beginning to slow just a little bit. He's gone from the 25th% to the 11th% for height. But still on the chart and MUCH better than where he was prior to treatment so not a big deal at all. <br />
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Two weeks ago we had our annual visit at Cincinnati Children's DMD clinic. We're happy to report that he's doing VERY well! All of his timed tests were the same as last year and his strength is still very close to that of a 'normal' boy his age. He does continue to have tightness in his heel cords and hamstrings and we'll focus on lots of stretching to keep it from getting any worse. We discussed the possibility of doing another muscle biopsy so we can find out exactly how much dystrophin he has and where he fits on the Duchenne/Becker scale. Not sure what we will be doing yet. For now they are calling his phenotype "Intermediate" and thinking he will progress somewhere in the middle of severe DMD and mild BMD. He got his first manual wheelchair in March and loves it. Cincinnati was our first big trip with it and all went very well. It's a lot more comfortable for him than the stroller. <br />
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I can go into a lot more detail, but this is plenty long enough! I will do another update soon; I promise!! <br />
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Oh, I can't forget to add, tomorrow is Carter's kindergarten graduation!! Can you believe it?! My baby will be a first grader as of August 11th! =*) He's doing soooo well in school, he's reading WAY above grade-level and loves to write stories as well. We are beyond proud of him!! <br />
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<div class="separator" style="clear: both; text-align: center;"></div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-33106136120863010102010-02-05T21:41:00.000-08:002010-02-05T21:41:36.668-08:00Six Years AgoFebruary 5th, 2004 we discovered just how difficult and rewarding this parenting thing can be. It was the one of the hardest and happiest days of my life. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyzWTFZhdC-ahZ7MJp5P94XtzmhflZvf01XpsIjj752zsbEaegCwiHxPVm-_hLYdRRXCpAPhMxOlpuUotDgY1l4T4cJi3WuQNDht3ubUHu68brVP7YZHOe0Bv0K4fvTj7wnEuVchxk8eS/s1600-h/53.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyzWTFZhdC-ahZ7MJp5P94XtzmhflZvf01XpsIjj752zsbEaegCwiHxPVm-_hLYdRRXCpAPhMxOlpuUotDgY1l4T4cJi3WuQNDht3ubUHu68brVP7YZHOe0Bv0K4fvTj7wnEuVchxk8eS/s320/53.JPG" /></a></div>My pregnancy was easy for the most part, but became high risk towards the end due to concerns about growth. I ended up with a diagnosis of IUGR (Intrauterine Growth Restriction) and had to go in for extra ultrasounds and monitoring 2-3 times a week for the last 2 months. We were expecting a small, healthy baby boy. Carter Blaze was born on February 2, 2004 at 3:36pm after a 41 week pregnancy. He was 5lbs 11oz and 18.5in long. The umbilical cord was very thin, but he appeared to be in perfect health. That appearance began to change pretty quick. Carter refused to eat.<br />
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I remember trying to get him to nurse for the first time in the delivery room, he latched on perfect and then just looked at me like he knew he was supposed to be doing something but just couldn't. That continued all through the night. I kept trying to get him to nurse and he would just latch on and stare at me. He didn't cry or act like he was hungry at all. Chris and I thought it was weird that he didn't cry, but we thought it was something we should just enjoy. The nurses thought that I was too young and didn't know what I was doing and figured giving him formula was the answer. They eventually convinced us to try giving a bottle the next morning to see if we could get anything into his system. He refused to suck from the bottle as well. While he was in the nursery to have some blood work done and get cleaned up after that the nurses took the top off a bottle and tried pouring it into his mouth! He threw it up in their faces. During the night, even though he never nursed, he began to spit up. It was a light yellowish color. The Dr. wasn't worried though and said some babies don't eat until they're 24-48 hours old. He said Carter just needed some time to have his first bowel movement and then all would be well. He said we could go home as soon as he pooped. That afternoon his spit up started turning more and more green and his belly was a little swollen. He was then confined to the nursery for observation. I sat there next to him until about 3am when I couldn't keep my eyes open anymore and went to bed. <br />
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I woke up at 6am and went straight to the nursery to check on Carter. The pediatrician was there and came right out to speak with me. The first thing he asked was if anyone in my family had cystic fibrosis. My heart sank... The Dr. began to explain that a transport team from Loma Linda University's Children's Hospital was on their way to pick Carter up and he was being transferred to their level 3 NICU where they could do further testing. They believed Carter had something called meconium ileus, which is an intestinal blockage and usually occurs in newborns with cystic fibrosis. <br />
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The transfer team got there and started to stabilize him. He was dehydrated, and got an IV right away. (No one from our hospital could get an IV in a baby his size). He was then put into a transport incubator and took his first drive via ambulance. Because the transport team had 3 members and the EMT had to ride in the back with Carter also, we were left to follow in my car. He arrived at the NICU with a blood sugar of 240 and weight down to 5lbs 3oz but he was otherwise stable. Still very calm and alert. They did several tests on him that day and concluded that he had some kind of an obstruction in his small intestine. We met a lot of Drs who told us it could either be an actual closure in his small intestine, or meconium ileus which could be a sign of cystic fibrosis. He was scheduled for exploratory surgery the next morning and they took several vials of blood to send for cystic fibrosis screening. They didn't want to waste any time getting an official diagnosis if surgery showed meconium ileus. <br />
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The next morning we got to the hospital real early and sat and rocked Carter while we waited for his turn in the OR. We took a lot of pictures and just snuggled and enjoyed our 3 day old baby who was about to have major surgery. I knew it was serious, but that fear didn't overshadow the happiness. These pictures make some people sad, but they are some of my favorites. This is when nothing in the world mattered compared to being able to hold that sweet baby. <br />
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The fear didn't hit me until it was Carter's turn to go downstairs. He was sedated and his arms and legs were wrapped in gauze to keep his temp up during surgery. They brought him out on his warmer to the elevator and all our family members in the waiting room were able to say a quick hello. Then chris and I got in the elevator and rode to the OR with Carter and his nurse. The doors opened into a small area with a big set of double doors leading to the operating rooms. We had just a minute to kiss him and say our goodbyes and then he was off to surgery. Chris and I rode back in the elevator alone.<br />
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That elevator ride was the worst. It was the first time I even considered the thought that it might not all be okay. I realized just how close we could be to disaster and could think of nothing better than holding that sweet boy again. All of the emotion from the past few days hit me at once. He was going to be okay, he HAD to be okay. To stay distracted during surgery we first went down to the cafeteria, then all camped out in the NICU waiting room and played cards and ate ice cream. We all tried to be as positive as as possible while we waited for news. <br />
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His surgery started off laproscopicly and was supposed to last a little over an hour. It was close to 3 hours before his surgeon stepped off the elevator. We got the best news imaginable. Everything went well. Carter was going to be just fine! He didn't have meconium ileus, he had what's called a type 1 ileal atresia (his small intestine was closed off just before it attaches to the colon). It meant a more complicated surgery; Carter lost 12cms of his small intestine. But it also meant there was no reason to think he had cystic fibrosis! The Dr. said he would grow up to be healthy and shouldn't have any long term problems. He said that if all went according to plan, Carter could be home in 5 days! We were overjoyed. Ecstatic. I learned what "happy tears" really are. I will never forget that moment, it was amazing. <br />
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I never imagined before becoming a parent just how intense the emotions that come along with it are. It is immense love that I think I only truly realized when faced with the possibility of losing it all. For the first time, I learned how important it is to cherish every moment we have.<br />
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For those that aren't familiar with our story, Carter ended up getting an infection after surgery and spent full month in the NICU. He had a few problems once he came home; we soon realized he was allergic to cow's milk protein and his growth was VERY slow. He was diagnosed as having growth hormone deficiency just before he turned 3 and has anaphylactic food allergies as well. He had a few more Drs appointments than the normal kid, but we expected that as he got older he'd continue to do better and for a few months we didn't worry about his health much. That all changed when Carter was 3 1/2 and we first heard the words Duchenne muscular dystrophy. My mind was suddenly thrown back into that fear of losing my baby. I again vowed that he was going to be okay, he HAD to be okay. We were again reminded just how important every second is. I think we all need this reminder sometimes. We need to slow down and really connect with our loved ones. We need to realize how lucky we are to have the people we do in our lives. <br />
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:)<br />
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-Rhiannon <br />
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Don't worry, there's lots more to Carter's story!Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com1tag:blogger.com,1999:blog-3223497687537320021.post-73304803661397705322009-11-12T13:22:00.000-08:002009-11-12T13:22:31.488-08:00Yearly Appointments<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjBSmvuAE04QbscLXY1MnwABIdZRb3lKrn_8cbun7EelI3Y8GIMiwlxuyUvwxo2DX1EFlznkWmTbCMXDX1eXyev1omtc4nTkmtJXcafogsltc3QdjZr0r-Ibf8W0igNy9BR-Z8hGYjqJ2H/s1600-h/thriller.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" sr="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjBSmvuAE04QbscLXY1MnwABIdZRb3lKrn_8cbun7EelI3Y8GIMiwlxuyUvwxo2DX1EFlznkWmTbCMXDX1eXyev1omtc4nTkmtJXcafogsltc3QdjZr0r-Ibf8W0igNy9BR-Z8hGYjqJ2H/s320/thriller.jpg" /></a><br />
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Hello all! I'm already not keeping up as much as planned, but am trying to get better. LOL. Things have been going very well around here. Finally making some progress on our wedding plans and will be putting down a deposit for our ceremony next week!! =) Carter has been doing amazingly well at school and we are proud to announce that he's learned all of his sight words and has been reading beginner books on his own like crazy the past few days!! Reading seemed to just 'click' with him one day and has been unstoppable since. I love seeing him so excited about reading, it's wonderful. The picture above is from his school make up picture day, he insisted on wearing his Thriller jacket. We saw "This is It" the night before and he LOVED the movie and got back into Michael Jackson mode. lol <br />
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Carter had his annual follow-up appointments with his local Neurologist/MDA clinic last week and then with Cardiology on Tuesday of this week. All is going very well with him. He met with a respiratory therapist through the MDA clinic and was able to do pulmonary function tests for the first time; his numbers were all within normal. We also got a prescription for his first manual wheelchair. Carter is actually very excited about it and looking forward to being able to use that in place of his stroller for places that involve a lot of walking. Hopefully the approval process won't take too long. We're not sure if we will be able to go to Cincinnati next year, but he's due to see Neurology again in May and then will do his annual echo and Cardiology appointments again in October of next year. Next month he will be seeing his Endocrinologist as well as Allergy/Pulm. I will let you all know how those appts go. It's so nice to finally be in a stage where we're essentially just checking in with his specialists and not having major issues that need to be addressed. :)Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com1tag:blogger.com,1999:blog-3223497687537320021.post-81076735925429288912009-11-01T20:21:00.000-08:002009-11-01T20:21:48.544-08:00Michael Jackson......was a HUGE hit last night. =) <br />
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</div><div class="separator" style="clear: both; text-align: left;"> Every house we went to last night just loved him. He had several people take his picture when he got up to their doors and even all the kids we passed on the street recognized him and kept saying just how cool he looked. Carter ate it all up of course. =) One house was so impressed we heard them continuing to sing Thriller as we walked down the street and asked their next group of kids if anyone could beat Michael Jackson. LOL The costume was just too cute!! Thank you so much "Grandma from South Carolina". <br />
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</div><div class="separator" style="clear: both; text-align: left;">After Trick-or-treat time Carter went home with Uncle J.Jay, Aunt Judy and Jalynn and has his first non-Grandma sleepover. He had a blast there as well. They even happened to see a man skydive and land in the park while they were eating lunch this afternoon! Carter thought that was just awesome. <br />
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</div><div class="separator" style="clear: both; text-align: left;">Here are a few more pictures from Halloween. =) <br />
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</div>Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0tag:blogger.com,1999:blog-3223497687537320021.post-42458773571496615512009-10-27T17:41:00.000-07:002009-10-27T17:41:58.575-07:00Starting newI recently decided to get more active with my blogging (I will try to stick to that! lol) and wanted to start fresh with a blog about more than just Carter's medical appointments. I plan on updating here at least once a week and will be keeping up to date with our day to day experiences and pictures. =)Rhiannonhttp://www.blogger.com/profile/18115243491616275320noreply@blogger.com0