tag:blogger.com,1999:blog-55699451350337526072024-02-07T23:05:04.896-07:00Lauren's JourneyMicrotia, Atresia, and Goldenhar's BlogBrian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-5569945135033752607.post-57763414234282454062022-05-31T12:24:00.001-06:002022-05-31T12:41:26.096-06:00<p> Today Lauren is having her 14th surgery. She is have surgery to reposition her upper and lower jaw as well as her chin. This is a surgery that we wanted to have done last year but because of battling insurance companies through multiple appeals we have had to wait. We originally wanted to have the surgeon performed by Dr. Jeffrey Hammoudeh in California. We’ve been consulting with him since she was very young and we really were confident in using him for the surgery. However our insurance refused to cover his services because he was out of network and they said there were In-Network surgeons we could use locally. This was disappointing because of the trust we had in Dr. Hammoudeh. We started meeting with surgeons here locally that were In-Network. Many of them told us her condition was too complex for them to treat her and there were others that we were not comfortable with their diagnosis and surgical recommendations. We then met with Dr. Creed Haymond last fall. He examined her and almost gave the exact diagnosis and treatment that Dr. Hammoudeh had recommended. He is very experienced in treating Lauren’s condition. He has worked very closely with her orthodontist, Dr. Baugh, in getting her prepared for the surgery. At the time he wanted to have new scans and X-rays done. We were hoping to have the surgery in the same calendar year as her Ear surgery, but we just couldn’t get everything in place and approved. In addition my employer changed insurance providers so we had to resubmit all pre-authorization requests. However we got it all approved and scheduled the surgery for April. We then had a consultation with Dr. Haymond where he explained the surgery in detail and the length of her recovery. It was much more extensive than we thought. Lauren had a school choir tour she would have to miss if we did the surgery so we pushed back the surgery one month to today. She returned home late last night and is now able to spend her summer healing and recovering.</p><p>Today she is having a BSSO surgery on her lower jaw. Lefort 1 Osteotomy on her upper jaw. And Genioplasty on her chin. This will help provide more symmetry and functionality to her jaw and face. When completed she will have her jaw wired for 4-6 weeks. She will be on a liquid diet for most of that time. She will need to be well protected and cannot have any risk of being struck in the face until she has had time to heal. This is a surgery that will make you second guess your decision but once she has healed we are hopeful it will make a big difference for her. This is something she has wanted to do and we have left these decisions up to her now that she is older and understands the benefits and risks. Once she has recovered from this surgery we can then move towards getting her surgery scheduled for a bone conduction hearing device for her left side. She and all of us were very worried for this day but we are confident in Dr. Haymond and the hospital staff will take good care of her. She has many friends and family praying and supporting her today. </p><p>As far as an update on her ear. The new implant looks really good. She has always been one to build up a lot of scar tissue but we use the steroid cream Dr. Lewin prescribed and that helps smooth out the tissue. We also had a one year follow up to Lauren’s diag of scoliosis of her spine. She has a moderate curve of her spine we noticed a few years ago. When we went to the last follow up the Doctor said the curve has not changed and he felt it would not get any worse and she’ll be able to continue without any treatment. It does cause pain at times and he back will pop. We started doing physical therapy and that seems to have helped a lot. The Doctor recommendation she remain active and stay in shape. This will help her strengthen her muscles and core to aid her back. It was a relief to know it hadn’t progressed.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQemHCKfPH51hvg_ESba8L6YQ58ibzgyMkO9NwZrFqMFeJbHp4MJ1PlnT94sYt44ch0dDivRzMeqVmdbOdt5zqyM93NaC3jCnehhSpZnMC-rA2f5s1DUgs3hYbLrnkvihFmmfSn9NKyd5po-s3Y4QDdH8yPusyBgyqYVvA4OW8AxGyduasrCDqlCyL/s4080/BE9B2FE5-2BC2-4B15-80FE-9AB65FAE6AC6.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4080" data-original-width="2296" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQemHCKfPH51hvg_ESba8L6YQ58ibzgyMkO9NwZrFqMFeJbHp4MJ1PlnT94sYt44ch0dDivRzMeqVmdbOdt5zqyM93NaC3jCnehhSpZnMC-rA2f5s1DUgs3hYbLrnkvihFmmfSn9NKyd5po-s3Y4QDdH8yPusyBgyqYVvA4OW8AxGyduasrCDqlCyL/s320/BE9B2FE5-2BC2-4B15-80FE-9AB65FAE6AC6.jpeg" width="180" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-IOwYpPPpjfoxQAwyND9q9ES-IbjbZ9Sv7qlSNxXfP6Qd9FIppbaedNyL1e_NOLe63K1S_ICYGK2aLCwzXhVS9SKK-SqNW4BTEcabmUZk9rNtOkTHd6OJdKdzXKXiMhqHpPLrSJHQ9XaL4uK6hDVv5vP_LLX5pfn9BYAymWk_PGbEYQbiBLh1sntv/s4608/96E940BD-F473-4D9D-AD80-C91A9E94465F.jpeg" imageanchor="1" style="margin-left: 1em; 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text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHDso0GRbii6-LL6N_gjyFbAzUpRKBv3oLXashQlnWyF795epmHDpo92aN4PrYFACBStWr-lOt-kp8u9kzbNve91O7ZzA85RqTbwk8BVjRByqlwThozyo43sLbnTrdqLqzteUElLtbzJc/s4160/IMG_20210211_051606586.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4160" data-original-width="3120" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHDso0GRbii6-LL6N_gjyFbAzUpRKBv3oLXashQlnWyF795epmHDpo92aN4PrYFACBStWr-lOt-kp8u9kzbNve91O7ZzA85RqTbwk8BVjRByqlwThozyo43sLbnTrdqLqzteUElLtbzJc/s320/IMG_20210211_051606586.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS2uu3x2eMhFv0nzcok2vR_L7fNVgwcGv34_PPV6MxIIU-GsYtAT0AwjAedKrGSjIVLHSb_YLk09WCoFvv3omutzKhH233cZntWbCP0trtBZ6mmWRujrgzsmJaLyk950xh-GVOXYy4taU/s4160/IMG_20210211_052643245.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4160" data-original-width="3120" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS2uu3x2eMhFv0nzcok2vR_L7fNVgwcGv34_PPV6MxIIU-GsYtAT0AwjAedKrGSjIVLHSb_YLk09WCoFvv3omutzKhH233cZntWbCP0trtBZ6mmWRujrgzsmJaLyk950xh-GVOXYy4taU/s320/IMG_20210211_052643245.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDYaZZ1kWgTwrCwDu0lk5ANFbDIA_qd_bTl79yo1dU8AWPcKUfXGQJAbummk9nBIz89vHMEzQBXZOW1B2nwUIp-clIyDDvnF2YrMfcYhsX6Ks0d74CAOKZkGSwgOu6tQFv6vts8jd8JXo/s4160/IMG_20210210_103052219_HDR.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4160" data-original-width="3120" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDYaZZ1kWgTwrCwDu0lk5ANFbDIA_qd_bTl79yo1dU8AWPcKUfXGQJAbummk9nBIz89vHMEzQBXZOW1B2nwUIp-clIyDDvnF2YrMfcYhsX6Ks0d74CAOKZkGSwgOu6tQFv6vts8jd8JXo/s320/IMG_20210210_103052219_HDR.jpg" /></a></div><span style="text-align: left;"> Today marked the first of three surgeries we are planning this year. It has been over 6 years since our last post. Lauren has been doing very well since her last surgery. She has been growing up fast and has been having a normal teenager life. She is a straight A student and continues to pursue ballet. She has become a beautiful young woman. About a year ago, we started discussing surgery again. Up to this point we have been doing a lot of work to improve Lauren’s jaw and symmetry through orthodontics. It has been amazing the progress she has made. We have have been working with Dr. Jeffrey Hammoudeh from California for some time now. He would like to perform jaw surgery for late 2021. Over the last couple of years we have noticed Lauren’s hearing has diminished in her affected left ear. It appears that nerve damage during the atresia repair when she was 4 years old has caused her hearing loss. The atresia initially improved her hearing but over time it has progressively gotten worse. Therefore we started looking into aiding her hearing. We met with a local audiologist. The fear was nothing could be done because of the damage. Any auditory aids would not work. However bone conduction aids seem to really help improve her scoring. There were many different brands and types but she tended to like the Ponto device. If we had to do things over again, we probably would not have done atresia repair. Many families now are opting not to because of the risks involved.</span></div><p></p><p>In addition to improving her hearing, we were also concerned that her Medpor ear implant was drifting again. We have had two previous touch up surgeries to fix the drifting. Since her original implant surgery 11 years ago, Dr. Lewin has developed a new one piece Supor implant over the past few years. This is a one piece, 3D scanned and printed implant that was taken from her right ear. This would provide a larger base to prevent drifting and allow for more symmetry of her current ear. Her ear now with drift has made wearing glasses and a mask during COVID difficult. After talking with Lauren, this was something she wanted to do. We decided to schedule this surgery with Dr. Lewin to replace her implant and also get a Ponto hearing device. As with all surgeries, we had to fight for insurance coverage. After being denied and filing multiple appeals we got all the codes approved for surgery. We just don’t know for sure what percentage will be covered til after the surgery. Because of the uncertainty, we decided to just do the Supor surgery with Dr. Lewin and do the Ponto later in the year with a local surgeon. It would be an additional surgery but coverage would be better in-network. </p><p>Lauren’s surgery today should be about 4 hours. Dr. Lewin was hopeful not to have to do additional skin grafts. We plan on spending some time here in California recovering and then having a post-op visit on the 17th. Along with these surgeries, we discovered Lauren has moderate scoliosis of her spine. We saw multiple specialists. The advice was there is nothing that can be done at this time. She is not a candidate for a brace because her growth has slowed and it is not severe enough for surgery. We are looking into physical therapy and chiropractic options to prevent it from getting worse. We were told by the specialists that her scoliosis is not associated with her Goldenhars syndrome.</p><p>We know it will be a busy year, but are optimistic for the results. Lauren is strong and courageous. As I tell people about her trials, I always say she handles this way better than her parents. 😊</p><p><br /></p><p><br /></p>Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-50851108563736391052014-10-30T20:42:00.001-06:002014-10-30T20:43:21.555-06:00Another SurgeryWell Hello Everyone! We are posting because we have had another surgery. Lauren has been doing so well. She is an awesome ballerina and is growing so fast. We had another surgery on October 23 on her ear. Mostly it was just to do some tweeks. We really hope that this is the LAST ear surgery.<br />
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She will be having another eye surgery in December to help with the ptosis or droopy eyelid that really seems to have gotten worse after her first eye surgery to remove or minimize the cysts. The doctor says it is because one of the cysts was helping hold her eye open and when the cyst was taken her muscle had not built the strength that the other eye has to hold it up. <br />
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Our ear surgery went well. Dr. Lewin is awesome. We tell Lauren that she has magic hands and she does. So for now we will post again after her next surgery and will add some pictures as well. Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-64322189928791421992014-08-05T11:35:00.000-06:002014-08-05T11:35:17.020-06:00<div class="separator" style="clear: both; text-align: center;">
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It has been quite a while since we last posted. Lauren has been doing very well and as time has passed, it has been easier to forget about everything she has been through. In July, we were able to attend the Microtia/Atresia conference in Long Beach, California. This conference was similar to what we attended 5 years ago. This conference was critical to our decision making. It was great to be able to attend and meet with all the doctors again. Our primary goal was to see Dr. Lewin and also meet with Dr. Hammoudeh. He is a plastic surgeon that focuses on the jaw. For the past couple of years since Lauren has had jaw distraction surgery, we have been working with our Orthodontist, Dr. Yamishiro, at Primary Children's Hospital to help with her bite, widening her upper jaw, and lengthening the lower jaw. <br />
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After meeting with Dr. Hammoudeh, we came away very relieved. We were worried she may need additional distraction surgery for her jaw. We came prepared with some x-rays and scans that he requested. After reviewing them, he felt that she would not require any surgery at this time. He wanted to speak with Dr. Yamishiro and work out a plan for her in the next few years. He feels we can still do more with orthodontics to aid her in straightening our her jaw. He does feel she will need braces soon and she may have to wear braces for up to 5 years. It was wonderful to see two doctors work together to come up with a plan for Lauren and to do what is best for her.<br />
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We were also glad to meet with Dr. Lewin. We haven't seen her in a while. She says that Lauren's ear is doing very well, but we thought she may need a revision. Dr. Lewin agreed. The small triangular part of the ear that covers the ear canal has drifted slightly. The tragus as it is called looks like it needs to be repositioned and her ear may need to be rotated. She feels the revision surgery would be about 3 hours. We will now have to decide when we would like to have this surgery done as well as make sure our insurance will cover it. It is not a pressing need right now, but we may try to do it sooner than later. <br />
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As Lauren has gotten older she has become more aware of her ear and is sometimes self-conscious. However, I think that is just because of her getting older and closer to becoming a teenager. No one ever really notices her ear <br />
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and all her friends are very supportive of her. <br />
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The rest of the conference was great. We met some great families and some very cute kids. I wasn't expecting it, but it was much more emotional for us than I thought it would be. I think just being there, thinking back 5 years ago from the time we were first there brought back a lot of memories. It seems like so long ago, but we are grateful to have been there and we feel we made the right decisions. If anyone out there has questions about this blog, Lauren, or her journey, please let us know. <br />
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The photo above is Lauren, her sister Kara, and Derrick Coleman. Derrick is an NFL football player for the Seattle Seahawks. He has been deaf since the age of 3. Dr. Lewin invited him to come to the conference and meet the kids. He signed autographs, took photos, and played with the children. He is a great role model and is an amazing person.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-15629566378231248422012-04-05T09:47:00.003-06:002012-04-05T09:55:23.061-06:00So Lauren just completed her ninth surgery on April 3, 2012. It was her first eye surgery where the doctor (dr. patel) removed or reduced the two dermoid cysts she has had on her left eye since birth. The cysts have not caused any vision problems, however they were starting to irritate her eye due to some fine hairs that were growing out of them. Yes, that is right, hairs. We were told when she was born that the tissue on these cysts vary and that they could be tissue from different areas. They did tell us that this might happen, and at her last eye appointment it was noted. She has done great, she told us that her left ear now has a friend because her left eye has had surgery now. It is very swollen and red and the doctor says it can take up to a month for the redness to go away. Hopefully we are done, or done at least for a while. Thanks for everyone's love and support.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-80255841532034391852012-01-24T19:55:00.007-07:002012-01-24T20:32:46.646-07:00Wow, has it almost been 2 years?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXBNbDWar1ElicMpdS3rVtqQRVtvTFOJETw0ehZvvUoPgZP7E18hf-0Ax5PFiYdaNCrjGbZXB8fC2Zgilv5MZSl2dGccdxxWGQivL6Ik2Scs6Jb8fFmuQs0Kfo2t5OsY8HaWZJfbhBW1Y/s1600/IMG_20120124_135434.jpg"><img style="margin: 0px 10px 10px 0px; width: 150px; height: 200px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5701403906858680018" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXBNbDWar1ElicMpdS3rVtqQRVtvTFOJETw0ehZvvUoPgZP7E18hf-0Ax5PFiYdaNCrjGbZXB8fC2Zgilv5MZSl2dGccdxxWGQivL6Ik2Scs6Jb8fFmuQs0Kfo2t5OsY8HaWZJfbhBW1Y/s200/IMG_20120124_135434.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-NXop1ykfAxsQkSEMOOrvEmtDQOjkQdSjjprsBBMySrYbF1g-4yyb4JR3lGl6OS4iZ8An9Ajq3Wfbrkeo5gKNes9Rci6E0NGHkeF3LLdy9ihyTLNZ1S0X_aliQtYYMS4MxGrGrzjGx-g/s1600/IMG_20120124_094049.jpg"><img style="margin: 0px 10px 10px 0px; width: 248px; height: 167px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5701403906922920258" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-NXop1ykfAxsQkSEMOOrvEmtDQOjkQdSjjprsBBMySrYbF1g-4yyb4JR3lGl6OS4iZ8An9Ajq3Wfbrkeo5gKNes9Rci6E0NGHkeF3LLdy9ihyTLNZ1S0X_aliQtYYMS4MxGrGrzjGx-g/s200/IMG_20120124_094049.jpg" /></a><br /><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div>It has almost been 2 years since my last entry. I have been meaning to update the blog with new photos of Lauren and how she has been progressing but she has been doing so well, it made it easy to forget what she has been through the past couple of years. Today, Lauren had another surgery on her ear. This surgery was to help rotate the ear slightly and provide some added touch up. She also was able to get her ears pierced. She was very excited and wanted this badly. The surgery was in Beverly Hills with Dr. Lewin. The surgery lasted about 4 hours and she did very well. Laure was very concerned going into the surgery today. She was very scared. Now that she is older she is starting to understand more what is going on and is fearful it may hurt. She was also very concerned about going back to school with bandages because she thought the other kids would laugh at her.<br /><br />I reminded her of the experience we had with her a couple years ago after her Medpor reconstruction. We were in a couple days after her surgery. A small girl about her age was leaving the restaurant with her family and she was holding a balloon. A few seconds after they left the restaurant, the girl ran back in and gave her balloon to Lauren. She must of saw Lauren's bandages and wanted to give it to her to make her feel better. We know she doesn't have to worry what other people may think when they see her.<br /><br />Her recovery should be fairly quick. She is currently off-track from school and won't be going back for another two weeks. She will be bandaged for about one week and we can then remove everything. She is currently a little sore, but tonight she is back to her energetic self. Dr. Lewin feels we can come home as early as tomorrow.<br /><br />I will include some new photos of her from the past couple of years. Later this year she may have surgery to her left eye to remove a small cyst. It is not affecting her vision, but it is something that may cause irritation as she gets older. After that, there is not anything more planned for her except the orthodontic work that we are having done at Primary Children's Hospital to help lengthen her jaw on the left side. We appreciate everyone's support and prayers.</div></div>Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-24566705226365422642010-05-18T13:29:00.002-06:002010-05-18T13:36:11.022-06:00Home Sweet HomeWe are so glad to be home. The surgery was a success. Lauren had a lot of scar tissue and the doctor was able to remove it. All of the other minor tweeks the doctor wanted to do were also done. Dr. Lewin said that kids just like to produce lots of scar tissue and that it is something we are going to need to watch for carefully. We can not say enough about Dr. Lewin, she is the greatest doctor. Lauren as usual is just amazing. It is incredible to watch how fast she bounces back. She was eating to her full capacity just hours after her surgery. We are biased parents, but she is absolutely an amazing example of patience and compassion to everybody she meets. The staff at the hospital were so complimentary of her. We are glad to be back and are hoping we are done with surgeries for a while. Thanks to family and friends who helped us get through another surgery.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-244926751986128572010-05-15T11:52:00.002-06:002010-05-15T12:01:13.341-06:00Surgery Update- Day 2Lauren is doing very well today. She was a bit grumpy for a few hours after surgery, which seems to always happen each time she starts coming out of the <span id="SPELLING_ERROR_0" class="blsp-spelling-error">anesthesia</span>. But once it wears off she is back to being her cheerful self. Her next appointment is on Monday and hopefully she will be cleared to return home. If not, they may need to stay a couple more days. In the meantime, the hardest thing for them is finding things to do. Strange thing to say since Disneyland is so close.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-26869999379994991312010-05-14T14:27:00.002-06:002010-05-14T14:31:13.805-06:00Surgery UpdateLauren came out of surgery around noon. She was in for about 5 hours. It took a little longer than expected but she is just waking up now in recovery. Once she can show she can take in fluids, she will be released to go back to the hotel. She has some bandaging and will be wearing the protective ear cup again for a few days.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-85478888552297934972010-05-12T20:19:00.003-06:002010-05-12T20:27:06.593-06:00Lauren arrives in CaliforniaBecky and Lauren flew into California today and they were able to meet with Dr. <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Lewin</span> for the <span id="SPELLING_ERROR_1" class="blsp-spelling-error">pre</span>-op visit. Dr. <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Lewin</span> was very pleased with what she saw with her ear. She pulled a large scab out of her canal that formed after we started using the ear plugs. She says it is not threatening the framework and should be easily cleaned up during the surgery. There is also a lot of scar tissue build up that she will clear up as well. She will have the surgery on early Friday morning. I am not sure how long the surgery will be. They are staying in the same hotel we were in last May for her surgery. She is very close to Disneyland, but they probably won't be going there this time. I will update the blog throughout their stay.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-81964478009361437722010-05-05T14:23:00.002-06:002010-05-05T14:29:53.051-06:00Another surgery..So it is amazing at how fast things can change. It looks like we will be heading to California next week for another surgery. Although we were planning on another surgery, we were not planning on it being so soon. We noticed something right below her ear canal that seems to be constricting the entrance to her canal. We have sent pictures to doctors, and the guess is that it is either scar tissue, bone, or the medpor implant. They want to look at it soon to reduce any risk of infection. It will not be a complex surgery, but they just want to take care of it sooner than later. They will also do the other minor surgery as well which we were planning on doing already. Her surgery is May 14th and we will need to be there for a pre-op on May 12th. We will be able to come home May 17 after her post op appointment. Wish us luck!Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-18685106555664292362010-04-28T18:02:00.002-06:002010-04-28T18:07:31.590-06:00Another mouth pieceToday Lauren had another device put in her mouth. It is supposed to help the left side of her jaw catch up with the right side of her jaw. After it gets to the desired length, we will then start to turn it to widen that added extra length. She is a trooper. Luckily she gets to take it out when she eats. She is adjusting to talking with it in. I think it is going to take a while to relearn to talk once more. It is amazing at how patient she is.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-82676810753629644912010-04-09T13:38:00.003-06:002010-04-09T13:55:13.700-06:00Hearing test resultsSorry, we haven't been updating this. Today Lauren had her hearing tested. We haven't done this in about a year. It was pretty good news. Her hearing has stayed consistent throughout the past year post op. She still has a hearing loss with high frequency sounds. This is something she will have to learn to compensate for, which she already does. We spoke with the audiologist and she is going to speak with Lauren's kindergarten teacher on placement in the class, and a possible amplified system. She said that when the classroom gets real noisy, Lauren might miss some things. We feel so lucky that Lauren is doing so well, and blessed that her right ear remains perfect and has compensated for any loss on the left ear.<br /><br />We also having been doing some treatment with a steroid ointment and ear plug on her ear canal because it seems to have constricted a little. That has really seemed to help. We will continue this treatment for another two weeks. The steroid ointment helps scar tissue expand and thin, thus stretching it back to where it was. Finally, we spoke with Dr. Lewin afer sending some current photos of Laurens ear. She is very happy with the ear. She wants to do one final surgery on her outer ear in the future. It will be just to tweak a couple things and to add a little fat in her left cheek.<br /><br />I almost forgot because Lauren is so patient, she has also been doing a lot of orthodontic work because of her jaw. She just had an upper palate expander taken out after about four months. She then was measured for another device upper and lower that will help stretch or lengthen her left lower jaw. She was excited that they could custom make it pink just for her. She is a trooper. It will be done in two weeks and then we will have it put on. Luckily, it can be removed when she eats and won't be as uncomfortable as the last expander. She is a trooper and never complains, we learn and grow from the strength that she shows as she accepts and deals with everything so calmly.<br /><br />We will try to do better at updating this.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-29843474193272396012010-01-26T22:58:00.006-07:002010-01-26T23:18:50.336-07:001 Year Anniversary<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwG-1swg6eg6KpSyWijNjjVARltG-Bn_Zr4rnqNFphSAGa5OQYbQCGF4hwLax2YLLptf-wVY56a25DyqV7_0hR0r_Imd8y2dUFxwuLheSq54-1x20CMfLhQ5OnMkA9gWgJd-gLa67c3Po/s1600-h/IMG_0649%5B1%5D.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 165px; FLOAT: left; HEIGHT: 133px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5431298782429006402" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwG-1swg6eg6KpSyWijNjjVARltG-Bn_Zr4rnqNFphSAGa5OQYbQCGF4hwLax2YLLptf-wVY56a25DyqV7_0hR0r_Imd8y2dUFxwuLheSq54-1x20CMfLhQ5OnMkA9gWgJd-gLa67c3Po/s200/IMG_0649%5B1%5D.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD2JhHFrmvFBuFNeWCUmmLZYOVXHXgTExUbfLGOwuCy13Qpb6_mZUZf6al4t27Zfdvzh8LMQwdZW_t0GLyyGb0bjGVA16GpZMMzmq1H8NMhKpxnS-1fYTku66fIW3fwliz-4dNIPBW5TQ/s1600-h/laurenjanuary+005.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 148px; FLOAT: left; HEIGHT: 135px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5431298791704371890" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD2JhHFrmvFBuFNeWCUmmLZYOVXHXgTExUbfLGOwuCy13Qpb6_mZUZf6al4t27Zfdvzh8LMQwdZW_t0GLyyGb0bjGVA16GpZMMzmq1H8NMhKpxnS-1fYTku66fIW3fwliz-4dNIPBW5TQ/s200/laurenjanuary+005.jpg" /></a><br /><br /><br /><br /><br /><p align="left"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwG-1swg6eg6KpSyWijNjjVARltG-Bn_Zr4rnqNFphSAGa5OQYbQCGF4hwLax2YLLptf-wVY56a25DyqV7_0hR0r_Imd8y2dUFxwuLheSq54-1x20CMfLhQ5OnMkA9gWgJd-gLa67c3Po/s1600-h/IMG_0649%5B1%5D.JPG"></a></p><br /><br /><br /><br /><br />It was one year ago today that Lauren had Atresia repair surgery with Dr. Roberson in Palo Alto, California. She continues to do well and the surgery was definitely worth it for her. She doesn't have perfect hearing on her left side, but it is much better than prior to the surgery. We haven't had her tested in a while and would like to do that again soon. The tests that were conducted post surgery showed very good improvement in the higher decibel ranges, but she did decrease in some of the lower ranges. Overall, the tests have shown successful results. We are hopeful that she will not need a hearing device in the future. I have included photos from before and after the surgery. The Medpor surgeries were conducted in May and October 2009.<br /><br /><br />An update on Grandpa Ottley. He had Ulnar Nerve Decompression on January 13th. He has since recovered but has had limited improvements. The doctor says it may take up to two years for any improvement to take place. Nerve regeneration is a very slow process and patience is required. Grandpa attempted to go back to work today on a limited basis to see how well he could do. He is planning to take it slow and ease back into working full time again.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com2tag:blogger.com,1999:blog-5569945135033752607.post-11013533892362416572010-01-07T15:03:00.002-07:002010-01-07T15:33:14.684-07:00Grandpa Ottley and Lauren: Update 14I apologize for not updating this in more than a month. Both Lauren and Grandpa Ottley have been continuing to recover. Lauren has been back in the swing of things and is still healing very well. She had her ears pierced during her last surgery. We kept the ear rings in for about a month. On her birthday, she received some new ear rings so we took the old ones out. She started to get a bit a swelling soon after that so we have kept the ear rings out since. Dr. Lewin says it shouldn't be anything to worry about and to just keep an eye on it. I promise to add some new photos of her on here as soon as I can. 2009 has ended and it is overwhelming to think of all she had to go through last year, but all in all, she has handled it better than any of us could. We don't have anything planned for her this year. She is continuing to wear an expander that is placed on the roof of her mouth. We tighten the device daily to expand her upper pallet. She will have to do this for a couple more months. After that, she may wear another device to try and lengthen the jaw on her affected side.<br /><br />As for Grandpa Ottley, he has not gone back to work yet. He is doing much better after the bypass surgery but he has had some lingering effects in his arm and hand. He has been diagnosed as having nerve compression in his left arm. The doctors say this was probably due to the arm placement during his surgery and/or recovery in the hospital. It compressed the nerve near his elbow and it has caused pain, tingling and numbness ever since. The solution, we hope, is that another surgery will fix the problem. It is an outpatient surgery and recovery time should be short. They basically reposition the nerve so that it is not compressed. It may have immediate improvement or it may take some time. If he is able to this ailment fixed, he should be able to return to work.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-21567162981194679712009-12-10T09:09:00.003-07:002009-12-10T09:19:45.635-07:00Grandpa Ottley and Lauren: Update 13Lauren celebrated her 5th birthday this week and she was very excited. She has been healing very well and there have been no problems so far post surgery. She got some new ear rings for her birthday so that she can show off her pierced ears. She is still wearing the upper retainer in her mouth that we have to turn each day. It has come loose a couple times now and we have had to go in and have it repositioned. She will have to have it tightened for another month and then keep the device in place another couple of months afterwards. I hope to post some new pictures of her ear on her soon.<br /><br />Grandpa Ottley hasn't been back to work the past few weeks. His shortness of breath is gone, but he has had pain in his arm and hand again. He visited the neurologist this week and he seems to have some nerve inflammation that can only be improved with surgery. He meets with a neurosurgeon next week for a consultation. The surgery is an outpatient surgery and shouldn't be much of recovery period. Sounds like he should feel improvement immediately.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-48405527184995628572009-11-27T10:33:00.002-07:002009-11-27T10:42:34.002-07:00Grandpa and Lauren: Update 12Grandpa <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Ottley</span> returned to work last week after being cleared by the doctor. By Thursday, he was feeling pretty worn down and that night he started having shortness of breath. Friday morning he felt like he should go to the hospital. We went to the emergency room and they put him through all the standard tests. They think that due to his high activity that week, he started to build up fluid in his lungs and it caused the shortness of breath. They ruled out another heart attack and just felt like his working that week was a bit too much for him. Since then, he has not worked this week and has been trying to get his strength back. They prescribed medication for him to take to help get rid of the fluid and also started him back on regular breathing exercises again. Hopefully he will rebound soon and be able to get back to work if even on a limited basis.<br /><br />Lauren has been doing wonderful. She is healing well and hasn't been slowed down at all. We had the expander fitted back into her mouth and she'll have to wear that for another month or two. We are planning to have a CT scan done here locally for her jaw in the upcoming month. We want to send this to Dr. <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Urata</span> in California to get his opinion of her jaw distraction. He did see her in his office when Lauren was having the surgery last month. He felt that he would probably wait to distract again for a couple years unless we are able to fix it <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">orthodontic ally</span>. Other than that, things with her will slow down a bit. We will continue to post photos of her to show the progress of the healing to her ear.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-3149300589814396002009-11-03T22:28:00.002-07:002009-11-03T22:42:34.732-07:00Grandpa and Lauren: Update 11Grandpa <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Ottley</span> met with Dr. Jones today. He is the surgeon that performed the triple bypass just over a month ago. The checkup went very well and he said he is showing very good signs of recovery. He removed many of the restrictions that were given when he was originally discharged from the hospital. He feels he should be ready to go back to work as soon as he feels strong enough to do so. He has still been having pain in his left arm and fingers. The doctor feels this is not from the stroke as we first thought but rather the nerve near his elbow was irritated during or after surgery and it has become inflamed. He recommended taking anti-inflammatory medication for the next few weeks and if it doesn't improve, he would like to set up some rehab therapy for him. His vision is still limited in his left eye and that is a result from the stroke. We are hopeful that it improves over the next few months. He is continuing to get stronger and is trying to walk each day. The doctor gave us the impression he is ahead of schedule in his recovery and left it up to him to gauge his limits.<br /><br />Lauren had an appointment with Dr. <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Yamashiro</span> at Primary Children's Hospital so that she could be fitted for another expander device that will be put in to place next week. I am not sure how long she will have to wear it this time. This is the same device she had to wear earlier in the year. It is a bit uncomfortable for her but she adjusts pretty quickly to it. Her ear is healing nicely and we will continue to monitor it and send pictures to Dr. <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Lewin</span> so she can evaluate them.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-3128316539801061972009-10-27T20:31:00.005-06:002009-10-27T20:38:27.607-06:002 Week Post Op Photos: Stage II<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyCZCoIxGGjIiI-SG5ndL04Hy8tMuHUAjc7XIB8z4G8roSn2gx_D6koijm69uNpSvFhRrIPtgVqqFb7my-1GJMDVa9ITIaRKNM34cSe1KsoI_Pu4h4-yocXF58VJWgd7p-O0m8djK-U74/s1600-h/IMG_2711.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 200px; FLOAT: left; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397474241922638690" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyCZCoIxGGjIiI-SG5ndL04Hy8tMuHUAjc7XIB8z4G8roSn2gx_D6koijm69uNpSvFhRrIPtgVqqFb7my-1GJMDVa9ITIaRKNM34cSe1KsoI_Pu4h4-yocXF58VJWgd7p-O0m8djK-U74/s200/IMG_2711.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg71oN1_SGlV8EQ7JA02gTFaZ_VtHqgefTUmPsu2BQi0QPry9zZkc3mVFQlzvapUk8SSKdVbxLz80RqksZT7GPysyd5mJh_qipx0oUbCvKPVrRsVCQ2xnyK0VEbhrc1DyU4DkRQbj3SfA8/s1600-h/IMG_2715.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 200px; FLOAT: left; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397474250786988018" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg71oN1_SGlV8EQ7JA02gTFaZ_VtHqgefTUmPsu2BQi0QPry9zZkc3mVFQlzvapUk8SSKdVbxLz80RqksZT7GPysyd5mJh_qipx0oUbCvKPVrRsVCQ2xnyK0VEbhrc1DyU4DkRQbj3SfA8/s200/IMG_2715.JPG" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNH_oszDXZv_ZPtfSb7a4bI3Q5zjoIyWcCTOxskjCPUoSmEVhYQQ2xjEMQDE7YQn-X-0Lgov9s9rP1Q_QSXmLx9BtRnGrDuRS1ho_GF_xc9Rvi2qGXMxWM5-ycpf6gbg8WVJGATXdLon4/s1600-h/IMG_2716.JPG"></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLz5ItIj4558tkK9X1b6fM4URIkhVakjHbY3mrtKK647do0sjDuHYjlgBEH13sSszoFF3J5oKFO0DYxSvEZ5A-ddE-_g2NozqF-YIaqyoVeMUDeLnFr2ZBSfIr-VVGI7_yHzL-ttRsB4Q/s1600-h/IMG_2713.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 200px; FLOAT: left; HEIGHT: 150px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5397473419189831634" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLz5ItIj4558tkK9X1b6fM4URIkhVakjHbY3mrtKK647do0sjDuHYjlgBEH13sSszoFF3J5oKFO0DYxSvEZ5A-ddE-_g2NozqF-YIaqyoVeMUDeLnFr2ZBSfIr-VVGI7_yHzL-ttRsB4Q/s200/IMG_2713.JPG" /></a><br /><br /><div><br /><br /><br /><br /><div></div></div></div></div>Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-54455048131186565332009-10-23T19:43:00.003-06:002009-10-23T19:47:38.730-06:00Grandpa and Lauren: Update 10Both Grandpa and Lauren have been recovering. Grandpa <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Ottley</span> had a doctor appointment this past week and was given a good report. However, that same day he was experiencing extreme discomfort. He woke up that night with pain in his back and arm as well as felt lightheaded and cold sweats. The doctor wasn't sure what the issue may have been but by later in the day it seemed to go away and hasn't happened since. Lately he has been feeling tired and has not had much energy. The doctor feels like he should be able to make a full recovery and also be able to go back to work. It will still be many weeks or months before that happens however.<br /><br />Lauren has been doing great. She has all her bandages off and is back to school. She had a field trip today to the new hospital in <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Riverton</span>. I don't think it was too exciting for her given all the hospitals she has been at this year. The teacher wanted to take the class there so that they would know that it isn't a scary place. As for now, we are just going to be sending photos to Dr. <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Lewin</span> every few weeks and make sure that she is healing well.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com1tag:blogger.com,1999:blog-5569945135033752607.post-28018291077521206242009-10-15T09:54:00.002-06:002009-10-15T10:01:03.428-06:00Grandpa and Lauren: Update 9Grandpa <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Ottley</span> has been resting since coming home from the hospital yesterday. It has been much more comfortable for him at home versus the hospital. He has a lot of medications he has to take daily and is limited in what physical activities he can do. He is glad to be home. His vision in his left eye is still poor from the stroke and we are hoping that it will heal itself and he will be back to 100% again.<br /><br />Lauren returned back home last night and is doing well. The doctor examined her yesterday and felt that everything is looking great. She has a protective cup over her ear that she must wear for 5 days. She will probably be able to go back to <span id="SPELLING_ERROR_1" class="blsp-spelling-error">pre</span>-school tomorrow. This should be the last surgery for this year. She may need additional jaw distraction in the future and will also have some orthodontic work done to help with the jaw as well.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0tag:blogger.com,1999:blog-5569945135033752607.post-68163664142232112292009-10-13T10:39:00.002-06:002009-10-13T10:41:18.072-06:00Grandpa and Lauren: Update 8Looks like Grandpa <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Ottley</span> will be coming home today from the hospital. He will need 24 hour care for the next little while as well as have a therapist visit with him to continue his rehab. <br /><br />Lauren is going to Disneyland today. Mom doesn't want to overdue it with her so we will see how she does.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com2tag:blogger.com,1999:blog-5569945135033752607.post-64053961003455478362009-10-12T22:39:00.002-06:002009-10-12T22:43:46.836-06:00Grandpa and Lauren: Update 7Another good day for both our patients. Grandpa had the remaining of the tubes removed and has been eating well. He does physical activity each day and is getting stronger. He may be discharged as soon as tomorrow. This is amazing considering where he was at a week ago. He will be able to rest at home and they will be provide some therapy sessions at home for him.<br /><br />Lauren is also doing well. She is still a bit gimpy after the surgery but she was able to go to a movie today with mom. Tomorrow they are going to try a day at Disneyland. Friends of ours are down there so it will be good for them to meet up. They will be coming home Wednesday night. She has one more doctor's appointment on Wednesday afternoon in Beverly Hills.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com2tag:blogger.com,1999:blog-5569945135033752607.post-34748322679948567482009-10-11T13:10:00.002-06:002009-10-11T13:16:42.406-06:00Grandpa and Lauren: Update 6Last night I visited with Grandpa <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Ottley</span> and he was doing very well. He is still catching up on sleep and is getting stronger. He has been moved out of the ICU and is on the 4<span id="SPELLING_ERROR_1" class="blsp-spelling-error">th</span> floor rehab unit . He is in room 425. The doctor came in last night and felt he is recovering quickly now and will have most if not all the remaining tubes removed today. He will be doing some physical rehabilitation and depending on how well he responds, he may be released soon. He says his vision is starting to improve and that is a good sign after having the stroke. Visitors are now welcome but the hospital would to limit them to two at a time. <br /><br />Lauren is recovering well after surgery. She was a bit sore yesterday and mostly stayed at the hotel. We hope she rebounds quick enough that she may be able to go to Disneyland for at least one of the days.Brian and Beckyhttp://www.blogger.com/profile/00272040004661378645noreply@blogger.com0