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.

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.  

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.

Photos

 

It’s going to be a big year

 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.

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.   

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.

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. 😊

Another Surgery

Well 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.

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.

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.

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.

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.

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.

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

and all her friends are very supportive of her.

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.

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.

So 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.

Wow, has it almost been 2 years?

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.

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.

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.

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.

Home Sweet Home

We 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.

Surgery Update- Day 2

Lauren 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 anesthesia. 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.

Surgery Update

Lauren 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.