I originally started this blog almost seven years ago to help keep out of town family and friends updated on our son Miles and post pictures and stories about life with our new baby. But in the back of my mind, I also wanted a place where I could log our journey with Microtia/Atresia, Miles' birth defect and the surgeries we had planned for when he turned three. Life has changed quite a bit since then and all those so called plans have dissolved and been replaced with a culmination of years of hard work and research coming together for the first time this Thursday in San Antonio. This is by no means saying that our journey begins here. We have had seven years taking one year at a time to figure out what is best for our son and our family and obviously plans have changed.
When Miles was first born our thoughts were all about making him whole.....correcting what needed to be corrected and how soon we could accomplish that. It didn't take long to realize that he was whole but back when we were told that we needed to wait until he was at least three, we knew there was nothing we could do to make those painfully long years :) go any faster and were told we should just sit back and figure out parenthood.....so we did!! Along the way, we learned more about Microtia and Atresia and found some really great doctors and friends that helped us out. I have spent countless hours scouring the internet for any information that would feed the void of my knowledge on his condition and connected with those who had already paved the paths I was trying to map out.
In those three years, life kept us busy. We learned all about the challenges with a newborn and then a toddler. We took on diapers, solids, crawling, walking, teething, night terrors, assertive independence, speech classes and preschool. We got to know our happy, highly emotional, sensitive, compassionate, impulsive, excitable, stubborn, and smart, little boy. He taught us about patience in more ways than one, a trait we both still struggle with. He also taught us about strength and how to overcome obstacles. In one very short year Miles proved to us that he was very special, but not in the ways we originally thought. His defect became less and less of a "defect" and started to disappear into the background of his larger than life personality.
During Miles' first year and a half, I lost my dad and we made the move to Florida. This was quite a change from the long winters of Colorado. We were now able to be outside ten months of the year and that was a great place for a very active little boy to be. Before we left Colorado, we found a wonderful Otologist that worked with us until we moved and helped us get Miles' first hearing aids, which have had their own set of challenges as well.
In those first few years, we learned about Medpor, a polyethylene implant that is used to replace the missing cartilage in Microtia and even met with Dr. Reinisch a Californian, Medpor surgeon. Our other option was to use rib cartilage to form the ears, but that involved an invasive chest procedure, took many more surgeries and couldn't be done until the child was at least six......which was light years away for us. Dr. Reinisch met with Miles while he was passing through Florida and made a stop at a former patients house that we had befriended through our online support group. He was doing a follow-up with that little boy who was also named Miles and the family invited over several local Microtia families to meet their doctor with his permission. Our Miles was just an infant at the time and obviously there was nothing to be done then, but we left feeling like we had made our decision and met the doctor that we would eventually use.
As it seems to be, life picked up and took off again. Time went on and we saw some advances in technology in the field of Microtia and also learned about different Atresia surgeons. Around Miles fifth birthday, they developed a combined procedure where Dr. Reinisch and a well known Atresia surgeon worked together in a single surgery to create ears and ear canals. The first few cases were challenging and not without setbacks, but over the last few years things have improved considerably as well as adding Dr. Reinisch's trainee as another qualified doctor in this field making a successful name for herself and managing her own quickly growing client base.
So if we got to five years old and were still considering the changing options, how did we manage to pass up three years old and not do anything? Although that is a good question, I don't know if I have as good of an answer. With everything life changing, I think timing is everything and maybe the timing just wasn't right, or maybe somehow we knew that this wasn't the right decision and if we just held out the right one would present itself..........or maybe we were just scared! In any case time passed and we learned more about the type of child we were raising. Miles has never been a very passive child. He was usually the kid you were scraping off the walls at play dates and cleaning up after when "whatever" just happened to break...again! He was also the kid you apologized for over and over again because of his ADHD behavior that led the parents of the calm children to turn and run the other direction when they saw you coming.
With Miles being bilateral, both ears affected, we had to take into consideration whatever we did we would have to do twice. Being a part of the online support group we got to live vicariously through other's experiences and learn from those that went before us. We did determine on our own that with the Medpor procedure comes a greater risk of exposure and even breakage. Miles was an extremely active toddler and hasn't really slowed down much as of late, so this was a genuine concern for us. We also found that this is exponentializied by adding the Atresia repair; kids that aren't candidates for that surgery seem to fair better with the Medpor than those that have the surgery. Those that do have Atresia repair also seem to have a lot more infections and stenosis or closing of the canal and although this is not eliminated by using the rib grafting method, it is our opinion that it seems to be lessened. So after many years of searching for the right answers for us, we came to the conclusion that the best thing for our son was rib grafting. Now I am not rushing out to patent that decision and I'm sure there will be many moments of second guessing along the way, but after many years of indecisiveness, we feel as confident with this choice as I think we are going to be. This is what feels right for our family.
The best surgeon we determined for the rib grafting procedure was Dr. Brent, another CA doctor and an internationally known specialist at this technique. We had known several families that had used him and were very pleased with the results. The real problem with rib grafting is that it is essentially an art and not every surgeon is gifted enough to be able to create realistic results. Dr. Brent was one of the few and where we had landed with our research. I had even called the office to try and get some more info on starting surgeries for our son. In the fall of 2012 the rumor mill started churning that Dr. Brent would be retiring without a replacement and true to those rumors by the end of the year, that was a reality.
Even though we weren't back to step one, we had taken a dramatic loss in our planning and had to go back to the research stage. I turned to our two back ups and somewhere along the way met a great family that had used one of them. We also found some negative comments about the other and felt a bigger push in one direction. Simultaneously, my husband was given the option of relocating to Houston,Texas, by his company, which you should know was not really an option unless you consider losing your job the other option. But hidden beneath this life altering non-decision was a well disguised blessing. For us to live in Florida meant we had to travel by plane, all four of us to San Antonio, Texas to have Miles surgeries completed by a doctor named Arturo Bonilla and remain in Texas for over two weeks to complete the follow-up required 14 days after surgery. But living in Texas meant we could go home after five days and return for the follow up only two and a half hours away. I won't go into the financial challenges this whole experience will create, but living in the state Miles will have surgery in alleviates a good few as well.
So seven and a half years later, brings us to what is undoubtedly not the final chapter, but definitely the beginning of one. The time is now apparently right. We have spent years figuring out what we thought would be the right thing to do, with doing nothing always being one of those haunting options, and here we are more unsure of our choices than ever, going forward with blind confidence, filled with anxiety and spotty excitement, ready to either cry or implode at the drop of a hat and my son sits next to me on the bed, lost in his fictional world of an Iron Man video game, as naive and unknowing of the decisions we have been making for him since the moment he entered this world. I can only hope that I can be that pillar of strength for him that he has been for me through all the difficulties in my life and that no decisions we make for him damages that faith and trust he has built in us as his protectors, his parents......of course until he is at least a teenager:) Our children are among the most precious jewels we have in our lives and even if that realization came by surprise to us, they grow more valuable as time goes on. The everyday decisions we make for them can just as easily change their lives, but it's the big ones that tug on your heart strings the most and my very special baby boy is on a journey in life he didn't ask to take, but was gifted for whatever reason. So it is our job to try to guide him and allow him to grow and gain strength from this experience as we do and be there to hold his hand, wipe his tears, see his smiles, hear his laughter and love and support him for as long as he will let us (and then some).
Miles has his first surgery in San Antonio this Thursday at 8am. Please keep him in your thoughts and/or prayers. It is a community of family, friends and strangers without boundaries that have supported us this far and whom we will lean on as we start this next part of the journey together. I will try to document as much as I can here on the blog, but it may take time due to travel and recovery to get pictures posted. I will find the time as often as possible though to make written updates as they come in.
For us and for Miles, this has been a very long and somehow simultaneously fast road to get where we are right now and although we are standing at the threshold of the unknown, we are lucky enough to be a part of this with him and take the next steps together. We love you baby boy!!!
.jpg)
