Wednesday, June 29, 2011

Doctors have a concensus - finally

After seeing four different specialists at four different hospitals I think we finally have a plan of action for Fisher's nose injuries. All of the surgeons believe that Fisher's nose needs more work but the discrepancy has been what to do and when to do it. We went to Vanderbilt Children's Hospital today and met with an Otolaryngoly Surgeon and his plan matched up with the plan of the pediatric ENT we saw at East Tennessee Children's hospital for the most part and it is one that I feel comfortable with.
We will do nothing now as Fisher seems to be breathing ok and he is definitely growing and active as can be! We will take Fisher to the pediatric ENT at East Tennessee Children's Hospital 4 times a year to monitor his nose and then we will see the surgeon at Vanderbilt once a year. The hope is we can delay nose reconstruction surgery until he is closer to puberty so it can be his last operation. If we do nose reconstruction now we would have to redo it at least one time and possibly several times as he grows - so the longer we can wait the better.
If Fisher gets self conscious about his nose at any point then we can reassess the situation.
I think the highlight of our visit is when the doctor said "I had a similar case I did nasal reconstruction on recently." That stopped me in my tracks - we have never heard of anything similar from any of the doctors and hospitals Fisher has been to. The child the doctor was referring to was older than Fisher and was in some kind of accident that crushed his nose. Poor kid! But just hearing that this doctor has dealt with similar issues was reassuring.
In many ways, I am relieved. I am relieved to finally know that we have a plan and that many of the doctors are in agreement. However, I am not "happy." I hate having surgery looming over us - even if it is several years down the road. And I hate how I am paranoid that his breathing is getting worse or will get worse and I won't realize it. But I am hopeful that since we have a plan I can kind of forget about his nose for a while and just enjoy time with my amazing, crazy, wild, fun loving Super Fish!

Tuesday, June 28, 2011

I never made a baby book

I never made Fisher a baby book. And I don't think I ever will. The first four months of his life are such a blur of worry, pain, and fright that I don't think I can sit down and pull out the "good" memories to put in a book. Not saying that there aren't good memories, there are lots of good memories but unfortunetly I kind of ignore the good ones because when I think of those I am reminded of the bad ones as well.

It is hard for me to believe that I am 22 months out from his birth and I can still break down into tears when I look at his baby pictures. The pain is still so raw even after 22 months of time passing, counseling, and anxiety medication. It still hurts and in some ways I think it hurts more than it did then. I was in survival mode then. I just got through each day, knowing that Fisher was depending on me. And I also think that in many ways I "survived" by avoiding my feelings at the time - my frustration, anger, resentment - were all masked by the day to day craziness of caring for Fisher. I find now when I have to deal with Fisher's ongoing nose problems I can't avoid those feelings. We are going to a new pediatric ENT tomorrow at Vanderbilt Children's Hospital to get a third opinion. The first two opinions from Cincinatti Children's Hospital and then East Tennessee Children's hospital were vastly different (one recommended surgery now and the other recommended waiting until he was around puberty) and I feel like we need a third opinion to hopefully give us direction. So tomorrow I have to go to yet another doctor and explain what happened. I have to take pictures. The pictures that I don't show anyone because they break my heart. I have take those pictures and show a doctor, explain what happened and what didn't happen, and then hear another doctor tell me how unusual this is and how they have never seen anything like it and aren't sure of what to do.
Or maybe it will be different? But the last four times we have seen specialists I had my hopes up only to hear the same thing - unusual and not sure what to do. So I don't really have my hopes up this time. I am usually an optomist. I try to look on the bright side, because I don't want anyone to ever thing I am not grateful for our amazing son. But for some reason tonight looking through pictures to decide what pictures to take to the new doctor I am not feeling very optomistic. I am sad. I am hurt. I am heartbroken that 22 months out we are dealing with injuries that could have and should have been prevented.

Sunday, June 5, 2011

Not sure where I am at

It has been much too long since I had a Mamavation post. A lot has been going - travel, work, camping, canoeing, etc on so yes, I have the "I am so busy" excuse. But it is more than that. I get tired of posting the same stuff every week - I work out, I eat well (about 80% of the time), and I don't lose weight. I try to act like it doesn't bother me, but it does. I do see changes in my body - I definitely am getting stronger (been going to Body Pump classes three times a week. Love them!) and my endurance is getting better and better - I am running 3ish miles at a time now. Though I recognize and love these changes - I still don't think it is "fair" that I don't have changes to the scale - and I am not being impatient, this has been going on for almost a year now.
I mentioned this to my new primary care doctor and I assumed I would get the same answer I have been told in the past - it is my thyroid issues, it makes things harder, I have to work at losing weight harder than the average person. However, instead of that he explored some other possible explanations to my stalled weight (which all indirectly involve my thyroid). So the jury is out on that - I see a specialist tomorrow to see what they have to say.
So I guess this is where I am at - I LOVE working out. I really do, I am seriously addicted and I am not going to stop. I also like eating healthy. It makes me feel good. However, I don't like not seeing the scale go down...ever. And I try to tell myself it doesn't matter (even my doctor told me - you are HEALTHY, that is the number one priority) but it still gets to me. So that is why I haven't been posting too much. I love reading and supporting all of you awesome women with your healthy lifestyles - but I sometimes feel like I am doing something "wrong" or something since I don't have changes in my weight. :(