It's all in the details.

I know that it is early, but I am glad that certain details are coming together.  We are scheduled now to check in at 10:00 a.m. on June 25 for the MRI at All Children's.  After the test, we can go downstairs to grab lunch in the cafeteria before going to meet Dr. Tuite at 1:30 p.m. on the same floor as the MRI.  The surgery is scheduled for June 26, but I do not have the exact time.  Letters should be arriving in the mail soon.
I called the Ronald McDonald House, and we have to call 30 days prior to get on a wait list.  The morning that we arrive, we will need to call to see which house has a room available.
I have been hearing about other parents who have used Dr. Tuite, and they seem to be happy.  Rumors are that he is one of the best.  It is still a little unsettling that we will first meet the man the day before he will do surgery, but Dr. Ricalde will be on the team and knows Simon well enough.

We have dates!

Okay, June 25 (Monday) and June 26 (Tuesday) will be our dates.  The hospital is scheduled for June 26, and the MRI and neurosurgeon visit are still being arranged for June 25.  I imagine that we will head home June 28 (Thursday) or June 29 (Friday).  I will be getting information about the Ronald McDonald House when I receive the paperwork with the dates officially in writing.  Simon will have 3 weeks before the surgery to be kept away from germ-infested kids and 5-1/2 solid weeks at home after the surgery before returning to karate daycare and then school. 
I have a couple of dominant emotions now.  For one, I feel like we are "cheating" on Dr. Gegg (one of the neurosurgeons).  The last time we were at Arnold Palmer to see Simon's audiologist, we ran into Dr. Gegg in the atrium.  He stared at Simon for a while and asked how he was doing.  I did not mention that we were going ahead with surgery plans without him.  It is not like we don't like him or anything; far from it!  The team split up, and it just makes logical sense to go with the familiar surgeon who will be more involved this time around.
Second, I am amazed at how good I have been doing at pushing it all inside, but I do find myself choked up when I have to explain it to someone.  Not very many people around us know what is happening this summer, and I am not sure how many will know.  I feel responsible for what others feel when I tell them, and I just do not have the energy to hold others up right now.

Still haven't heard...

I have not heard back since saying that we can't do surgery at the end of April. I wonder if that is a good thing or a bad thing? Part of me wishes that our lives were flexible enough to get this done and over with, but another part of me does not. I do have to say that getting it all together was way easier when he was an infant. I was home on maternity leave and had so much more time to make phone calls and fill out applications and so forth. Now, I have to squeeze everything into minutes between meetings or classes or while on the road. So, lots of important things are not getting done. It will all come together, I am sure; but I will not have much time to nurse my baby through recovery and then catch up on rest myself before school cranks back up. Is it bad that I am already dreaming about taking lots of sick days in the fall?

I wanted to be a doctor when I grew up.

As a kid, I had an intense fascination with anatomy and the idea of being a doctor. I had a medical dictionary and would flip through it, and I dressed up in a lab coat and stethoscope on career day. More specifically, I dreamed of being a surgeon. As time went on and I gained academic experience, I started to get a better idea of what I enjoyed studying, and science was just not it for me. I grew up in a private school with science teachers who did not even have science degrees or a chemistry lab, which put me at a great disadvantage. I graduated with a hatred of chemistry and decided to avoid it all possible costs. So, I figured that I would get a Ph.D. in math or English, granting me the doctor title anyhow and landing me in a role as a professor. I picked math, because the student papers would be more tolerable when it came time for grading. Plus, the science credit could be covered with physics, which is basically applied math. I greatly enjoyed my math studies until graduate school, and then I decided to stop with the Master's degree after barely getting together the drive to finish the two years. (The graduate experience is for a whole 'nother blog.) Little did I know that my fascination with the medical field would get rekindled after the birth of my child, two years after graduation.
The cranio journey has been an incredible learning experience. I know so many things about the human body that I would have never bothered to learn before, and I am so thankful for the experience of learning. In this day of information, I have been able to put together an extensive file of everything done to my son, so that he may know when he grows up. Admittedly, I jump at the chance of gathering surgical reports, operative pictures, and so forth. Then, I read them over and over and try to learn the language of the professionals. I relish being an informed parent at the appointments, and I am extremely happy that the doctors are willing to discuss things with me in a thorough enough manner. I am the student; they are the teachers.
Just today, I picked up the surgeon notes from both operations and began to read them before we even left the hospital. I need to do some dictionary work before I can fully picture what they are saying, but I already have an awe and respect for just how skilled these scientists/artisans are. I am also incredibly thankful for their skill, as their knowledge and wisdom and steady hands carried them through some intense hours with my son. These people know my son intimately, as no other can know him. I am not sure what the word is for someone who has seen your brain and ensured its health and safety, but how much more intimate can you get? His life and future were in their hands, and they ensured his well-being.
I am eternally grateful for that, and I now know that I never could stand in their shoes. First, a reality check as an adult helped me to realize that being blind in one eye just would not "cut it" in such a profession. (Yes, the pun was intended. haha ) Then, I have enough emotional maturity to realize that I do not have what it takes to handle such pressure. I leave it to the professionals and just dare to dream of someday contributing to the bank of knowledge in some way. I have contemplated a return to school to study biomathematics and make my mark in research, but we shall see. For now, I have to stay where I am so that I can have the time required to see my son through these difficult years. Some day, though, I have that dream.

Scatterbrain

We had an appointment with the audiologist at 9 a.m. today but had to arrive at 8:30 a.m. for them to update records and such. They recently moved to a new building and tons of construction is being done in the area, meaning we needed to plan on early arrival anyhow. I awoke around 3:oo a.m. and never fully went back to sleep before getting up just after 5 a.m. and getting ready. I thought everything was going smoothly when we got out the door on time and faced normal traffic conditions on the 1.5 hour drive up there. We found the place after a little driving and a phone call, got parked, walked in, and started to check in. I had to go back outside to put a parking voucher in our windshield, and that is when I noticed something totally vital to this appointment. Simon was not wearing his hearing aids!!! The appointment today was for a hearing aid check, and he was missing the very thing needed. I could not believe that I had made this sort of mistake! Then again, I could believe it with the week I have been having. They were very kind and scheduled a new appointment, and I left with the conviction that I will not make that mistake again.
The drive was not for naught, though. We walked over to Arnold Palmer Hospital to pick up the surgeon reports. At first, I was told that the office was closed today and that it would be $1 per page. (The lady who usually takes care of this was out.) The lady who was there had me fill out a request and logged in so that I could find out what exactly was available for request. We waited a few minutes, and she handed me the reports from the two cranio surgeries. They were free of charge! I don't think she realizes just how much better she made my day at that point.
Simon wanted to go play in the castle and pirate ship that the hospital has in the main atrium area, so we spent some time there. While he played, I read the reports. After some play time, we dropped off pop tabs at the Ronald McDonald House and chatted with them some. We stop in often enough that they are starting to recognize us. We then went to Target for some needed items and ate at McDonald's, which has seats around a really nice fish aquarium. All in all, Simon had a good day.
I, on the other hand, am having a hard time getting used to my mind faltering so often. I went through this when I was pregnant, but I am not pregnant now. With Simon's two previous surgeries and other events involving extreme stress, I have not felt like this. I suffer from exhaustion that weakens me to the core, and I would lose my head if it were not attached. All of this just needs to get done, and we need to be on the other side with flying colors. I want to know what it feels like to have the "normal" worries of a parent, which I doubt are so debilitating.

No Set Date

The neurosurgery office thought we might be able to do the surgery in mid-June, but apparently the craniofacial office is saying May. I had to write and say that we absolutely cannot do it that early. The first week of May is my final exam and final grade week; the rest of May I am in summer term. Summer term means, if I don't work, then I don't get paid. Hubby only has 2 sick days left, and Simon simply cannot end up missing the remainder of the school year. Things are hard enough financially without that sort of wrench thrown in. So, I am waiting to hear back. I am hoping that the date works out as needed so that we don't have to think about missing work and Simon won't miss school. These "little" things really add to the stress of it all. My digestive system has reached the twisted and feels-like-a-long-running-stomach-virus stage, and I was pulled over this week for erratic driving when I was not under the influence. I am just so stressed that my face is broken out like a teenager's and my eyesight keeps fading out. (Seriously, the eyesight thing has me worried. I am already legally blind in my right eye due to my own cranio, but now my vision has been going black in my left eye. It seems like it is more my brain and not so much my eye.)