Redesign and restructuring of a mountain range...

I have been conversing back and forth with Dr. Fearon through email and thus far, I have been incredibly impressed by his demeanor and candor. He’s been very willing and open to list possible other diagnosis for Nathan other than just cranio. One of the other diagnoses he’s looking at would require us to get an MRI of Nathan’s brain. Nathan has had CT imaging done of his brain, but not an MRI. ( A CT scan, looks at the bone structure. A MRI will look at the brain tissue and structure. )

I met with Dr. Willert yesterday, ( Thursday, February 23 ), to discuss getting a referral for Dr. Fearon. I had also called Dr. Fearon’s office yesterday to find out when was the first available appointment he had to meet with us for a consult visit. I was told the absolute earliest would be either March 13 or 14. Either way, we were still looking at two weeks away. I was very comfortable with that time line, because it gave us plenty of time to book airfare and other travel arrangements that would need to be made.

Then, like I have grown accustomed too, everything changed. My appointment with Dr. Willert was at 1 pm and I was walking out of the Naval Hospital at 2:30 pm. Still amazed, she continuously asked what else she could do for us and in what other ways could she help. I have a direct phone number to my pediatrician’s nurse and I can get in and see her in 24 hours. I have a pediatrician who truly goes beyond the cliché of treating her patients as if they were her own children. She loves and adores Nathan the way in which we do. The way his Mimi and Gampa do. I can’t tell her what else she could do for us, because I truly don’t feel or believe such a thing exists!

I left Dr. Willert’s office, as I do every time, with a plan of what to do next. Dr. Willert wanted to talk to Dr. Fearon’s office to become more familiar with him. I, on the other hand, was supposed to wait until Friday, ( February 24 ), at noon and call Dr. Fearon’s office to schedule a consult visit. By the time I had made the commute back to my house from the Naval Hospital, Dr. Willert called me back and informed me she had spoken with Cindy, Dr. Fearon’s nurse. She was incredibly impressed with Cindy’s knowledge and definitely agreed we were heading in the right direction. Dr. Willert’s comfort and confidence in Dr. Fearon, was of the upmost importance to me. Dr. Fearon, might see Nathan for a couple of hours, maybe a couple of visits, but Dr. Willert will be seeing Nathan for years.

I hung up the phone with Dr. Willert and Cindy, Dr. Fearon’s nurse, called me. She informed me that Dr. Fearon would be in surgery on Friday, March 1^st. He had 2 CVR’s, ( the type of surgery Nathan will most likely need ), scheduled, but he was completely willing to meet with us between those 2 surgeries, if we were interested. I literally jumped for joy and trust me, see a 29.5 week pregnant woman jumping for joy is not a sight, I would encourage. We would need to get a MRI scheduled for Nathan, but if it was something that couldn’t be done locally we could do it in Dallas, Friday morning before we met with Dr. Fearon. Our phenomenal ped’s office was able to get us a MRI locally, this coming Monday, ( February 27 ), at noon.

I sit here a little over 12 hours after everything has happened and I am amazed at God’s workmanship. How He can orchestrate things and literally move mountains for our family. Yesterday afternoon showed me more than ever that God’s got this. He’s in control of both the big and little things and I truly don’t know if I’ve ever felt at more peace over knowing that we’re not alone in this. Yes, things change in an instant, but for right now, for this moment, I’m in complete peace knowing my heavenly father has brought us this far and He’s not through with us just yet.

It’s 6 am on Friday, February 24. Nathan has his ophthalmology visit today at 10 am. We literally take things one day, sometimes even one hour, at a time. We’re going to get through this. I know it’s not going to be easy and it has proven itself to not be, thus far, but we’re going to get through this!

'And if our God is for us,

Then who could ever stop us,

And if our God is with us,

Then what could stand against?'

The Tortoise got a second wind…

When I last update everyone, we were planning on heading to Jacksonville next week to meet with a pediatric ophthalmologist. Today, our original pediatric ophthalmologist from, Daphne, Alabama informed us they had a cancelation on Friday and we could meet with them Friday at 10 am if we were interested. Interested!?!? Yes, we’re interested! Our original appointment with them wasn’t until March 30 and now we’re meeting with them Friday, February 24!

I had also been playing phone tag with our pediatrician’s nurse, Adrienne. Adrienne is just as wonderful as Dr. Willert and always finds ways to squeeze us in Dr. Willert’s schedule. She’ll block of more time than a traditional appointment requires, just to be sure we have enough time one on one. She’s awesome! Adrienne was able to literally squeeze us in with Dr. Willert tomorrow at 1 pm! Adrienne, Dr. Willert and I will be meeting to discuss getting a referral with Dr. Fearon and where we want to go from here.

Through all of this, it amazes me how quickly and instantly everything can change. From the call from the pediatric ophthalmologist, to speaking with Adrienne, everything took place in an hour’s time. That Tortoise must have gotten a second wind. (:

Tortoise and Hare...

A little background, before I share our progress. Dr. Fearon is a craniofacial surgeon out of, Dallas, Texas. He has performed more craniofacial surgeries, than anyone else in the country. He has operated on a friend of mine’s son and goes beyond being ‘the best of the best.’ Dr. Fearon's Web Site

Last Tuesday, I put an information packet together to send to Dr. Fearon. I also emailed him, to give him a brief background on Nathan and to let him know he should be getting a copy of Nathan’s CT scan’s and more thorough detailed information on him. Dr. Fearon does what I have seen no other doctor do. He highly encourages people to email him, ask questions, send pictures or scans and he will give an opinion as to what direction to go. He is incredibly well known in the cranio community for being someone who is willing to listen and help in any way he can.

The negative of having technology at our fingertips, is that it sometimes makes things too accessible. I checked my phone what seemed like every 30 minutes, Wednesday through Friday. In reality, I was probably checking ever couple of hours or so. Friday evening, I relented to the fact that it was a holiday weekend and would resume my ‘waiting by the phone’ scenario bright and early Tuesday morning. Sunday morning, my phone chirped to notify me I had a new email. Thinking it was an ad or spam, I looked at my email and suddenly my heart felt like it was going to beat out of my chest. My hands were shaking and I could barely think. Brian was out fishing with some friends, so it was just Nathan and I at home. It was the email I had been sitting on pins and needles waiting for. Here it was and I couldn’t even open it.

I called my parents who were on their way back from a well-deserved mini vacay in, Charleston, South Carolina. Through my unsteady voice I muttered ‘Fearon emailed me.’ I put ‘Buzz,’ ( i.e. Toy Story ), on the TV and went in our bedroom to talk with my parents. ‘Buzz’ would guarantee me at least 45 minutes of time to talk with my parents and go over what Fearon said.

The email was unbelievably informative. We were given more information and direction as to what to do with Nathan’s condition in a 10 minute email, than any doctor in an exam room had been willing to do or give. He listed out three possible scenarios that we could be looking at for Nathan, but definitely agreed that Nathan did need to have an eye exam done.

We were looking at Nathan having an eye exam done at the Naval Hospital on March 13. Our pediatrician, Dr. Willert, really wasn’t too thrilled with that idea for a couple of reasons. One being, how long we had to wait for the appointment. Two being the appointment was with a general ophthalmologist and not a pediatric ophthalmologist. We had a consecutive appointment with a pediatric ophthalmologist in Daphne, Alabama on March 30. Still our pediatrician wasn’t thrilled, but it was all we could do. Or so we thought. I was able to get in contact with a pediatric ophthalmologist in, Jacksonville. I was able to quickly brief him on Nathan’s condition and what it is we were looking for in our visit with him. His office was nothing short of amazing and was able to get us in, next Tuesday, February 28!!!

Hopefully, we will be able to get a referral from Dr. Willert’s office this week and we will be having the eye exam performed next week. From there, we will take the results from the ophthalmologist and contact Dr. Fearon. We want to at least get a consult with him, so that he can physically exam Nathan and give us his recommendations as to what he thinks we should do.

Progress is being made. Slow and steady progress, but after all it was the Tortoise who won the race by being slow and steady. 

That's not what he said...

It seems like it’s been 2 months, but truly it has only been slightly over a week since we met with Dr. Blount and Dr. Grant at UAB. Dr. Willert, our phenomenal pediatrician, was on vacay last week, ( She deserves 6 months of vacay after everything she has done for us! ), so we haven’t had a chance to meet with her and go over our appointment with Dr. Blount and Dr. Grant. I expressed my concerns about the meeting with Dr. Blount and Dr. Grant and how I wasn’t exactly thrilled or impressed with how the appointment went. I asked if she had received their report from the appointment yet and she said she had. She started dissecting Dr. Grant’s report line by line and sure as his sucker punch hit over a week ago, he hit me again. Only this time it was from over 300 miles away.

To put it simply, what Dr. Grant stated in his notes, was night and day different than what he said in the exam room. I didn’t have to state that I wanted another opinion. I didn’t have to state that I wanted to haul my 2 and a half year old son, my 28 week pregnant self, my exhausted husband and my voice of logic and reasoning mother all the way across the country in order to receive this second opinion. I didn’t have to say that I was beyond displeased with what Dr. Grant placed in his notes and I didn’t have to state that I once again had more questions than answers for the hundredth time in the past 2 months. I didn’t have to state these things, because Dr. Willert already knew them and agreed with them wholly.

Before today our plan was to wait and let Nathan meet with an ophthalmologist, have an eye exam done and see if there was any increased cranial pressure present. Now we are actively pursuing other doctor’s opinions on Nathan’s craniosynostosis, as well as actively pursuing seeing the ophthalmologist.

It is the never ending game of hurry up and wait.