A little clarity and a deep breath

First of all, THANK YOU. Jason and I are absolutely humbled and grateful to our friends and family for your concern, support and prayers. Even if we haven't answered a call, text or message, know we are reading everything and deeply, deeply appreciative.

This past weekend we had a little weekend trip planned to Gruene, TX. If you are not familiar with the Texas Hill Country, it's like walking onto the set of the  movie "Hope Floats".....right down to the  dance hall, ice cold beer and white little lights strung throughout the trees. We debated whether or not we should go considering the uncertainty with Nick, but decided we needed to take some time to ourselves and regroup. I think it was the right call. We did absolutely nothing productive besides eat, drink and talk about the whole situation on our own terms and without worrying about little ears picking up any of the conversation. It's amazing what taking a deep breath and getting some clarity and perspective can do for a person. Oh, and some sleep. An incredibly HUGE thank you to Toni and Wes for watching Nick.

At this point, what we KNOW is that Nick is an active, healthy boy who is simply being evaluated for some possible neurological and/or muscular/skeletal issues. However, it is absolutely possible, he will be found to be clear of any tumors or not require any cranialfacial surgeries. In fact, I'm choosing to operate from this perspective and choose to believe the waiting will be worse than any news we may receive.

Jason and I are calm and optimistic that this will be a scare we won't forget, but nothing more. Feel free to share in our optimism:)

RR

I'm sorry, what?

I don't really know where to start. It's been a hot minute since I last added to this blog, but I thought now, as we embark on this medical journey with Nick, may be a good time to pick it back up. 


So, where to start.....soon after Nick was born, at almost 38 weeks, C-section since he was breech, I noticed his head had a funky shape. When I mentioned it to the docs in the hospital and later at his first well-visits, the doctors assured me this was completely normal and would rectify as he stretched out. Made sense to me...if I were 7lbs, 9oz with a (big) head squished under a rib, I'd probably need some time to unfold myself too. Well, by 5 months there was no progress and his head was also almost always exclusively tilted and rotated. We were sent to physical therapy for treatment of congenital torticollis. For about 6 months, twice per week, I took Nick for his PT sessions and he seemed to improve. We were also having some cardiac issues identified and frankly his funky head shape took a back seat.

Over the past few years I've always been aware of the differences I noticed in his skull but this past year, Nick began to tilt his head regularly to run, to see items right in front of him and we were constantly on him to "keep your head up". Then, at the end of the year, he began to fall more or complain that his head hurt. Others were noticing too. At the end of last year we had an Xray taken of his spine which led us to a pediatric orthopedic surgeon this week. I had been preparing myself for the reality that Nick would need a surgery on his neck called a SCM release which would release the tight muscles in his neck making him tilt so often. 


As I sat with my little notepad taking copious notes and listening intently, I wrote down "posterior fossa tumor". As I'm writing it out, I stop, look up at the confident and friendly doctor and say "I'm sorry, what? Did you just say tumor?"

Things get a little fuzzy from here on out. Like I was in some strange fog operating on a very automatic response system. 

Dr. Brock: "Ok, so we will get you on the urgent MRI list at Texas Children's. You'll want to do it there since he'll need to be under full sedation."

Me - processing the words, writing them down, looking at Nick...

Dr. Brock: "Also, you will need to see an opthomologist as soon as possible."

Me - writing down something about occular torticollis, muscles, tumors. There's that damn word again.

Dr. Brock: "Ok, and definitely with Dr. Teichgraeber. "Ty" is the best pediatric cranial/facial plastics guy around. I'll call him now and let his office know you will be calling. Regardless, he'll be on Nick's treatment team.

Me - writing down "Dr. Ty Graber"...Dr. Burke correcting me that his first name is John. Me, wondering who the hell is John and why do we need to see a plastic surgeon? And, why the F does my son need a "treatment team"?!!

Then, some conversation about craniosynostosis, next steps, be careful about reading blogs (ha! ha!) and the next thing I knew I was driving in a literal circle around the Med Center wondering what just happened. My sister called at that moment and I calmly told her. Then Jason called. Then I found the highway and headed home.

That evening I went to my Junior League meeting as if nothing had happened. I'm sure I wasn't helpful or engaged, but the other option, staying home and marinating in the words of the day seemed hideous. But, as reality has a habit of doing....it started to set in...and by 11:30 I was calling my mother in Costa Rica, my brother in DC and a dear friend in Dubai (yes, I realize my phone bill will be a mortgage payment this month). By 3:00a.m. I started crying...and didn't stop until sometime after noon. Literally.

I didn't sleep and I knew I had to force myself into action because the words tumors and cranial remolding were crashing together in my brain ferociously. Our pediatrician and friend helped us get into an opthomologist that afternoon, and until then I did the only thing I could think to do....I went to my Bible study. What I WANTED to do was hide, but I knew that wasn't helpful, so I went to my sweet small group and just poured it all out and let God do what he does. These ladies prayed with me, over me, around me. I looked and felt like I was coming undone but these ladies lifted me up, fed me and pulled me together enough to send me on to the next appt. that afternoon.  

At the end of a 3 hour long appointment, Dr. Miller informed me that he did not see evidence of spinal fluid pressure behind Nick's eyes. Realizing that I clearly had no idea what that meant, he said, "This is very good news." I asked what would had happened if he had found that pressure and he just said, "I'd be sending you directly down to Children's ER for immediate addmittal." Well, good thing I didn't have my bearings enough that day to ask why the heck we were there to begin with!

As we walked out of the doctor's office, the sky started to clear. I would realize later watching the news that the weather that morning in Houston was so bad, the storms had made national news. As I looked at the sky, put Nick in the car, thanked Toni for my so-badly needed coffee, I finally took a breath. I called Jason. This was just the beginning, but for today, the news was positive. 

Next steps are the MRI, of course, and the appointment with the pedi cranial/facial plastic surgeon on February 7. We hope to have the MRI by then, but know that Texas Children's is worth the wait.

I will be using this blog to post information. As a much wiser and in the know friend/cousin advised me, regardless of the end result, this will be an experience we won't forget although with details can get lost and the emotions need somewhere to go. 

One last thing, our friends and families are simply amazing. 

RR