You've got a good-lookin' kid

Today was our appointment with a pediatric craniofacial plastic surgeon. Bet you didn't even know they existed, right? Honestly, I had very little insight into why we were meeting with him. In fact, when the nurse came in and asked why we were there I just said "Here's his prior records (handing over a file and pictures) and he is under evaluation for a tumor." At some point in the consult, Dr. T looked at us and told us we had a "good lookin' kid". Little did we know this is a pretty significant comment for a pediatric craniofacial plastic surgeon to make. For real, you are in the waiting room, trying to assess how your kid's head looks compared to the next patient. It's a sick parental "Toddlers with Tiaras" cranial edition.

Jason was able to come with me on this appointment. I realize that he is who keeps the lights on, the roof over our head and the food on our table, so I've never really felt alone or lacking when he was unable to make appointments before. I was there for all Nick's physical therapy when he was a baby. I was there when he had hours of testing for the pulmonary valve stenosis. I was there for the orthopedic surgeon and the ophthalmologist. I felt he was doing his job and I was doing mine.

Today was different. Today we had words like "tumor", "surgery"and  "surgical cranial reshaping" bumping around in our heads. I gave Jay the out because I know he's busier than a hooker on nickel night, but I also knew that somewhere in the last two weeks weeks we went from being just a family, just two parents raising a kid to a TEAM.  Nothing about our son will come through us or out of us without our TEAM approval.

I know, you want me to get to the point... the point seems good. Dr. T thought that, yes, Nick has some cranial abnormalities but very consistent with the torticollis ( muscular neck issues). In fact, he said, had we not done 6 months of 2x week physical therapy, Nick would very likely have a permanent tilt in his neck. While Dr. T could not rule out a tumor, (he agreed with next week's MRI to determine what the mass is), his demeanor and willingness to answer my 800 questions was encouraging. The student in me found some ridiculous amusement when he told me I was asking good questions. Nerd.

Back to Jason. At one point I realized he reached his hand over to me. This is a big deal. It's deliberate. It's saying BREATHE.... And I've never appreciated and loved another person so much. It felt so great to lean into the only other person on the planet feeling what I was feeling at that moment.

We walked out to the car, hugged for a long time and decided next week will be the Superbowl of big wins with the MRI.

It's not over, but the absence of bad news is my new good news. Your energy and prayers are healing Nick and carrying us. Thank you.

Rain, inside? That could be a problem

Disclaimer: This post has little to do with Nick. We are still waiting on his MRI.

With that said.....

So, I'm folding clothes in my bedroom yesterday and talking on the phone with a friend (in full housewife disclosure, I was also likely watching a DVR'd soap), when I notice it's raining - not just outside - but INSIDE my bedroom wall.

Well, shit. I hung up on my friend (sorry, Dis), and just stared at it for a sec. I thought about calling Jason at work but since he had a tough week last week, his son is under evaluation for a bunch of head stuff and he has to prepare for a big meeting in California the next day, thought, well....maybe I can figure out why my bedroom wall is crying. Sadly, I also briefly considered this may be the next Amityville Horror house. But it was water, not blood, so I was on the safe side. Yay!

Next step, I call our builder. It's been five years, but thankfully they not only answered, Village Builders sent a great guy named Larry, right over. By the time Larry showed up, I was already calculating the cost of rebuilding our house, paying for Nick's bills and looking for the swarm of locusts.

Larry's a dad. He has a daughter my age that lives in our neighborhood. After Larry made an assessment of the problem, and I realized I didn't have 1 flashlight with working batteries (REALLY? So disappointed in my hurricane preparedness.), he invited me to go outside and stare up at my roof. He asked me if we had done our yearly roof maintenance check. Huh? He asked me when was the last time my husband was on the roof. Again, really? Apparently the problem was the "pokey things" (not their technical name), likely had some nails loose or gone or that the wind had knocked one just enough to let some moisture seep in. Sooooo, we don't have to rebuild the house? No, actually it can be easily fixed and the moisture was minor. Apparently, I was quite lucky I caught it happening because the wall dried almost immediately leaving no trace of it's crying fit.

Then, Larry took pity on me and decided to just go around my house telling me about things like "media filter" - change it...you don't need all those other filters you have....this is the important one. Something about PVC pipes in the attic and putting bleach down them in the summer months. Another revelation. Larry, being the dad he must be, promptly asked me if I had bleach and then went and climbed into my attic. Finally, he left me with numbers of who to call for the pokey things in the roof, how much it should cost, and his number in case anyone tried to tell us anything differently (aka, more expensive). I almost hugged him.

I called Jay and told him the good news....we are not Handy Manny but the house is fine and we don't have to live in the teepee my mom bought Nick. Score!

In the meantime, I'm chalking this all up to the pleasures of adulthood and not the plagues. But if I were you, I'd check your roof. Especially around the pokey things.

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

Stale Peeps and other delicacies

Stale Peeps. There is just something about the texture and taste of crystalized sugar in the form of Easter animal icons that just makes me happy.
Growing up, my sweet Grandma would leave a package a Peeps out for me with the bag slightly open so they would be perfectly stale and delicious. She laughed until she had tears in her eyes each year as I delighted in my Peeps. Grandma also made her famous Easter bunny cake - white with coconut for fur, jelly beans for the face and pipecleaners for the whiskers. She'd make one for us, one for the nuns and usually one or fifty for families she helped out. Grandma was also famous for her Easter egg bread. I'd love to tell you more about it, but all I can remember is the picture of her in paper with her famous bread and how proud she was of it. Proud in a nice Catholic girl way, of course.
This was our first year without Grandma. As much as I miss her laugh, I can only imagine her joy celebrating with her Savior. Her favorite song was "How Great Thou Art". If you haven't heard the Carrie Underwood/Vince Gill rendition...do so now on YouTube. This year, when I heard it, the following words pierced my heart. It were as if Grandma wrote the words herself...

When Christ shall come, with shout of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration,
And then proclaim: "My God, how great Thou art!"

Grandma, I know you are watching us all. I hope you are proud. And I hope you will have some stale Peeps waiting for me one day. Until then, I'm loving my life, my family and giving thanks to God that you were mine for awhile. 

Hope y'all had a happy Easter.

Welcome to the world Baby Jack Scully

Today, my sister and John welcomed John Joseph "Jack" Scully into the world.  At 7 pounds, 12 ounces and 20.5 inches, Jack and his mama are doing great. Of course, Titi is already on hand to show the first-timers the ropes and start whispering all kinds of love, sweetness and guidance into her second grandson's little ears. Somehow, I think whatever she whispers to her children and grandchildren stays imprinted on each of us.
My sister was in labor a day and a half, pushed for over two hours and is my new hero.  I hope that, as I write this, Nikki, John and baby Jack are all resting and sleeping soundly. The adventure they are embarking on is awesome, amazing....and exhausting!

Sweet Jack, I cannot wait to meet you, rock you and tell you all about all the fun you and your cousin Nick will have. Until then, know I am counting the moments....and I am head over heels in love with you.

P.S. Teddy. Prepare to get your world ROCKED, pup.

Bite Me.

Soooo, I had dental anxiety. Then, I found myself in the chair of an endodontist BEGGING for a root canal. Unfortunately, my damn teeth tested "within normal limits". Really? Then, WHAT THE HELL IS MAKING THE RIGHT SIDE OF MY FACE FEEL LIKE DANTES INFERNO?

The diagnosis du jour is "trigeminal neuralgia". Now, when you Google that, you get alot of unfun phrases like "most painful chronic condition", "depression" and "suicide". Not to worry, I just get super annoyed, and while having an "attack" tend to hide or go silent of hot minute. Yes, it's THE most painful experience I have gone through, but it's also been humbling. The times, especially if I have hours, without pain, I am so incredibly grateful. I would have never even thought about it before, but now, I send up prayers of gratitude. More than anything, even in times of pain, I focus on how much more pain I would be in if there were something wrong with Nick. I'll take the teeth and face thing.

In other, unrelated news, we've been building "El Ranchito Romano"...or as you gringos may call it "an outdoor kitchen and patio". I hope you will stop by and check it out. And, I hope by then I can bite something without wanting to kick a puppy.