In case you were wondering...

I'm like the worst employee...I gave you the situation, but I failed in the follow up.  Well, HR, let me give you my defense...MY COMPUTER BROKE! I don't blame her. Between the "I pretend I can make cute videos of my kid" and "sure, let's skype outside in Texas humidity" and "I download stuff like a stay at home mom who still thinks she has a marketing career champ"...it was bound to go south. Jay said that 5 years with one computer was actually quite an accomplishment. The trendy nerds, even the not so trendy nerds they keep in the back room agreed.

SO...in case you were wondering, here's what I would have told you....

Feb 28, 2012 - our 8th anniversary
I definitely wanted to upload the picture of when Jason realized he forgot the studs that went in his shirt and improvised with paper clips
I would have absolutely uploaded the picture of me walking into the chapel in La Garrita, Alajuela, Costa Rica, with the "El Infiernito" (Bus to hell) in the background
And I would have DEFINITELY told you how the violinist broke his fingers an hour before our ceremony and was replaced by a saxiphonist.....who played "Killing Me Softly" during our vows.
I probably would have also told you the really mind-blowing story about how our VHS copy of our wedding video (had to get one for our grandmothers) ended up being a home-grown porn tape that accidentally got thrown in with our videos. I'm assuming my father got a discount on that bill.
I might have even thrown in the picture of the extra "security" my parents paid for after a transvestite prostitute offered her services at our rehearsal.

After all that, eight years, lots of good and bad, here's what I know, we do our best. And when we don't, we call each other out on it. But back to Nick...

On Wednesday, Nick and I met with the Chief of Pediatric Neurosurgery for UT Physicians, Dr. Fletcher. Somehow these appointments occur when Jay is traveling. Not to worry, my Mami didn't raise a weakling. Would have been great to have either my husband or mom there, OF COURSE. But, life is life and you either have to roll with it, or it will roll over you.

I'm going to be even more frustrating by not telling you everything Dr. Fletcher explained to us. (I know, really?) But I'll tell you this. When you are a 35 year old women and a doctor recommends a treatment plan that includes Botox....well, I just had to ask if we could share a vial. It soon became apparent that if you are smart enough to be a Chief of Pediatric Neurosurgeory, perhaps we have different senses of humor.
He also remarked twice that if he didn't have Nick's MRI results (I brought Nick's medical binder), he would have absolutely thought Nick was presenting with a posterior fossa tumor. I reminded him that Nick was in the clear but it gave me a greater appreciation for the specialists that have led us on this journey.

Like marriage, this journey with Nick hasn't always been good news. But sometimes you get just enough to carry you to the next big decision. And, with some experience and maturity you learn, that in case you wondering....faith is always the answer. Happy belated anniversary to an amazing, blind faith in me man, and to my son...how silly I feel now thinking the summit was met the day you were born after all those years. I just started climbing and you are worth every step.

When a negative is a positive

Negative for a brain tumor. DID YOU HEAR ME????? I just wrote/screamed that Nick DOES NOT have a brain tumor! I wish blogs came in all 5 senses because if they did I would be simultaneously shouting, dancing and likely kissing you (but not with tongue, because that would be weird).

We now move forward with the muscular issues and likely surgery, but after these past three weeks that seems like, as Jason would say, "mice nuts". Whatever comes next, you know what it's not....a BRAIN TUMOR!

Your support, emails, calls and texts through this roller coaster journey has been invaluable. And most of all, your prayers.  I am a firm believer in the fact that what we experience in this life, especially those highly emotional experiences are meant to teach us something we need to learn.  I learned that faith is not a religion but rather a daily, sometimes moment by moment CHOICE to believe that God is real and that He is with us always.  It may not always work out in our favor, but He does not abandon us. Also, I've learned that there really is a power in positive energy.  Be a Tigger instead of an Eeyore. And when you can't be a Tigger, at minimum, be a Pooh Bear. Having your head stuck in an empty pot of honey is better than being an "ass" any day.

A very special thank you to our friends Dr. Tad Shirley and his wife, Jennie.  Once again, it's amazing how a few words from a doctor's mouth can change your life.

MRIs, titanium knees and bad guy bones

Today was finally MRI day!!!! Three weeks into this journey, today was the day we have dreaded and anticipated since the moment "posterior fassa tumor", "unknown cranial mass", and "spinal abnormalities" were introduced into our vocabulary. Along the way, we've received incredibly encouraging news from the pediatric ophthalmologist and craniofacial plastic surgeon, but the golden ticket to information lays squarely on the MRI results. 

This morning we woke Nick up early so Jason could take Nick to IHOP with the hope that Nick would pig out since he wouldn't be allowed to eat past 7 a.m. for a scheduled 2:30 start time. If you know Nick, you know this was no small hurdle. My child has always been able to dominate food. He eats more before 10 a.m. than most humans want to eat before 10 p.m. I used to joke I was worried I would be called on Maury Povich for "MOMS WHO LET THEIR KIDS EAT TOO MUCH!!!". 


While Nick and Jay ate, I stayed home and used my time to get my mind right. At that very moment, my dad was undergoing a total knee replacement in Cincinnati. Times like these the miles separating my family seem to expand and contract simultaneously. I can't help my mom in any practical way, but man, can we PRAY and just pour positive energy all over each other! My dad and his new titanium knee came out of surgery well and will be chilling in a hospital bed until about Saturday.


By the time we arrived at Texas Children's around noon, the lack of food and now drink was setting in. Thankfully, the nurses at TCH are just SPECIAL people and helped us power through. 


We explained to Nick that the doctors thought there was a possibility that he might be a superhero and needed to take pictures of his neck bones and brain. Naturally, Nick chose to wear his "bones of the bad guy" pajamas. The nurses agreed and allowed him to wear his PJs. We had a great surprise and Nick was able to see Grandpa right before his MRI. He LOVED it and loved doing magic tricks with Grandpa. We were REALLY needing a distraction at that point. Perfect timing, Grandpa!

Family self-portrait

Along this journey, there continue to be moments of deep faith and moments where I know I'm just not right. While having the sedation protocol explained to us, I had a "you're not right" moment. The CRNA was explaining something about starting with Propofol and then using some nitrous oxide. Here's what I blurted out..."So, we're going to start with some Michael Jackson and then add a dash of Demi Moore?" Immediately followed by..."Sorry, I read too much PEOPLE." 
In the end, he was intubated which wasn't awesome, and watching him go "under" was a little uneasy. Like generations of Costa Rican women before me have done to their children, I bent close to his head, placed the sign of the cross on his forehead with my thumb and whispered to him that the "Virgencita" was with him, that he was blessed and asked "La Virgencita" to protect him. Finally, it was all happening. He was getting both his cervical spine and brain MRIs and soon, we will have some answers.   Knowledge truly is power.

Doesn't he look cute waking up......?

Well, I'm glad he looks cute, because he started acting like an angry drunk at closing time about 2 minutes after this picture was taken.  A strawberry milkshake seemed to help alleviate my hungry, angry little "drunk's" sore throat and overall misery. 


We are home now. Tomorrow, I will pull out my "Nick's Medical Records" binder and I will be looking forward to getting results (hopefully Friday), filing today's paperwork and thinking about next steps. But for tonight, I'm going to pour a "Big Carl" glass of wine, and bask in the gratitude I feel toward each of you who have kept us held tight with your positive energy and lifted in your prayers.

Owl always love you....

Happy Valentine's Day! I was going to pepper this post with a little St. Valentine's Day history, but then quickly remembered that all the Valentine day legends somehow end in death. And before anyone can make any wisecracks about marriage, I'll skip into a little owl-sighting story.

This morning, while Nick was talking to my mom on the phone, she spotted an owl outside her window. And, it's her second owl sighting. Significance, you may ask? Well, in many cultures, owls seen during the day, are thought to be good omens. My mom is on board with this belief. The women in my family have long been known to rely heavily on intuition and what can I call it....life vibrations. Yes, it sounds hokey and unrealistic, but ask Jason how his golf game goes when I'm not feeling "positive vibes" about it. Anyway, back to the owl. Do I believe it's a positive omen regarding Nick's MRIs tomorrow and, in addition, my father's knee replacement surgery tomorrow as well?
I believe God is the Ultimate Healer, the Creator and the only One who holds our future in His hands. I also believes the Holy Spirit is speaking to us ALL THE TIME. The problem is we don't have our eyes and ears open enough to see and hear the message. Therefore, I DO believe He allowed my mom to see the owl while on the phone with Nick to provide comfort and encouragement.

I wish y'all a fabulous Valentine's Day filled with the type of love you need most in this moment whether it be romantic, family, friends, pets or just a delicious meal. And, if you're lucky.....maybe a great "hooter" sighting. 

(Sorry. I couldn't resist.)

To my Valentines....I love you Jay and Nick like a fat kid loves cake after a diet.

Doublefarts

If a little 3rd grade humor floats your boat, you may appreciate the following anecdote. If not, you may want to stop reading until I have something more proper to write about.

A couple weeks ago I picked up the report detailing Nick's last spine X-ray. One line details "considerable bowel gas obscures the lower lumbar region". Did I read that correctly? Is the radiologist, in all his "doctor-speak" telling me that my son is so full of farts he can't see Nick's bones? If so, that is fantastic and hilarious all at the same time. Jason and I certainly had a good laugh about it.

So, there you go. A post about farts.

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