Five Years

We have spent five years getting ready for tomorrow.

In 2014, while seeking a second opinion on Claire's back, the orthopedic surgeon confirmed that Claire had Early Onset Scoliosis (EOS). While most of us know someone with "a little scoliosis" that they live with, Claire's form is progressive. I will never forget asking the surgeon what would happen if we just didn't do anything and let her live with a curved spine. He replied, "That isn't an option. It will crush her heart and lungs. The only thing we can do is to slow the progression as much as possible to delay surgery."

And delay we did.

Between initial diagnosis and last year, she spent almost 18 months in casts that went from her arm pits to her butt crack. When she wasn't casted, she had countless back braces. To celebrate after each cast, she got to spend as long as she wanted soaking in the bathtub.

 

When she wasn't dealing with that pesky surgeon trying to slow down her curve, she was busy being a kid and getting as strong as possible.

She hit 20 lbs almost exactly five years ago (3/7/14), and she celebrated with a giant bottle of champagne!! Kidding, that was me...my memory is fuzzy.

 

And she has spent over 1000 hours in therapy learning how to sit, walk, and ride a bike - despite having her center of gravity a bit wonky. Daddy has been gone for over a year at two deployments, but she celebrated homecomings with a trip to Disneyworld and a trip to Jamaica.  She became a big sister to Aubrey, and she is waiting for baby brother to join the party in three months.

And here we are exactly 12 hours away from spine surgery.  She is one week away from her 7th birthday, and she finally hit 30 lbs.

In 2014, there was a new technology called "MAGEC Rods" that had just been approved by the FDA.  Rather than kiddos with severe scoliosis getting cut open every 6 months to "grow" the rods - doctors now had the option of putting in a magnetic rod. Every three months, kids could go to the doctor and get a magnet run along their spine to "grow a little". We knew that was the best option for Claire, and while we waited for her to get strong enough the technology went mainstream.

Now, there's a set of rods sitting at Children's Methodist Hospital waiting for Claire to receive in the morning. We'll spend the next 4-6 years with the magnetic rods until she is big enough to have a final spinal fusion to permanently stop the progression of her scoliosis.

So, here's to the next five years...she'll be a little bit straighter, and just as much of a fighter.

The Brochure

October is Down Syndrome Awareness Month. Ironically, today I was cleaning out Luke's closet, and I came across his hospital discharge packet from when he was born. In it were records from his 21 days in NICU, several copies of eye tests and hearing tests he had failed with follow-up appointment schedules, and a brochure on how to care for a baby with special needs.

The brochure focuses on the feelings of loss or anxiety over having a child with special needs rather than the typical child you envisioned. It claims you may need to "change your expectations". It mentions that you may have "a few more appointments" than a typical child may have.

There is no pamphlet that is going to prepare you for the emotional roller coaster of those first few months. And a few more appointments? Aubrey is now 18 months old, and she has had a total of 5 or 6 appointments. By the time Luke was that age, he had over 30 days hospitalized, endured three surgeries, and had over 150 appointments.

What those brochure failed to mention was the wholesome kindness that you would have the privilege of witnessing every single day. When we were in Chicago last weekend, Luke proudly waved hello to everyone he saw. It did not matter if it was a business person striding out of some fancy building, a mom pushing a stroller, or a homeless man sitting against a building. This afternoon he spent an hour running through the house in his Halloween Ghostbusters costume getting ghosts so Claire and I wouldn't be scared. Then, when I asked him to help with Claire so I could clean up the kitchen, he didn't hesitate to help her with her walker.

The one thing that the brochure was right about was to "change your expectations".  However, I disagree that this is only true for parents of a child with special needs. Parenthood is a wild ride, regardless of the situation, personality, or abilities/disabilities of the child. It does not matter if you have the most outgoing or socially awkward child, the athlete or the video game expert, the bookworm or the child who can never find his or her homework folder.

So, for Down Syndrome Awareness Month, to hell with the brochure.  Forget "changing expectations" and strive to "surpass expectations" in any situation or challenging moment.  Learn to view the world more through Luke's eyes - with a little more kindness, and a whole lot of enthusiasm.

The Surprise - Part II

Link from part I:  http://patrickmelissaandfamily.blogspot.com/2017/08/the-surprise-part-i.html
 

Monday, Just 31st 3:09 PM - we finally had an official homecoming date and time.

At any given time during deployment, I could rattle off the theoretical number of days, hours, and in some cases minutes or seconds until homecoming. It was theoretical because the Air Force simply does not like to pre-plan dates for neurotic wives such as myself. Then, to top off the anticipation, the entire group of guys got stranded in Kuwait for a few days during the journey home because the entire crew had food poisoning. Patience is not my greatest strength, nor is it Luke's. Every five seconds he asked, "Mom, let's go to airport!! Get daddy!!".

Just when I thought we might lose our minds from anticipation, it was time.

My dad always says that anticipation is the most fun part of a trip or an event, and in this case, that was partly true. My friend, Tammy, made the kids the most perfect shirts. Luke's said, "He's not just my daddy, he's my hero." The girls' shirts said, "He is my hero, and I am his princess".  Autumn, our nanny helped the kids make posters. Neighbors coordinated dinner so we wouldn't have to think about food during his first days home. Friends, our babysitters, neighbors, and members from the squadron gathered from around town for the Godinez airport party.

In true Godinez fashion, things took a turn for the crazy when we attracted the attention of a news crew. When we explained Claire's surprise, I was suddenly getting a mic strapped to my shirt by a news crew so they could catch the homecoming moment on camera.

"He's here! We see him!!," everyone started shouting. There he finally was at the top of the escalator, coming down to see us.

"Go Claire, GO!!!!", our babysitters and I coaxed.

And off she went. Luke beat her, of course, screaming, "DADDDDDYYYYYY!!!!" and leaping into Patrick's arms. But after we stopped Patrick in his tracks, she inched forward in her walker to see him.

No one was carrying her. No one was helping her balance. And it was captured by the news crew.

I love homecoming pictures and videos, even when I don't know the family. In fact, I have probably spent an embarrassing amount of time watching them and crying. There is no more beautiful moment than a family throwing their arms around a loved ones after months separated by deployment.

Claire's moment is no different. Her video has been viewed over 250,000 times, and it was on the news in 13 states (that we know of).

The anticipation was fun, but the moment was absolutely perfect.

Claire's News Story

The Surprise - Part I

During deployment, time is a strange thing. The hours drag on, but days fly by as one blends into another in a monotonous routine of survival.  189 days - 4536 hours - 272,160 minutes of filling an emptiness that deployment thrusts upon a family. We were going to figure out how to make time pass quickly, but I wasn’t quite sure yet of the details.

When I was driving Patrick to the airport, we were discussing all of the random things I would do with the kids while he was away.  I casually asked, “What would you do if Claire learned to walk while you are gone?”

“I’d shit my pants,” he replied seriously.

Challenge accepted.

As long as deployment seems, the time since we just put Claire into a walker February 3, 2015 seems like an eternity ago. Her therapist was convinced it was time to get her “vertical”, but she lacked the strength or coordination to propel the walker forward. However, as you pulled her arms, she moved first her right leg and then her left. Two small movements to give us a glimmer of hope that walking would someday be possible.

Fast forward over two years, and that day was still not here.  Despite countless therapy appointments and hours of practice at home, she simply stood there in her walker unless someone pulled her arms or pushed the walker from behind. At some point, hope begins to waver. At doctor appointments, I sometimes can’t decide if I want answers to the questions in my head, but we all know that my filter doesn’t always work well. During one appointment about a year ago with her orthopedic surgeon, I asked if he thought she would ever walk. He paused, thought carefully, and firmly replied, “I don’t know. But, I do know, that if she is going to, most patients walk by the time they are five or six. After that, the odds just don’t seem to be in their favor.” Clearly, he didn’t have a filter either, and I love him for his brutal honesty. The clock was ticking more loudly than ever after her fifth birthday in March.

The week before Memorial Day was especially frustrating. Luke had come down with a stomach bug, work was crazy in anticipation of the long weekend, and I was in a foul mood because I despise holiday weekends when Patrick is away. Per our usual evening routine to help time pass quickly, I was sitting on a little scooter in front of Claire, alternating between pulling her along a few feet and letting her stand there to see if she would move on her own. In one of my less stellar parenting moments, I angrily pleaded with her, “Will you please just move your feet.” I stared at her, willing her to move before I completely gave up for the night as was the case every other night.

The walker inched forward.

I lost my ever loving mind.

Sobbing, I begged her to take another step.

She started laughing hysterically, and then she inched the walker forward again.

Step after step she propelled the walker forward about three feet, the wheels of the walker smearing my tears across the floor. In that one moment her entire world shifted. 

And we weren’t going to tell a soul other than the nanny and her therapists. We had two months to practice for the best surprise ever.

To Be Continued…..

When Paths Cross

I always say that "things happen for a reason", and this typically drives Patrick nuts. However, after today, I think he's turning into a believer.

No one enjoys waiting for a medical appointment - let alone one of those "Big" appointments where some tough conversations need to happen. Claire has been losing weight for the past few months, and the doctors just don't understand. At our last nutrition appointment we were advised that we had "tried every nutritional option" and we needed to begin considering "alternative options". Translation: we were back to square one of considering a GI tube...and the doctor was 1.5 hours late for our appointment.

Let me just say - I love this doctor. He came out to tell me he was working some difficult cases, and he had not forgotten about us. He anticipated our appointment taking a bit longer as well.

Until we put Claire on the scale.

She gained 1.6 pounds since last month - more than she typically gains in an entire year.

We all stood there staring at the scale. "Am I in the right room???" joked the doctor.

Totally not how we thought the day would go. So, we went through our typical routine, and we sat there going over every detail since our last visit, and we decided that it was the combination of meds, coconut oil, emulsified oil, and dietary supplement that she gets at least 3-5 times each day. Her body has finally healed enough and we have just the right balance...for now.

But....the story gets better:

When we decided to move to a prescription for the emulsified oil, the doctor needed to consult with the nutritionist, so he went down the hall to her office and said, "Hey, I have a question about Claire Godinez." As they began talking, the pediatric metabolic geneticist poked her head around the door and asked, "Are you talking about Claire Godinez from Tripler?? (military hospital in Hawaii). Our doctor only knew that we had come from Louisiana, so he came back to the room and asked, "Hey...weird question, but were you ever in Hawaii?"

"Yeah. When Claire was 8 months old. We joined Patrick on his 'deployment' so Claire could get different medical care."

"Well, you're never going to believe this, but Janet is here."

In walked our Hawaiian miracle doctor. When Shreveport had written off Claire and made a grim prognosis, she was the first who gave us a glimmer of hope.  She was the doctor who insisted on additional testing, coordinated meetings with other doctors, and quickly ruled out the horrible, scary things that LSU doctors had diagnosed.

In the midst of my minor meltdown, I asked how she possibly recognized Claire's name from a simple passing comment.

"You're not really a family that someone forgets," she joked.

Nope. Not today. And luckily, it was for a good reason. You never know when your path may cross with someone from the past, and you never know when Claire might surprise us all.

Here is the full story from our visit in Hawaii:

http://patrickmelissaandfamily.blogspot.com/2013/01/a-christmas-story-little-late.html

Tooth, Blood and Lunch: All Lost

We're having a hard time with losing things around Casa de Godinez.

On Friday, I was feeding Claire a snack, and I suddenly noticed that her mouth looked very strange. After a second look, I realized that she was missing her bottom tooth!!! It was just a wee bit wiggly earlier in the week, but apparently I needed to check more frequently.  Loss #1:  Escape artist tooth...never to be found

While I was checking Claire's other loose teeth, monkey-child climbed up on the ottoman to look out the window. Rather than waiting patiently, she tumbled off the side, catching her entire squishy body with her front teeth. Luckily, only blood was lost, and her teeth are all positioned much more securely than Claire's. Loss #2: Blood...lots and lots of blood.

As I was mopping blood off the hardwood floor, Luke continued to complain that his stomach hurt. I attributed it to the crazy end of year parties. Pizza, candy, popcorn, partying, etc. will make anyone's stomach hurt. I told him to go lay down and rest, and he lost his lunch while resting in my bed. Loss #3: Lots of party food in the wrong form.

While we were visiting with Patrick on FaceTime on Monday, Claire didn't want to be outdone by Luke, so she opted to lose her lunch while eating lunch. Guess it hadn't been too much party food for Luke. Parenting fail. Loss #4:  Lunch gone wrong.

So, while we are on this trend of losing things, please cross your fingers that Aubrey and I don't follow in Luke and Claire's footsteps. Otherwise, Loss #5:  My sanity.

Ice Cream

Some weeks, the monotonous repetition of therapy makes me want to scream. But sometimes, there are those perfect moments that make every second of appointments 100% worthwhile.

The other evening we were at Chick-fil-a for dinner. It was dreary and rainy, baseball practice had been cancelled, and I didn't feel like cooking. Luke was able to burn off some energy, we bumped into friends and chatted, and the girls enjoyed their chicken nuggets. When we were packing up to leave, Luke announced that he wanted some ice cream. The line was short, so I told him yes. As I reached over to grab my wallet, Luke held up his hand and said, "No. Stay mom."

He took the dollar out of my hand, scampered up to the short line, waited patiently, and when it was his turn, he looked right at the lady and said, "I want ice cream". Without missing a beat, she accepted his money, gave him change, they chatted and she handed him the ice cream.

For the first time, I didn't have to translate once.

Complete independence.

I'm not sure who was more proud at that moment - me or him. But, I do know that we owe that moment to our amazing therapists - past and present - who work with the kids, convince me it is worth it, and never give up.

Luke enjoyed his ice cream, and I cried the whole way home.