Checking Off Milestones

In all of his recent evaluations, Nicholas has been determined to be about eight months behind in his physical development. He's maintained a steady eight months behind in development level, which is great because it means, while he's behind his "peers", he is staying on his own track and isn't falling behind.

He is a few months behind in cognitive development, and is actually age appropriate, or even advanced, in social skills (which anyone who knows him will tell you - our giant flirt).

So, even though he's currently eighteen months old, he's technically considered seventeen months old developmentally since he was born a month early, and he's measuring at nine to ten months in his motor skills development level.

As I've mentioned before, Nicholas isn't crawling or walking yet, and we honestly don't know when that will happen. We're fairly confident that it will - he's proven himself to be a singularly determined individual, but it will be late. Many people with hydrocephalus, especially at the severity that Nicholas had, will never walk, so we're grateful that he likely will, even if late.

He's been sitting up on his own for some time now, as long as someone helps him into a seated position. His core strength has grown that he now sits for the entirety of a taekwondo class (while playing with the other babies), and it doesn't exhaust him. Early Saturday morning, I was up with all three kids. Zachary was watching cartoons, Emily was playing, and Nicholas was practicing getting into his crawl position. Suddenly Zachary says, "Mom! Look at Nicholas!" I looked over and Nicholas was sitting up next to the entertainment center, trying to get the DVD player. I said, "Oh wow, that was nice of you to sit him up, Zach!" Zachary said, "Mom, I didn't!" I asked him if he was being honest, did he really not help Nicholas at all? Zachary swore that he hadn't helped Nicholas up. Which left the conclusion that Nicholas had gotten himself into a sitting position for the first time ever. We watched him throughout the morning and it never happened again.

Until nap. We went to get him after his nap and he was sitting up in the crib. We knew at that point that he had to have done it himself. That night when we went in to feed him his 9 p.m. feed, we found him sitting up in the crib instead of sleeping, laughing and incredibly proud of himself. Since then, we've found him in a sitting position several times, though we've never actually seen him put himself there.

This little guy continues to amaze us, and we are so proud to be able to watch this journey of his!

Eye See

After several weeks of patching, Nicholas followed up with his ophthalmologist where we learned that his patching regiment had done next to nothing to correct his eye. His left eye was still turned in pretty severely and the ophthalmologist was concerned that if we waited much longer, the possibility that Nicholas could lose his vision was high. Basically, because the signals coming from his left eye did not match with the signals (images) from his right eye, it would be possible for his brain to turn off the left eye to reduce confusion. In that case, the left eye would stop working and he would be blind in that eye. So, the doctor wanted to schedule the surgery.

He wanted to wait to hear from Nicholas's neurosurgeon first, so that we could be certain that the pressure inside Nicholas's head was within normal ranges and that pressure changes weren't causing the issues with the eye, and luckily, we just happened to have the annual follow up/ CT scans/ shunt series scheduled. As I blogged about earlier, that went very well and Nicholas was labeled stable by his neurosurgeon office - unless something happens (everyone knock on wood!), they would see him in a year. With the all clear from neurosurgery, we contacted the surgery scheduler at the eye doctor and Nicholas's fourth surgery was scheduled.

Today was his pre-op appointment and he was deemed fit to move forward with the surgery. Again, we have lucked out by getting matched with one of the best physicians in his field in Orlando. The eye doctor works specifically with children with neurological issues and has been performing this operation for over 20 years.

This is quite a common procedure, and also a fairly easy one (compared to the brain surgery and g-tube placement/nissen surgery he's had previously), but of course, it's still surgery. The ophthalmologist will be making a small incision on either side of his left eye. On the inner part of his eye, where his eye turns in, the muscle will be detached and reattached further back. The muscle on the outer side of his eye will be either folded and stitched to increase tension (the preferred method) or will be shortened and reattached. This will hopefully cause the muscles to pull his eye back into the correct alignment. Many people we know have either had the surgery themselves or have children who have, typically with fairly good results. The surgery has approximately an 80% chance of correcting the alignment issue with no further issues. It's possible to over or under correct, in which case we would try patching again and if that doesn't work, he would need to have surgery again. We're not going to look that far into the future though - we're going to just look at next Friday. He's scheduled to arrive at the surgery center at 6:15 a.m. on Friday, July 1st. The surgery will take around an hour (unless - in true Nicholas fashion - something strange comes up), and he'll be home that night. Everything I've heard, it's likely to be one of the easiest surgeries he'll have.

Thoughts, prayers, good wishes, whatever floats your boat are always appreciated. Send a little thought towards Orlando next Friday morning!

#Orlandostrong

The call came in at before 5 a.m. Sunday morning. It woke both of us up, and we both immediately knew it was probably bad news. You don't typically get calls before 5 a.m. on a Sunday morning with good news.

"I'm getting called into work. Shooting. Downtown."

Half asleep, my first reaction was anger. I asked if he was on call this weekend, no. I asked why he had to go in, his response sounds like it's a big thing. Before I even had time to fully process, he was kissing me goodbye and was gone.

I turned on the news to see what was so big it took him away from our family on that Sunday. And was met with horror.

The first time a mass shooting hit too close to home, my friend and I were sitting in my college apartment watching in shock and agony as Columbine unfolded. We were an hour north and felt helpless. We were glued to the TV all afternoon and when a candlelight vigil was announced in Denver, we jumped in my car and drove down. It didn't matter that we had class in the morning. It didn't matter that we had to drive an hour one way. We just needed to be with people who were mourning like us. We needed to contribute SOMEHOW.

This time, it was seven miles from my front door. Seven miles. As we lay sleeping peacefully, seven miles away tragedy and horror were unfolding. As the sounds of Mickey Mouse Clubhouse rang cheerfully through my home, Mike sat in front of what used to be a nightclub. As the kids moved to the backyard and played in the sunshine, families were sitting in waiting rooms praying that the bullets could be removed, just seven miles from me.

I don't even know how to begin to comprehend the horror. To see #prayfororlando and #orlandostrong trending and know that the world has it's eyes zeroed in on my home. To the world, this is where Mickey and Universal and Shamu are housed, but this city is our home. We know the beauty in this city, the city that hosts the largest Pride parade in the US. The city that hosts the largest party for the special needs population in the the US. That celebrates its diversity and welcomes the world with open arms (as long as we don't have to drive down I-Drive for some reason). Sure, there are things about this city that we all wish were better, things about other places that we miss, but this is the place we've chosen to lay down roots and raise our children.

My heart is breaking for the victims and the families of the victims. I can't even begin to imagine the fear of the unknown, or the complete devastation when the unknown becomes known. I have no idea how those that were there and survived begin to move forward. How terrifying it must be to wake up in a hospital bed and hear you were shot in a mass shooting that has the eyes of the world on your town. My heart is swelling in pride, because as you look under this microscope that we're under, you see the good. People who were standing by in the streets became helpers. People stood for hours in the hot sun to give blood to those in need. Appointments for later in the week are completely booked. It is impossible to give blood in Orlando right now because everyone is doing it. A gofundme designed to help the victims with whatever they need raised over a million dollars in 11 hours. People want to help. They want to connect. They want to do good. Rainbow flags raised in solidarity for the LGBTQ+ community all over the world.

My heart hurts for the first responders who had to walk into that horror and who did so without hesitation. For the EMTs and paramedics who transported gravely injured and scared individuals just a quarter mile down the street. For the medical staff who jumped into action so quickly and likely saved lives. For the media who had to stand outside the scene where such horror unfolded, who had to speak to family members, who had to tell the story and remain professional, remain unemotional.

And yet, in the wake of all the horror - hope. Restaurants that were closed opened and cooked food for the volunteers, for the first responders, for the media. Vigil after vigil after vigil where people hugged and cried together even though they had never met before.

We chose to not tell Zach about what happened. He's so little, he's still so innocent. He doesn't need to know that sometimes the world can be a confusing, and scary, and evil place. The hope, though, that makes me feel more comfortable for the future that he and Emily and Nicholas are inheriting. We are trying so hard to teach our children that if there is a choice, to always choose the path of kindness, compassion, and love. And that's the legacy I hope we leave for this world.