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.

Lessons

Awhile back, I posted about the fight that we'd had with the PA at Nicholas's neurosurgeon to get a prescription for a cranial band. And that we'd seen such success with it.

When Mike had had his appointment with the PA, he had been told that because of the severity of Nicholas's hydrocephalus, the best thing we could do for him as parents was to take him home and make him as comfortable as possible for however long he would have. We had already seen progress from him at that point and refused to believe that we had reached the end of the progress. While we weren't going to fight that fight with the neurosurgeon's PA, we didn't plan on not moving forward with the therapies that he was responding so well to.

Last week, Nicholas had his first follow up appointment at the neurosurgeon's office since that fight. And he was scheduled to see the PA that had originally denied us.

Mike brought Nicholas (and Emily!) to the appointment. When the PA walked into the office, Mike had Nicholas sitting up on the table - independently. The PA walked in and was shocked the Nicholas was sitting up on his own and mentioned it. Mike nodded and waited for the measurements to begin. Nicholas's asymmetry was at 4 mm. The PA re-measured and looked at Mike. He was in awe. He said, "It worked. It actually worked." He couldn't believe it.

During the course of the appointment, Mike found out that the PA had truly believed that Nicholas would be severely disabled and that we would likely not see much development out of him. As it turns out, the majority of the fluid from the ventricles was pooled in the front of his brain during gestation and had caused damage to the frontal lobes. The frontal lobes are primarily responsible for gross motor skills (such as sitting, crawling, walking), as well as the swallow function. It makes perfect sense, then, that Nicholas has difficulty swallowing without aspirating and also that he is delayed with his gross motor function. But he's catching up. He probably won't walk before he's 2, but he very well may crawl. He's sitting up, completely unassisted, for 30 minutes to an hour now, where previously we were lucky if he sat unassisted for more than 5 minutes.

The PA told Mike that he was wrong. And that he is amazed in the development he's seeing in Nicholas. That it is completely obvious that the brain is regenerating itself and that nobody can tell what Nicholas can or will achieve. He credited us for fighting back in every area that we could. For being Nicholas's advocate against even him (the PA). The PA ate some humble pie that day, and for future patients of his, I am eternally grateful that he had the self-awareness to realize he had misjudged and that he could learn from his mistake. I felt a tiny stab of retribution too, of course, but mostly I'm just glad that he could reflect on his analysis and realize that perhaps he doesn't have all the answers. For the rest of his career, he will think of the little boy who surprised him when talking to parents. The little boy who refuses to stop.

Being Kind

Recently, I was having an issue with my phone that required genius intervention. Anyone who has any kind of an Apple product understands the wait that will ensue to get genius intervention at an Apple store, but my phone literally did not work (touch screen was completely non-responsive) and since we don't have any other form of communication than our cell phones, it had to be fixed.

I got home from work, traded out the guard with Mike as he headed off to work, and went over to the mall. When I got there I was told the next available appointment was in two and a half hours, so I took it and then decided the kids and I could go get some dinner.

As I've mentioned before in this blog, we tend to attract attention when we go places. People see the double stroller and are drawn to it. "Twins?" is the first word I hear out of almost everyone's mouths. And now that they're older and more interactive, people have even more fun with them. Nicholas, in particular, draws attention because he is so friendly. He loves to have attention - he will giggle and smile and try to touch you. He adores people.

On this day, I was a little out of sorts because I was stressed about the phone, and it's not easy to navigate a mall with a double stroller (one of whom really hates being strapped in now that she can walk) and a curious pre-schooler. Zach suddenly decided he had to go potty NOW. Luckily I had already made my appointment at Apple, so we walked as quickly as we could to the bathrooms and he declared that he would not go in there because it's for GIRLS. And of course, the family restroom was full. Both of the twins needed diaper changes too. I convinced Zach to come in and help me while I changed the diapers and then asked him to just TRY to go potty in the first stall nearest the diaper changing area. He asked me if that was for boys and I blurted out, "Yep, that's the one they save for boys who have to come in with their mommies!" He was delighted and ran right to the stall. I felt a pat on my back and I looked up to see an elderly woman smiling at me. "You're doing a fine job mama." she said softly, smiled at the twins, and then left the bathroom.

On this day, at this moment, as we headed out of the mall to go get some dinner while we waited for my Apple appointment, Nicholas was wearing his helmet, wearing his eye patch, and eating through his g-tube. All of this is normal to me. I am used to getting some glances, and even some curious kids asking, but it is something that people who know us really don't even pay attention to anymore. Zach had asked about going into a store and so I had stopped and was paying attention to him. I finished my conversation with him and looked up to a man standing in front of the stroller, gazing at Nicholas. The look on his face was one of pure disgust. He noticed me notice him and looked up at me.

"Is something wrong with him?" His voice was dripping with revulsion. It was like Nicholas was the worst thing his eyes had ever encountered. It caught me completely off guard.

I could have used the opportunity to educate him. I could have explained that yes, something is wrong, but he's okay. Instead, my mama bear took over and I growled, "Is something wrong with you?" He looked shocked, shot me a dirty look, and walked away. It hurt my heart with everything I had because I knew this wouldn't be the last time that he encountered something like that, and I lashed out. I don't know if he would have even listened if I tried to educate him, but I could have tried. My only saving grace was that Zach was distracted by the store he was trying to visit and I don't think he even realized the encounter happened, it was over that quickly, and that Nicholas had no idea what was going on.

Two very different encounters that left me feeling two very different ways. I wish that we all tried to build each other up. I wish that we all spoke with kindness and gentleness. I hope that I can teach my children to be the first encounter, not the second. And I hope that Nicholas can get through life without feeling the way that man made me feel, simply because he's different.

Let's get ready to army crawwwwwwllllll!!!!!

We have been noticing a significant jump in Nicholas's abilities recently. We've brought it up to his pediatrician, his therapists, and his helmet guy and are wondering if because of the fact that Nicholas is sitting up far more than he used to, the shunt is being assisted in removing the cerebral spinal fluid from his brain and there's more room for actual brain matter.

We also know that some pathways that were likely damaged because of the brain being squished in utero and during the first year of his life are beginning to regenerate. The human brain is amazing and baby brains are even more so. Even the NICU nurses and doctors told us that would happen - that pathways would likely regenerate.

So we are thinking that because of the combination of all these things, plus the addition of phenomenal therapists, Nicholas is having an explosion of development. He's been trying to roll over completely for ages now. He could roll over, but he wasn't great at it and he really hated being on his belly. I'm sure it was uncomfortable because he wasn't used to being in that position for the first year of his life. Plus, having the g-tube button may have hindered that somewhat too. He recently began sleeping on his belly and enjoying it. I put him down on his back and no matter how many times I've gone into his room to check on him and put him back on his back (wanted to make sure he wasn't stuck!), I'd go back in to find him on his belly again.

He's also started rolling himself around the room to get to places. Obviously this is pretty far behind developmentally, but it's something he couldn't do previously, so it's super exciting! He's become incredibly quick at getting places by rolling there. The other day, Mike and I went out on a date for his birthday (first "official" date night since the twins were born!). One of Zach's amazing taekwondo instructors babysat the kids for us (Zach planned a night of watching about 12 movies and eating popcorn). When we got home, the babysitter told us that Nicholas had been trying to sit up all night. We were floored. He had certainly never tried anything like that for us! She said, yep, he just kept trying. Because the kids were all up (babysitters let you stay up late and eat junk food - they're the BEST!), we were able to see Nicholas roll over to his belly, take his arms, and push up. It was nothing we'd ever seen him do before.

Most recently, I was home on a weekend day and was sitting on the floor playing with Zach. My phone was on the floor next to me and Nicholas realized it was there. He rolled over onto his belly and lifted up his head (getting stronger every single day) and then he started a slow but very determined army crawl towards my phone. I didn't believe it, so I called Mike into the room and moved the phone further away from him. He did it again. We've tried with toys, remotes, dog toys, a brother... but the only thing he currently seems motivated to army crawl for is a cell phone. So. Our cell phones have been hanging out on the floor recently a lot so that Nicholas can get more practice. His therapists were amazed when Mike showed them and Nicholas spent that entire therapy session army crawling for Mike's phone.

When I was pregnant with Nicholas, Mike and I were desperate for information about what hydrocephalus means to an individual. We were scared that we were setting Nicholas up for a difficult life. We needed to understand what we needed for him - how we would be able to help him, what help he would need, what the outcome would be for him. The high risk OB, the neurosurgeon that would ultimately become Nicholas's, my regular OB, even the pediatrician at Zach's office all told us there's nothing we can tell until he's here. The spectrum of how hydrocephalus affects an individual is so wide, and it can change throughout an individual's life, Now that Nicholas is here, I understand what that means. I've become entrenched in an incredibly supportive and strong hydrocephalus community since joining the HA to co-chair the WALK. Just among this small group there is a huge difference in how hydrocephalus has affected them or their loved ones. From a woman with over 200 brain surgeries to a teen aspiring to be a doctor, hydrocephalus has run the gamut.

So every day I remind myself what the NICU nurses told us - let Nicholas write his own story. Don't write it for him, just help him write it. And what an amazing story this warrior is writing.

Who's Counting?

During the first few years of a child's life, you spend a LOT of time visiting with their pediatrician. Even completely healthy babies get seen frequently for check-ups, vaccinations, and sick visits (even babies who stay home - have to build that immune system!). You become even closer to your pediatrician if your child has any kind of a medical issue whatsoever.

During each of these visits, as all parents can tell you, the baby is weighed and their length and head circumference is measured. These go on a chart as little dots and you have a brand new thing to stress about. Is my child's weight/height/head circumference normal? Is it too high? Too low? You leave the office in proud possession of their latest percentiles. Percentiles are rarely anything to be concerned about. If your child is in the third percentile, it just means that 97% of babies are bigger than him or her at this specific moment in time. It only becomes concerning when a baby doesn't follow their "curve." Emily, as I'm sure you can guess, tracks very low in her percentiles because she's a tiny little peanut. She is, however, on the full term growth charts as opposed to the preemie chart even though she was technically a preemie, so that's a tidbit to be excited about.

Nicholas tracks along his charts fairly well, with one exception. I'm sure you already know the exception is his head circumference. He was born with a head circumference of 46 cm. The "average" head circumference for a newborn is 36 cm, so you can see just how large his head was when he was born. He went as high as 47 cm while in the NICU, but some of that can be attributed to swelling after surgery along with human error (the nurses don't always place the tape measure in the exact same spot). Nicholas has always had a large head for his age and he's always been so far off the chart that it would be absurd to assign a percentile to his size. He's in the 175th percentile for age??? It's meaningless.

Obviously, unless the circumference shifted dramatically larger, his pediatrician was aware of his head circumference and was not overly concerned. The thought has always been that at some point, his body would catch up with his head and he'd start following along his growth curve.

Recently, he was seen for his 15 month (15 month????) check-up. He has recently made some significant leaps forward in his progress and we were excited to talk to his pediatrician about it. We've started adding real food to his formula diet. We're currently using fruit and vegetable purees and adding them to his formula and feeding it through his g-tube. We're still thinking that he'll eat by mouth one day (we don't know what day, but one day), and we'd like his body to be used to "real" food when it happens. His head size has also gotten smaller as I mentioned in a recent blog post. He's sitting up far more frequently and has started rolling over onto his belly and trying to push himself up into a crawling position.

While at the check-up, the standard measurements were completed. He's staying right on his growth curve for height and weight. And for the first time in his life, he is on the chart in head circumference. His body has finally started catching up with his head size. He's in the 97th percentile, true, but he's on the chart. It was really cool to finally see that dot fall in line with other babies his age. And it happened far sooner than we thought it would - we'd been told previously it would probably happen around age 2 or 3. Clearly this kid is an overachiever.

Arrrr, Matey

Recently, we had noticed that Nicholas's left eye was starting to turn inward. It was new.

At his 15 month check up, Mike asked Nicholas's pediatrician his thoughts and the pediatrician suggested we take Nicholas in to see an ophthalmologist for their opinion. Nicholas had previously been to this ophthalmologist when we noticed that his pupils were two different sizes. This doctor specializes in working with children with neurological disorders and eye issues. He's the one who determined that Nicholas's pupils were just a variation of normal.

Mike was able to get in very quickly (the next day) to the doctor who ran a multitude of tests. He determined it wasn't a palsy of any of the nerves in the eye and when he checked the pressures inside Nicholas's eyes they were exactly the same as last time. The doctor explained that this is actually quite a common problem with kids with things out of the ordinary going on inside their brains. Since it is highly likely that Nicholas was born with some brain damage due to the size of his ventricles at birth, his brain has been very busy the past year re-routing pathways. As the ophthalmologist explained it to Mike, he thinks a new superhighway has been built near Nicholas's left eye and the pathway to his left eye has become a two lane road. As with cars, the likelihood that a significant amount of communication will be headed down a two lane road when a superhighway is near is slim to none, Basically, when Nicholas's brain re-built some of his pathways, they messed up the pathway to his left eye.

This isn't something that is overwhelmingly worrying at this point. Because he's still so young and his brain is still so dynamic, there are ways to fix it. But we need to fix it sooner than later, because what could eventually happen is that Nicholas's brain could decide the two lane road to his left eye receives so little traffic that it's not needed anymore. Then Nicholas could go blind in that eye. Nicholas and I had a talk before he left for his nose surgery on December 31st that we're trying to make 2016 a surgery free year, so I'm pretty sure this will work. He's wearing a patch on his right eye for three hours each day for the next six weeks and then we'll follow up with the ophthalmologist. Hopefully the additional requirements on the left eye will strengthen the muscles and beef up the pathway and everything will be resolved. If not, we could be looking at surgery to fix it. It's a minor surgery, but obviously we'd like to avoid that if possible.

Either way, he's about the cutest little pirate you'll ever see!