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!

Success!

I remember getting the call. Mike was on the other line and he was so upset that his voice was shaking. Since he was just leaving a check up at the neurosurgeon's office, I instantly went on high alert.

"What's wrong?"
"The PA is refusing to prescribe a helmet for Nicholas."
"WHY?"
"He said he doesn't think enough fluid has left his brain. That there's not enough brain matter yet for a helmet to work."
"Turn around."

We had spoken to Nicholas's pediatrician. He had agreed that it was time for cranial band therapy. We had spoken to all of his therapists. They agreed it was time for cranial band therapy. Why would the neurosurgeon's PA disagree with everyone else? And what had he said that had reduced my normally even keeled husband to shake with anger and defeat? I told Mike that I was coming to the office and to wait there for me. He faltered - told me the appointment was over and it was probably too late - except that our next followup wasn't scheduled until after Nicholas was over a year old and by then it would be too late to start the therapy. I told Mike if I had to follow the PA or the neurosurgeon to their cars when their days were over I would sit and wait for them. I suspected that an upset mother is the last thing the physician wants in his waiting room full of patients, so we would be brought back pretty quickly.

I spoke to the receptionist and the office manager quickly came out to ask me why I needed to see the PA. I firmly told her that he was refusing to prescribe a helmet for my son and we needed to discuss his reasons. Not surprisingly, we were brought into a room fairly quickly and the PA walked in shortly thereafter. I asked him point blank why he felt that a helmet wasn't the answer for our son.

He gave reasons. Some of them were probably valid. I trust my son's neurosurgeon and his staff immensely. The neurosurgeon has literally been inside my son's brain, and the likelihood that he'll be there again before Nicholas ages out of pediatric neurosurgery is high. But they don't live our life. They get to go home and leave brain surgeries and other related issues behind them. They get to sit down to dinner and talk about things like school and the new HOA rules and what they're doing this weekend. So while the office is staffed with amazing people, their passion will never equal ours. It simply can't. I understand that. So while I have literally trusted them with my son's life, I was not going to sit by and let them make a decision lightly that had the potential to impact Nicholas's life forever.

His reasons included that there's little literature or research on hydrocephalus patients and cranial band therapy success. That it would likely be unsuccessful because the shunt was still working on the tedious job of draining his overfilled ventricles. That, sure, we would move the skull but liquid moves a lot easier than brain matter and so it would probably just move back. That he just didn't think it would work.

I looked this PA in the eye and asked him if it would hurt Nicholas. If it could hurt him. He said no, of course not. So I asked him why not just try? He said we could try when he's older and his ventricles are drained back to normal sizes. That he could have a cranial reconstruction surgery at that point. And, haha, he just happened to know a great neurosurgeon. We stared at him. I asked him why we shouldn't try something that didn't require surgery and that Nicholas would never remember and instead jump directly to a surgical procedure, further recovery time, and possibly something that would traumatize him as he's older.

Obviously you've all seen the pictures, so you know that we walked out of that office that day with a prescription in hand. That the next fight was with the insurance company to get coverage. That we won that battle too and that Nicholas's skull has been gradually been re-shaped by the helmet and a dedicated orthotist who shaves out pieces of the helmet and adds pads to help Nicholas's head become less flat and more symmetrical.

I previously posted that Nicholas was at 26 mm asymmetry when this journey started. That his was the worst case that the orthotist had ever seen. That the challenge of taking on a hydrocephalus patient was almost too overwhelming. And that it's working. The helmet is reshaping Nicholas's head to be less asymmetrical. While some of our goal was to fix his head for vanity reasons, the vast majority was that he was having developmental difficulties because of the head shape. He was having a hard time sitting up because one side of his head was heavier than the other. He was having trouble rolling over because he had a giant cone in the back impeding him. Last month's measurements showed Nicholas at 9 mm asymmetry.

Nicholas met with his orthotist today and measurements happened. Accounting for some human error, Nicholas's head now sits at 5-6 mm of asymmetry. A head is considered to be within "normal" ranges of asymmetry when it's under 5 mm. It worked. It worked exactly like we hoped it would. And without surgery. Without a traumatic procedure. Sure, he had to wear his helmet a little longer than the average therapy length of 3 months, but so what? He'll never remember that time. Clearly this was a fight worth fighting.

Changes

When I was in the training for the new WALK chairs in Charlotte recently, a chair of another WALK and I connected. We were sitting next to each other at dinner one night and talking about how hydro affects the lives of our loved ones and she asked me, "Would you change it?"

We're supposed to say no. We're supposed to say that we love every part of our kid and would change nothing. And you know what? Maybe there are parents out there that wouldn't, but for me, I say hell yes, I would change it in a heartbeat if I could. If I could have this same sweet amazing boy that we've got and take away the difficulties that hydrocephalus has brought and will bring to his life? I'd do it. Immediately.

Without hydrocephalus, he would probably be able to eat by mouth. We'd be off formula by now and working on learning how to use a spoon, fork, and sippy cup rather than focusing on how to swallow without flooding his lungs. He would more than likely be sitting on his own, maybe crawling, and probably be trying to keep up with his little sister who decided in basically one day that walking was the way to go. He wouldn't have already had three surgeries in his short 14 months and the likelihood of future brain surgeries (which is almost certain right now) would be slim to none. His biggest worries would be keeping up with a big brother who plays a little rough and a big sister who loves him so much she's constantly hugging and kissing him.

Would I change Nicholas's story so that it was without hydrocephalus? Without a doubt. The truth is, though, I don't focus on that. Because I can't. There's no cure for hydrocephalus and Nicholas was born with it. So we focus on making sure that hydrocephalus doesn't hold him back. That he will hopefully one day be able to safely eat by mouth. By getting him amazing providers who work with him so hard to get him to sit up on his own and one day crawl and hopefully walk. Who are teaching him how to use his mouth to say words. We watch intently for signs of shunt failure so we can get him help the second he needs it. We figure out the best way to store his medical supplies and teach care givers signs of shunt failure to look for and how to hook him up to an extension to feed. We learn the ins and outs of the medical world, and a whole new vocabulary. Revision, Mic-key tube, nissen fundoplication... We love him deeply and try to show him (and all of our children) just how loved he is. 

New Year, New Updates

I've been terrible about updating this blog, but I'll try to be better - especially with all the exciting things going on!

Nicholas is, and has been, very stable. (Knocking on wood right now!). We've had one hospital trip recently and it had nothing to do with his hydrocephalus and everything to do with a user (ahem mom) failure in trying to remove his g-tube button. I couldn't get the syringe inside the spot to release the liquid out of the balloon. I tried several times and since Mike wasn't home to try, I decided to just take it to the experts. The ER had the button out and fixed very quickly.

We have noticed that Nicholas has been having several breakthroughs recently. He's getting much better about sitting up on his own, if we stand him upright he will plant his feet down and straighten his legs until he's standing with assistance, he has started trying out words (ball! mama! dada!), and we've started to feed him baby food along with his formula through the g-tube so he can get nutrients from real food.

I was in Las Vegas for work about a week ago and Mike called me. He had just left the office after Nicholas's appointment with his helmet specialist. When he initially was evaluated, the asymmetry of his head was at 26 mm. At the meeting last week, Nicholas had gotten his measurements done. His asymmetry measured 9 mm. 9. Less than 1 cm of asymmetry. And, his head had gotten smaller than it ever has been before. The helmet specialist told Mike that if this trend kept up, he thinks Nicholas will be discharged from his helmet in April. This is the child the PA in the neurosurgeon's office wanted to not even give a prescription for helmet therapy for! He thought it would be pointless.

Other things -
I went late in January to my Hydrocephalus Awareness WALK chair training. I came back ready and willing to hit the ground running. I'm so excited! I have two fantastic co-chairs who are just as excited as me, we've already started garnering sponsors, and I'll be announcing our location and date within the next couple of days! If you haven't liked our page, please do so ASAP! You can also check out our WALK website or Nicholas's personal fundraising page. We'll be fundraising for the Hydrocephalus Association in his name for the WALK. People can join his team and fundraise for that team as well, create a new team to fundraise in someone else's name (or just a fun team of your making!), or WALK virtually if they can't attend the local WALK. Lots more information to come about helping out in that direction!

As for the other people in our family, Emily started walking about a week and a half ago. She took a few tentative steps and was at that point when I left for Vegas. By the time I got home, she was fully walking. It happened very fast. I was very worried because Zach was an early walker (he was pretty much walking by 10 months), but again I've been taught by my kids that things happen on their own timeline and when they're ready, it's go time. Zach is still doing fantastic at taekwondo, he has a tournament in April and he's going to compete in sparring for the first time ever. His instructor swears he's ready, and I believe him. Zach absolutely loves his sparring class. I have to admit I was really nervous for him to start sparring, it seems so violent for such a little guy. But, it's points sparring, so the idea for the match is to get points, not knock out your competitor. Of course, it's possible that he'll get kicked or punched the wrong way and get hurt, but frankly he could get hurt playing soccer or baseball as well, so we just learn the safe and right way to do things (learning defense is a HUGE part of class) and try to minimize the risk.

Again, I'll try to be better about updating the blog. I know that I've done such a terrible job lately.

Smelling Like A Rose

It wasn't well publicized on our social media accounts, so I'm sure it came as a surprise when Mike announced on Thursday, December 31st that Nicholas was at the hospital for a surgery. It was an incredibly minor surgery compared to the others that he's had, and so we just didn't post about it, I guess.

When Nicholas was born, we noticed that he had a cute little nose that ended in a cute little point. We speculated where that had come from, because as far as we knew, nobody in either family had a nose like that. We thought little of it going forward because, obviously, we had bigger issues at hand.

As Nicholas got older, the point began to round out and become more prominent. His pediatrician remarked on it, and said he believed it was a cyst in his nose. The consensus was to watch and wait. If we made it to his 9 month appointment without the cyst dissolving, he would refer Nicholas to a plastic surgeon and we could see what that doctor thought.

Nicholas's 9 month checkup came and the spot was not only bigger than ever, but now appeared to be straining against the skin of the nose. 

The pediatrician agreed with us that it was time to move forward with another opinion and a referral to the plastic surgeon was made. I took Nicholas to the initial appointment with the doctor and he agreed that it was likely a cyst but he wanted it removed sooner than later because he was concerned the cyst would run out of growth room and burst. At that point, it would become an emergency situation and could possibly become infected. The surgery scheduler was unable to schedule anything in January and the doctor wanted it done before February so an adult patient was bumped to a later time in the schedule on December 31st and Nicholas was given the first slot in the surgeon's operating schedule.

We became worried as time grew closer because Nicholas seemed to pick up a slight cold and was stuffed up. He also had an incident with his helmet where a significantly warmer than usual December (temps in the 80s!!!) made for a very sweaty Nicholas and he ended up getting either a fungal rash or contact dermatitis (the prescribed cream treated both so the doctor didn't worry about testing) on the back of his skull. We thought this may postpone the surgery, but luckily at his pre-op visit the doctor gave us the green light.

Nicholas and Mike arrived at the hospital at the incredibly early hour of 5 a.m. on December 31st. I stayed home with Zachary and Emily because we figured it would be easier for them to be home rather than stuck in a hospital waiting room for hours. Zachary woke up when Mike was leaving for the hospital and I was saying goodbye, so he got to say goodbye too and then cried because he missed Nicholas. Nicholas was brought back quickly and was taken to surgery right at 7:30. The doctor assured Mike it was a simple outpatient procedure and that he would likely be done in 30-40 minutes.

An hour and a half went by before the doctor came back out. As it turns out, the cyst was deeper than the doctor had initially thought, so he had to go deeper than he was planning. Also, once the cyst was removed, they found that the cyst had separated the cartilage that had made up the end of Nicholas's nose, so his nose essentially collapsed once the cyst was out. This required the surgeon to stitch three layers of 10 stitches each to rebuild Nicholas's nose. Then he had to place 8 stitches on the outside of the nose to close the incision (he had thought he would need 2-3 stitches before going in).

The doctor told Mike that he was sure it was just a standard cyst and that he felt confident that he had removed it all, but that it was always possible a small piece was left behind so we needed to watch and see him again if it appeared to be growing again. The cyst has been sent off to the lab to be tested and make sure that it is nothing else. Hopefully we will have the results of that test when Nicholas goes to his post-op appointment on Wednesday and gets his external stitches removed.

Hopefully we can make 2016 the year of the surgery free Nicholas!