Hydrocephalus Association WALK

Hydrocephalus is not a well known condition. Unless you've met someone who was willing to talk about it or you know someone who has been diagnosed with it, the likelihood that you're aware of it is slim. Certainly Mike and I along with our families (with the exception of my nurse sister) had not heard of it until halfway through my pregnancy when Nicholas was diagnosed. 

After he was officially diagnosed, the first thing I did was try to reach out to a community. A group that knew what this was, what the prognosis could be, people who had walked in these shoes before. I was disappointed to find that there wasn't really a community local to central Florida. I found groups on Facebook that have been helpful, albeit faceless. I wanted a support group, to look someone in the face and see my potential future. To hear the best and the worst of this world I was now facing. We have had tremendous support from our families and friends. We have prayers from around the globe. When Nicholas winds up in the hospital we get messages and texts and phone calls and offers of help. And each and every one of those is felt and appreciated and held close to our hearts. It would be helpful to also have a place to sit down with other parents or people with hydrocephalus and say what we see and hear what's worked for others. To have someone know that while in most babies crankiness and refusal to eat probably indicates something benign like teething or maybe an ear infection, your heart is terrified that in your hydro baby it means a shunt failure and your child may be in brain surgery tomorrow. 

In my research I ended up finding the Hydrocephalus Association. I devoured their educational material. I read each and every success story. I sobbed watching the video about the woman who has had 20 revisions in her 25 years of life (that's 20 brain surgeries!) and whose fiancé stood right by her side as she underwent each of them. And I learned about the Hydrocephalus Association WALK. I became excited because what better place to meet the hydrocephalus community than at a walk! I searched several times and didn't find a walk scheduled in central Florida. I ended up sending an email to the address listed on the page asking when (or if) a walk would be scheduled in central Florida. A few days went by and I finally received a response that a WALK hadn't yet been started here but if I were interested in volunteering to start and chair one they would love to talk to me.

At first I laughed. Me. A full time job, a pre-schooler, and twin babies, one of whom has medical complexities. But the more I thought about it, the more I thought why not me? Often a change starts with a single voice or a single step. This is a major metropolitan area and happens to have one of the best neurosurgeons in the nation. He does over 200 shunt placements a year. Clearly there is a community here of hydrocephalus warriors, why couldn't I be the first person to take a step towards uniting us? 

When the event chair from HA called me, I listened to her closely. She explained that of the 35 WALKs nationwide, 100% of them are completely volunteer driven. The WALKs bring in approximately 50% of the Association's annual revenue which goes towards funding research for better and more effective treatments and hopefully eventually a cure. The HA provides training and helps you along the way, but the volunteers bring the walk to life and keep it running. The HA has long wanted to bring a WALK to our area but since it's volunteer driven they needed someone to commit to bringing it in and they haven't had that yet. She told me that if I was interested in getting more information after our conversation she would email me a more detailed description of everything the chair would require. She warned me it would likely be overwhelming and it was designed to come across that way because, though it was very doable, it was a commitment and they wanted us to know that. I agreed to receive the information and look it over. As I read it, rather than become overwhelmed, I felt empowered in the face of a condition that has left Mike and I feeling powerless at times. If I could help just take that first step towards getting this going, I could be part of a force that may eventually make it so no other parent had to deal with this, or no other child had to watch a parent develop this. 

Beyond just that, what a fantastic way to help bring together the hydrocephalus community! Perhaps there could be support groups offered, help with understanding hospital bills, a volunteer translator who goes along to doctor appointments and makes sure the parents or patients understand. The possibilities are endless. 

We have met several people who have hydrocephalus or are parents of children who have hydrocephalus since Nicholas was born. These are all people yearning to meet others in our shoes. 

Provided everything goes smoothly, the HA is shooting for a fall 2016 WALK in central Florida. Keep an eye out for updates!

Noggin Update and a Special Brother

Nicholas had his appointment with the orthotics company that will be making his cranial band yesterday. It was more of an introductory appointment in order for them to determine just how great his need was and also to gather all of the information they will need to get the pre-authorization from our insurance company. Mike said it was a lot of measuring and pictures and a questionnaire for parents to fill out. One of the questions that the parents were asked to answer was on a scale of zero to five how great do you believe the severity of deformity does your child have - where zero is no deformity at all and five is the most severe. Mike answered four to that question. After he was done measuring and taking pictures, Mike asked the expert what he would have answered on that question for Nicholas. The answer was that Nicholas was definitely a five. And that he was the worst head deformity the expert had ever seen. For someone in the business and who makes cranial bands all the time that was a slightly disheartening piece of knowledge. 

The good news is that we don't know just how successful this will be. We were told the band should be able to help with the flatness in the back of his head but they aren't sure how successful it will be in removing the cone shape at the back. Hope for the best and prepare for the worst seems to be the motto we live with Nicholas and he honestly has surprised us most of the time by landing on the better side of the equation so we will just step back right now and hope that this helps him. 

They have also asked us to cut his hair since he has so much of it. I'm a little sad that his first haircut will be at 6 months old but if that's what he needs to be better then that's something I'm willing to do. 

I recently took Zach out to a fun place to play since he doesn't always get to have so much fun between therapy and doctor appointments, hospital stays, and other things that revolve around having a child with high medical needs. When we got there, he was the only child (besides his siblings) there to play. About 20 minutes in, another child and his mother came in. I was playing with the twins in the baby area and Zach immediately approached the other child to play. They engaged in games and both had no problem running with the other's imagination. They were dinosaurs, and race car drivers, and train engineers, and running from snakes. After they had been playing for awhile the other child's mother approached me and asked if Zach had other friends or someone in his life with autism. I answered that he did not (to my knowledge). She looked shocked. She said he's so good with my son. She told me that Zach was the first child he had actually played with. She explained that he usually played next to other children but she had never seen him engage with another child the way he was doing with Zach. I'm not sure if he's just more sensitive, if he is meant to work with special needs children, or if maybe he just clicked with this child but Zach seems to have an ability to see beyond a "disability" and just see the person. Again I hope that's a kindness and a skill that he carries far into adulthood. 

 

Under Construction

Nicholas has had a lot of focus on his head his whole life. The reason is obvious, he has a condition that requires a little more maintenance than the average noggin. As his ventricles have been draining since the shunt was placed his second day of life, we have watched his head begin to take a concerning shape. While the size has reduced drastically, he has taken on a cone shape. 

The first time we discussed the shape with the neurosurgeon, it was determined that his back ventricles still had extra fluid and his brain was growing so there was nowhere for the fluid to go but push out against the back of the skull. This began the frustrating Easter hospital visit when the shunt was turned down drastically and Nicholas had a poor reaction. 

Nicholas's pediatrician and his therapists had all mentioned to us recently that they thought it was time to start considering helmet therapy. His therapists have mentioned that they believe that he is having trouble holding his head up in part due to the shape of his head since it is off balance. Certainly the size has a lot to do with it as well, but they feel that it doesn't help to have it be so misshapen. He is also having difficulty rolling over, though he's trying very hard, again due to the cone shape. 

Last week after a discussion with his neurosurgeon's office to get on the same page, it was decided that we would move forward with putting a helmet on Nicholas. The official term is cranial band therapy. We were preparing for a fight with our insurance and were pleasantly surprised to not find one and he is scheduled for his measurements on the 15th. 

We have been warned that there has been very little research done on putting helmets on hydrocephalus patients so the neurosurgeon's office is not sure that the helmet will be successful in reshaping Nicholas's head satisfactorily but we decided we would rather try and fail than not try at all and either always wonder if it would have helped or end up having to make him go through another surgery at some point in the future. That's not outside of the realm of possibility of course, but hopefully this can help us avoid it. 

Here We Go Again

When Nicholas had his hospital stay a month ago, we had been asked if we had ever noticed his pupil sizes were different. We really hadn't, and at the time figured that, with as many medical professionals as he had involved in his care, someone would have noticed that before a hospital stay. It was eventually decided that it was likely a side effect of the pressure changes from the big change in the shunt and that it should resolve itself.

Saturday morning, I was rocking Nicholas back and forth in my arms because he had been very fussy the whole morning and he was staring up at the ceiling. I noticed that he was tracking something on the ceiling with his eyes but that when I moved him to a certain spot, his eyes would sort of jerk back to the center. It was a very rough movement and I was a little concerned and decided to watch it. We ended up going to lunch and Mike noticed while we were there that his pupils were still different sizes (they've not been the same size that we've noticed since the last hospital stay) but that the sizes were very pronounced. One was very small and the other was very large. We googled (you should really never do that!) and found that one of the main symptoms of a brain bleed is different sized pupils. That combined with the fussiness got us a little worried.

We called the on-call pediatrician who asked us to call the on-call neurosurgeon (NSG). The NSG who had placed Nicholas's shunt actually ended up being the on-call this weekend in a stroke of luck. He told us that if our guts were saying to get him checked out, he agreed with us and suggested we head to the emergency department.

We got to the ED and the doctor came into our room almost immediately to check his eyes. She stated that one of his eyes was reacting sluggishly and was slow to constrict under light. She asked if he would need sedation for a CT, we confirmed he did not, and the nurse whisked him and Mike off to Radiology. About an hour and a half after he returned, the new doctor (somehow we always show up during shift change!) told us that while they hadn't seen anything worrisome, they wanted to admit him overnight for observation. They brought us upstairs to the Pediatric Intensive Care Unit (PICU). We asked why he was being admitted to intensive care and were told that because things can go from fine to terrible in a very short time due to his medical complexities, they wanted him under the care of a higher level unit just in case. Made sense to us.

Early Sunday morning, the NSG came in to see Nicholas before I got there (Mike was there having spent the night and getting almost no sleep). He confirmed that the shunt was working perfectly as far as he could tell but that he was wondering if Nicholas was having some seizure activity. We had been warned even before Nicholas was born that people with hydrocephalus are at higher risk for seizures and so we were not surprised by this. Worried, of course, but not surprised. The NSG suggested to the floor PICU doctor that they consult in a neurologist and order an EEG to see what was happening.

The neurologist ordered a standard EEG. I had never seen an EEG before, but it was a little unnerving to watch. First, they measure his head to determine where to place the leads. Then many leads are "glued" to his head and once those are all placed, gauze is wrapped around the leads to make sure that nothing moves. The first part of the EEG involves placing a strobe light very close to his face and strobing at varying speeds. Essentially, they are trying to force a seizure to happen so they can catch it on the monitors and the neurologist can determine the best method of treatment. Nicholas actually loved the strobe lights. He was very upset when he started the test but every time they turned on the strobe lights, he stopped crying and just stared at the lights.

We had to wait for the neurologist to read the results. Once he read the results he came and met with us. He ended up meeting with Mike because I wasn't there, but we found out that there had been no seizure activity whatsoever on the EEG! Fantastic news! Mike asked why the pupils were different sizes and the neurologist said that's actually a variation of normal and that sometimes you can see it more prevalantly from a certain angle or in a different light. We asked why the pupil had been sluggish and the neurologist said that he couldn't answer with 100% certainty but that he wasn't concerned because since being admitted, his pupils had been equally reactive, so they were unable to duplicate what the ED saw. The theory he came up with was that he believed Nicholas's shunt may have turned on and that's why the size difference was more noticeable and likely also caused the sluggishness.

We also asked about looking for seizure activity in the future. The neurologist stated that in the vast majority of hydrocephalus cases that he has observed, if the patient was going to be prone to seizures, it would happen almost immediately after the shunt placement. Since Nicholas has had the shunt for almost 5 months and since they did everything they could to try and force a seizure and he hadn't had one, he felt like we were in the clear for seizure activity in the future. Good news for once!

With both the NSG and the neurologist deciding that Nicholas had no issues that required intense follow up care, Nicholas was discharged. We were told by his nurses that they loved him but they really didn't want to see us again and we echoed the sentiment.

7 Years Ago

Seven years ago, I stood in a room with my sisters, my mom, and my two best friends. I was surrounded by excitement. A hairdresser appeared and with what seemed incredible speed, got five ladies' hair done up. Bridesmaid dresses donned. A garter. A big white dress. Photographer taking picture after picture. A walk down an aisle with my dad at my side to meet you. We stared into each other's eyes and proclaimed our vows to each other. We promised to love each other forever. We promised to stand next to each other through good times and bad, sick times and healthy. We were so in love. We were so excited to start our life together. We went to a party and ate cake, delicious food we had sampled months ago, danced all night long, and then the next day we were off to an exotic destination and just enjoyed being married.

Seven years ago if you would have told me that our vows would be put to the test over and over,
I wouldn't have believed you. If you would have told me that being married meant you sat by my side while I threw up everything I ate for four months straight through two pregnancies I would have thought how unromatic that was. Seven years ago if you'd have told me that sometimes the most kind and romantic thing we can do for each other is let each other sleep in on a Saturday and keep the kids quiet so you don't wake up, I would have laughed at you. Seven years ago I would have never understood how much it meant to have you as my rock when we were told they couldn't find the heartbeat. Or when they said something is wrong with Twin B. You don't think about those things on your wedding day.

Seven years ago if you would have told me that I would feel more joy at hearing that the pregnancy after the miscarriage was "a happy, healthy, normal pregnancy" than I knew I could feel, I would have scoffed. Seven years ago I couldn't have understood just how difficult it would be to be infertile and to realize it's a journey and a battle that we had to go through together.

Seven years ago I would never have understood just how much joy and love there is in sitting at home together on a weekend night and cuddling while watching TV. Listening to the sound of our kids breathing while they sleep. Knowing that the fact that we fell in love brought these three fantastic humans into this world. Seven years ago, I knew I wanted kids, but I never realized just how much more I would love you seeing you as a father. Watching you make silly faces at Emily, or hold Nicholas in the hospital to keep him from being scared. Watching the pride beam from your face as Zach stands up in front of a crowd of people at his taekwondo tournament and does a great job. Seven years ago I loved you deeply. Seven years later, I love you so much more.

I never understood exactly what shaped a marriage. It's the highest highs, the lowests lows, and weathering them together. It's being frustrated by something you do and then choosing to forgive and move on. It's laughing together, fighting and making up, creating a world where our children and our marriage can thrive, and sometimes, just hanging on by a thread. It's being a rock when the other is weak, and being comfortable to be vulnerable enough to be weak when you need to be. It's learning how to communicate, and learning how to say I'm sorry. It's holding hands in the car or being the one to get up with a crying baby in the middle of the night so the other can sleep. It's inside jokes. It's standing with one another against difficulties, it's weathering the storms by huddling together.

Everybody Wins

For knowledge purposes, Zach's school is a member of the American Taekwondo Association (ATA) and the ATA has a program for small children called the Tiny Tigers, for ages 2-5. The Tiny Tigers learn the basics of martial arts - forms, weapons, board breaking - but are placed on an achievement system designed to keep them entertained and excited. Instead of earning a green belt tomorrow, Zach will (hopefully) earn his Ara belt. Ara is a turtle. The belts have the designs of the animals on them (the Ara belt looks like a turtle shell), and when the students advance, they earn the new belt, a t-shirt with the new animal on it, a headband to tie around their heads and a stuffed animal in the shape of the animal they learned. It's all really exciting and motivational for small kids.

Last week I overheard a discussion about the tournament at Zach's taekwondo school about how the medal systems were handled. It was discussed that it was inappropriate for all of the Tiny Tiger students to receive a medal for participating because in the real world you don't get rewarded every time, you have to earn your rewards, and only one person gets the job, not every applicant.

I actually agree with this to a certain extent. I think it's part of my job as a parent to not only teach my children to win gracefully but also learn how to lose. They will not win everything in their lives that they attempt. Someone else will get the job. They may not get into the college they want. They may go to a taekwondo tournament and not place. It happens. It's part of life. And they need to learn that.

I disagree, however, with the parent in question because I don't think that lesson needs to come at three years old. There are many many years in Zach's life for him to learn disappointment. Right now when he's just forming an opinion on this activity and right now when he's just learning how to practice to succeed, I think it is totally appropriate for him to be rewarded for his effort. I also think that it takes incredible bravery for a tiny little guy or gal (these kids are 2-5 years old remember) to stand up in front of a crowd of parents, other students, teachers from other schools, judges, and this weekend, leaders of the nationwide program and complete the things they have been practicing. It's loud in the room because there are hundreds of students on dozens of mats doing their competition. Parents are screaming in excitement. Judges are staring at them. And these kids get up there and do their very best. And I think that should be rewarded.

I also think it can only benefit these small people if they learn to taste success. There is a requirement that they actually get up and do the event. If they get nervous and back out, they don't medal just because they signed up. They have to actually get up and do it. If they actually do it and get rewarded for their success in standing up, it only makes them more likely to continue to practice and want to succeed in the future.

The reason that Mike and I like taekwondo (and this school in particular) so much is that it teaches the students to be good people first, leaders second, and winners third. It's not all about winning. It's about standing up for yourself and others, respecting yourself and others, and being someone who contributes positively to society. If that's not something to reward, then I don't know what is.

Besides, could you deny this cutie a medal???

On This Road

There's no way to describe the way you feel when the doctor tells you, "We see something wrong," while looking at an ultrasound. Your heart drops. You grasp your husband's hand, you stare at the grainy images they're showing you, trying to make sense of light and shadows. When those words "We see something wrong" includes the word brain, it gets really scary. A big long name for a condition we had never heard of. Hydrocephalus. Prognosis is typcially good. You cling to the word typically but live in fear of the atypical. Of the outliers. Of the ones who don't have a good prognosis. You vow to help him fight, to help him live the best life he can.

The day he's born. You barely see him before he's whisked off to be cared for by someone else. Your child being placed into someone else's arms. Someone else leaning in close and providing warmth. You're laying in a cold operating room with no answers. Your heart pounding, the worst case scenarios running through your head. Asking the doctors for answers and being told they have none yet. You'll get them they promise but not right now.

Standing in the NICU next to his bassinet and hearing "Not swallowing the way he's supposed to. Swallow reflex not working. Probably some damage to his brain. Hydrocephalus." Suddenly your vision of your future, and his, comes crashing down around you. The future you've always envisioned is raising happy children that leave and live lives with their own families, their own careers. Brain damage may change that future. Certainly you'll love him with everything you have forever, but that future may include him by your side for the rest of it. And what to do when your future ends but his keeps going? What happens then? Your resolve to fight slips a little. It's a scary time to hope, but what choice do you have? You start therapies. You agree to another surgery. You do everything the doctors and nurses tell you because it will help.

It's terrifying to go through. It breaks your heart because all you want is for your child to be happy. All you want your child to know is love and joy. And while you know that's not possible for his whole life, you'd really like to think it is possible in the first three weeks. And you feel guilty that your child has to know pain. And fear. And be poked and prodded. And x-rayed. And have ultrasounds. And have a PICC line placed. And you know that all of this is to help him. But he doesn't know that. He has no clue.

Then one day he does this.

And two days later he does this.

And you compare this.

And you start to feel sparks of true hope. And you start to allow yourself to consider that word typically again. Typically good prognosis. And you realize that what they told you in the NICU, "Nicholas hasn't written his story yet. He's writing it every day. There is nothing set in stone." is being proven to you by leaps and bounds. By a baby who doesn't know any better than to fight. And your resolve to help him fight that you thought you had lost? You realize it has been there the whole time and has become so ingrained that you don't have to think about it anymore. And you realize that nobody's future has been written yet and it is never never wrong to cling to hope.