2023

Shea is wise beyond his years and continues to lead the way for our family. There has been no shortage of updates to his health this year, but we are taking it in stride. We keep learning more about what makes him so unique, but all this comes at a price (countless imaging, sedation, hospitalizations and second opinions). While we wouldn’t want him to be anyone but himself, we desperately wish we could take this all on for him. Below is a note from our sister and auntie extraordinaire, Nikki:

“This year, Shea has been forced to endure previously unimaginable medical obstacles and procedures. Unfortunately, the year isn’t over yet. This December, Shea will be admitted to the hospital yet again to undergo a rather challenging surgery, one that requires much planning. Erin and Pieter have been advised to expect a long recovery period for Shea and will be doing their best to focus on family time together. They only hope Shea will be feeling well enough post-surgery to enjoy his birthday at home.

Many people have been checking in and asking how to help - thank you!  We appreciate your love and support for Shea, Holly, Tatum, Erin & Pieter.  Here are a few ways to send love and support their way.  Being a part of the Berger’s lives and checking in on them does them so much good and they are exceedingly grateful. Please don’t stop! In lieu of a meal train (as eating will be a challenge for Shea post-surgery and Erin and Pieter can’t stand the thought of eating in front of him), we have put together a wish list of things that we hope to use to brighten Shea’s day, offer his sister’s comfort and give Erin and Pieter the strength to tackle each day. Once they are recovering at home, gift cards to some of their favorite places, such as Trader Joe’s, Thrive Market, Sprouts, Islands and Panini Kabob Grill, will allow them to focus their attention on Shea’s recovery and being together as a family.

Please use this Amazon Wish List.  Items will ship straight to the Bergers.  If you would like to drop off gift cards and/or notes, feel free to reach out to me and we can coordinate from there.

Thank you for being a part of Shea’s journey and most importantly, providing the support to Erin, Pieter and family.”

Much love,  "Auntie" Nikki

2022

While we’ve purposefully chosen not to update this blog, know that we immensely value your love and support. What you need to know: Shea is just about done with his kindergarten year. He enjoys school, swimming, baseball, legos, Star Wars and everything in between. The frequent medical appointments haven’t stopped, but he continues to take them in stride. He gets headaches and/or stomach aches more than he’d like, but we continue to learn. We continue to advocate for better treatment options.

Believe it or not, our 4th annual WALK to End Hydrocephalus is just 6 months away. We'd love for you to join Surf 4 Shea on Saturday, October 15, 2022 back in Huntington Beach! Whether you can make it in person or not, we value your support and there are so many ways to get involved. Our team has been incredibly successful the past three years and we have you to thank. Here's how you can help:

Sign up - Come walk with us on October 15th. If you can’t make it, you can still sign up virtually and continue fundraising efforts. Regardless of how you participate, know that your participation gets us closer to better treatment options for Shea and so many similarly situated. 

Spread the word - Email your friends. Make an instagram bingo card. Set up a lemonade stand. Change your AmazonSmile to credit Hydrocephalus Association. Get your company or team involved. Start your own fundraiser.  These are some of the ways we have felt your love and are incredibly grateful for your thoughtfulness. It gives us the strength to keep going. 

So, here we go!

Love and hugs,

Pieter, Erin, Seamus, Hollander + Tatum  

change of plans

As the world’s response to the COVID-19 pandemic evolves, so must our efforts in achieving a cure for hydrocephalus. With much consideration, we have made the decision to pivot our walk from in person to virtual. The health and safety of our participants and volunteers is of the utmost importance.

Our Surf 4 Shea community will be continuing to raise awareness for hydrocephalus with a fundraiser to take the place of the walk on 10/16.

Join us this Saturday, October 16th from 2-8 (or until food runs out) to enjoy B's Rollin' Barbecue at Dueling Ducks Brewing Co, all while supporting good people and continuing to raise money for hydrocephalus research. Grab food and drink to go, or stay awhile. Either way, you won't be disappointed.

Both businesses are run by our dear friends: B's Rollin Barbecue (Eric and Beth Burnell) and Dueling Ducks (The Kause Family) and we are so fortunate to have their support. Their websites are below.

Address: Dueling Ducks Brewing Co: 3150 E. La Palma Ave (Suite G), Anaheim, CA 92806 (https://www.duelingducksbrewing.com/)

B's Rollin' BBQ (https://www.bsrollinbbq.com/)

Grateful for your ongoing support,

Erin + Pieter

2021

Save the date: October 16, 2021. As of now, we are moving forward with our 3rd annual WALK to End Hydrocephalus in person. While all of this may change, we are planning accordingly and will keep you up to date as we hear more information. Every level of participation is valued so please participate at your comfort level.

While last year’s event transitioned to a virtual platform, it was just as impressive as our inaugural walk. Thank you to those who participated and an extra special thank you to those who chose to complete an activity #4shea.

Whether the walk is in person or virtual, the need for fundraising and awareness remains. Team Surf 4 Shea has been created and is open for business (*sign up under the tab ‘get involved’). Special thanks to our returning sponsors and friends: Arbor Dental, CHOC Neurosciences and Pau Maui Vodka. If you have or know a business who may also be interested in joining them, please let us know. The more the merrier!

virtual

2020 has been filled with so much change and many challenges along the way. We want to embrace these changes best we can; therefore, we have made the decision to go virtual with this year’s hydrocephalus walk. We truly feel it is in the best interest for all of us. Pieter and I recently heard a hydro dad comment that we are one group that may be more prepared for this pandemic than most. His intention is that we already live with the daily concern and unknown that goes along with shunt malfunctions, and we’ve adapted to the travel restrictions and intentional social distancing that come along with our children’s health, but must persevere. We have found ways to live, and this event will be just that, another way to spread awareness and fundraise in the midst of a pandemic.

That said, Orange County will no longer be having a WALK on October 10, 2020 this year. Instead, we are joining the national organization in their virtual WALK to end hydrocephalus. Consider this a movement instead of a walk. We are encouraging everyone to choose something they enjoy doing or challenge themselves to do and raise awareness for hydrocephalus by encouraging your network to donate to our cause. You may choose to walk, run, dance, nap, or juggle for hydrocephalus. The possibilities are endless. It may come as no surprise to you that Pieter will be incorporating something we’ve always wanted to do, #surf4shea, by surfing once a week for the next six weeks. (We chose six weeks simply because it allows us to devote time to hydrocephalus before the newest addition to our family arrives. You may choose a ten day stretch, something shorter or something longer.) Shea and Holly, on the other hand, will swim #4shea by making sure they’re swimming frequently during this time. While we post our movement, we will incorporate hydrocephalus facts + awareness. We will be making a mindful effort to post on social media and keep up the momentum. We will be using the hashtag #4shea to incorporate anything you may choose to do (i.e. swim #4shea, bike #4shea, sing #4shea) AND #hydrostrong to connect us to the national movement. We hope everyone can share something they love doing #4shea.

The website will work the same way it has in previous years. You can join our team (surf4shea) under the GET INVOLVED TAB, by selecting WALK. Simply click the ‘Join Surf4Shea Team’ button and ‘Join Team’ on the next page you are directed to. This larger movement with conclude with a celebration that will take place on September 26, 2020. We will be joining walks all over the states to celebrate all things hydrocephalus and our accomplishments in the midst of the pandemic, virtually. Be sure to join the Orange County Hydrocephalus Association WALK Facebook page and follow along our social media accounts (@surf4shea) to keep up with the latest.

There will still be several opportunities for sponsorship and fundraising. Shirts will still be distributed; however, this year, they will likely be picked up in September in a parking lot TBD. Additionally, a possible silent auction in the works - items are always greatly appreciated. Videos and photos are encouraged. Emails to friends and family are the sprinkles on top. We know it is a challenging year for many, but we are committed to spread awareness and continue our fundraising efforts in a different format for the greater good.

Per usual, we got this!

Love + hugs,

Pieter, Erin, Seamus, Hollander + Baby #3

2020

We couldn’t be more grateful for the success of our inaugural WALK to END HYDROCEPHALUS in Orange County back in October. We’ve been praised for having the MOST successful walk in the country for 2019. We can’t stress enough how thankful we are for all of the support. We are excited about what may transform from this fundraising and awareness.

We realize we haven’t updated everyone about Shea’s health in a while, but know this has been intentional. As technology continues to change and Shea continues to grow, we are conscious that Shea gets to read all of this one day. While we are living this with him, it is his story to tell and share if he chooses.

That said, he’s been relatively healthy this year and we are so incredibly grateful for that. It sure beats the nine rounds of antibiotics he was on last year! We continue to long for the day his age surpasses his surgery count, but for the mean time it currently stands at age four, with five surgeries and one more anticipated by the end of Spring. His hydrocephalus continues to be monitored with annual MRIs requiring anesthesia. He continues to conquer weekly therapy sessions and doctor’s appointments and does it mostly with grace. When you add it all together, he easily surpasses 200 appointments a year!

As for WALK news, SAVE THE DATE for the 2nd annual WALK to END HYDROCEPHALUS in Orange County for Saturday October 10, 2020 (10/10/20). It will be at the same location, in Huntington Beach. The site is up and open for registration. We have started our Surf 4 Shea team, so please join! You can join under the ‘GET INVOLVED’ and drop down to the ‘WALK’ tab. Stay tuned for more information as we get closer. Per usual, we would love to have everyone there! We are always in need of help, especially with fundraising and sponsorship. If you have any questions or ideas, don’t hesitate to contact us through the ‘CONNECT’ tab.

inaugural OC walk

Hydrocephalus. We think about it daily. It’s not a matter of if Shea will have another brain surgery, it’s when. Shea made it through a brutal flu season with a frightening amount of antibiotics and an ER visit to rule out shunt failure, only to rejoice at the news that it was influenza. I realize it’s absolutely ridiculous that we’re finding joy in an influenza diagnosis. I recently caught up with another hydrocephalus mom and found out her son was able to get his shunt removed. I was thrilled. Perhaps, so thrilled that I forgot the magnitude of our conversation. This mom quickly reminded me of just how ridiculous hydrocephalus is. I was happy that her son experienced shunt failure and endured another brain surgery. Ridiculous.

Surf 4 Shea was started to bring awareness to the condition; fundraising has been the icing on top. Pieter and I have had several discussions about what our “Surf 4 Shea” event may look like one day and we simply have not found something worth getting excited about. That is, until Hydrocephalus Association approached us about starting a Walk to End Hydrocephalus in Orange County.

You all know we can’t just pass on the opportunity to make this something special. We’ve been so fortunate to have support that runs deep and we can’t wait to share this latest adventure with our community. We would love nothing more than to have you there with us! So, save the date: Saturday October 12, 2019 in Huntington Beach (Huntington St. + PCH). Under the “Get Involved” tab, you will find our WALK page where you can join our team (http://support.hydroassoc.org/goto/seamus). Spread the word + get pumped.

connected

September has always been special to us, but it is quickly becoming our favorite month of year! September is hydrocephalus awareness month and we would love to have you join us Saturday, September 8th in Redondo Beach for the annual WALK to END HYDROCEPHALUS. Sign up under the 'Get Involved' tab and join Surf 4 Shea!

Over the past few months, we have been able to connect to both our CHOC and Hydrocephalus Association communities through CHOC walk and HA Connect.

This was our first CHOC walk experience. It was amazing and at times overwhelming seeing just how much CHOC impacts and continues to serve our community. We owe so much to the CHOC staff and physicians who have been and will continue to be by our side for quite some time.  The true spectacle was watching Shea take it all in, growing particularly fond of Disney characters. 

We recently attended HA Connect, the National Conference on Hydrocephalus. This annual event is held all over the country and this year just so happened to be held just down the street in Newport Beach. As eager, first time attendees, we bought all access 3 day passes with lofty goals of attending lectures and Q + A sessions to learn as much as possible about Shea's condition. We must admit we did not get to as many sessions as initially hoped to; however we came away with several truths worth sharing. 

Truth #1: We are very well taken care of at CHOC. After hearing other families talk and ask questions, you quickly learn that Shea has the best treatment from one of the best neurosurgeons in the world. Shea's neurosurgeon, Dr. Michael Muhonen, was a lecturer and helped kick off the entire weekend. He is clearly a leader in his specialty and we are so lucky to have him in our lives, walking and educating us along the way. Erin and I could have easily answered most of the Q + A session we attended for young families and we owe that to CHOC and Dr. Muhonen. We are in good hands. 

       Shea's annual MRI

Truth #2: Hydrocephalus research and treatment is so young. It is a remarkable and emotional feeling sitting in a room full of world leading specialists discussing a condition that your 2 year old son is living with and most sentences finish with " .... we just don't know." We attended a 90 minute session on research and treatment and the word 'cure' does not get mentioned. It is hard not to be discouraged. It is hard for researchers to look across patients and find trends when treatment is not even uniform across the board. However with that being said, there were some very exciting avenues that are being explored that could change Shea's life dramatically. One of the items is a medication being developed to slow down fluid production during shunt failure. With less fluid building up applying pressure on Shea's brain, the window between shunt failure and emergency brain surgery would extend. 

Truth #3: Shea is currently thriving and we couldn't be happier for him or us. Unfortunately, it is far too noticeable how much he is thriving among those living with hydrocephalus. It is even scarier thinking about how fast that could all change. There is not a day that goes by that we don't think about hydrocephalus and Shea's shunt.  We continue to count our blessings each and every day. 

our tour guide

Recently some good people in our lives turned us onto the website Littlest Warrior where we found a short essay titled "Welcome to Holland." It is all about the feelings and emotions behind raising a child with a disability or challenge. With an effort to preserve the integrity of the essay, please see the complete read below:

WELCOME TO HOLLAND
by Emily Perl Kingsley  

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Do you ever get that feeling when you say to yourself, "I think that the homily was written just for me?" With the recent birth of our beautiful baby girl Hollander (and our Berger Dutch roots), it felt like the above was written just for us. Shea has become our tour guide. 

The above is a great read but it really only just scratches the surface of the emotions and feelings behind breaking through the adversity of raising a child that requires a team of specialists. As a parent, all I want to do is equip our son with a tool box to tackle his wildest dreams, but there are those moments when you are told his wildest dreams might have to exist within certain boundaries. Leveling moments yet at the same time, the parent and believer inside us comes out screaming I can't wait for the day when our Shea dude proves them wrong. Regardless, Erin and I are fulling grasping the concept of being Shea's biggest fans. 

In recent months our Shea dude is taking on new and fun challenges (no influence from his father...ha). The boy can't stop kicking the soccer balls & beach balls in the backyard. He rides his scooter everywhere, colors like crazy and barbecues for us daily. 

All of the above has been so fun and enjoyable to watch as a parent. However, hands down the best challenge and most fulfilling to watch (well let's be honest, it has been the coolest interaction Erin and I have ever been lucky enough to witness)... is watching Shea be a big brother. Shea loves his Hollander and man does Hollander love her Shea. And to think that this is just the start. Erin and I are so lucky. 

People ask us all the time what it's like to live day to day. To frequent doctor's offices practically every week. To know that Shea's shunt could fail at any moment. To not know what his vision truly is or will be. To know that he might have to be rushed into emergency brain surgery at any moment. To not know how his Hydrocephalus will impact his life...

Sure there is a lot of unknown, but with Shea as our tour guide, life is good. 

Surf4Shea

The past 18 months have been the most rewarding yet exhausting of our lives; we wouldn't change it for the world. We have learned more about ourselves, each other and every single thing about Seamus we can imagine. We've finally been able to put all of our passion for Seamus into a concept, Surf4Shea (www.surf4shea.com) to promote hydrocephalus awareness among family, friends and the greater community. Seamus loves the water, from watering plants to the pool, bath and everything in between. Pieter and I couldn't agree more and find so much peace and healing from water or the surf. Orange County does not have much in the way of hydrocephalus support, yet we have the best physician(s) for the job right here and the greater LA community model to build off.  Stay tuned for where this may go and our own events in 2018!

A few things have changed since our last post. For starters, we're expecting baby #2, a girl, in September! Seamus is growing into the role quite well, already demonstrating his protectiveness and helpfulness for me and baby. Our team of doctors have been incredible in guiding us through this pregnancy with sincerity and ease.  From my OB offering to keep a close eye on our little girl's development, to Shea's neurosurgeon volunteering to read our baby girl's ultrasounds, we are grateful.

Here's a little recap of the last few months in the life of Shea.

Eyes: Shea's surgery (from the last post) was successful; however, his surgery also over-corrected his strabismus, something that was likely to happen.  He is back to eye patching daily for about 3 hours. Additional surgeries are not out of the question, but for now we continue to monitor his vision with frequent visits to the ophthalmologist. We, especially this mama, are extremely grateful for Claudia, Shea's optician, who adjusts Shea's glasses what seems like weekly, allowing him to wear them like a boss. Shea's new specs come soon!

Ears: At the end of May, Seamus had ear tubes placed.  He has been seeing an audiologist to rule out hearing impairment for over a year now.  During his most recent visit, we were referred back to Dr. Camilon, his ENT, due to fluid build up and negative pressure in his ears. This surgery was as good as they come for our little man. By the time Pieter and I got to the waiting room to sit in the same seats where we had just been in March for his eye surgery, the doctor was there to let us know he was out. Our family is so fortunate to have our support system with us everywhere we go. As luck would have it, we knew our recovery nurse and had a special visit from Uncle Dude, my Uncle Bob who has been a gift to us, and the St. Joseph community.  Shea is as easygoing as they come with wearing his ear plugs in the water since surgery.  He knows that when his glasses come off, the ear plugs go in.

Allergies: Seamus was tested for allergies after breaking out into a rash with peanut butter. What do you know, he's allergic to PEANUTS, MILK and EGGS (okay, but seriously, can he get a break?!). He's adjusted to almond milk and Pieter and I have adjusted to navigating fancy grocery stores. It doesn't stop there. Shea had a couple reactions to various medications, so we will revisit that down the line. The good news is that knowing his allergies seems to have helped with his GI issues.

GI: We have discontinued all medications and are loving it! We have been told Shea likely has Eosinophilic (EoE), which is a chronic allergic/immune condition that inflames the esophagus. Shea was experiencing some GI issues from choking to constipation and fortunately, they seem to have resolved with eliminating his allergens.  We will continue to monitor, but likely be discharged from GI services and that we are ecstatic about (one less appointment every few months!).

Head: Shea had his 3rd MRI this past week. It is never easy watching Shea come out of anesthesia and it seems to get increasingly more difficult for him as he gets older and starts to understand the process, but we are happy to report he will not need to get another one done for at least a year (as of now) because of how great the results were.  Shea's neurosurgeon is pleased with how his ventricles look and even happier to hear how well he is developing. We seem to be managing his hydrocephalus. Now, we wait.

It's the little things that have meant the absolute world to Pieter and me.  It's walking to my cousins house to see her scrambling to remove all her magnetic toys or refrigerator magnets. It's showing up to a birthday party to see that your friends are only offering dairy free snacks to all of the children so it's not even an issue.  We truly can't thank you enough for thinking of us and our little man.  It allows us to worry less and enjoy more.  It provides Shea a safe, inclusive environment. These are the gestures that are helping us set Shea up for success so he doesn't have to constantly be told that he can't do something, eat something or play with something, ultimately feeling excluded.  He is one happy boy who absolutely loves the simple things. We are proud.

Love and hugs.

Pieter, Erin, Seamus and baby girl (i.e. princess, piglet) 

#shuntlife

March 1st has become an anniversary in our household that will be celebrated for years to come. This marked the 1 year of Shea's brain surgery and placemet of his vp shunt for hydrocephalus. Although still hard to even write the words brain surgery when referring to our son, this March 1st came in celebration, joy, and empowerment. Our little dude made it without any complications or shunt failures for his first year after all we heard about after placement of the shunt was that odds are high his first failure would occur within a years time. You better believe we celebrated this 1 year milestone with a great sense of pride. We are making this #shuntlife work.

A lot has occurred since we last posted. For example as we write this, Shea is back in his second surgery (and 3rd time of anesthesia) of his short 14 month life to correct strabismus associated with his right eye. This is routine surgery however no surgery feels routine, especially when your child is 14 months. It is a strange feeling though as we sit in the waiting room; the youngest couple in the room; the couple who has lived this before. We have become veterans in a world we wish we knew nothing about.

Surgery should last about an hour and a half. Recovery we have been told is pretty routine as he should take about 24 hours to get through simply the reprocussions of surgery. Outside of the first 24 hours he will not be allowed to enter the pool or ocean for 3 weeks... Haha, a daunting task for the Berger family. We got this!

Finally I want to take a moment and give some love to my incredible wife for not only being there for Shea and dad but she has also championed one of the toughest hurdles in this process: health insurance. Shea now has 7 specialists (neurosurgeon, GI, allergist, geneticist, ophthalmologist, retinal specialist, audiologist) on top of his primary care physician that are all seen pretty much on a quarterly basis (not to mention the optician and infant stimulation that are seen weekly). Take out the authorizations required to get into each specialist, coordination of time and scheduling is a full time job (yet she has one of those, too).  Shea dude receives great care and that does not happen by chance. Many people (you know who you are) have been very kind with their time and love in helping us through this. However none of this comes together without Erin's relentless pursuit of wanting what is best for Shea. Thank you to my bride.

As always thank you for your love and prayers.

The Berger Family

hope

The past month has brought new challenges, yet an even greater sense of hope. We attended our first hydrocephalus walk which was so much more than we had anticipated. We had the pleasure of meeting incredible families who immediately extended their support. Some of these families have been through just as many surgeries as birthdays (by age 7 and 9). It truly was something else to be surrounded by families who not only have been in our shoes but more importantly, are passionately doing everything they know how to work towards a cure.

The last few weeks have reminded us just how much hydrocephalus impacts our day to day routine. Shea had the expected flu symptoms but not much rhyme or reason to them. We go through the standard routine when this happens (i.e. play the symptoms out, if worse call RN and go from there). The first time this happened we did just that. I called the RN who thought in this case it was best to come in to see a pediatrician, who then could not definitively rule out shunt failure so off to the emergency room we went. Everything checked out great and we were discharged home in a few hours. Just three days later, different symptoms show up and we are back at the beginning. After going through the same motions, the pediatrician again cannot definitively rule out shunt failure and we end up back in the emergency room. This time they piled on more testing (CT of the head, shunt series X-rays, ultrasound guided IV (since Shea is "pudgy") and blood work). We left exhausted but relieved that Shea was simply sick.

It never seems to end for our little man. The X-rays ordered in the emergency department alluded to a "bubbly mass" in his abdomen. We are again grateful for our pediatrician who wanted to confirm this was not significant and ordered an ultrasound which we completed today and...low and behold...was negative! It's the little things. Today we got our first call that something was negative and it feels so good!

...and then there's Shea's dreamy blue eyes. After over six months of battling insurance companies for simply wanting the best care for Shea, we got in to see a pediatric retinal specialist at UCLA, Dr. Irena Tsui. There is nothing new to report but her explanations were calming and long awaited. We've known Seamus has macular atrophy in one eye but have been left with many unknowns. Up to this point, we've been led to believe the cause may have been due to a traumatic birth in which something ruptured in his eye (this has not been sitting well for this mama!).  Nothing is definitive, but Dr. Tsui suggested the macular atrophy appears more like scarring and to think of it as a birthmark. We remain hopeful that we will be able to continue following up with her (even if it's means we're up against insurance again!).

We are grateful for our health and support system . I'm particularly grateful for friends, family and co workers who understand priorities (Shea dude!!), Grammy who provides the best of the best for Shea in sickness and health, and Pieter who loves and builds us up.

Love and hugs.

Pieter, Erin and Seamus

walk it out

There is no question that Shea is thriving.  He pulls himself up, gets to where he wants to be and absolutely loves summertime.  He has swim lessons with Daddy weekly, and giggles with excitement at the beach.

He can now be spotted wearing his glasses and I'm sure it will come as no surprise to hear that he's already stopped several strangers in their tracks. While he gets plenty of compliments about how adorable they look on him, there is definitely a shock factor to seeing a baby in glasses. We've gotten many questions about how in the world we knew a 6+ month old needed them in the first place.

We are grateful.  We are grateful Shea's pediatrician ordered the initial head ultrasound. We are grateful his genetic work up was essentially negative, and we are grateful the work up included an ophthalmology appointment that has lead us to being proactive with his vision. The eyes were simply another incidental finding after the hydrocephalus (yet not related). Bottom line: Shea rocks his glasses and wins everyone over.

Aside from adjusting to some metal frames, it has been smooth sailing over the past couple of months for Seamus. We know our new normal consists of monthly eye visits and quarterly doctor's appointments with our team of specialists, but it no longer seems overwhelming.  Now we have our eye on the future.

Pieter, Seamus and I will be participating in LA's Hydrocephalus 5K in September. While there is no pressure to participate, you, our family and friends, have been our strength throughout this whirlwind and we would love to spend time with you. I attached the link below where you can register under our team, "Shea Dude".

http://hawalk.kintera.org/losangeles/sheadude

Love and hugs.

Erin, Pieter and Seamus

standing tall

June. A big month. Appointment #1 with Dr. Bocian to review Shea's blood work and full genetic make up. Appointment #2 with Dr. You, Pediatric Retina Specialist, to review any progression in Shea's macular atrophy. Appointment #3 with Dr. Muhonen, Shea's Neurosurgeon, to review Shea's fluid levels in his brain. Appointment #4 with Dr. Mody, Shea's Pediatrition, for his 6 month checkup. Appointment #5 with Dr. Whang, Ophthalmologist, where Shea will get prescribed his first pair of glasses. And finally, awaiting the scheduling of Appointment #6 with the Doheny Eye Institute to get a second opinion on Shea's macular atrophy...

It's exhausting just typing it out.

Currently we are 3/6 of the way there.

A lot was riding on our first appointment with Dr. Bocian. The blood work and gene testing would give us a very black and white answer if Shea's hydrocephalus is linked to something larger such as a disease or syndrome. The testing would also help us better determine the cause of the hydrocephalus. Not wasting anytime in the appointment, Dr. Bocian allowed us to exhale as her first words were that everything came back negative. A big moment... In addition, we learned that the cause of the hydrocephalus was not due to an infection during pregnancy but rather diagnosed as idiopathic. The biggest fear for us has been the unknown. We left the room that day and for the first time since our journey began, our family was actually able to leave with some answers.

Days after Appointment #1, we found ourselves where it all began, in our neurosurgeon's office. Dr. Muhonen could not have been more pleased with how Shea was progressing. An ultrasound showed that Shea's fluids had reached completely normal levels. Dr. Muhonen kept commenting on how happy Shea was. And as we walked out sharing nothing but smiles, Dr. Muhonen throws out there "now you can have #2." Haha in time....

Appointment #3, Dr. You dialated Shea's eyes to see if there was any progression in his macular atrophy. As we hoped, nothing had progressed. We are still on track with glasses but fears of potential blindness in one eye were ruled out. Shea was still showing a difference between the vision in his two eyes but the notion of how early we are detecting everything left the room optimistic moving forward.

Dang, so far we are batting 3 for 3. On route for a big June...

Shea is the man. He is all dude. He wants to grab everything, eat anything, and stand up whenever he can. It's crazy because everyone tells you how fast it goes, but Shea turned 6 months today. He has earned those 6 months and made the most of them.

Every night, we pray as a family together. It is the last thing we do before we place Shea in his crib. The last words we tell Shea before going to bed every night are to "no matter what, never stop smiling." Dude is listening.

Lots of love and smiles,

The Berger Family

what are the odds

Life is a game of odds and nothing is guaranteed. Leicester City just won the English Premiere League for the first time at 5,000-1 odds. For those of you who don't speak soccer, that is the equivalent of a AAA baseball team coming up to the Major Leagues and winning the World Series. Those 5,000-1 odds are the same for finding Elvis alive. Shea's odds of being born with hydrocephalus were 1,000-1. His odds of being required to have surgery and getting his shunt put in place stack up even higher. Currently we are awaiting test results that will tell us if Shea was born with conditions that are in the 10,000-1 range. We were lucky enough to get pregnant and even more lucky to welcome Shea screaming and crying into the world just over 4 months ago. At the end of the day, Shea is 1 of 1 and Erin and I would not change a single thing about him. Whether it is 1,000-1, 5,000-1, or 10,000-1, we will play those odds everyday of the week. Needless to say, I think that Shea was born to be a Leicester City fan.

We reached our 4+ month milestone, mom is back at work, Oma and Grammy have taken over care Tuesday to Thursday (I've got weekends), and Shea simply keeps smiling. Right now we are being good parents and following our orders leading up to a busy June where we will be seeing roughly 4 specialists along with our pediatrician, Dr. Mody. We started with an in house appointment with the Regional Center who will be helping track Shea's development and making sure he is hitting his milestones. Second came Shea's 4 month check up which went to plan as he received the standard vaccinations. And finally as part of follow up testing from our initial meeting with the genetic specialist, Dr. Bocian, Shea has been to a series of eye specialists as of late. Despite tracking well in all of his appointments, we have learned that Shea is far sided in one eye and near sided in another eye which will leave him doing his best Buddy Holly impression with glasses soon to come. The tougher item that has come up is that Shea has been diagnosed with macular atrophy in the paramacular location of his right eye. With little answers coming from the first specialist on what this all really means, we are in the works in attempting to find a second opinion. As we have for so much of this process, we keep enjoying the joy that Shea continues to bring us everyday. And if his actions could speak, Shea would be telling us that everything is going to be all good.

It has been 2 months now since surgery and our stay at CHOC. Life has changed and a new normal has become routine. But the one consistency throughout the entire process has been the love and support of our family and friends. We will never be able to repay all of you for the little acts of kindness that have made our days a whole lot easier.

A sincere thank you.

Erin, Pieter, and Shea

month one

One month since Shea's surgery. Dang...

Our baby is 3 1/2 months old and he has endured brain surgery, MRIs, multiple ultra sounds, drawn blood, genetic testing, countless appointments, and a tongue clipping. The hardest part of it all is knowing that this is just the beginning. Like mentioned in previous posts, this is simply our new normal. However like anything in life, it's so easy to allow challenges to distract what is right in front of us: life.... And life is good. Our little dude cannot stop smiling, laughing, eating, and growing. We were fortunate to spend some time in Newprot Beach staying right on the sand at 43rd Street. Shea did so well eating and sleeping I think he was trying to tell us oceanfront or bust!... We've got some work to do. At the end of the day, we get to be parents and fall head over heals over our child and we could not feel more lucky. Like I said, life is good.

Today marked our one month checkup with our neurosurgeon Dr Muhonen. Nothing you ever want in life unless you are an employee, but dang we know our way around those St Joes and CHOC parking lots... Our appointment begins with Shea simply laughing and smiling on the hospital bed for 15 minutes. Shea has given us no reason for concern leading into the appointment and our doctor confirms this speculation with an ultra sound. His ventricles and fluid levels are continuing to progress to appropriate levels. We get to leave the same way we arrived, smiling with our son.

It is Erin and I's belief that you should never build walls around life. Experiencing new people, places, and ways of life only helps us gain a more well rounded perspective of how we go about making decisions on a day to day level. One very tough topic discussed in our appointment was travel with Shea. Something that was brought up right away by our Doctor was shunt failure while traveling. Obviously not an ideal situation, but given Shea's unique condition we will need to always work into our plans a worst case scenario and how close we would be to reputable help. To put this into perspective one of the first places mentioned as not a great place to travel: Hawaii. Not everyone needs to be a world traveler. But to think that one day Shea could be restricted on what he gets to experience in life because of his condition is hard to swallow. Everyday we learn something new.

We have said this before, but Erin and I continue to be blown away by the generosity of our friends and family. And again I want to issue a sincere thank you to each and everyone of you. We could not do this without you.

Life. Is. Good.

The Berger Family

shunt life

It's wild to think that a week ago we were in the PICU and now we're home, trying to settle back into routine. I think the mental and physical exhaustion has finally caught up with us. However we are inspired to push forward through each act of kindness. This tired mama is particularly grateful for your meals right about now!

Shea had a great weekend consisting of laughing out loud for the first time and removing his bandage. Thank you auntie Amanda for coming to the rescue for this! Pieter and I weren't terribly excited (as you can imagine) about the idea that we had to remove it ourselves and see what damage was done. Grateful for friends who are more like family, and in this case one who happens to be surgical RN.

We had our first follow up with Dr. Muhonen and Shea is looking good! He had another ultrasound done which showed that the fluid is being drained and on its way to being at the appropriate levels which is all we can ask for. The doctor brought up several important reminders for us as we establish our new normal on how to best care for our little man.

The most important reminder is the understanding of how critical the 3 weeks following surgery are in looking for signs of of infection (internally and externally). Internally a major sign of shunt failure is a fever. In order to determine the fever's source, the doctor would have to tap into the fluid (=needle+Shea's head). That said, we are doing our best to stay away from large crowds and of course keep up the hand hygiene. This will get better once we get past the next few weeks, but will always be on our radar. Externally, the surgical site is at risk of infection. The doctor was quick to mention an increased risk of this if exposed to pets (i.e. petting a dog then touching Shea or dog licking his wound). I think it's safe to say Pieter and I will hold off on getting a dog anytime in the near future!

Dr. Muhonen educated us on how the shunt operates in our baby's head. The shunt flow rates are controlled externally through a magnetic dial that simply is applied externally over Shea's head... Incredible. The one complication on day to day life is keeping our little man free of magnetic fields and therefore free of adjusting his shunts flow rate by accident. Our doctor was quick to explain that ipad cases are becomeing an issue here as most iPad cases are magnetically controlled. Many mothers will hold their baby with a shunt and read from an iPad not realizing what is actually occurring. All fun items to look after.

Overall, looking at the big picture, Shea is thriving. He seems happier than ever, which could very well be the truth after relieving some pressure! We await the follow up testing ordered by the genetic specialist but as for the neurosurgeon we better not see him again until next months follow up appointment!

Love and hugs,

Erin, Pieter and Shea

one day at a time

Daddy's back... Shea, what a dude...

Taking it in stride day by day has been the mantra around our home this week. Sometimes it's been hour by hour but we have managed to focus on the little things to get us through. As we continue to look for answers on how much the hydrocephalus might effect Shea's body and potentially mind, it cannot touch his heart, and it cannot touch his soul. No matter what comes next in life we will celebrate that fact everyday moving forward.

I'm not going to lie, today was a big day. Before we understood about the severity of the hydrocephalus (Monday morning at 8:30am); before we understood we would be taking our son into brain surgery (Monday morning at about 9:00am); before we spent the night in the PICU at CHOC on Tuesday; we had always had an appointment for Thursday March 3rd at 1pm with a genetic specialist to follow up on a concern issued by our Neurosurgeon to better understand if the hydrocephalus was linked to something bigger, potentially a syndrome. The hydrocephalus was supposed to be checked as a formality and the genetic specialist was where our main concern was as late as early Monday morning. Funny to think that brain surgery on our 10 week old was the least of our concerns is ironic at best...

We enter our appointment today with our shields up preparing for the worst however are met with some good news. After a thorough 90 minute investigation, we are informed that Shea is simply one healthy little dude. A follow up appointment will take place to analyze a slew of blood work so we are not out of the woods yet. However, the specialist initial take is met with a huge breadth of fresh air. Two very happy parents leave the hospital with their smiling newborn, how it should be right?

We have a long road ahead and we won't get final lab results till June, but hey one day at a time... As my wife always says,"we got this..."

I have to include a quick story of a conversation that took place between Shea's 3 year old cousin Cecilia and his aunt Sarah:

Cecilia: mommy, is Jesus in water?

Sarah: (choosing the baptism route) yes, Jesus was baptized just like you? And you know who is going to be baptized soon?

Cecilia: who?

Sarah: baby Shea.

Cecilia: just like big baby Jesus?

Sarah: yes, just like big baby Jesus.

Cecilia: so mommy, is big baby Jesus also in Shea?

Sarah: yes, sweetie, yes he is...

Again, thank you for all of your thoughts and prayers. We are one blessed family.

The Bergers

home

  Shea got Dr. Muhonen's stamp of approval to go home! Both Dr. Muhonen and the intensivist (Dr. Cook) remarked about how well Shea has been healing.  We were educated about signs and symptoms to look out for in the coming days and will follow up with Dr. Muhonen next week. After all, as Dr. Muhonen left the room he reminded us "we're married now." Again, we are lucky to live a mile away from thee specialist Shea needs.

Pieter and I couldn't wait to hold our little man without setting off the monitors! We packed up our belongings, soaked up some more baby Einstein and got wheeled out via wagon. We couldnt wait to leave, but found it difficult to say goodbye to our neighbors. No one should have to live what we have gone through, however we are hardly alone or the only ones. It is families such as the McKimmeys (family friends) who we were fortunate to share our walls with who helped give us strength to take one day at a time and show us how to completely love your children. Talk about a blessing!

Seamus is so loved. We were excited to go home, but completely overwhelmed (once again!) by the thoughtfulness at our doorstep! Thank you. Thank you for reminding us we are not in this alone. We have the absolute best family, friends, neighbors and teammates. Your prayers have truly let us be in the moment for Shea. I'm not sure how such a tiny human can have brain surgery one day and be home the next, but he has done it and continues to smile.

Love and hugs.

Erin, Pieter and Shea

smiles

We got smiles! Shea's personality started shining through last night. He finally wanted to eat and that he did. We knew he was feeling better when he screamed at  the burping breaks during his feedings. Hangry. Shortly after we were back to smiles and the occasional coo. He slept well for being in the hospital and gave us a 3-hour stretch!

He has had some low grade fevers, but nothing to be alarmed about at this time. He's not to sure about being attached to so many cords, but the nurses don't seem to mind coming in to fix them for our little man. He has a crib fit for a king!

Now we wait for rounds to see if there's a chance of being discharged! Prior to surgery, the doctor had recommended we follow up with a genetic specialist to determine if there is anything else going on. We will be meeting with her (Dr. Bocian) tomorrow.

Continued prayers for our latest adventure.

Love and hugs.

Erin, Pieter and Shea