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.

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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!

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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. 

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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

       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. 

hope

imageThe 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.

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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

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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

image 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

image.jpeg 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.

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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... image

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.

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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

the 1st hour

My man Shea. Daddy is taking over this post... We arrive in recovery to a screaming little dude with tubes connected to all parts of his body. Not the easiest moment in our short career of parenthood. Nonetheless, once Shea gets into mamas arms, he is instantly calm. Thus adding to the reoccurring theme in the process of how incredibly amazing my wife has been... A proud husband.

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Our two surgeons come in and explain how well Shea did and that the surgery was a success. It is remarkable to already see the shunt doing its job. Shea's soft spot has reached normal levels. Putting all our cards on the table, the shunt was installed to a complete success. The biggest thing we need to pray about is that the shunt does not take on an infection.

We have been moved to the Pediatric Intensive Care Unit, where we will stay with Shea while he is monitored overnight with frequent neuro checks. While he is still not himself, he is easily calmed in our arms. We can only imagine what his mind is going through as his life with a shunt begins. Erin and I can't wait for him to be ready to eat or smile.

We cannot express enough how incredible the outpour of generosity has been. You better believe we're feeling the love and our little guy is going to get across the finish line because of all of you.

Please keep him in your prayers.

A lucky husband and father, Pieter.

game time

img_1115 Shea continues to lead us through this whirlwind, showing us the ropes. He woke up as pictured above, smiling ear to ear. After a night full of snuggles, bath time (where we didn't dip, but drenched him in holy water from Lourdes), and prayers, he slept like a champ. In pre-op, he fought through hunger pains and fell asleep in mommy's arms until heading off to surgery.

Pieter and I continue to be blown away by everyone's generosity and thoughtfulness. The cards, texts, goodies and meals make us feel so loved. It's no surprise the nurses adore our little dude and CHOC has made us feel right at home. It certainly helps seeing familiar faces left and right.

Pieter and I just heard all went well and will be joining him in recovery. Stay tuned.

Love and hugs. Erin, Pieter and Shea

pray for shea

"We cannot direct the wind, but we can adjust our sails." - unknown

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Our little family has been showered with so much love over the past week as we have been hit with more news at each doctor's appointment. Priorities shift and love grows. We know and feel the love and support we are surrounded by, thank you. Seamus "Shea" is quite the trooper and he has shown us daily that everything will be okay.

Our sweet Seamus is full of so much life with his coos and smiles. He was born a few days past 40 weeks, 12/17/15 with a fairly simple delivery.  Our little man squeezed his way through the birth canal, coming out with a hematoma on top of his head. At Shea's 2-month appointment, his hemotoma prompted our pediatrician (Dr. Mody) to order an ultrasound of his head and instructed us to follow up with a pediatric neurosurgeon (Dr. Muhonen). Incidentally, the ultrasound revealed hydrocephalus. He was not and still is not showing any signs or symptoms of it because the fluid simply found it's own path and took over new territory, without his head becoming enlarged. It turns out the hematoma is not a big deal and should go away in time, but the hydrocephalus must be addressed.

Shea had an MRI of his brain this morning, which of course, he was wide-eyed enjoying his experience and making the techs laugh throughout. We then followed up with Dr. Muhonen to put together a plan. So, here we go: Shea will be going for a VP shunt tomorrow morning at CHOC.  We will be in the PICU for monitoring following the surgery. This should relieve the additional pressure from his brain and drain the fluid. He will have a VP shunt in place for his lifetime, which will on average be replaced and/or revised about 10 times in his life. He will frequent the neurosurgeon's office for follow ups and MRIs from here on out, but are thankful to live a mile away from the best of the best physicians.

We ask for your ongoing prayers as we tackle this next step. We know we can handle it and be there for our little man, and that is possible because of all of you. We trust in God's plan for Shea and our role as his parents to make sure he has the best of care and great life.

Love and hugs,

Erin, Pieter and Shea