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)