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