Questions and Answers

This is what we know and honestly it is not much. Many of you saw the post on Facebook about "cerebral edema". It was meant to reach out to our fellow hemi parents for advice and clarity. Thankfully, we have had two incredible mommas helping to translate and ease our frustrations a bit.  I cannot express enough how thankful we are for the extended family we have through the Hemisperectomy Foundation. It was a long evening Monday and has been a long week for us, but to explain we will go back a bit and catch up.
Ayden has been loving school and making great gains in Kindergarten, we have even dabbled in potty training! He has taken a natural interest in books and his conversational speech is coming along very well. After school he can tell me some things about his day and he has really been growing up. We are so proud of him! I haven't posted much here because we all stay pretty busy and I even contemplated ditching the blog as the months have passed because I am so bad at updating it.
I never wanted this to be a bad news blog, but when things come up writing and explaining here instead of individual conversations, texts, and messages makes life easier for us all.
Several weeks ago Ayden starting some strange behaviors, he complains about his head and ears,  he is getting angry and biting at times, and then there are some movements (seizure like) that we have tried to ignore and shrug off. He is just growing, its the weather there must be a front moving through, and all the classic ideas we hold on to when we want to ignore reality. The reality is Ayden has started seizing again sporactically for the past few months and now within the week it happens mutliple times a day. The drastic change this week along with additional sleepiness and clinginess alarmed us and put us on high alert. Monday he vomited for no appearent reason and was fine afterwards...To an outsider this sounds pretty simple childhood stuff - The kid threw up so what? Probably just didn't let his lunch settle or has a bug. Not Ayden. I worried about a shunt failure so we rushed to Parkview and called the our pediatrician, a man we have only seen 2 times in his office over the past 2 years. Truly, Bub doesn't get sick and we always wait it out over rushing anywhere with him if he does. A CT was ordered and we headed to the pediatrician and WAITED... that is pretty much what we are doing now. The CT didn't lead anyone to believe there is hydrocephalus or that the shunt was failing, but something "concerning" in his left hemisphere was found. I never so badly wanted my kid to have an ear infection, but he was clinically healthy. Because he was "healthy" we have to ask why his head is hurting and he is seizing at an increasing rate. If he were a typical epileptic child we could play with medicine; we might get his levels checked to see if it has dropped, do a blood draw to find another cause like infection, call our neurologist to see her or change something medication wise. None of that was done, because it doesn't work for Ayden. I remember the relief in the face of our neurologist when she found out we still had surgical options in 2012, because in her words the medicines have never really helped. While our pediatrician offered to admit him and do a spinal tap to rule out the HSV flaring up or meningitis, he also knew that I didn't want any of that unless it was really neccessary. He and the ID team at Cleveland decided neurosurgery needed called. We left Monday with the doctor's cell phone number and an agreement to bring him in if we changed our minds or worried.

 And so that is where we are at currently. We have an appointment in Cleveland on Friday with our neurosurgeon. We don't have any answers...We have watched a perfectly "healthy" little boy wake up just a few hours later status, lost in a constant seizure, four times in his little lifetime. Twice it has been the HSV and twice pressure on his brain. It is this fear that terrifies us and the idea of losing any part of our healthy little boy to seizures that is driving our efforts this week. Again, we don't have answers so we can't tell you anything...There is no scoop. Bub is still smiling, still laughing, still playing, and otherwise HEALTHY. So "How is he?" and "Is he feeling better?" are questions hard to answer. Prayers for answers and signs to help guide the doctors in the right direction. Afterall, our son doesn't run fevers or show clinical signs of illness even when he battles some of the worst. What makes him special his raised eyebrow, silly smirk, and his dancing that is what we plan to enjoy now while we wait. We hope to have some answers on Friday and prayers are all we can really "do" right now. Again, we appreciate the concern that people have shown. Prayers are appreciated and never taken for granted.
The Hoffmans