October 29, 2014
Today is world stroke day... I have been amazed at the damage that a stroke can cause, I learn more on a daily basis, not through books but by studying my son. It's been six and a half years since Josh had his stroke (at 3 months); it feels like 20.
Last week we had an EEG (sleep deprived - which in my old age takes a while to recover from... even though the sleep deprivation was for him). The results were "there's a LOT of activity going on in there". Apparently he's having a lot of seizures in the site where the stroke happened, they figure there is a few different types of seizures and are occurring frequently. (There is much for me to learn in regards to this new information so pardon my lack of knowledge right now).
Why is Josh not sleeping? Seizures... not fear, not worry... seizures. Why is he not catching up developmentally? Seizures... The diagnosis is 'Epilepsy' which is a term given for someone who has had two or more seizures without known cause (ie. a fever or fall or illness). This was new to me, I had always thought that epilepsy was a disease that you were born with. Anyway, the reality for us as a family hasn't really changed that much; he's been having these seizures for who knows how long, but the label is a little scary.
HOWEVER... and this is big. We got answers! I have been thinking that I am crazy, worrying that I am for some reason seeing things in him that are totally not there, but the truth is now that we have a diagnosis I can rest a little easier knowing that we are on course to get him the help he needs. That help started in the form of new meds, and guess what? He started the meds 6 days ago... and we are on day 5 of sleeping ALL NIGHT LONG!! You have no idea how this little bit of change has and will impact our family. I feel like a cloud has lifted and though it's not fully light yet, the sun is shining through.
The meds should help in many ways, ways that excite me and have me hoping once again for dramatic changes and miracles in his life. One of the biggest changes is that we now have a neurologist following him, one who specializes in both strokes and seizures. This is great news given we have not yet had one specific doctor following up with him before.
Thank you all for your prayers last week, and for your patience in waiting for an update.
Please, take the time to learn about the symptoms of stroke, the help options for those of you who know someone affected by a stroke; you can use the link to the pediatric stroke page on this blog or just Google it. It takes a few minutes but it can save a life.