Here comes the sun, and I say It’s alright

Little darlin’, the smile’s returning to their faces Little darlin’, it seems like years since it’s been here

So, it’s been 6 months since I last updated the blog. I have thought about it  so many times, but like I said, I’ve become superstitious.. Not just a little stitious. Frankly, I didn’t want to jinx us.  I’m not going to bury the lead here, things have been great. Max has had ZERO  seizures since surgery. We are coming up on a full year of seizure freedom. This is something that was NEVER on the table for us. Our goal was always palliative with hopes of lightening his seizure burden.  Pre surgery, Max was having hundreds of seizures (many subclinical- not showing up symptomatically to us but still firing away, nonetheless).  When Max and I followed up with the Neurosurgeons in Texas at 3 and 6 months, we were cautiously optimistic with our results but still had quite a lot of trepidation.  The Doctors were an interesting mix of those two sentiments as well. One of our doctors said that he had a good feeling that this tuber was “IT” and what we had needed. The other one is a little more cynical and said that he was glad we were proving him wrong, but he didn’t think it would stick.  They make a great team because they are both brilliant but personality wise, they are foils of one another.  I just hope we keep proving him wrong- and for what it’s worth he does too. 

  Matt recently took Max for  his very first post op  overnight EEG and it was clean!  He has NEVER had a clean EEG.  He was SO excited to call me and tell me after rounds. Our local epileptologist gave us the green light to start weaning one of Max’s medications. We’ve been working on that. If things continue as they have been, we’ll do an ambulatory EEG in September and maybe look at starting to wean another medication. This is also something that we never even entertained. Our goal has always been to  make things manageable. We just wanted to get Max (and Frankie) closer to a regular quality of life where we weren’t living crisis to crisis. It was truly never even on our radar to have a reprieve but we have and it’s been amazing .. but if I am being frank- weird. Our normal mode was fight or flight for so long, that it feels strange. I somehow feel anxious about not being anxious.         

We’ve been trying to  just enjoy very typical things and trying to assimilate back into society.  We adopted a puppy from a rescue and he’s been keeping us busy. We’ve been settling into our house and enjoying hanging out with friends and family.  Next week we’re going camping, something we wouldn’t have been able to try a year ago. Max and I are headed to Texas right after we get back for some imaging and a one year check up with our team there. I am looking forward to hearing what they have to say and he’s looking forward to finally seeing the Galapagos exhibit that the Houston Zoo has been building for two years. We don’t know if this is going to stick, but we’re soaking up every moment of it.