
Enjoying a quiet moment with Reesey. He begs for her to sleep with him all night. Some day, big guy. Hopefully, some day.
Creating visible change. Connecting the dots of life. Communicating to build bridges.

Enjoying a quiet moment with Reesey. He begs for her to sleep with him all night. Some day, big guy. Hopefully, some day.

This visit to Dreamland is brought to you by the Letter H.

Something touched me with this book and I had to have it this weekend. For Reese someday. Or maybe for me… Been thinking about Reese’s surgery a lot. How can we not? Good news (if ever there was any) we have a date!
Things feel very official now. We have a surgery plan and we know what everyone has to do. Now we just have to hope Reese holds up her part.
and yes, I have to pause and revel in one side note — Our doctor called us “super parents”. Said she has to always being her A game when it’s us. I realize I am bordering on psycho mommy many times but I have to say if there is any upside to all our agonizing is that if an experienced neurologist thinks we are SUPER then I guess we have done our homework and probably can feel good about our decision. As good as can be anyway, until reality sets in. On to the details!
Starting mid-Feb, for 6 weeks
We will start stepping down off her steroids, the one medicine that has protected her from seizures. Ideally she will stay healthy and stable and we will get to control the process of going into the hospital, etc. Without the protection from the steroids, any cold or sickness could trigger the seizures, which just means we are heading into the operating room a little earlier.
First of April
If we are all clear still after 6 weeks, we will get admitted and begin the first phase of surgery, Intra-operative EEG. Don’t look it up if you have a weak heart or stomach. She will have over 100 electrodes implanted directly on her brain, yes her skull is cut open. We then wait.
Hopefully it isn’t too long from that point and we have accurately predicted when she will have a seizure. The EEG will capture the data the doctors need to pinpoint where and what to remove.
This is MAJOR surgery. No bones about that. They told us she will require lots of blood, then we close her up and see if it worked. They will completely suture her up, we’ll sit 4-5 more days and then go home.
It feels surreal and I know we will go through so many emotions in the next 2 months. So we thank you now for your patience with our no doubt insane behavior at times.
I think that is why once again, Dr. Seuss has figured out an easy way to say how we feel. And I can’t believe I never knew this one before this week. Seems my timing to the book store was perfect. Glad D and I went Monday. Here’s hoping I never have to share it with my sweet girl.
Maybe it’s me finally letting go of my Peter Pan complex (inherited from my father and his “You’re only as old as you feel” philosophy), but turning 35 has been a big deal for me. I’ve been seeing someone new in the mirror.
It’s all in the eyes. The Norwegian crows feet are beginning to make their presence known, and staking claim to the corners of my eyes where they meet my grinning cheeks. And no I don’t blame this on an incredibly hard year – a year that no doubt is the hardest of my life. There is really no reason to lay blame at all. Instead, I like to consider all this “age” as proof of many good times.
I am fortunate to laugh a lot. Chuckles, giggles, chortles and guffaws. I see my lines as memories for all the fun. Like Mater who never fixes a dent, I don’t plan on getting rid of this proof of 35 years of laughs.
I have always been surrounded by jokesters and pranksters, those with witty sarcasm and slap-your-knee one-liners. And of course, I now have a daily dose of little boy silliness. From every point in my life I can get lost in my laughing memories. So many of you are to thank for it all. So thank you for the laughs, and the memories.
Well, now that I think of it…. Maybe I should be blaming YOU guys after all! 😉

Mental note – for the REAL accomplishments